Stage 1 Ladies on Tamox Only

I was dx with IDC stage 1 grade 2.  Had BMX with TE's end of January.  I have been on Tamox for three months and initially had hot flashes but these have subsided.  I also had a Lupron shot, which caused fatigue, but no other SE's.  Now my knee joints hurt, which I attribute to one of the meds - I never had knee pain prior to BC.

I will have a full hysterectomy in the next couple of months and meds will be switched to Arimidex.  Hopefully, SE's will be similar to those of Tamox.

Hi there!

I'm Stage 1, Grade 1, Onco type score of 10, no lymph node involvement, ER and PR +, HeR2-.Mucinous carcinoma, rare, but in a good way Bi-lateral mastectomy, no reconstruction. Loving my flat little self!

Age 53, perimenapausal, so tamoxifen for 2 years according to my oncologist, then will switch me to an aromatase inhibitor.Side effects of the tamoxifen so far have been constipation for which a take a mirala/coffee cocktail every morning  

Vikki

Renassus. I feel for you. I was in a similar position in september. Oncotype 17 but couldnt belive that with two tumors in one breast that i wouldnt need chemo. However THREE prominent oncs concurred that chemo wouldnt benefit me. One went so far as to say it would be a crime to give it to me! Several things. I had ILC which is less responsive to chemo. I also live in israel where there is a public health system. Here and in europe they feel that chemo is overprescribed in the US. I read studies that showed that the risks of chemo in my case really did outweigh the benefits but it took me a long time to make peace w the idea that i wasnt 'doing everything' . I suggest you get another opinion and see if two concur. Everyone is dif and age and other circumstances play into a decision you shouldnt have to make yourself.



I had the hyst two yrs before dx for large fibroid but kept ovaries. Unscientifically i wonder if some of us BC women dont have a predilection for over reacting to estrogen and growing unwelcome things. Not having a uterus takes some of the worry out of taking tami but because i still have ovaries which are suddenly being stimulated by tami i need to take lupron shots to shut them down. I was advised to keep them at time of hyst as theres no ov ca in the family.



Good luck with your decisions and feel free to come here to discuss.

Shari

Rennasus, not even sure what grade, if you can believe that. I think it may have been a mixture of grades, but I was told that what was most relevant was the oncotype as it takes grade into account. I also had lobular ca which has some differences from IDC. Size was less significant.

 Anyway. I would try not to obsess (HAH! right...) to the point that you need a degree in oncology. We simply can't do that. Go see the three best oncs you can, even if you have to travel, then pick the one you trust the most and go with their recommendation and then try not to look back.  In my case it was not that hard since there was a unanimous consensus not to do chemo. I would try to see if you could at least get a majority opinion or an opinion from a center or doc you can really trust. I am concerned that at times chemo is suggested by docs if you're on the fence as a way to cover themselves but you can ask them to give you actual statistics about the decrease in risk you'd get with chemo. If it's very small you need to weigh the risks of chemo vs. small gain. You simply can't make this decision alone. Also don't make it based on other stories you hear or read about. You don't know everyone's particulars and even slight differences can be meaningful one way or another. Again, onc's dept.

Good luck!!!! Shari

Thanks for starting this great thread. I'm stage 1, finishing rads (last Tx today. hurrah) and will meet with my MO in two weeks to have The Talk about tamoxifen. Glad everyone is sharing their experience. My understanding is that tamoxifen reduces our relative risk by 50%. I'm stage 1 (tumor 0.5 cm), grade 1 IDC, so my understanding was that my risk of recurrence is lower than other Dxs, so my relative benefit of taking Tamoxifen is a bit less. i.e. I get all the risks of anyone taking it, but relatively-speaking, fewer benefits. Does this jive with what you've heard?  Also, I thought having a bilateral mastectomy reduced the risk of recurrence by 90% , so that if I had chosen that, I wouldn't need to take tamoxifen. But it seems like several women here did the BMX + tamoxifen. When I look at these numbers, it begins to feel like my Calculus class back in college--you keep reducing odds, relatively, but can never get to 0. 

Dear Peggy: I know of other women who aren't taking tamoxifen. You may want to start a thread of stage 1 women asking them why tami wasn't indicated. In my case it is the only line of treatmt (besides mx) and my tumors were highly estrogen positive so it is beneficial. It was explained to me that this is the treatment in my case, instead of chemo.

Thanks, Shari

Rennasus, we are very similar.   I also thought I would be stage 1 from the biopsy but I turned into stage 2 when they got the actual size of the tumor.  They also found a second tumor, 4mm, so I decided to have BMX.  I am highly ER+ and PR+.  I was grade 1/2 on the biopsy, but the final pathology said grade 2/3, which was a little alarming to me.. Nevertheless, my oncotype came back at 16 and chemo was not recommended to me.  The graph on the oncotype report only shows a 2 or 3% additional benefit of chemo. I haven't started the tamoxifen yet.  I  have my prescription but am recovering from surgery so I am to start early to mid-June when I am fully mobile. 

I'm not sure it matters when you get the Tamox. test...it is looking at the availability of that enzyme, I think.  I got tested just a few weeks after starting it.  About 10% of women are "poor metabolisers."

Dear peggy-j, i am sorry but i don't know much about women who choose not to take tami but there are other threads on this and the alternative med forum that elaborate on this. Scroll through the headings and see what you find. That being said, i rest better knowing i have something blocking the estrogen swirling around in my body. So far the SEs have been manageable. Just completed a 3.5k swim race! Hot flashes, joint pain and all. I amnot in the greatest shape but wanted to prove to myself that even with all thats gone on i can be normal and then some.



Hope this is helpful, shari

Glad to find this thread! I have been on Tamoxifen for 3.5 years.  For the last 1.5 years I've been working out with a personal trainer and walking 8-12 miles a week.  During the summers, also swimming.  I have not been able to lose weight and during the six months after my bilateral mastectomy, my blood pressure was going up 10 points per month.  I was on Benazapril, but recently read that it increases the risk of bc recurrence by 77% so I have stopped taking it.  Losing weight is the safest way for me to lower my bp, but I do think Tamoxifen is making it impossible for me, unless you call 1/2 pound per month a success!   I never had chemo, and did have a full hysterectomy 2.5 years ago.  After reading last night that Tamoxifen does cause liver issues and studies showed more adipose (belly) fat in those taking it, I am going to stop for a few weeks.  I have pain, but also have scoliosis and am not sure if I can blame any joint pain on the medication.  I think my risks of problems from being overweight are greater than my risk of recurrence at this point.  Plus, my surgical oncologist told me that having had a hysterectomy in my situation, studies in Europe showed that to be just as effective.  It's all very confusing and worrisome, but I need to see if I can shed some weight by pausing the Tamoxifen for a few weeks or more.  I did not receive on Oncotype score.  My cancer was 7mm IDC, no nodes, grade 2/3. I'm not happy about the grade, but I am also not happy about taking a drug that is not exactly without problems of its own.  I see my onc for a six month check this coming Friday and will inform him that I'm taking a break for a few weeks.  He won't be happy, but I am not happy in my situation either.