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. ❤️

@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.

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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.

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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.

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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!

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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.

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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.

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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?

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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.

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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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