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.
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