Thinking of inducing menopause to take aromitase inhibitor

Cantbelievethis

Hello again. My path report says I am Estrogen positive 99%, Progesterone negative and HER2 negative. I am reading studies that are saying that this is a distinct subgroup that tends more to develop tamoxifen resistance. It seems to be connected in part to Ki67 tending to being higher in this group. I'm grade 1, no lymph nodes, 2.7 centimeters so stage 2. I had an oncotype test done but haven't gotten the results yet so I don't know my ki67. The studies seem to indicate that the aromatase inhibitors work better in this subgroup but I can't take them because I'm pre-menopausal though I'm 54 years old. Has anyone tried inducing menopause either surgically or through medication so that they can take an aromatase inhibitor? Anyone out three in my subgroup? Also, what about chemo? I don't trust Tamoxifen because my mother was on it and she developed mets 5 years later so maybe she had the same subgroup and was tamoxifen resistant?

ICanDoThis

Sounds like you are pretty scared.
Of course, you can induce menopause, either by ovarian suppression or an oopherectomy and take an AI.

But, has anybody told you yet that grade 1 cancers are also called lazy, indolent, and the best kind to have if you must have cancer? Your oncotype is likely to be low, your likelihood of needing chemo is also low, and your odds of living for a long time are very high. The odds are that surgery will take care of most issues, then you can take an AI for a few years, and you will get old and die of something else.

Waiting is the hardest part, but when you get to the other side and have a treatment plan in place, the stress will ease.
I know; easy for me to say. But I'm 7 years out now, and busy living my cancer-free life

farmerlucy

I just turned 55 and had an ooph in April. I was premenopausal with no end in sight and I was having uterine issues on Tamoxifen. The surgery was a non event (I had a d&c at the same time). The lack of estrogen is another matter. I think my body really misses it, I could tell I was sliding into depression and the HFs were unbelievable. My onc doubled the Effexor to 75mg. I think I'm starting to adjust. I am glad to be on Femara with a few more % point in preventing recurrence. Tamoxifen wasn't bad though. I liked that it only blocked the estrogen and I also liked that it strengthens bones. I did have a bone density scan when I started Femara and everything was in normal range. Best of luck with your decision.

Warrior_Woman

Everyone is different and my experience may not be applicable. My ki67 was 40% and I learned this from my first path report. The oncotype report does not reveal ki67 although it is part of the test. I don't think you'll learn your ki67 from the oncotype. Because of the studies you reference, I too was concerned about the effectiveness of Tamoxifen. I also have NF1 and the research re: Tamoxifen and NF1 is also concerning. My MO is giving me one more year before switching me to an AI. I chose not to use medication to push past menopause because of the very really and concerning side effects. I forget the name of it but it's a heavy duty drug and I've been drugged enough already. Please share your concerns with your MO. Your oncotype test will determine the need for chemo. My score was 24 so I did chemo. It certainly would be nice if there was a clear and simple path that didn't involve guessing.

ABeautifulSunset

Menopause kinda sucks. I am sure you must be thinking that you would do anything to lessen your risk of having your cancer return. I do get that. I had an ooph and went into menopause at 48 because of stage 4 breast cancer. Doc said I was close enough to menopause to do it and take the AI instead of tamox. In retro, I might have liked a few more years of moisture. Dryness is chafing and sex hurts. Guess what else....NO sex drive. I really do miss that feeling. Just know what you are trading. Good luck with your decision.

Cantbelievethis

Thanks for the replies. I thought I was doing okay with all this but when it came back stage 2 due to the size, after all my vigilance, I freaked. You're right, I will do anything at this point to not have this come back. I am grateful it is stage 1 and low grade. On Friday I spoke to the head of the breast cancer clinic, who is a prominent expert in the field, I spoke to the radiologist who reviewed my mammos over several years with me, and I spoke to the obgyn at the breast clinic who has given me exams for years. All three said the same thing. My breasts are so dense and lumpy that mammos are very hard to read, breast exams very hard to do, and that the risk if it comes back of missing the cancer until it gets large are great. The radiologist said even looking at my current mammo that detected the cancer, that it was barely able to be seen, and that was a diagnostic mammo, she said a regular annual one wouldn't have picked it up. All three said that I should consider a bilateral mastectomy for my situation. So although I'm horrified by the idea, I am going to do that. Still waiting for the oncotype test, I pray that it will be a low score, if it is intermediate I am strongly thinking about doing the chemo to play it safe. I feel at peace with the decisions though I get moments where this feels so surreal and I just wonder what the hell is happening and how can I be in this situation.

Bounce

Did any of the doctors mention ultrasound or mri as an option to mammograms?

ingersollnic

Hi

I am 42 recently diagnosed and have been advised that I should have induced menopause and AI instead of tamoxifen. I am on chemo at the moment. I chatted online to a member and found that the SOFT study is the most relevant to us, as premenopausal women as most studies of course on the AI are for post menopausal women. It seems to come down to several percentage points increase in disease free time. I still have concerns about the side effects, as I am young and am not ready to give up an enjoyable sex life so I intend to talk to several specialists before I decide.

Tresjoli2

i am trying to think through this decision and find it mind numbing. Which crappy option would you like? Tamox behind door 1, AI behind door 2. Blot clots or bone loss? Oh and forget 5 years...let's do ten. I have no idea what to do and when I bring up sex to my MO she says " yes that will be too bad. You should know sex will hurt from now on."eeghhh

614

I was diagnosed with bc in June 2014.  My medical oncologist told me that I was a poor metabolizer of tamoxiphen (after taking a blood test) and therefore, I could not take tamoxiphen.  Also, since I had pleomorphic lobular carcinoma and pleomorphic lobular carcinoma in situ in more than one area, (as well as tubular carcinoma), my oncologist informed me that aromatase inhibitors would work better for me.  Although I was 49 at diagnosis, I was not even close to being in menopause. 

I started on Zoladex which is a monthly shot in the stomach of a rice sized pellet which shuts down the ovaries to mimic menopause.  I had to be in menopause to take the AI's.  I did not want to take the extra medicine so I opted for an bilateral salpyngial oophorectomy rather than continuing on the Zoladex.  Although I started the Zoladex in October 2014, I did not go into menopause until November 2014.  I had the oophorectomy in December 2014.

I DO NOT have any sexual side effects.  I am not dry.  I still have an insatiable libido.  I do have some hot flashes though.  Oh well.  The hot flashes are not bad though.

DON'T GIVE UP HOPE. You may be fine.

Also, having the oophorectomy means that you will not have to worry about ovarian cancer.  That is a huge relief. I had laparoscopic surgery and I was totally fine.  I felt great the same day.  The surgery was not bad at all. I did not take any pain killers at all after the oophorectomy.

Good luck with your treatments.  I wish you the best.  I am sorry that you are dealing with all of this. 

Cantbelievethis

Thanks for all the replies. I'm too exhausted and in overload right now to reply to your individual responses but I do appreciate them and am looking into the information and questions provided. Meeting with oncologist, plastic surgeon and surgeon all this Thursday, will know more then. Thanks again.

Dancermom1999

Hello Cantbelievethis...I too am ER+ 82% and PR -, HER2 -. I too was freaked about all the info that PR-can be tamoxifen resistant. I was in the middle of menopause, missed period for 5 months and she said to start on Tamoxifen and then if I still did not get a period for another 5 months she would switch me. So, I start tamoxifen, have an internal ultrasound as a base line all is normal...and low and behold 4 months later I am having pains in my ovary. Go to gyn and have another ultrasound, this time i have a 2 cm ovarian cyst, a 2.5 cm fibroid and my uterus is now 10mm thick and pre cancerous. Needless to say I had a hysterectomy -laparascopic - back to work in a week and now am on anastrozole. Mentally feel so much better as AI's supposedly work better for PR- but honestly,I miss my sex -and I am dry and it hurts.. I use Lav ( not sure of the spelling ) as a lubricant - no estrogen in it and it does help. I guess my post is not to make any recommendations, just to let you know that I am similar to you and this is what I have been through.

MeToo14

I too am in the same boat as you. I made the decision to do suppression and take an AI. I start next week and am also worried. I do know that everyone is different and hopefully I will be fine. I am 36 and am scared to death that it will come back so I made the decision to do everything I can, no regrets. I do hate needless though. Good luck to you, I hope the side effects are minimal for you.

Curlylocks

I am an almost a 10 year 2x breast cancer survivor. My first diagnosis was in 2005 at age 41, 4 cm tumour, 3 positive nodes --was estrogen and progrestone positive. My oncologist wanted me to be aggressive with my treatment, had 6 months of chemo, a left breast lumpectomy and put on Zoladex injections (ovary suppression) for 1.5 years and put on Armidex. I had my ovaries permanently removed in 2008 at age 44. I don't know what my k67 was. I do know that I regretted having the lumpectomy with my first bc.

I have a strong family history of bc (2 sisters disgnosed after me in 2010 and 2013). My youngest sister unfortunately did not make it --she was 44. My older sister was diagnosed in 2013 and is a 2 year survivor.

I had a new Primary (same breast as my first bc) discovered from the pathology from my bilateral masectomy with DIEP reconstruction in Dec 2013.

In both cases a mammogram did not pick up my cancers. My oncologist said with dense breasts it is like looking for a needle in a haystack.

Menopause was hard for me, hotflashes from hell, sleep problems and mood swings like I was jeckel and Hyde. Mood swings seemed to settle down. I am on a low dose of effexor for hotflashes works like a charm. My mood swings settled down after a few years.

BTW -- I was stage 2b, grade 3 with my first bc. My stats and treatments are
Listed below. My oncologist never offered tamoxifen. My 2nd bc was Triple Negative. You may want to consider doing ovary suppression first before making a definite decision on removing them. I don't regret my decision to remove mine.

Hang in there this does get easier, listen to the wise words of a veteran.lol

Michele

cadams

I am in the same situation as you. I have made the decision to do suppression and take an AI. I start my Zoladex injection next week. My worry is that I'm 35 and have not had children (of course we want some as we just got married a year ago). Research seems to be a little more favorable than taking Tamoxifen. My oncologist believes children can be in my future but I'm also very afraid of the side effects. The most important part is to keep going and have faith. Everything will work out. Sending positive vibes!

Cmo65

I have an appt to discuss this very thing tomorrow. I just turned 50 and don't want to take Tamoxifen. My dr says my estrogen is still kicking and I only have one ovary. The other was removed last year w benign mass.

Is there a difference in outcome is suppressing the ovaries vs. oophorectomy?

Christine