What a summer this has been. I decided after three years of living in terror that I would have a double mastectomy with immediate reconstruction. I was hardly prepared for the change, let alone the pain and trauma I experienced. I am still not sure I can say "I'm glad I did it". But, I feel grateful that my risk of both a recurrence or another primary breast cancer has been significantly reduced! I think if I would have known before hand what difficult these surgeries have been...I know I wouldn't have done it. Maybe my ignorance was a blessing is disguise.
For most of my teenage and adult life I have needed a breast reduction. After treatment for breast cancer I also needed reconstruction to even out the size of my breasts. After much deliberation with my oncologist, my surgeon and my plastic surgeon...We came to the conclusion that If I was going to have reconstruction and a reduction....why not take out all the breast tissue and build from the ground up. I have truly been living in terror of getting caner again. Anyone who has had it can testify about the fear that lingers in the back of your mind and strikes at times with the greatest of force. The fear can be immobilizing.
Although I realize that by having bilateral mastectomies has not reduced my risk of a distant recurrence, I feel like I have done everything I can possible do. I also had a hysterectomy with ovaries this past February. By not having ovaries also reduces my risk of cancer. It has been a hard year on my body. I have one more surgery to remove the spacers and put in the final implants. I am dreading it...trying to block it off. But I know I've got to do it!
There are so many things I want to write about, but I need to get some sleep! Goodnight.
Saturday, January 30, 2010
Thursday, January 28, 2010
Never Give Up, Never Surrender!
It turns out I have quite a developed opinion regarding insurance. I think this is probably the case for most people who have encountered an expensive illness.
I thought I'd explain my philosophy so people might see why I'm so adamant about getting the in-network exception for the rest of my reconstruction reinstated.
There is only one number I care about in regards to my health insurance--the maximum out of pocket my family has to spend. It's a sure bet we'll meet it this year, as we have every year since I've gotten the bc diagnosis.
This amount is several thousand dollars--roughly the cost of a Hawaiian vacation for my husband and me.
We're happy to have coverage and happy to pay what we owe on time. But I will not pay one dime more.
In appealling this latest goofiness, I have heard too many times that I can just use our out of network benefits to finish up the work. This would trigger a whole new limit, and would mean we would pay 20% instead of 10% and there would be no caps for reasonable and customary charges--so basically, sky's the limit in addition to the in-network maximum that we will still meet.
There is no way I am going to have my family pay for two tropical vacations in one year that we will never take.
If there is not a local doctor who performs the service, our insurance allows for using a doctor who does the work and will cover that at the in-network benefit level even if they are not in-network.
Almost all plastic surgeons who do a lot of DIEPs don't contract with insurance companies as a general rule, and there is no local doctor who can do a DIEP, so getting an in-network exception is the way I have to go.
And I won't give up.
I thought I'd explain my philosophy so people might see why I'm so adamant about getting the in-network exception for the rest of my reconstruction reinstated.
There is only one number I care about in regards to my health insurance--the maximum out of pocket my family has to spend. It's a sure bet we'll meet it this year, as we have every year since I've gotten the bc diagnosis.
This amount is several thousand dollars--roughly the cost of a Hawaiian vacation for my husband and me.
We're happy to have coverage and happy to pay what we owe on time. But I will not pay one dime more.
In appealling this latest goofiness, I have heard too many times that I can just use our out of network benefits to finish up the work. This would trigger a whole new limit, and would mean we would pay 20% instead of 10% and there would be no caps for reasonable and customary charges--so basically, sky's the limit in addition to the in-network maximum that we will still meet.
There is no way I am going to have my family pay for two tropical vacations in one year that we will never take.
If there is not a local doctor who performs the service, our insurance allows for using a doctor who does the work and will cover that at the in-network benefit level even if they are not in-network.
Almost all plastic surgeons who do a lot of DIEPs don't contract with insurance companies as a general rule, and there is no local doctor who can do a DIEP, so getting an in-network exception is the way I have to go.
And I won't give up.
Sunday, January 24, 2010
Having Troubles Getting to Second Stage
Remember when I said "peer to peer review" is the phrase you need to know if your insurance rejects your attempts for an in-network exception for DIEP reconstruction if it's not offered locally?
Well, you should also know insurance might try screwy things to keep you from getting this review, which involves their medical director chatting with your plastic surgeon.
Obviously, if that were allowed to happen I'd have a much higher chance of getting the decision overturned than if I and my dr's office wrote a letter, which the insurance co answers by letter in two weeks.
Having their medical director actually speak to my doctor seems imperative in this case, since the director thinks that I can get the second stage of a DIEP reconstruction in my town, which is simply not true. In my opinion, this person is in dire need of some education about the differences in breast reconstruction procedures after a mastectomy.
It's not like I'm asking for an elective boob job, after all.
Anyway, there are two issues that are bugging me about this.
1. When I call to get information about it, I'm told this is strictly between the dr's office and the insurance, though it affects me, the patient. They never let the patient speak with the medical director or any of that staff about the decisions. Apparently, they don't like to let the doctors speak to this person either.
2. The insurance company is saying my only line of appeal now is the letters because there is a 10-day window for asking for a peer to peer review. I have documentation that shows we did this, but they are saying that the window starts from when they made the decision--8 days before they put the decision into a letter and mailed it (a couple more days) to my dr's office. Naturally, my question is "How many, if any, peer to peer reviews do they even grant if this is their procedure?"
Now I'm left with appealling the craziness of their peer to peer process on these two fronts. What's so frustrating about this is it should be a no-brainer for insurance to approve an extension of the earlier in-network exception I had for all three stages of the DIEP back when I started this process. Those agreements come with an expiration date for some not reflective of real life reason, and that's why my doctor applied for the extension.
Trust me, I wanted to wrap up all three phases of this DIEP process as quickly as possible (usually that's first surgery, second surgery three months later and final office work two or three months after that). It would have been cheapest and I would have been even by now, but the reality of life dictated that I needed to wait to see if my new boob would soften up a little and fall a little so it would look more natural.
I hate to wait, but I waited. But I didn't know that when I was ready to move ahead again, I'd have this stupid problem.
I'll keep you posted.
Well, you should also know insurance might try screwy things to keep you from getting this review, which involves their medical director chatting with your plastic surgeon.
Obviously, if that were allowed to happen I'd have a much higher chance of getting the decision overturned than if I and my dr's office wrote a letter, which the insurance co answers by letter in two weeks.
Having their medical director actually speak to my doctor seems imperative in this case, since the director thinks that I can get the second stage of a DIEP reconstruction in my town, which is simply not true. In my opinion, this person is in dire need of some education about the differences in breast reconstruction procedures after a mastectomy.
It's not like I'm asking for an elective boob job, after all.
Anyway, there are two issues that are bugging me about this.
1. When I call to get information about it, I'm told this is strictly between the dr's office and the insurance, though it affects me, the patient. They never let the patient speak with the medical director or any of that staff about the decisions. Apparently, they don't like to let the doctors speak to this person either.
2. The insurance company is saying my only line of appeal now is the letters because there is a 10-day window for asking for a peer to peer review. I have documentation that shows we did this, but they are saying that the window starts from when they made the decision--8 days before they put the decision into a letter and mailed it (a couple more days) to my dr's office. Naturally, my question is "How many, if any, peer to peer reviews do they even grant if this is their procedure?"
Now I'm left with appealling the craziness of their peer to peer process on these two fronts. What's so frustrating about this is it should be a no-brainer for insurance to approve an extension of the earlier in-network exception I had for all three stages of the DIEP back when I started this process. Those agreements come with an expiration date for some not reflective of real life reason, and that's why my doctor applied for the extension.
Trust me, I wanted to wrap up all three phases of this DIEP process as quickly as possible (usually that's first surgery, second surgery three months later and final office work two or three months after that). It would have been cheapest and I would have been even by now, but the reality of life dictated that I needed to wait to see if my new boob would soften up a little and fall a little so it would look more natural.
I hate to wait, but I waited. But I didn't know that when I was ready to move ahead again, I'd have this stupid problem.
I'll keep you posted.
Thursday, January 21, 2010
Anniversaries
This month I celebrate being cancer free for three years. This past August, my husband and I celebrated 10 years of marriage.
Each is an accomplishment, and taken together, they are a sign that my little corner of the world is doing pretty well.
Getting a big disease like cancer can wreak havoc on a marriage. A statistic I saw recently said spouses are eight times more likely to leave if this brick comes through the window.
It's a big deal, no doubt, and I see now why it's included in traditional marriage vows.
I'm just very happy we've defied the odds. I think it helps that we were friends for many, many years before we got married. Honestly, I have trouble remembering a time before L. was in my life. Just as it seems like I've been a mom to S. forever.
Cancer has come, and hopefully gone, but it has changed our lives forever. Sometimes I think it's moved us ahead on the continuum of coupledom. It's like we're much older than we actually are and have covered so much more ground than we actually have. I feel we're like my grandparents and older than my parents in some ways.
It's a weird feeling, but a good one in that I know L. gets it. He gets that we will always have to worry about having insurance for the family. He gets that I am not crazy when I wonder aloud about ailments I've noticed. And he'll push me to get things checked out, because he wants me around for the family as much as I want to be around for them.
This all brings me to having my wedding ring redone recently--the original didn't fit after I gained weight from cancer treatment.
I could look at this new ring as just fixing more of the collateral damage, but I've decided to see it as a marker of what we've been through and a promise of many more beautiful miles to explore--together, as a family.
Each is an accomplishment, and taken together, they are a sign that my little corner of the world is doing pretty well.
Getting a big disease like cancer can wreak havoc on a marriage. A statistic I saw recently said spouses are eight times more likely to leave if this brick comes through the window.
It's a big deal, no doubt, and I see now why it's included in traditional marriage vows.
I'm just very happy we've defied the odds. I think it helps that we were friends for many, many years before we got married. Honestly, I have trouble remembering a time before L. was in my life. Just as it seems like I've been a mom to S. forever.
Cancer has come, and hopefully gone, but it has changed our lives forever. Sometimes I think it's moved us ahead on the continuum of coupledom. It's like we're much older than we actually are and have covered so much more ground than we actually have. I feel we're like my grandparents and older than my parents in some ways.
It's a weird feeling, but a good one in that I know L. gets it. He gets that we will always have to worry about having insurance for the family. He gets that I am not crazy when I wonder aloud about ailments I've noticed. And he'll push me to get things checked out, because he wants me around for the family as much as I want to be around for them.
This all brings me to having my wedding ring redone recently--the original didn't fit after I gained weight from cancer treatment.
I could look at this new ring as just fixing more of the collateral damage, but I've decided to see it as a marker of what we've been through and a promise of many more beautiful miles to explore--together, as a family.
Sunday, January 17, 2010
Follow the Money
$395--that's what the 30 minute "consultation" with the cardiologist cost. Unbelievable! Now I'm even more mad about the merry go round that doctors around here prefer to send cancer survivors on when they seek care.
And, more than the money, I resent the high cost of my time. That's worth something too. I have to fit any dr. appt. in around caring for my child and trying to work part time. I want one appt., actually in this case I only wanted one scan.
Instead I had to find time for two dr appts and two scans. And, to move ahead and find out what the odd feeling in my chest might actually be since it isn't my heart, my onc says I need to come in for an appt. with him!
Unbelievable.
I'll be checking out other onc options in the new week. Honestly from what I've seen, once you have cancer you inherit a part-time job keeping your healthcare and insurance working right, likely for the rest of your life. Let me stress this is non-paid and definitely not volunteer.
I'll keep you posted.
And, more than the money, I resent the high cost of my time. That's worth something too. I have to fit any dr. appt. in around caring for my child and trying to work part time. I want one appt., actually in this case I only wanted one scan.
Instead I had to find time for two dr appts and two scans. And, to move ahead and find out what the odd feeling in my chest might actually be since it isn't my heart, my onc says I need to come in for an appt. with him!
Unbelievable.
I'll be checking out other onc options in the new week. Honestly from what I've seen, once you have cancer you inherit a part-time job keeping your healthcare and insurance working right, likely for the rest of your life. Let me stress this is non-paid and definitely not volunteer.
I'll keep you posted.
Friday, January 15, 2010
Come on People Now
I saw the cardiologist, who said a muga scan gives a better left ventricle ejection fraction (lvef) number than an echocardiogram. So I needed to have one done.
I did. My number is 65, very good and where I was at before chemo. So that's all good.
Not so my love of the medical-go-round after you've had cancer. After finding out from another cancer blogger's post that the company that makes Herceptin tells you to have heart checks every six months for at least 2 years after you finish the drug, and knowing I hadn't had any followup like that and that I was having an odd feeling in my chest, I called my onc and asked for a muga scan so I could see where I was at.
The nurse called me back and got sarcastic/snippy like she has done every time I've requested a muga scan (even though they are considered standard procedure for people taking Herceptin). "And why do you think you need a muga scan?"
Lucky for her, I kept my answer brief and civil and included something about the pains I've felt in my chest. All of a sudden, things shot into panic mode and she said I should go to the emergency room.
No, but I would like the muga scan like the Herceptin people suggest so I can rule out heart issues as causing the odd feeling in my chest.
Instead, I was told to contact my gp and work through him. He ordered the echocardiogram because he said it was the best test. His nurse called a couple days later saying everything looked fine and my lvef was 48.
Hmmm, 48 is low. I told the nurse that and asked what the gp thought of the low number. She called me back and said he didn't know what to think, and that both he and the onc wanted me to see the cardiologist.
The cardiologist said muga is the best test, and yes, we're right back where I wanted to start in the first place.
I'm supposed to go for my regular onc checkup appointment at the end of this month. I'm going to get the bloodwork done in advance as per usual (and even try to get the tumor marker and the tamoxifen test added on), but I'm not sure I'll keep the onc appt.
When you live in a smallish town surrounded by smallish towns, finding a good doc is really hard. And I only know this now because I really need a fabulously good doc, or at least one that will not punt my concerns around so freely.
It seems part of my "new normal" (I hate that phrase!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) is having to go to at least 2 doctors whenever something comes up.
It would be nice if the ones I had to see would at least WORK TOGETHER!!!!!!!
I did. My number is 65, very good and where I was at before chemo. So that's all good.
Not so my love of the medical-go-round after you've had cancer. After finding out from another cancer blogger's post that the company that makes Herceptin tells you to have heart checks every six months for at least 2 years after you finish the drug, and knowing I hadn't had any followup like that and that I was having an odd feeling in my chest, I called my onc and asked for a muga scan so I could see where I was at.
The nurse called me back and got sarcastic/snippy like she has done every time I've requested a muga scan (even though they are considered standard procedure for people taking Herceptin). "And why do you think you need a muga scan?"
Lucky for her, I kept my answer brief and civil and included something about the pains I've felt in my chest. All of a sudden, things shot into panic mode and she said I should go to the emergency room.
No, but I would like the muga scan like the Herceptin people suggest so I can rule out heart issues as causing the odd feeling in my chest.
Instead, I was told to contact my gp and work through him. He ordered the echocardiogram because he said it was the best test. His nurse called a couple days later saying everything looked fine and my lvef was 48.
Hmmm, 48 is low. I told the nurse that and asked what the gp thought of the low number. She called me back and said he didn't know what to think, and that both he and the onc wanted me to see the cardiologist.
The cardiologist said muga is the best test, and yes, we're right back where I wanted to start in the first place.
I'm supposed to go for my regular onc checkup appointment at the end of this month. I'm going to get the bloodwork done in advance as per usual (and even try to get the tumor marker and the tamoxifen test added on), but I'm not sure I'll keep the onc appt.
When you live in a smallish town surrounded by smallish towns, finding a good doc is really hard. And I only know this now because I really need a fabulously good doc, or at least one that will not punt my concerns around so freely.
It seems part of my "new normal" (I hate that phrase!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) is having to go to at least 2 doctors whenever something comes up.
It would be nice if the ones I had to see would at least WORK TOGETHER!!!!!!!
Friday, January 8, 2010
Here's the Article I've Been Waiting For
Finally, here's an article about the value of adding an MRI and/or ultrasound to mammography for women with dense breasts. It's all here, and from my experience, it's all true. Ask your doctor if you have dense breasts and talk about a good screening program. As the article states, having dense breasts (common in young, premenopausal women) makes one six times more likely to develop breast cancer! That's huge.
Monday, January 4, 2010
Mammo Guidelines Hot off the Presses
These newest breast cancer guidelines are a little more in line with my way of thinking. They are separate from ones issued earlier and contradict those recommendations to wait until you're 50 and then screen every other year.
These say to start at 40, screen every year, and women with a high risk by way of BRCA mutation or dense breasts should add other tests, too.
I don't like that they throw dense breasts in there at the end and say we should have a mammogram and a sonogram.
I've had sonograms, and they just aren't practical for screening an entire breast. I'm convinced it's a money thing that stops experts short of saying women with dense breasts should get a mammogram and an MRI. I think that's the proper recommendation, but at least this is a little closer to it than what's been out there so far.
I'll keep harping on it and hoping for the best.
I'll keep you posted.
These say to start at 40, screen every year, and women with a high risk by way of BRCA mutation or dense breasts should add other tests, too.
I don't like that they throw dense breasts in there at the end and say we should have a mammogram and a sonogram.
I've had sonograms, and they just aren't practical for screening an entire breast. I'm convinced it's a money thing that stops experts short of saying women with dense breasts should get a mammogram and an MRI. I think that's the proper recommendation, but at least this is a little closer to it than what's been out there so far.
I'll keep harping on it and hoping for the best.
I'll keep you posted.
Sunday, January 3, 2010
What Does Aggressive Followup Look Like?
I started asking myself and my health care providers this question around the time chemo, radiation and Herceptin treatment were drawing to a close.
It's what everyone agreed I'd need, since I had grade three, multifocal and node and Her2 neu positive IDC (invasive ductal carcinoma).
Almost two years out from my 14 months of treatment, I've found it to mean bloodwork before my once every four month appointments with an onc. I feel it's more least we can do than aggressive.
Everyone has their own comfort level with scans, etc. after cancer treatment. I don't like them because of the cost, time and health risks involved, and I'd love a better way to know where one stands cancer-wise. But since there is no better way, and because job #1 for me is to stay healthy for my son, I prefer to use scans, checks and whatever else is out there to followup on an aggressive cancer.
I'm convinced that if my cancer comes back, it will be like a house afire. I don't want to catch something too late. That would suck so much.
Anyway, back to my point. I guess I've been slowly shaping my own aggressive followup plan. I know it's not right for everyone and some people might disagree with my style, but my concern is what works for me. I encourage all other cancer patients to find what works for them.
1. A mammogram couldn't detect my two 2.5 cm. tumors. Mammograms don't work as well on young women like me, because we often have dense breast tissue that a mammogram doesn't "read" well. So my annual check involves a mammogram (because my insurance makes me start there) and then an MRI on both breasts.
2. As part of my treatment, I'm taking tamoxifen for five years. Tamoxifen raises one's chances of developing uterine cancer. So I'm getting a yearly endometrial biopsy for at least the next couple years.
3. One of my chemo drugs is known to affect heart function. So is the Herceptin I took for a year. I'm getting yearly muga scans to keep tabs on my heart function that's dropped from the 60s to 48 after treatment and never gone back up.
4. I'm going to request the test to see if I'm an excellent, average or poor metabolizer of tamoxifen. This is said to be especially important for Her2 positive people because it can actually fuel a recurrence if you're a poor metabolizer. My insurance doesn't pay for this and my onc is only mildly supportive, but I think checking this out falls in the realm of aggressive followup.
5. I'm also going to ask that we do CA 27.29, the breast cancer tumor marker test, with my bloodwork from now on. My cancer didn't affect this marker, but there's no guarantee a recurrence or new cancer wouldn't act differently. I think aggressive means we follow the marker and then rule things out if it goes up dramatically.
6. That's it for now.
I'll keep you posted.
It's what everyone agreed I'd need, since I had grade three, multifocal and node and Her2 neu positive IDC (invasive ductal carcinoma).
Almost two years out from my 14 months of treatment, I've found it to mean bloodwork before my once every four month appointments with an onc. I feel it's more least we can do than aggressive.
Everyone has their own comfort level with scans, etc. after cancer treatment. I don't like them because of the cost, time and health risks involved, and I'd love a better way to know where one stands cancer-wise. But since there is no better way, and because job #1 for me is to stay healthy for my son, I prefer to use scans, checks and whatever else is out there to followup on an aggressive cancer.
I'm convinced that if my cancer comes back, it will be like a house afire. I don't want to catch something too late. That would suck so much.
Anyway, back to my point. I guess I've been slowly shaping my own aggressive followup plan. I know it's not right for everyone and some people might disagree with my style, but my concern is what works for me. I encourage all other cancer patients to find what works for them.
1. A mammogram couldn't detect my two 2.5 cm. tumors. Mammograms don't work as well on young women like me, because we often have dense breast tissue that a mammogram doesn't "read" well. So my annual check involves a mammogram (because my insurance makes me start there) and then an MRI on both breasts.
2. As part of my treatment, I'm taking tamoxifen for five years. Tamoxifen raises one's chances of developing uterine cancer. So I'm getting a yearly endometrial biopsy for at least the next couple years.
3. One of my chemo drugs is known to affect heart function. So is the Herceptin I took for a year. I'm getting yearly muga scans to keep tabs on my heart function that's dropped from the 60s to 48 after treatment and never gone back up.
4. I'm going to request the test to see if I'm an excellent, average or poor metabolizer of tamoxifen. This is said to be especially important for Her2 positive people because it can actually fuel a recurrence if you're a poor metabolizer. My insurance doesn't pay for this and my onc is only mildly supportive, but I think checking this out falls in the realm of aggressive followup.
5. I'm also going to ask that we do CA 27.29, the breast cancer tumor marker test, with my bloodwork from now on. My cancer didn't affect this marker, but there's no guarantee a recurrence or new cancer wouldn't act differently. I think aggressive means we follow the marker and then rule things out if it goes up dramatically.
6. That's it for now.
I'll keep you posted.
Wednesday, December 30, 2009
Moving Right Along
I decided to cancel the muga scan until I see the cardiologist. If he can give me a good reason for needing a muga to confirm or add something to the sonogram I got, then I'll consider another test. If not, I don't want to waste my time, money and health.
I personally don't think my low heart function is related to the odd feeling I'm having somewhere in my chest, but it looks like I have to have the heart appt. before I can get any further on checking the other out.
I mentioned to my primary care dr. that I'm still having lower back pain; I first saw him about this 20 months ago. It feels like it's mostly centered on the lower left side now and has been getting worse.
He suggested physical therapy as he did when I first saw him. I said I'd be happy if we move on to a PET scan to check the chest pain because it might be able to rule out anything going on with the bones.
He agreed that there's nothing ruling out bone mets at this point.
I also showed him a skin-colored bump on my left thigh that appeared shortly after I completed Herceptin (20 months ago). I've always kind of wondered if it's skin mets. I'd say it would be unlikely for it to appear so far away from the affected site, but once you get aggressive cancer at age 37, nothing seems impossible. The dr. agreed it's not likely, but to me that says "check it out." Or don't and live with crazy-inducing uncertainty.
So I have a punch biopsy in a few days.
I'll keep you posted.
I personally don't think my low heart function is related to the odd feeling I'm having somewhere in my chest, but it looks like I have to have the heart appt. before I can get any further on checking the other out.
I mentioned to my primary care dr. that I'm still having lower back pain; I first saw him about this 20 months ago. It feels like it's mostly centered on the lower left side now and has been getting worse.
He suggested physical therapy as he did when I first saw him. I said I'd be happy if we move on to a PET scan to check the chest pain because it might be able to rule out anything going on with the bones.
He agreed that there's nothing ruling out bone mets at this point.
I also showed him a skin-colored bump on my left thigh that appeared shortly after I completed Herceptin (20 months ago). I've always kind of wondered if it's skin mets. I'd say it would be unlikely for it to appear so far away from the affected site, but once you get aggressive cancer at age 37, nothing seems impossible. The dr. agreed it's not likely, but to me that says "check it out." Or don't and live with crazy-inducing uncertainty.
So I have a punch biopsy in a few days.
I'll keep you posted.
Tuesday, December 22, 2009
Taking Heart
The news out of the annual breast cancer meetings is that the A of ACT chemo and Herceptin are each bad for the heart.
It's enough of a problem that some doctors recommend a switch from the A to another chemo drug combination before Herceptin.
Over the last few months I've noticed some odd feelings in my chest--like a rubber band snapping--about once a day at no particular time. It just feels odd, so of course it got me wondering, "Could something be up?"
I read "But Doctor I Hate Pink's" blog about having read the dosing info for Herceptin (which I've never done) and found that the manufacturer recommends every six month followup on the heart for at least two years after Herceptin treatment ends.
So I decided to report my chest pains and get a followup test. I had one after finishing Herceptin, but none since, even though that last muga scan showed my left ventricle ejection fraction (lvef) at 48 (50 is lower level of normal; better is 55 and up).
I'm still at 48. Before chemo et. al. my lvef was in the 60s, so I'd say 48 is a fair drop. Some of this heart function loss is supposedly recoverable, but it doesn't look like it's going that way for me, at least not almost 2 years past ending Herceptin and chemo treatment.
They did an ultrasound on my heart to see where I'm at; now I'm getting a muga scan to make sure the number is correct and then going to see a cardiologist for a consult.
Swell--is there a doctor and specialty that I'm not going to get to visit on this cancer parade?
I'll keep you posted.
It's enough of a problem that some doctors recommend a switch from the A to another chemo drug combination before Herceptin.
Over the last few months I've noticed some odd feelings in my chest--like a rubber band snapping--about once a day at no particular time. It just feels odd, so of course it got me wondering, "Could something be up?"
I read "But Doctor I Hate Pink's" blog about having read the dosing info for Herceptin (which I've never done) and found that the manufacturer recommends every six month followup on the heart for at least two years after Herceptin treatment ends.
So I decided to report my chest pains and get a followup test. I had one after finishing Herceptin, but none since, even though that last muga scan showed my left ventricle ejection fraction (lvef) at 48 (50 is lower level of normal; better is 55 and up).
I'm still at 48. Before chemo et. al. my lvef was in the 60s, so I'd say 48 is a fair drop. Some of this heart function loss is supposedly recoverable, but it doesn't look like it's going that way for me, at least not almost 2 years past ending Herceptin and chemo treatment.
They did an ultrasound on my heart to see where I'm at; now I'm getting a muga scan to make sure the number is correct and then going to see a cardiologist for a consult.
Swell--is there a doctor and specialty that I'm not going to get to visit on this cancer parade?
I'll keep you posted.
Monday, December 14, 2009
Important Stuff about DIEP Reconstruction
I've had appointments with seven plastic surgeons while researching my reconstruction choices. This is the really important stuff I've learned (it's related to the DIEP procedure, because I knew that's what I wanted once I had to have radiation and implants were no longer an option.)
1. Look for someone who has done a lot of the procedure you want (at least 100 a year is good). Ask to see photos of her/his work for the procedure you want. Ask to speak to people who have had good and bad outcomes with the procedure you want.
2. There are two surgery sites with DIEP--the abdomen and breast. Look for a doctor who works as a team with another equally qualified and accomplished doctor to do the work.
3. A DIEP flap is one-half of the fat and skin at and below the belly button and the corresponding vessels (picture your lower stomach cut in half lengthwise). If a ps says you don't have enough material to build a big enough breast to match, and she/he offers to add an implant later and you don't want that, keep looking to find a ps with a lot of practice in the "stacked DIEP" procedure. Here, they use both sides of your belly, two DIEP flaps, to rebuild one breast. There are also GAP, IGAP, SGAP and TUG procedures that use the buttocks, hips and thighs as donor sites. It's all about where you carry your fat. Your ps should be able to evaluate which of these is best. You want a ps who's done many of all these procedures so they are advising you based on what's best for your body and not what's easiest for them to perform.
4. With a DIEP doctors do microsurgery to reconnect blood vessels to support the fat and skin transfer; with a TRAM they remove a portion of the stomach muscle to provide blood flow to the relocated flap. A skilled ps who has done many, many DIEPs should never say "I can't promise you'll get a DIEP. If things don't work out, and if the vessels aren't good enough, etc., etc., I'll have to do a TRAM." If you hear this, keep looking for a more experienced ps. You should get what you ask for.
5. Most doctors remove a portion of rib in order to reconnect the vessels in your chest. A ps who has done a ton of DIEPs will be able to whittle away bone as needed and not remove an entire chunk of rib. Ask what they do about this.
6. While doctors don't remove any stomach muscle in a DIEP, less experienced surgeons entirely cut the muscle to get to the vessels. This weakens the muscle more than teasing the muscles apart to get the vessels but not actually cutting through the muscle--an approach more experienced surgeons take. Ask what they do about this.
7. This can be a very long surgery (mine was 9 1/2 hours for one stacked DIEP). Make sure your doctor runs heart tests to make sure you're healthy enough for such a long time in the OR.
8. If you're like me, you don't live near a medical mecca that features doctors with a lot of experience in DIEPs or other more complicated reconstruction procedures. If you can't get a DIEP in your local area, you can ask your insurance company for an out of network exception to go elsewhere and still pay in-network rates and have in-network benefits apply. You'll most likely still have to pay all travel charges (unless you have some fantastic coverage), but this might get you access to a ps who has the experience required to address your needs.
9. If you decide to go for an out of network exception, have your ps write a letter explaining what's needed and showing pictures. Also have a surgeon or ps in your local area network write a letter referring you to the ps you want to use. Have them state the service isn't provided locally and why it's something that you really need. I asked my breast surgeon because I really liked him. I also used him as my local DIEP follow-up surgeon, which you'll need if you travel for the procedure. Then also write your own letter, stating why the procedure you chose is the best one for you.
10. I can't think of anything else right now, but if I do, I'll put it here.
Good luck!
1. Look for someone who has done a lot of the procedure you want (at least 100 a year is good). Ask to see photos of her/his work for the procedure you want. Ask to speak to people who have had good and bad outcomes with the procedure you want.
2. There are two surgery sites with DIEP--the abdomen and breast. Look for a doctor who works as a team with another equally qualified and accomplished doctor to do the work.
3. A DIEP flap is one-half of the fat and skin at and below the belly button and the corresponding vessels (picture your lower stomach cut in half lengthwise). If a ps says you don't have enough material to build a big enough breast to match, and she/he offers to add an implant later and you don't want that, keep looking to find a ps with a lot of practice in the "stacked DIEP" procedure. Here, they use both sides of your belly, two DIEP flaps, to rebuild one breast. There are also GAP, IGAP, SGAP and TUG procedures that use the buttocks, hips and thighs as donor sites. It's all about where you carry your fat. Your ps should be able to evaluate which of these is best. You want a ps who's done many of all these procedures so they are advising you based on what's best for your body and not what's easiest for them to perform.
4. With a DIEP doctors do microsurgery to reconnect blood vessels to support the fat and skin transfer; with a TRAM they remove a portion of the stomach muscle to provide blood flow to the relocated flap. A skilled ps who has done many, many DIEPs should never say "I can't promise you'll get a DIEP. If things don't work out, and if the vessels aren't good enough, etc., etc., I'll have to do a TRAM." If you hear this, keep looking for a more experienced ps. You should get what you ask for.
5. Most doctors remove a portion of rib in order to reconnect the vessels in your chest. A ps who has done a ton of DIEPs will be able to whittle away bone as needed and not remove an entire chunk of rib. Ask what they do about this.
6. While doctors don't remove any stomach muscle in a DIEP, less experienced surgeons entirely cut the muscle to get to the vessels. This weakens the muscle more than teasing the muscles apart to get the vessels but not actually cutting through the muscle--an approach more experienced surgeons take. Ask what they do about this.
7. This can be a very long surgery (mine was 9 1/2 hours for one stacked DIEP). Make sure your doctor runs heart tests to make sure you're healthy enough for such a long time in the OR.
8. If you're like me, you don't live near a medical mecca that features doctors with a lot of experience in DIEPs or other more complicated reconstruction procedures. If you can't get a DIEP in your local area, you can ask your insurance company for an out of network exception to go elsewhere and still pay in-network rates and have in-network benefits apply. You'll most likely still have to pay all travel charges (unless you have some fantastic coverage), but this might get you access to a ps who has the experience required to address your needs.
9. If you decide to go for an out of network exception, have your ps write a letter explaining what's needed and showing pictures. Also have a surgeon or ps in your local area network write a letter referring you to the ps you want to use. Have them state the service isn't provided locally and why it's something that you really need. I asked my breast surgeon because I really liked him. I also used him as my local DIEP follow-up surgeon, which you'll need if you travel for the procedure. Then also write your own letter, stating why the procedure you chose is the best one for you.
10. I can't think of anything else right now, but if I do, I'll put it here.
Good luck!
Thursday, December 10, 2009
Smile Girls!
My plastic surgeon will speak to the insurance's medical person next week for the peer to peer review. I'm fairly confident she will get them to renew my out of network exception so I can finish up my DIEP work with her.
To help out the case, she's requested photos of the work so far so she can go into detail about what additional work needs to be done. I'm very glad she's asked for this information to make a stronger case, but I'm not thrilled with the idea of posing for pictures.
Don't worry, I have no intentions of posting them here or anywhere else!
I'll keep you posted.
To help out the case, she's requested photos of the work so far so she can go into detail about what additional work needs to be done. I'm very glad she's asked for this information to make a stronger case, but I'm not thrilled with the idea of posing for pictures.
Don't worry, I have no intentions of posting them here or anywhere else!
I'll keep you posted.
Wednesday, December 9, 2009
Peer to Peer Review Time
Turns out my insurance denied my out of network exception because they believe I can get DIEP stage II services in my town.
I invited the person who thinks this to come to my town, get that done and let me see it.
Of course they can't because there is NO doctor in this town who can do a DIEP. I pointed this out, but no one cared that such a simple and big mistake was screwing this up.
Insurance medical approvers are as invisible and untouchable as radiologists, it seems.
If this ever happens to you, the words you need to know are "peer to peer review." You need to have your doctor call the insurance's precertification office and request one of these.
Allegedly, this is much, much faster than the other option--appealling it myself. So it's back in my doctor's court.
I'll keep you posted.
I invited the person who thinks this to come to my town, get that done and let me see it.
Of course they can't because there is NO doctor in this town who can do a DIEP. I pointed this out, but no one cared that such a simple and big mistake was screwing this up.
Insurance medical approvers are as invisible and untouchable as radiologists, it seems.
If this ever happens to you, the words you need to know are "peer to peer review." You need to have your doctor call the insurance's precertification office and request one of these.
Allegedly, this is much, much faster than the other option--appealling it myself. So it's back in my doctor's court.
I'll keep you posted.
Monday, December 7, 2009
Denied for DIEP Stage 2
I wanted to fit in an appointment with my plastic surgeon before the end of the year so we could start discussing the second stage of my DIEP reconstruction.
But I found out from the office person today that my insurance company is denying my out of network exception.
Swell! I wish I could say I'm surprised, but I'm not.
So I get to call "them" tomorrow and try to get this straightened out. Since that's probably going to take more than one quick call, I've cancelled the appointment with my ps and will wait to start on round 2 until next year.
Here's the totally frustrating thing--it's not like I can pick up a phone and call the one person who can fix this. I will have to start with the 800 number on my insurance card and work from there.
PITA, PITA, PITA, PITA and I'm not talking pocket.
I'll keep you posted.
But I found out from the office person today that my insurance company is denying my out of network exception.
Swell! I wish I could say I'm surprised, but I'm not.
So I get to call "them" tomorrow and try to get this straightened out. Since that's probably going to take more than one quick call, I've cancelled the appointment with my ps and will wait to start on round 2 until next year.
Here's the totally frustrating thing--it's not like I can pick up a phone and call the one person who can fix this. I will have to start with the 800 number on my insurance card and work from there.
PITA, PITA, PITA, PITA and I'm not talking pocket.
I'll keep you posted.
Saturday, November 21, 2009
My Mammogram Comments
I've been waiting to weigh in on the new mammogram guidelines because I wanted to see where the conversation would go.
I'm disappointed, though not surprised, it hasn't yet made it past a clamoring for the status quo. "Give us back our mammograms and all will be well!"
Actually, the findings show that's not the case, especially for young women. Even more so for those younger than 40, a population that no one's looking to screen. And the group where breast cancer rates are growing the fastest.
Forget awareness, let's get specific in our goals and demands: Develop a viable breast screening modality that will work with young women's dense breasts, and give it to all women starting at 30.
The fact is, if I can get breast cancer at 37.5--someone who's healthier-living than most and who has no genetic risk factors (I had the test, so I know for sure)--anyone can.
There will be a lot of advice to women on how to proceed in light of the new guidelines, but here's my 2 cents. Ask the doctor who orders your mammogram to tell you if you have dense breasts (if the report doesn't indicate, have her/him go find out from the radiologist). If the answer is yes, ask for a breast MRI. This, not a mammogram, is the "gold standard" for young women with dense breasts. It's the best we have for now, but I'd love something easier, something better.
And as for breast self-exams--feel your breasts, know your body and tell your doctor when you think something is different or not right.
I could go on, but I think the Young Survival Coalition says it well in their press release:
"This current debate regarding the effectiveness of mammograms highlights the issues facing young women. While over 11,000 women under 40 in the United States are diagnosed with breast cancer annually, there is still no screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly worse than their older counterparts and the disease is often detected at later stages and is found to be more aggressive. Without access to proper and timely care, a woman’s odds for survival decrease.
Mammography has been found to be an ineffective screening mechanism for this population because of their breast density. Accordingly YSC urges all young women to be familiar with their bodies, know their own personal risk factors for breast cancer, be aware of the signs of breast malignancies and to promptly consult with their health provider if they have any health concerns."
I'm disappointed, though not surprised, it hasn't yet made it past a clamoring for the status quo. "Give us back our mammograms and all will be well!"
Actually, the findings show that's not the case, especially for young women. Even more so for those younger than 40, a population that no one's looking to screen. And the group where breast cancer rates are growing the fastest.
Forget awareness, let's get specific in our goals and demands: Develop a viable breast screening modality that will work with young women's dense breasts, and give it to all women starting at 30.
The fact is, if I can get breast cancer at 37.5--someone who's healthier-living than most and who has no genetic risk factors (I had the test, so I know for sure)--anyone can.
There will be a lot of advice to women on how to proceed in light of the new guidelines, but here's my 2 cents. Ask the doctor who orders your mammogram to tell you if you have dense breasts (if the report doesn't indicate, have her/him go find out from the radiologist). If the answer is yes, ask for a breast MRI. This, not a mammogram, is the "gold standard" for young women with dense breasts. It's the best we have for now, but I'd love something easier, something better.
And as for breast self-exams--feel your breasts, know your body and tell your doctor when you think something is different or not right.
I could go on, but I think the Young Survival Coalition says it well in their press release:
"This current debate regarding the effectiveness of mammograms highlights the issues facing young women. While over 11,000 women under 40 in the United States are diagnosed with breast cancer annually, there is still no screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly worse than their older counterparts and the disease is often detected at later stages and is found to be more aggressive. Without access to proper and timely care, a woman’s odds for survival decrease.
Mammography has been found to be an ineffective screening mechanism for this population because of their breast density. Accordingly YSC urges all young women to be familiar with their bodies, know their own personal risk factors for breast cancer, be aware of the signs of breast malignancies and to promptly consult with their health provider if they have any health concerns."
Friday, November 13, 2009
It's a Loooong Process
The thing about breast reconstruction after breast cancer is it's a process. Usually, a long process.
All the available methods take time and require stages. With implants, expanders are filled on a regular basis and then removed and replaced with the final product.
Tissue transfer procedures like TRAM and DIEP require an initial surgery to move the fat and skin and then another to make things look good and, if needed, to align the other girl.
Then, of course, building the nipples is another stage, and tattooing color for the areolas is yet another.
The time it takes to progress through these stages varies by individual. I'm realizing that I'm at 16 months and have only completed stage I of my DIEP. There's still a lot left to do, and it will take time.
I'm coming up on the third anniversary of finding my cancer--Thanksgiving night 2006. I don't feel like much has changed. I'm still very busy with cancer fallout--determining and then completing a yearly breast check plan and working to get to the next stage in reconstruction.
Gildna Radner got it right--it really does feel like it's always something or it might be something once they load you on the cancer rollercoaster.
I smile when people say, "It must be so good to be past all the cancer." It doesn't work that way.
I wish it did, but it just doesn't.
All the available methods take time and require stages. With implants, expanders are filled on a regular basis and then removed and replaced with the final product.
Tissue transfer procedures like TRAM and DIEP require an initial surgery to move the fat and skin and then another to make things look good and, if needed, to align the other girl.
Then, of course, building the nipples is another stage, and tattooing color for the areolas is yet another.
The time it takes to progress through these stages varies by individual. I'm realizing that I'm at 16 months and have only completed stage I of my DIEP. There's still a lot left to do, and it will take time.
I'm coming up on the third anniversary of finding my cancer--Thanksgiving night 2006. I don't feel like much has changed. I'm still very busy with cancer fallout--determining and then completing a yearly breast check plan and working to get to the next stage in reconstruction.
Gildna Radner got it right--it really does feel like it's always something or it might be something once they load you on the cancer rollercoaster.
I smile when people say, "It must be so good to be past all the cancer." It doesn't work that way.
I wish it did, but it just doesn't.
Tuesday, November 10, 2009
Is Mastectomy a Better Option if You Have Dense Breasts?
This BBC article says there's an increased risk of breast cancer recurring in dense breasts. The focus here seems to be seeing if women with less-dense breasts might be able to skip radiation after a lumpectomy.
I'd say it also suggests that women with dense breasts should opt for a mastectomy rather than a lumpectomy. It also makes a great case for giving women diagnosed with breast cancer an MRI before surgery to get the clearest picture of what else might be going on in dense breasts before deciding on a lumpectomy or mastectomy.
In my case, an MRI showed two additional areas of concern in another quadrant of the breast, away from the two tumors I found.
After reading this, I know I'm happy I chose mastectomy rather than lumpectomy. I'm also happy I chose to have radiation. Hit it with everything up front so hopefully I'll never have to deal with it again.
To most people who've never had to make the choice, I'm sure a mastectomy seems very drastic, but it gives you more reconstruction options. In my opinion, it's not as horrific as it's held up to be. It ain't no picnic, but it definitely isn't the end of the world.
I'd say it also suggests that women with dense breasts should opt for a mastectomy rather than a lumpectomy. It also makes a great case for giving women diagnosed with breast cancer an MRI before surgery to get the clearest picture of what else might be going on in dense breasts before deciding on a lumpectomy or mastectomy.
In my case, an MRI showed two additional areas of concern in another quadrant of the breast, away from the two tumors I found.
After reading this, I know I'm happy I chose mastectomy rather than lumpectomy. I'm also happy I chose to have radiation. Hit it with everything up front so hopefully I'll never have to deal with it again.
To most people who've never had to make the choice, I'm sure a mastectomy seems very drastic, but it gives you more reconstruction options. In my opinion, it's not as horrific as it's held up to be. It ain't no picnic, but it definitely isn't the end of the world.
Monday, November 9, 2009
Cancer CAN Make You Fat
The author of cancervacation.com wrote a great entry about how breast cancer treatment makes most women gain weight--especially if they get the pretreatment steroids for over a year with Herceptin, as I did.
She's right that it sucks. She's also right that it's an element of treatment that most people don't even know about and one there isn't any support for.
When the medicines make you bald, you can get free wigs from many sources, and most insurance will reimburse a "cranial prothesis." The ACS helps you fake eye hair and cure dry skin with their "Look Good, Feel Better" sessions, complete with a fabulous goodie bag of top-name cosmetics. But you're on your own to remake your wardrobe several times through treatment as your body changes more than a teenager's.
I actually was able to put a good portion of my weight gain to good use in building a new DIEP breast after treatment. But, yeah, I've got extra fat elsewhere that I never encountered before. I hate to shop for clothes because I gravitate to things that I would have looked good in before cancer, and I usually don't like and can't easily identify styles that would look good on me now.
Most people have been kind enough not to mention the weight thing, but I remember when a nurse called to do a preop check for my port removal surgery. She started off by asking, "Have you gained a lot of weight?"
Pardon me; who are you?
She said my file was flagged because I'd porked out--of course she didn't use those words, but that's what I heard. I imagined a red flashing computer screen and a hooting car alarm: We've got a fattie here!
So that bothered me a little. And this back fat perplexes me in a constant kind of way. I think I'm actually going to ask my plastic surgeon to get rid of it and generally spruce up the whole middle section during the second stage of my DIEP. That's if I can get over a crippling fear of more surgery, however minor.
I called to schedule an appointment to start working toward DIEP stage II the other day.
I'll keep you posted.
She's right that it sucks. She's also right that it's an element of treatment that most people don't even know about and one there isn't any support for.
When the medicines make you bald, you can get free wigs from many sources, and most insurance will reimburse a "cranial prothesis." The ACS helps you fake eye hair and cure dry skin with their "Look Good, Feel Better" sessions, complete with a fabulous goodie bag of top-name cosmetics. But you're on your own to remake your wardrobe several times through treatment as your body changes more than a teenager's.
I actually was able to put a good portion of my weight gain to good use in building a new DIEP breast after treatment. But, yeah, I've got extra fat elsewhere that I never encountered before. I hate to shop for clothes because I gravitate to things that I would have looked good in before cancer, and I usually don't like and can't easily identify styles that would look good on me now.
Most people have been kind enough not to mention the weight thing, but I remember when a nurse called to do a preop check for my port removal surgery. She started off by asking, "Have you gained a lot of weight?"
Pardon me; who are you?
She said my file was flagged because I'd porked out--of course she didn't use those words, but that's what I heard. I imagined a red flashing computer screen and a hooting car alarm: We've got a fattie here!
So that bothered me a little. And this back fat perplexes me in a constant kind of way. I think I'm actually going to ask my plastic surgeon to get rid of it and generally spruce up the whole middle section during the second stage of my DIEP. That's if I can get over a crippling fear of more surgery, however minor.
I called to schedule an appointment to start working toward DIEP stage II the other day.
I'll keep you posted.
Saturday, November 7, 2009
Mammograms Have Flaws
I'm loving the articles questionning the universal value of the mammogram. There are cases when the screening is not enough and when it's too much.
Here's a link to the New York Times article that includes these great sections:
"One risk factor is having dense breast tissue, which is a double threat: cancer is more likely and harder to detect, because X-rays do not penetrate this tissue as well as they pass through fat. The only way to find out whether you have dense breasts is with a mammogram, and the radiologist’s report should mention density, Dr. Esserman said. Patients may have to request the full report."
"Younger women, she said, are less likely to have cancer, and they tend to have dense breast tissue, so mammograms are more likely to miss tumors. For them, she said, “it’s radiation without much benefit.” (Dr. Susan Love)
But the article falls short because it doesn't tell women what they should do if the report says they have dense breast tissue.
I'd say if you're following up about something odd that you or your doctor feel, demand a sonogram and a MRI and biopsy if they're not offered--whatever it takes to find out for sure what you're dealing with.
If it's just annual screening, I'd suggest talking to your doctor about MRI as a better screening tool for you.
A couple key takeaways for me: mammograms aren't good at catching the very aggressive cancers, and they can't penetrate young women's dense breast tissue. Young women very often have more aggressive cancers. So, ergo, let's put more effort behind studying this disease as it affects young women.
My favorite paragraph is this one:
"In a certain sense, I have to confess that I’m happy if the public gets offended or infuriated” by the debate, Dr. Formenti said. “I want taxpayers to say: ‘You have no clarity. Study it. Stop telling us you are a good girl if you get a mammogram.’ ”
Yes, let's talk about it, and then let's really do something about it!!
Here's a link to the New York Times article that includes these great sections:
"One risk factor is having dense breast tissue, which is a double threat: cancer is more likely and harder to detect, because X-rays do not penetrate this tissue as well as they pass through fat. The only way to find out whether you have dense breasts is with a mammogram, and the radiologist’s report should mention density, Dr. Esserman said. Patients may have to request the full report."
"Younger women, she said, are less likely to have cancer, and they tend to have dense breast tissue, so mammograms are more likely to miss tumors. For them, she said, “it’s radiation without much benefit.” (Dr. Susan Love)
But the article falls short because it doesn't tell women what they should do if the report says they have dense breast tissue.
I'd say if you're following up about something odd that you or your doctor feel, demand a sonogram and a MRI and biopsy if they're not offered--whatever it takes to find out for sure what you're dealing with.
If it's just annual screening, I'd suggest talking to your doctor about MRI as a better screening tool for you.
A couple key takeaways for me: mammograms aren't good at catching the very aggressive cancers, and they can't penetrate young women's dense breast tissue. Young women very often have more aggressive cancers. So, ergo, let's put more effort behind studying this disease as it affects young women.
My favorite paragraph is this one:
"In a certain sense, I have to confess that I’m happy if the public gets offended or infuriated” by the debate, Dr. Formenti said. “I want taxpayers to say: ‘You have no clarity. Study it. Stop telling us you are a good girl if you get a mammogram.’ ”
Yes, let's talk about it, and then let's really do something about it!!
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