Anyone NOT elect to do Hormone Therapy?

JAYSFAN, you may have seen one of my previous posts, but I can tell you that the hot flashes will pass and life does get back to normal. I also have a history of mood swings, but I did try Tamoxifen so that I could say I gave it my all. The Tamox did tip me over the edge after all the other treatments and the fact that I was so very strong through it all, I was bound to crash anyway. When the big crash came, I simply went off the Tamox and felt 100% better. I'll never really know if it was the Tamox or the fact that I finally had a bit of a choice in treatment, but in the back of my mind I do know that I could check off the list that I tried it, freaked out, went off and moved on :-).

Tamox is for women who are pre-menopausal when they were diagnosed and Arimidex is typically for women who were post menopausal. If you have had chemo, as I did, it can put you into menopause, but the MO would have still had me on Tamox. Now that I am officially post menopausal, I could hop on the Arimidex bandwagon, but I'm just not interested. By the way, depending on your treatment, if chemo kills off your ovaries, there is a good chance depression and a crappy demeanor are coming regardless of taking Tamox or not.

My mo says only 5 years for me. I have 2 years left. I can't wait to get off this stuff.

intothewoods - I will mention my hair experience taking tamoxifen. I have had the female hair loss pattern since I was about 50, so I was not excited about taking tamoxifen. I also used minoxidil and have for decades and it helped. Yes, I did lose hair on tamoxifen for about 8 months, then all of a sudden, it stopped and I could feel lots of new hair growing in. It took about a year for all the short hairs to catch up with the ones that I didn't lose. They did initially have me on Arimidex and I lost no hair on it. It's not fun having thin hair or a balding pattern and anyone who has not experienced it would have a hard time understanding. Good luck and sending good thoughts

Hi! Just joined today and happy to meet all of you. Wish I had known of this site months ago. Just for reference, I have stage 1b (microstats in 1st node), grade 2, 1.5 cm, Er+, Pr -, her-2 neg, lumpectomy, oncotype score 27. Had surgery in Sept and in Oct (to get clear margins) and started TC chemo in November and end next week...YAY! Will be going on to rad (30 tx) then Hormone tx. I'm on the fence regarding this, too. I was reading about the side effects today, and saw some women experience hair thinning or lack of normal growth on tam and one of the A1s. Curious to know if anyone has experienced this or knows of someone that has. Would obviously be a such serious bummer. Are there advantages of one hormone therapy over another? Thanks so much!

Hello- I've been on tamoxifen for about 3 months, and I have had NO side effects so far. No weight gain, no hot flashes, no mood swings--nothing else apparently related. Other than my formerly regular menstrual cycles are occurring less often-which pleases me. I also feel that my odds of recurrence are excellent without tamoxifen, but I don't want to regret doing everything I can to stay well. But I can't say I'm certain I will take it for 5 years--if I do develop side effects, I can decide to stop it anytime.

intothewoods - I so understand your conflict about taking any medication that could potentially create hair loss, even minor hair loss. I was 69 when diagnosed so after the lumpectomy and rads (oncotype was 11) my onc said that Arimidex would give me the best benefit. At that time I really didn't think about hair loss because I was too loony from fear. I took it for 6 months, no side effects for the first two months or so and eventually hip/knee pain started and by 6 months it was so severe that I was awakened multiple times during the night. So at the 6 month check up I told the onc I just couldn't continue on it anymore. I experienced absolutely no hair loss from Arimidex. He started me on Tamoxifen and told me that my hip/knee issues would probably resolve on this drug. It is true that this particular set of pains did get better, but resolve, no way........but they were better and I was rejoicing that I could sleep through the night. By the end of the month I suspected I was losing more hair than usual, and by the end of the second month I was sure of it. I was so unhappy and wanted desperately to just stop all meds. My fear apparently was greater than my distress because I continued on T in hopes that the hair loss would subside. Finally at month 8 it did and that is when I began to feel new hair growing in. None of my friends have this male pattern baldness and they really just do not get how unsettling it is. I used lots of scarves to take me through the hair loss cycle. I still use minoxidil and it works well for me. Please know that I understand your fears and am happy to answer any questions. Sending good thoughts

I remain so confused and on the fence... now I have my nephew who works in the research labs looking into tamoxifen..

since then..recieved a slew of info on it.. my biggest concern is the reccurance despite (im projecting possibilities) the tamoxifen... mainly because (and i may word this all wrong.. im sorry).we are trying to work out the figures and percentages... and then the concerns that a secondary cancer is usually more agressive.. is this the case no matter what you do? My question is..if you didnt take tamoxifen and had a recurrance..was that cancer as agressive?

Side effects.. a lot of the bone pain/joint pain/har thinning/loss/sweats/depression...is alarmingly common in non breast cancer women going through menopauase...so I've managed to balance that bit out a bit better.....

I always ask women this question when they email me asking advice:

"Will you regret that you didn't try (AI, Tamoxifen, Chemo, Whatever) if you

are diagnosed with a recurrence in the years to come?"

I cannot tell you how many early stage women who had a recurrence that I've met or who have contacted me that

regretted that they didn't do  (fill in the blank) initially.

In some regards it is much easier being a Stage 3 BC patient because all the decisions

are made for you, so to speak.  Early stage women have many more decisions to make

which is really difficult and challenging.

All you can do is what is best for you!

Carynbrit--Rockym gave you some good information from Mayo. The treatments we choose to undergo or to decline (rads, hormonal therapy) are aimed at recurrence, which occurs because of cells that got away. A new primary is more like one of life's crap shoots, like the one that made each of us here the 1 out of 8 women who get breast cancer.

Deciding about treatments to forestall recurrence depends a lot, as Rockym said, on the pathological and genetic characteristics (including the Oncotype #)) of your tumor and also on your stage in life (age, actuarial life expectancy, the importance of quality of life, and also how you view the future). Since I was a fit and healthy 72-year-old with a good prognosis from my stats (and had a mother who died at 98), I decided that adding 3 months to my life expectancy of 86 years by taking an anti-hormonal just wasn't worth either their transient side effects or, more importantly, their potentially fatal side effects (stroke, deep vein thrombosis) that could shorten my life by far more than 3 months! But each of us must make this decision for herself.

The question Denise asks echoes what my highly suppportive PCP said when we discussed my decision to walk away from hormonal therapy entirely: "Just be sure that you will have no regrets about your decision no matter what happens down the line." I am sure, and I am content, and so far I am 2 years closer to 86 with no problems and with a whole lot more hiking and whitewater rafting to do before I start to get creaky! But that's me--each of us must make this decision for herself. Good luck with your decision, and take your time making it. As all of my supportive doctors said, you don't have to start right away after rads. Trudi

I also have two experiences with tamoxifen.

My grandmother was on it for 8 years after her initial dx with BC in her 70's. (I don't know what kind she had) she recurred several years later with stage IV, which eventually took her life.

I was dx'd at 41 with DCIS stage 0, grade 3 and chose to have a BMX. I refused tamoxifen and had a recurrence/new primary 12 years later. Every doctor I saw said it would not have made a difference if I would have taken it for the recommended 5 years. I never regretted my decision.

It's a hard call and one that each person has to make on their own with the input of their doctors. As others have said, you can always give it a try and see how you tolerate it

I've been on arimidex for only 3 months, but so far no se's other than occassional hot flashes. I know that in time I could get more se's, but for now my cholestrol and bone density are being monitored, and if something goes haywire I can stop the drugs. Until then I think because I was so highly estrogen positive, arimidex does give me some extra protection from recurrance.

Hello.

Rockym Yes im 43... I had 'the talk' today... looking at my age..and we went through the reccurance stuff.... and I'd read what you wrote so had a better understanding about it..and like the nurse says..if your going to get a certain type after.. your going to get 'that' type.. no matter what you have done.. i understood this.

Ran my number.12% CHANCE recurrance with tamox...24% without it.. (oncotype 19, then they ran the adjunct online). 24% without is a high number to me at my age... if i was 25 plus years or older.wouldnt be much of an issue (well i say that NOW..i dont know)..

however after many sleepless nights..and fretting over it.... am deciding to give it a shot.... going on my health/activity/diet.. SHOULD be okay..hopefully.. nurse said try it.. if no side effects great (apart from flashes ..the 'normal' stuff)...and if side effects..then stop taking it..and you'll of least have tried... sounds fair enough to me

RX is sitting at the pharmacy for me to pick up..she said start when im ready...

I hear ya sister. Your singing my tune! I have the same recuurence numbers but with IDC. 8% with AI up to 15% without. My gut in the beginning said don't do it for all of the afore mentioned reasons you listed. Including specific things to my case like the fact that it took three pathologists to say it was invasive and had to send my slides to Penn and have the stained to make the diagnosis becaus the cells looked so close to normal. I too had to weigh out whether it was worth the longterm potential effects of the drugs and whether I was willing to load on other meds to manage them with the specifics of my situation. And I don't just mean SE's. I am also talking about how it breaks down the body much quicker whn you deprive it of all estrogen.I also felt that 85%, at the worst wasn't so bad but it did give me the slighest bit of pause so I bit the bullet and tried. First Arimidex. Had every side effect in the book and maybe some new ones! Lol! It very quickly became a quality of life issue and I decided that no, I was not willing to start loading on meds try to mitigate them. There were to many and I would need everything in the pharmacy. Then I agreed to try Tamoxifen. Although it was gentler in some respects, I still had the major side effects that I would have to manage with other meds for something that potentially doesn't have to be treated in the first place. It's a very difficult position to be put in when you have a very early cancer. My Oncologist and I discussed that the decision would have been easier if I had just one variable that had been a little different. Grade, stage, size of tumor and thank god it wasn't but it made the hormone decision more difficult for me. Being a nurse didn't help because it was the medical side of me that kept tugging at me saying don't be stupid. The other issue that tugs at me is that we have a bad recent cancer history. Me breast, my sister Ovarian, my mom pancreatic, my dad prostate and now fighting Lymphoma. Having said that and having tried them I am now at peace with my decision and told my Oncologist if it recurs ever, she is not allowed to say I told you so! She laughed but actually she was supportive of whatever I wanted because she agreed that I was in limbo and it's a crap shoot either way. So I hope you can come to some peace with whatever decision you make. Have faith it will be the right one.

I am seriously, seriously considering declining hormone therapy. My MO is recommending 5 years of AI + ovarian suppression, and from her perspective, not doing it is not an option. But to me, everything about it feels wrong. I've already had four months of neoadjuvant targeted therapy and a BMX, and I'm about to start eight months of adjuvant targeted therapy. At that point, I think I need to be done with treatment - I need to move on with my life. I have a wonderful husband and a ten-month-old son, and I can't put them through five years of debilitating side effects. I know that the risk of recurrence is greater without it, but I'm starting to feel like that's a risk I can take, when I weigh it against the risk that I won't be an good mother to my baby because I'm severely depressed, the risk that I will fracture a bone running after him at the park, the risk that I will never be able to enjoy sex with my husband again, the risk that I will no longer be able to function in my career because I am too fatigued - and so on, and so on. It's too much. Yes, if my cancer recurs, I will wonder if I could have prevented it. But no matter what I do, there is always a chance that it will recur. I have to agree with what someone else said upthread - the worst regret would not be not doing it and having a recurrence, it would be doing it, going through five years of hell, and then still having a recurrence.