Stopping Hormone Therapy?

Kalypso2005 · June 2016

I have been on three different meds since my surgery and radiation treatment the end of 2014. First was Femara, which gave me so much pain I cried nearly every day. Then came Tamoxifin, which caused me to itch from the itch from the inside out constantly. I was up at three AM nearly every night taking out showers to get some relief. Finally and most recently I tried Exemestane. This made the pain even worse. The first month I was fine and so relieved there was a med I could take and then the pain started. My oncologist said it wouldn't get better. I told him I would see how long I could go.

I am 63 years old and hoping and planning for a glorious retirement in a couple of years with my husband. Recently I have been concerned I won't live that long. Not because of the cancer but because of the meds. I think that for some women they are tolerable but for others they are poison. My diagnosis was Stage 1, grade A, estrogen and progesterone positive. My oncatype score was 17. No chemo required, thank God. I did have 6 weeks of radiation with the boost on the last week. Fatigue was the worst but I have since noticed my rib bone under my left breast (the culprit!) hurts in certain positions. I have read that this is from the radiation. All this said I am looking for some help. I consider myself very lucky but there is a lot of fear out there. A woman on one site I went to, "MyBCTeam", said that even with negative nodes and stage 2 breast cancer she ended up with stage 4 after 3 years. That was taking meds. She also said that 30% of woman with negative nodes and stage 1 or 2 get stage 4 cancer. Yes, this frightened me and was a statistic I hadn't heard before. A friend of mine gave me another risk assessment from the US Bureau of National Statistics that says without therapy I have a 2% chance of dying from cancer in 10 tears. There was about a .3% difference by taking the meds. Over 15 years, 75 people out of 100 people will be alive. 23 people will have died of non cancerous issues and 2 from cancer.

My question in all this is, how are others dealing with these issues and information?

movingsoccermom · June 2016

I had severe side effects from Anastrozole, and after discussions with my DH and children decided not to take any other medications. I have a very low Oncotype DX score, and felt that for me, surgery and radiation would have to be enough. I am slowly working to lose some weight, but have to start with the 12 lbs gained from the drug trial. I have chosen to believe that I have done what my body will tolerate treating this disease and I will move forward in hopes it never returns. Its a very personal choice and I wish you all the best.

Kalypso2005 · June 2016

Thank you so much for your response. I am hoping my oncologist is as reasonable as yours. Good luck and here's to a long life

Manu14 · June 2016

Kalypso, we are almost identically matched in our profile except I am 64 years old and my oncotype was 18.

I took tamoxifen for 15 months and then stopped it. My mood swings were bad plus I developed multiple uterine polyps which had to be removed. I wasn't willing to continue so asked to try Arimidex. After 2 momths of taking it I developed a serious toxic reaction. My onc said he had never seen such a bad mix of side effects in all his years of practice. He said he would not want to prescribe any other aromatase inhibitor for me either. He suggested going back on tamoxifen but didn't push it. After serious consideration I decided not to take any hormone therapy. If I were younger; had positive nodes or even micromets; had LVI or high Ki67; etc. I might have decided differently.

There are no gurantees with or without taking the meds; but I knew my life was significantly compromised when I was on them. I gave it my best effort and feel comfortable with the devcision I've made for myself. Others might have chosen differently. I'm continuing to focus on healthy eating; maintaining a good weight and exercising daily.

Best of luck as you make your choice

Kalypso2005 · June 2016

Manu14, thank you so much for sharing your situation. Boy, we really do have a lot in common. I am so glad to hear you're doing well. Thank you so much for letting me know I'm not alone on my decision.Take care and let's stay in touch.

dtad · June 2016

You are not alone. I'm 63 and was diagnosed with Stage 1 last year. I have chosen not to take an anti hormone too. My main reason is because I already have multiple autoimmune disease which negatively affect my QOL. I'm just not willing to make it even worse. We all have to make our own decisions because we are not all alike. My docs of course don't agree but I'm the one suffering everyday. I have chosen to try to lower my estrogen levels naturally. I take DIM and have lost 22 pounds with diet and exercise. Good luck to all....

Kalypso2005 · June 2016

Thank you, MarieB. I had no idea. That is an amazing statistic.

Kalypso2005 · June 2016

Thanks, I have lost 10 pounds and want to lose more for the same reason. What is DIM? I take about 8,000 units of D per my oncologist for help in prevention. My D was very low. Thanks

tgtg · June 2016

Kalypso--With tumor stats somewhat similar to yours (larger tumor, slightly lower oncotype #, but also grade 1/stage 1 and clean nodes), I declined anti-hormonals from the very beginning. At 71 and very fit and healthy, I saw no percentage for me in taking a drug that can create medical conditions (like stroke, clotting, eye problems, osteoporosis, uterine cancer, etc.) that can kill or incapacitate me long before a recurrence might happen. I am now almost 3 and a 1/2 years out and doing just fine, with diligent monitoring of course. Instead of introducing a drug into my system, I trimmed my weight by 15 lbs, kept exercising as before b.c., reduced my sugar and fat intake lower than before b.c., and do 1000 IU of vitamin D3, rather than take a medication that may or may not work and that those clever cancer cells can develop a resistance to.

As for your oncologist being "understanding" or "letting you drop the meds," remember that you are in charge. My med onc said to me when we discussed my choice during our one and only meeting, "My job is to give you advice, not to coerce or browbeat you into following it." In fact, she agreed that, given my age, oncotype, great health, and general tumor characteristics, my decision was quite reasonable in her eyes. My wonderful surgeon and rad onc are doing my follow-ups and support my decision (and my commitment to good exercise, diet, etc.). Remember, you are the consumer in medical care, and you can discharge your onc quite easily--simply by making no further appointments and finding a different one! Or, if you like this med onc and he/she accepts her your decision, you can have him/her continue to do your followups. A friend of mine in her early 70's,--who also declined hormonal treatment but likes her med onc more than her surgeon--did just that and is quite happy the woman, who does not scold or reproach her about the decision--doesn't even bring it up!

As for the recurrence statistics and the jump from stage 1 to 4, remember that the "early tumors" classification includes stages 1 and 2, and sometimes 3, and that those stats also include all ages, including younger women whose tumors tend to grow faster--both of these inclusions compromise the usefulness of these stats as a basis for decision-making for older women with grade1/stage1 tumors. (My surgeon pointed this out to me, by the way.)

Good luck with your decision--it is not an easy one to make, because it simply isn't a one-size-fits-all situation. When I discussed my decision with my PCP, he gave me some wise advice that I will share with you: "Whatever you decide, be sure you can live with the decision and not look back on it, ever." I can, and I don't--and I will deal with a recurrence if and when it happens!

wjminva · June 2016

I am so thrilled to have found this thread! We all have so much in common.

I am 66 and was diagnosed just before I turned 65. I have been participating in a clinical trial, taking faslodex now for 18 months. I have very bad back pain, dryness that affects everything from my skin to my eyes to my vagina, joint pain, constipation and more. The study protocol has me on the faslodex for another 6 months (total of two years) and then switching to an AI. I am currently researching everything I can to determine if I'm willing to sacrific my quality of life for the remote possibility of a recurrence. What I read on various discussion boards here and elsewhere is that the side effects of the AIs are miserable. I am recently retired and have a wonderful man in my life. I don't want to give up today for what might happen tomorrow. And I want to enjoy my life while I'm still young enough and healthy enough to do so. Age will take its own toll as the years -- hopefully -- go by.

Thank you all so much for your contributions to my decisiopn-making process.

rivedeb · June 2016

I too am going to be stopping my therapy, I am on Femara now and was on Anastrozole which I stopped as well. I do not like the side effects and would like to try a more natural approach, I did some research on Turmeric and starting taking that supplement. Dtad what brand and milligrams do you take of DIM? What have you noticed so far any side effects?

Thank you for any help you can offer.

Stopping Hormone Therapy?

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