Have you not taken Tomaxifen? Any recurrence or new cancers?

ArmyWife322007 · May 2009

I'm almost 38 years of age. Just finished radiation 2 weeks ago after a lumpectomy back in December on my left breast. Was diagnosed with IDC. Had a 1.3cm tumor, clear margins, negative nodes, ER+, Stage 1, Grade 2. Am now supposed to go on Fareston, a drug similar to Tomaxifen in its behavior and side effects but usually used on post-menopausal women with metastatic BC. I was on Toma 6 years ago for an entirely different medical problem and had awful side effects: constant uncomfortable body temperature, hot flashes, couldn't sleep, depression, irritability, loss of appetite (because it dulled my sense of taste), and loss of labido. I didn't stay on it but for maybe a few weeks at best and I called the doctor and told her I was going off of it, that the side effects were ridiculous and unbearable. Granted, I was also on a birth control pill at the time, so who knows if and how that worsened things.

Healthwise, I've come through the surgery and the radiation well with virtually no out-of-the-ordinary problems. I feel just as good as I did before I found the lump in my breast last September. My health is otherwise fine. I have a real problem with potentially poisoning that which would result in physically--and therefore mentally---stressing me out, injuring my immune system, and possibly making me more vulnerable to other health issues including the risk for endometrial/uterine cancer or some other type.

Has anyone foregone the Tamoxifen (or Fareston)? Have you had a recurrence of your cancer or developed another type? How long has it been since you completed your surgery, radiation, and/or chemo?

gcpommom · May 2009

I turned down the tamoxifen back in 2004, I had DCIS, no testing done for hormone receptors, so I don't know if it was er/pr pos or neg. I did a lot of research on tamox before deciding, and didn't feel that the benefits outweighed the risks. Plus, I didn't even know if my DCIS was er+, so didn't know if it would help.

In Dec 2008, I was diagnosed with a new primary in the other breast. This one is triple negative for er/pr/her2.

My onc said that taking the tamoxifen would not have made a difference in my case, since TN cancer does not 'feed' on estrogen.

I really struggled with the decision; I was only 40 at the time, and did not feel comfortable taking tamox; like you said, I didn't want to deal with the side effects during those last few 'young' years. I have no regrets about my decision at all.

Now, would I feel differently if my new dx was er/pr positive? Possibly. But I have heard women on this website say that even with tamox, they had a recurrence, so there are no guarantees.

marmsie · May 2009

I was first dx in 2000. It was a triple negative (though that term was not in use back then). But ALL the docs I saw thought I should take Tamoxifen. I think it was because they didn't know what else to do for me - it just seemed "prudent" as I was 41 and still premenopausal in spite of chemo. So I took it for close to 2 years.

The side effects were not pleasant (hot flashes, zero libido, and horrendous menstrual cycle issues) and I finally said no more. None of my personal research could justify it for my triple negative cancer. I ended up having a hysterectomy with ovaries removed too, which may or may not be totally due to Tamoxifen, but it sure is coincidental.

So here I am with a new primary 9 years later that IS hormone positive. Should I have stuck with the Tamoxifen? Who knows. I've let that be a curious passing thought, but I just can't dwell on it at this point. I know that an AI is going to be recommended to me again - we just haven't got to that point yet. But now I'm post menopause. Different drugs to research and wonder about.

So much is just not clear cut - sometimes it's like pick your own poison. It's an individual choice and comfort level.

MarieKelly · May 2009

I was diagnosed in February of 2004 just after my 49th birthday when I was already 8 months into menopause. The breast cancer was a 1 cm, grade 1 mixture of 60% IDC mixed with 40% DCIS. I refused tamoxifen, arimidex and also post lumpectomy radiation, so the only treatment I've had is a lumpectomy with wide margins and biopsy track removal. I also had a SNB with only a single node removed. No surgical complications and an excellent cosmetic outcome - you can barely see my surgical scars anymore and would never even know I had the surgery by looking at me.

I've been locally recurrence free for 5 years as of the latest mammogram done in March and haven't even seen an oncologist or any doctor in regards to the breast cancer since a few months after my lumpectomy. I get yearly mammograms and that's the extent of any follow up. Once the surgical pain had resolved, my life went on as it had before the diagnosis - literally almost as if it had never happened except for still reading this forum occassionally,

rdrake0 · May 2009

MarieKelly,

You certainly have been very very lucky indeed! I am glad to hear you still do yearly mammos.

I am taking the precautionary route with rads and Arimidex. Your stats look alot like mine, but mine was multifocal.

Good luck to you in the future.

achen2iron · May 2009

I was diagnosed with atypical hyperplasia in 8/08 and offered tamox, turned it down because I didn't want to go into menapause at 44. At the time I had IDC but we didn't know it, It was found in 3/09 by a MRI. Am now in surgical menapause, They are going to put me on tamox followed by an AI in 2-3 years now because I guess your adrenals produce some estrogen., My thought is that I'll take it and see what happens as far as the side affects. So far I'm only having mild hot flashes and nothing else from the ooph. Are you still on the pill? Mabey it was a combo of all the hormones from before. I'd pretty much take anything they tell me to take now, I really really do not ever want to deal with a met, after going through all this.

MarieKelly · May 2009

rdrake0,

It's not at all that I'm a lucky person. Sure wish I was that lucky - I'd buy a few lottery tickets! The reason I've made it this far after refusing everything but surgery is because the tumor was small, low grade and excised with very wide margins - and the biopsy track removal was an additional factor that also may have helped in preventing a recurrence thus far. I spent a huge amount of time researching all available information before making the treatment decisions I made. So there really wasn't any luck involved in this outcome because what I learned clearly told me that my risk of recurrence was very low doing nothing but the lumpectomy - as long as my surgeon was able to get very wide, clean margins.

Be careful when you're comparing your own stats to others you see on this forum. You mentioned "your stats look a lot like mine" but actually, yours are nothing at all like mine. You had a grade 3 and that alone makes it a completely different type of breast cancer that what I had. Grade is very, very, VERY important when assessing the prognostics of breast cancer and even if everything else is exactly the same when comparing breast cancers stats - size, hormonal status, node status, Her2 status, age at diagnosis, menopausal status etc etc - the grade difference makes any comparision completely irrelevant.

Best wishes to you -

Julie76 · May 2009

Marmsie,I took Tamoxifen for the 5 yrs.Actually,I had my periods during two types of the chemo(can't recal the names right now lol),but when I got to the Taxol it stopped.Got my period back about 2 months later,started Tamoxifen then,still had periods but were irregular.Don't know if it was to the chemo or Tamoxifen.And by irregular,I mean it never looked the same.I had a period every month,just different it appearance than what it should have been.

I ended up having a complete hysterectomy also at age 31 due to ovarian cysts(one was the size of a small grapefruit)and severe endometriosis,which I feel the tamoxifen contributed to.I think I had endometriosis even in my teen yrs.But all the chemicals I had to pump in my body in order to survive cancer,I feel made it worse.

Julie76 · May 2009

I also took two yrs of Femera.My oncologist wants to put me on Evista for osteopenia and it helps with the re-occurance.But it has the risk of heart attacks and strokes,which two of my grandparents had strokes(my mom's parents) and my mom's mother had hear attacks and my dad's dad and mother had heart attacks,.So I don't know.Gonna see her again in June and voice my concerns then.I haven't started it yet. But I want to ask about alternatives for treating osteopenia.

But it's been almost 9 whole yrs since diagnosis of breast cancer.So far my odds are good.

REKoz · May 2009

MarieKelly- What is a biopsy track removal? Never heard that term. By the way, my future son-in-law's Mom is Maria Kelly!

Best,

Ellen

MarieKelly · May 2009

Whenever a needle biopsy is done, there's a section of breast tissue through which the needle enters and later exits on it's way to retrieve a piece of tumor for examination. That's the biospy track. When that needle is pulled back out after having latched onto a piece of tumor there can sometimes be cancerous cells deposited along that pathway as it's exiting the breast. A biopsy track removal is when a surgeon removes that section of tissue that the needle passed through - usually at the same time a lumpecotmy is done. T

Not all surgeons automatically do this - in fact, most probably don't. Just like many other things in the world of medicine, there's controversy surrounding the importance of doing so. Some feel the track removal is unnecessary in that it's assumed post lumpectomy radiation will take care of any stray cells left behind by the needle in the biopsy track. Others feels that those cancerous cells left behind only very rarely take root and grow into a tumor, so generally no real need to worry about it. Some have done studies showing that cancerous cells are deposited in the biopsy track only rarely while others have found the exact opposite. Still others feel that biopsy track seeding is a very real potential threat and that the biopsy needle track should be removed to further decrease the possibility of local recurrence. This is what my surgeon believes and that's why I had my biopsy track removed during my lumpectomy..

Beesie · May 2009

ArmyWife,

MarieKelly said the magic words: "Be careful when you're comparing your own stats to others you see on this forum." No two cases are alike. Even if the basic pathology seems to be the same, the surgical margins might be different, the % ER+ might be different, your age may be different (it's believed that younger women tend to have more aggressive cancers), etc. etc.. So many factors affect recurrence risk and affect the benefit that you may get from a drug like Tamoxifen.

So will you find lots of women who've chosen to not take Tamoxifen who haven't had a recurrence? Yes. And you'll also find some women who didn't take Tamoxifen who did have a recurrence. You'll even find women who took Tamoxifen who had a recurrence. But every situation is different. My suggestion is that you ask your oncologist to answer these questions, specifically based on your pathology, age, family history, etc.:

What is your local (i.e. in breast) recurrence risk if you don't take Tamoxifen? How much is your local recurrence risk reduced if you do take Tamoxifen?
What is your distant (i.e. beyond the breast) recurrence risk if you don't take Tamoxifen? How much is your distant recurrence risk reduced if you do take Tamoxifen?
If you don't take Tamoxifen, what is your risk of being diagnosed with a new primary breast cancer, in either breast, at some point in the future? How much is this risk reduced if you take Tamoxifen?

Once you have this information, you should know, based on your own risk tolerance levels, whether it's worth it for you to try Tamoxifen or not.

vision4utoo · May 2009

Hi all ~ weighing in on the Tamox question. I too had many questions about taking...Which I decided not to after a two week trial, the SE's were too much for me personally, I am really sensitive to any type of chemical additions. My Onc and I decided that my risk was low and I could do without it. I wonder if I will regret down the road, but I know for me that QoL was more important, being 43 and pre-men at Dx, Chemotherapy put me in perm/instant menopause. My cancer was estrogen sensitive - I am just coming up to my 1 yr since DX (June 19th). I just could not emotionaly and mentally function on the Tamox ~ each decision we come to is so personal and based on our individual Dx and life, plus team of Doc's and their recommendations...I want to be available now for my life and children and Tamox was not allowing that, I feel that even if I do get recurrance or mets, I wont regret that, or at least I hope I wont second guess that choice - too late now, just time to LIVE! I find it incredibly humorous that my cancer is hormone based, that my hormones were out to get me...(long story).

Be well ladies, Live well today!

my3girls · May 2009

Wow!!! Vision...can I relate to how you feel. Difference for me is....although the tamox was no picnic..it was much easier than the Arimidex my OC switched me to, after my hysterectomy last Aug.

I know we shouldn't compare dx, but yours is very simular to mine. My feelings are very simular to yours, about the quality of life. I have 3 daughters, youngest is 18, but they are my life..and I want to enjoy everyday..not be in so much discomfort all the time. You mentioned the humor in your tumor being hormone based..esp. estrogen. I think I know of the humor that you speak of. I always was very moody pre period from the time I was 14 on..and then I had adult acne...not really bad, but bad enough for an adult to deal with it. My doctor always said my acne was hormonal!! Go figure..the estrogen was out to get me!!

How did you deal with the chemo vision? Is your hair coming in? Mine is pretty long after only a year and a half of growing, with many trims! It's curly..and sassy!! Love it!

I will be talking with my OC in a few weeks about my AI. I took myself off the Arimidex..it was just too harsh. I lasted 8 months! We will see what she has to say about another AI or tamox.

Take care,

Lisa

reen · May 2009

I was on Tamox for 2 years and had a second breast cancer anyway. Now I'm on Arimidex. Hopefully that works.

juliejfsrj · May 2009

I took tamoxifen for ten months. Because I was having herceptin treatments at the same time, I couldn't have a true hotflash, somehow the herceptin seemed to suck the blood out of me. i was pale all the time and my veins shrunk to invisible. I did have leg cramps at night, and painful joints, but this was no big deal. The main problem I had was with mood. I have now been off of tamoxifen for six months, and still having residual effects. My breasts are smaller and very light. They are just fattty. Which is different! But again, the mood change has been the most difficult to deal with. I'm waiting for things to improve.

vision4utoo · May 2009

Hi all - I had numerous side effects with Chemo - but they are all but gone now, nueropathy and short term memory, distractability has improved but not fully functioning - and yes, I have the Poodle curl...haven't had cut yet and it is cute...kind of. Wanting to cut it off - but trying to be patient.

My3girls: My oldest is going to be 18 this June and off to college - we have graduation this week, I am so excited - my youngest is 11. They are my life too! My oldest lost her soon to be step mommy to breast cancer, my ex's fiance, whom we all adored, so at time of DX my concern was mainly for her and getting her to understand that mine was caught early and handled differently.

I also had the pre mens crazies from early age, my mother said she could time the "upsets" by my time of the month. Poor woman! LOL!

Tamox was really difficult for me emotionally, but each of us are different and various stages of risks...Have a wonderful day!

Have you not taken Tomaxifen? Any recurrence or new cancers?

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