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.
Monday, January 4, 2010
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.
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