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

Posted by nycoceans @nycoceans, Jan 26 6:58pm

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. ❤️

@nycoceans
I'm guessing that you have had long discussions with your oncologist, and that he told you that one strategy with LCIS is wait and watch. Did he recommend that? or did you choose that?

To my knowledge, a preventive strategy with LCIS is the use of SERMs (in particular, tamoxifen and Evista). Did you discuss those with your oncologist and what was the recommendation? And as you noted, another preventive strategy is double mastectomy. Did your oncologist take a position on that?

The goal, as you know, is to prevent the LCIS from turning into invasive breast cancer. If it was me, I would opt for the middle road and take a SERM. Dealing with the side effects would be preferable to waiting or surgery for me… but that's me. I wish you the best with whatever you decide… but make it an informed decision.

Liked by kathyomaha55

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I had DCIS then IDC in the opposite breast. The first time I had lumpectomy, radiation and tamoxifen. The second time…11 years later, I had lumpectomy, radiation and am taking anastrozole. The first time was stage 0, the second time was stage 1 invasive ductal cancer. We are talking apples and oranges here. Did you get tested for genetic mutations that might be involved? After the second time, that was offered to me and I do have a mutation…CHEK2…not the brca1 and 2 that are common. If I had been tested after the first occurrence, I would have had a bilateral mastectomy then or right after the second occurrence. I am definitely getting the bilateral mastectomy with reconstruction now. The first cancer was 2007 and the second was 2018. It’s a crap shoot and hindsight is a wonderful thing. I had some discomfort on the tamoxifen and am having very little on the anastrozole. I think exercise helps. I walked and continue to walk 3 miles 3-4 days a week…more if the weather and the schedule permit it. Good luck.

Liked by kathyomaha55

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@sandyjr

I had DCIS then IDC in the opposite breast. The first time I had lumpectomy, radiation and tamoxifen. The second time…11 years later, I had lumpectomy, radiation and am taking anastrozole. The first time was stage 0, the second time was stage 1 invasive ductal cancer. We are talking apples and oranges here. Did you get tested for genetic mutations that might be involved? After the second time, that was offered to me and I do have a mutation…CHEK2…not the brca1 and 2 that are common. If I had been tested after the first occurrence, I would have had a bilateral mastectomy then or right after the second occurrence. I am definitely getting the bilateral mastectomy with reconstruction now. The first cancer was 2007 and the second was 2018. It’s a crap shoot and hindsight is a wonderful thing. I had some discomfort on the tamoxifen and am having very little on the anastrozole. I think exercise helps. I walked and continue to walk 3 miles 3-4 days a week…more if the weather and the schedule permit it. Good luck.

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@sandyjr, I had stage 1 invasive ductal cancer in 2017. Like you I had a lumpectomy and radiation. I took Anastrozole for a year and a half, and finally had to stop because of painful and other very troublesome side effects. I tried Exemestane next, and it was better, but still i was having uncomfortable side effects. I'm now taking Tamoxifen. Still side effects, but fewer. I'm interested to know what your side effects were with Tamoxifen.

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@sparklegram

@sandyjr, I had stage 1 invasive ductal cancer in 2017. Like you I had a lumpectomy and radiation. I took Anastrozole for a year and a half, and finally had to stop because of painful and other very troublesome side effects. I tried Exemestane next, and it was better, but still i was having uncomfortable side effects. I'm now taking Tamoxifen. Still side effects, but fewer. I'm interested to know what your side effects were with Tamoxifen.

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Gee, that was a long time ago. I remember the body aches. It was not real painful, but sometimes annoying. It was more an ache than pain. I just figured that if I was having side effects, it meant the medicine was working. Like I said, I walked a lot and still do and I really think that is the key.

Liked by kathyomaha55

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Wow! You are doing a great job following up and taking care of yourself. From my experience and reading everyone’s story it seems as though there is no perfect answer, darn! My LCIS was discovered when I was 49. I had a lumpectomy and followed up with 5 years on Tamoxifen. I had few side effects though the worst was my uterus started growing significantly so I had a complete hysterectomy. 4 years after I ended tamoxifen, it was discovered that I had invasive lobular cancer. I had a lumpectomy, radiation and am taking anastrozole each day. I am having periods of sharp pain in some of my joints. I walk a lot through rain and snow, I have a regular Yoga practice and eat a plant based diet. When I’m feeling strong I feel like a warrior battling this disease and when I’m not I meditate and remind myself that this is just temporary. All any of us can do is listen to our body and do the best we can each day. I don’t have any known gene mutations but my mother had breast cancer at age 28 and died from metastatic cancer when she was 43. Take care my fellow warriors!

Liked by elizm, kathyomaha55

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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.

Liked by jkh

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Personally I chose to do an AI (now on exemestane) because MBC scares me & the 5 year survival rate is so low about 22% for 5 years. I'm 64 I want to live another 20 years. I had bad joint pain from anastrozole, but I can live with the better side effects from exemestane, My joints still hurt but so much less on the exemestane.

Liked by sparklegram

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@kathyomaha55

Personally I chose to do an AI (now on exemestane) because MBC scares me & the 5 year survival rate is so low about 22% for 5 years. I'm 64 I want to live another 20 years. I had bad joint pain from anastrozole, but I can live with the better side effects from exemestane, My joints still hurt but so much less on the exemestane.

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That's good to know, Kathy. I'd like to hear what side effects other people are getting from Tamoxifen. I'm trying to decide if i should return to Exemestane, having been on Tamoxifen for a month.

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@sparklegram

That's good to know, Kathy. I'd like to hear what side effects other people are getting from Tamoxifen. I'm trying to decide if i should return to Exemestane, having been on Tamoxifen for a month.

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Good luck. I think I can stick with exemestane for another 4 years. I'm pretty sure I would not have stuck with anastrozole that long – I was at 7 months & the hand pain was unbearable. It's still there but tolerable. What were your side effects on exemestane?

Liked by sparklegram

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@kathyomaha55

Good luck. I think I can stick with exemestane for another 4 years. I'm pretty sure I would not have stuck with anastrozole that long – I was at 7 months & the hand pain was unbearable. It's still there but tolerable. What were your side effects on exemestane?

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Kathy, I don't think I gave Exemestane a fair trial. i was on it for only a couple of weeks. I was having excruciating neck pain so my doctor advised me to go off it for ahile, and make an appt. to see her. The fact is, I still have bad neck pain, but I have osteopenia, so it might not have been due to the Exemestane. I also began feeling very tired while on it. I'm just worried about the possible side effects of Tamoxifen. I'm feeling like I'd rather endure the joint pain and fatigue, than risk blood clots and other effects of Tamoxifen. I have 3 more years t be on the drugs.

Liked by kathyomaha55

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@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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Hi @kathomaha55
thanks for bringing this information from the UNMC panel talk back to the group. I think the members taking part in this discussion might appreciate knowing about risk and mastectomy:
– Preventative double mastectomy https://connect.mayoclinic.org/discussion/preventative-double-mastectomy/

@sparklegram here are some discussions about Tamoxifen:
– LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/
– What problems have you had with Tamoxifen? https://connect.mayoclinic.org/discussion/what-problems-have-you-had-with-tamoxifen/

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@colleenyoung

Hi @kathomaha55
thanks for bringing this information from the UNMC panel talk back to the group. I think the members taking part in this discussion might appreciate knowing about risk and mastectomy:
– Preventative double mastectomy https://connect.mayoclinic.org/discussion/preventative-double-mastectomy/

@sparklegram here are some discussions about Tamoxifen:
– LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/
– What problems have you had with Tamoxifen? https://connect.mayoclinic.org/discussion/what-problems-have-you-had-with-tamoxifen/

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@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.

Liked by elizm

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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.

Liked by elizm

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