LCIS-Age 61 (post menopause) diagnosis- AI’s a good idea?

Posted by nycoceans @nycoceans, Jan 26, 2020

Seems to me that 61 s older than “typical” (if there is anything typical about LCIS – it seems as if so little is known about it!) Haven’t tried AI or other meds – the posts about side effects are terrifying. Mastectomy(s) seems extreme Two and a half years since diagnosis – have had mammo every 12 months and ultrasound every 12 months so there’s a test every six mos. Any ideas, advice,ANYTHING before my head spins off????? So very grateful to you all. Sending love and prayers. ❤️

@kathyomaha55

I attended a talk on BC with 6 doctors, the most interesting fact I learned was that a double mastectomy, does NOT lower your risk for Breast cancer from coming back. Even in the most extreme procedures, they leave from 2 to 5% of breast tissue behind. After many studies they determined the chance of re-occurrence was the SAME with or without a mastectomy. So they are now trying to talk women out of this procedure. This was doctors with the University of Nebraska Medical Center.

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I have already responded to this thread I think. DCIS in 2007. IDC in 2018. Both were treated with lumpectomy and radiation. I took tamoxifen the first time and am taking anastrozole now. I did genetic testing after the second occurrence, and have the CHEK2 gene mutation which increases my chances of getting BC again. I also have a family history of BC. Anyway, I have been trying to decide what to do and have decided on bilateral mastectomy with reconstruction. My oncologist told me that if I got it again, it might be triple negative BC which is much more aggressive because I have been taking the anti hormone drugs. I spoke with a plastic surgeon yesterday. These people do not know each other and do not work in the same hospital system etc. He told me that if I got it again that it would probably be more aggressive and that I would probably need chemo. I had spoken to a breast surgeon who I disliked very much because of her attitude, and she informed me that she had never heard of that. She also told me that I could not have nipple sparing mastectomy with reconstruction using my own tissue because I am too old. The plastic surgeon I saw yesterday said that I was not a candidate for nipple sparing mastectomy because I had had radiation, but that I am a candidate and I am not too old for using my own tissue for reconstruction. This bothered me because, both the first and second time I had it, they just automatically put me on the lumpectomy, radiation and drug regimen. I was never given a choice or offered anything different. If I had not had the radiation, I could probably have gotten the nipple sparing mastectomies. The first surgeon also told me getting lymphedema from BC treatment was a fallacy. The genetic mutation was really the deciding factor for me as it increases my chances of getting BC again. Lots to think about. If I had had the genetic testing after the first cancer, I would have had the bilateral mastectomy when I got BC the second time. Also, I was told that there is a slight chance that I could get it again, but being that there are so many fewer breast cells left, that it would lessen my chances. What bilateral mastectomy does not stop is getting BC somewhere else in your body. I feel that I am making the right decision for myself and that I am less apt to get it again with the mastectomies. Another thing I have to point out is that this breast surgeon with what I will call misinformation bothers me. My oncologist is the head of oncology at a large health system in the adjoining state and the plastic surgeon had good information and can in fact do the reconstruction as requested. He says that even though I am 69, I am healthy and a good candidate. He also said that I would only need the normal pre op testing…blood work, chest X-ray and urinalysis and that I do not need a stress test as the first surgeon said. I have learned from this that you do not have to take a doctor’s word as gospel. You can question anything and you have a right to change doctors. Also, doctors may not like their patients studying the computer looking for answers, but you have a right to….maybe you will find as I did that the first surgeon should be stayed away from. Also, if you do not want radiation and do not get it or if you do not take the medicine, that is ok. You may find that down the road things will play in your favor. My cousin has had bilateral mastectomy and has not done radiation nor meds.

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" Any ideas, advice,ANYTHING before my head spins off????? "

NYCoceans, your timeline is almost exactly my timeline for LCIS. Give those AIs a try is my suggestion. If they are not tolerable then quit and at least you know you gave them a shot. I tried the AIs and could not tolerate them for more than a few weeks. Same with Tamoxifen, even the low dose. But Evista/Raloxifene is fine. I mention my failures with the various drugs to emphasize trying them all. Even if some are terrible for you, it does not mean they all will be terrible for you. Everyone reacts differently to the different meds and you may even feel fine with all of them.

Another idea would be to get an MRI every year. I do that at Mayo and talk to the oncologist there once a year. I've done that for 2 years and plan to continue. My other annual tomo 3-D mammogram I get at home. If you are not getting the tomo, then that would be one piece of advice.

Also check with Mayo about clinical trials you might be eligible to participate in, if that is of interest to you.

If not Mayo, you may want to seek a second opinion on your diagnosis elsewhere and just hear what the other professional has to say. I have been very impressed with the Nurse Practicioners I have encountered, especially at high risk breast clinics.

My head was spinning off about the first year after the diagnosis and because atypia was found months later in the other breast. I'm in the vigilant but not paranoid state now and hopefully you will be too.

Good luck to you.

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I am 68 and have been taking Anastrazole for a year. My side effects have been minimal. I have also read how some people have debilitating side effects, but that is not true for everyone, thank goodness. Good luck with your decisions.

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