Any story on not taking Tamoxifen but still survived >10 yrs?

blueice2013

Anybody knows or hears any story that the breast cancer patient did not take Tamoxifen but still survived more than 10 years?

My BC is DCIS, stage 0~1, grade 3, unilateral mastectomy. I was on Tamoxifen for three months, but found a 7 cm cyst in the right ovarian, then I stopped Tamoxifen, the cyst is totally gone. Now I am at the crossroad on deciding whether to retake this medicine or not?

Any experience or story heard before is welcome to share, appreciated it.

WinningSoFar

Did Tamoxifen cause the cyst?  I'm not aware that Tamo does that. 

pajim

My Mom did not take any hormonals after her lumpectomy & radiation.  She was fine for 16 years.  Small recurrence with mastectomy.  Now she takes an AI.  I expect her to live out her normal life span.

blueice2013

This topic does not trigger a lot of discussion...meaning it is not optimistic? No such stories exist?  ((

april485

 I posted this answer to your question in the DCIS thread. Here it is again.

blueice, I am sure there are thousands of women who did not take tamoxifen and survived more than ten years. Many women opt out of this drug, particularly with early stage and even more so with DCIS. Since I am post meno, I opted to take aromasin which is prescribed off label since the only approved hormone blocker for DCIS is tamoxifen right now although studies are done and soon AI's will likely be approved. Most women diagnosed with DCIS survive more than ten years, with or without rads and/or tamoxifen. Hope this allays your fears if you opted out.

farmerlucy

Blue my stepgrandmother had BC twice in her fifties, they were different types as well. She took no hormonals and lived until her 80's and died of heart disease. 

new_direction

I don't know if I have become too sceptic but I just find it so strange that it is not possible to test everyone's tumor before starting antihormonals - I think for those who benefit from it it makes a huge difference, but many are taking this drug for years and years only to gain several pounds and SE.

I would love to be able to skip it, my tumor is luminal B, shown to not benefit as much as luminal A cancers, but I don't have any guarantee there is no benefit.

Comparing the possible benefits from tamoxifen with possible side effects, for me the side effects had to become severe before I would consider quitting tamoxifen.

About tamoxifen resistance; i just found this article: http://www.sciencedaily.com/releases/2014/06/140613084502.htm
"the inexpensive anti-malarial drug hydroxychloroquine (HCQ) reverses resistance to tamoxifen, a widely used breast cancer drug, in mice."

 

 

blondiex46

I didn't  take it, recurrence  in 14 years 96 through 09

Bren58

I opted to not take it back in 2000. All was well for 12 years, then I got a recurrence/new primary. Every doctor I saw said that my decision to not take the tamox did not factor into my recurrence. On the flip side, my grandmother took tamox for 7 years, and got BC again 17 years later. In my grandmothers case, if AI's were available, it would have been better for her to take them as she was post menopausal. It's a personal decision that only you can make.

blueice2013

april485, new_direction,farmerlucy, 

Thank you all for sharing info with me for me to think about this issue from different angles. Appreciate that. 

blueice2013

blondiex46, thx for sharing your exp with me. Was your recurrence on the same side? how did you discover your recurrrence? through which testing method?

blueice2013

Bren58, thanks a lot for sharing your and your grandmother's experience. Your recurrence is not the old side, but a new BC, right? How did you and your grandmother find out the recurrence? any symptoms need to pay attention? any tests we should monitor to observe the recurrence? I believe no matter we take tamoxifen or not, we should closely monitor the possible recurrence (I do not mean we should worry all the time, but the necessary monitoring should be carried out), the earlier, the better in terms of treatment.  

Stage_IV_in_Montreal

I took Tamoxifen for 11 days in 2003 after chemo ended and stopped because of unbearable side effects; no quality of life.  I went 7 years and then my cancer went metastatic with lung metastases.  The doctors apparently blame it on me not taking Tamoxifen, although it is only good for 5 years.  I would have been on the next drug then.  Would I have still gone metastatic even if I had taken Tamoxifen?  Unknown.  I am now coming up on 4 years metastatic.

Bren58

blueice, my second round of cancer was on the same side as the first. I found a lump under my arm which turned out to be a cancerous lymph node. I don't know how my grandmother found her second BC.

fancythis

I had pretty much the same diagnosis as you. Right masectomy. I was asked to go into the Tamoxifen trail for 5 years. Did it 2 years and after ovarian cyst and fibroids I went off it. I am cancer free 8 years now. Hope this helps. 

coraleliz

My great aunt(grandmother's sister) was 40 when diagnosed with BC & had a MX. She never had a reoccurence & died at 98 of heart failure. Tamoxifen wasn't an option back then. My guess is she had IDC because DCIS was being diagnosed/treated until more recently. I think Tamoxifen usage started in the 70s. But I'm not a history buff. I have IDC with 2 lymph nodes involved. I was told there was a 25% chance of reoccurence without any treatment other than surgery(MX). 3/4ths of women with my cancer will not have a reoccurence, treatment or no treatment.

I'm taking tamoxifen & the GYN issues are really a pain. The polyps, fibroids, thickened lining & cysts. I had an ovarian cyst. The GYN check an ovarian tumor marker & it was "borderline". When the cyst resolved,  without treatment or stopping tamox, my tumor marker was lower. 3 yrs down & 2 to go, wonder if I'll need a hysterectomy before I'm thru?

I really don't know if I would take tamoxifen for DCIS. The prognosis would have to be better than mine, with or without treatment

klanders

Stopped tamoxifen after two weeks. Cancer is back two years later with lymph node involvement. My docs blame it on my not taking the tamoxifen, although I've read stories on this forum about women having the cancer come back WHILE they are on tamoxifen. It's so hard to know. You just have to try to get the best advice and pray that it doesn't return.

annieoakley

Klanders, I took my tamoxifen faithfully everyday for 2 years and I had a recurrence in my bones. My original diagnosis was stage 1, grade 1 and no lymph node involvement. I thought it was going to protect me for at least 5 years and that didn't happen. The docs shouldn't be blaming you, sometimes it's a crap shoot. Wishing you the best, Annie

Bren-2007

Blueice... I just had my 8-year cancer-free anniversary. I took Tamoxifen only for six weeks. My tumor was IDC, stage I, grade II, 100% ER positive.

I think it is a crying shame that a doctor, or anyone else for that matter, would blame a woman's recurrence on her for any reason.

Bren

LynnInCalif

I could not take the med. My energy level and ability to work were impacted and I declined. This was in 2007. Stage 1, Grade 1. 1.5 cm. Low/practically indolent status with regard to cell activity. I had slides sent to genetics lab in SF and to John Hopkins for analysis and 2nd opinion first. Mammosite radiation and lumpectomy. Medicinal marijuana which i use daily.

Bren-2007

Lynn ... may I ask what you're using the medicinal cannabis for.  Is it for something specific or a general sense of well being?  I live in Virginia where medical and/or recreational weed is still illegal.  I couldn't take Tamoxifen or Arimidex as the nausea and vertigo were so severe I couldn't even drive.  I was really sick the whole time I tried to take both of them.

hugs

Bren

TessaW

I've taken the tamoxifen and they STILL found 3 nodules in my lung. So don't blame yourself for not taking the tamoxifen.

Boobiesister60

I am new to the site and was just reading through the posts,, when I read your post KLANDERS. This whole cancer journey is one big question mark! I started out with what was said to be Stage 0 DCIS - I chose to have a bilateral mastectomy with immediate implants. When my lab results came in, it was now Stage 2 Invasive cancer with one sentinel node affected. My auxillary lymph node dissection was clear - had compact dose chemo AND 28 rounds of radiation, which I finished in September 2014. Next step was Letrozole as I was post menopausal and despite being on this medication, by December, same year, I was diagnosed with Stage 4 bone mets. I was then put on Tomoxifen and honestly dont blame you for not taking it. I am having such a hard time with the side effects that I am also wondering whether it is worth taking it as my quality of life has been terribly compromised. I have terrible joint and muscle pains and very blurry eyes - to the point where I now battle to read a book. I always believe in making peace with the decisions we make in life because at that point of the decision, we believed it to be the right decision! Good luck with your journey - may it last many many years! (obviously with the least discomfort!)

Bren-2007

Boobiesister ... just wanted to send hugs. I am so sorry to hear about the side effects you're having with Tamoxifen. It's a really hard decision to make about taking it or stopping. I wonder if you would be able to tolerate Faslodex or one of the other ER+ treatments better than Tamoxifen.

Tessa ... sucks that the Tamoxifen didn't help. I have a very close friend who recurred while taking the medication. Actually, I know a few gals who have had the cancer come back while taking an antihormonal. I know that had I been able to tolerate it, I would have taken it the whole five years.

hugs

Bren

Jennie93

blueice, I have a friend who had BMX about 7-8 yrs ago and a family member who had UMX about 12-13 yrs ago. Both had IDC, not DCIS. Both couldn't take tamox because of preexisting blood clotting issues. The friend is premenopausal and the relative was dx before the AIs came along, so neither has taken those either. Just the MX, no chemo, no rads, no tamox, no AIs. Both are perfectly fine and healthy.

I don't actually see too many people here taking tamoxifen if they only had DCIS. I probably wouldn't.

MamaShift

I didn't take it and I'm now over 7 years post dx (not exactly what you're asking, but 7 years is pretty good).

ReniT

I decided not to take tamoxifen for my IDC stage IA, dx one year ago and still doubting whether I had made the right decision.

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ReniT-

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dtad

I would just like to add that only 50 percent of women complete the 5 years on ant hormones due to side effects. Of course there are no studies on those women. My aunt had IDC back in the 80's and never took a anti hormone and she was fine. Crap shoot if you ask me......

Wendy3

I have been on Tamoxifen for four months now. SE have not been to bad lost fifteen pounds had a bit of issue at the onset with appetite and night sweats. My weed oil helps with those side effects sometimes I get nauseous but it's bearable. I want to ask my oncologist at my next appointment if it's a t all a possibility to cut the dose in half . Has anyone here done that?

dtad

Wendy I don't think you will ever get a doc to say its ok to take half because there are no studies on it. They also have never calculated the dose by weight. Good luck and let us know what your doc says.....