Topic: Do you take Tamoxifen? Why/why not?

Apr 7, 2008 03:12 PM michmom wrote:

Hi Leslie  I am taking tamoxifen but my situation is slightly different from yours.  I was also DCIS Stage 0 and had mastectomy on Rt in Jan 07.  The pathology report came back ER+.  My doctor wants me on tamox to reduce risk to other side.  Being that you had a bilateral and it remained Stage 0 after the path report I wonder with an even smaller risk than me, why your oncologist wants you to take it.  I thought since tamox blocks estrogen from working on those cancer cells that react to estrogen, what other body parts can it help?  There are side effects including a risk of uterine cancer, so I think you might want to question him more about it.

Hope this helps

Michele

Apr 7, 2008 04:14 PM MarieKelly wrote:

I was diagnosed in 2/04 with a small low grade tumor that was a mixture of both IDC and DCIS. The ONLY treatment I've had was a lumpectomy and SNB. I had just turned 49 when diagnosed and was already about 9 months into a natural menopause at that time. The first oncologist I saw was one who I had previously worked part-time for (I used to be an oncology nurse) and never really cared much for him even then, but was more or less railroaded into consulting with him by the breast care coordinator while I was still shell shocked from the diagnosis. He tried to get me to take tamoxifen and pooh-poohed my various concerns about potential side effects vs actual benefit, telling me that there really were no significant side effects...I fired him on the spot and had my records transfered to a different oncologist (one who happens to be my neighbor).  My neighbor oncologist agreed with me that tamoxifen wasn't a very good idea considering some pre-existing medical issues I already had, but suggested I give arimidex a try. I refused that as well, but was able to get him to admit (off the record) that although he agreed with my rationale that I would probably do fine without anything, he couldn't officially recommend that to me.   

My cancer was small and low grade and the surgeon (also now a neighbor), knowing that I was probably going to refuse radiation, made sure to remove the needle biopsy tract along with the lumpectomy specimen. Having the biopsy needle track removed significantly decreased the chance of THAT cancer recurring. With wide, clear margins, a small low grade tumor, negative SNB, very low Ki-67 (5%), no vascular invasion, excision of the biopsy track and good surgical lumpectomy technique, non-dense breast tissue (making mammogram ID of a new or recurrent tumor very easy), and already being in a natural menopause all add up to the odds of both systemic spread and local recurrence being very low and the probability of a complete surgical cure being very high.  Those odds were good enough for me because I'm not worried all that much

about THAT cancer should it return. Not having altered the cellular DNA with radiation and drug therapy, it's very likely that should it return, or a new cancer develop, it will again be another low grade cancer (and surely caught much earlier the next time)...and my choice of no treatment other than surgical excision will likely be repeated once again..

Apr 7, 2008 06:38 PM, edited Apr 7, 2008 06:39 PM by Beesie

Leslie, my diagnosis was more 'severe' than yours, since I had multifocal high grade DCIS and a microinvasion.  I also only had a single mastectomy.  My surgeon and my oncologist both agreed that after the mastectomy, my recurrence risk is approx. 1% - 2%.  I've done tons of research on this and a 1% - 2% recurrence rate after a mastectomy for DCIS seems to be what most studies have shown.

For that amount of risk, my oncologist recommended against taking Tamoxifen.  He did say that I might want to consider taking Tamoxifen to protect my remaining breast, but he actually recommended against it, saying that he felt that for me, the risks would outweigh the benefits.  Again I did a lot of research, and I reached the same conclusion.  Tamoxifen is not without risks (as well as possible quality of life side effects) and I don't feel that the benefit that I'll get from Tamoxifen warrants exposing myself to those risks. 

Leslie, in your case, you've had a bilateral, so your risk of a contralateral (i.e. other breast) BC should be very low.  The one factor that goes against you is your age - the younger you are when diagnosed, the more likely it is that your cancer may be aggressive.  But you had low grade DCIS, which is non-invasive, and since virtually all your breast tissue has been removed (with your bilateral), I'm a bit surprised that your oncologist would put your risk to be as high as 10%.  There's always a little bit of breast tissue left after a mastectomy, so of course there always will be some risk, but 10% is on the high side. It must be your young age that is driving that.

If you really aren't sure that you want to take Tamoxifen, my best advice is to get a 2nd opinion from another oncologist.  See if another oncologist also puts your risk at 10%, and if he/she also recommends Tamoxifen. 

Apr 7, 2008 07:31 PM PSK07 wrote:

Dx at age 46, pre-meno, with intermediate grade DCIS. The original plan was partial mx (lumpectomy), then radiation and tamoxifen. After some hemming and hawing and a second opinion, I had rads. The onc I met with was 'on the fence' about tamox & said he hadn't prescribed it to his mother due to the potential SEs. After rads, the rad onc talked to one of his colleagues who said that tamox would probably be overkill for me.  I've been experiencing some uterine issues that are still to be resolved. Once those are taken care of, I'll revisit tamoxifen - probably with the gynocologist as there really isn't a med onc around to see.

Apr 8, 2008 01:49 PM 4Ms1A wrote:

I had DCIS in 2005 and my radiation oncologist suggested I take tamoxifen as did my surgeon.  I hate the side effects but at the same time I elect to take it because if I ever have a recurrence, I want to know that I did everything I could to prevent a recurrence so I do not have to live with "what if".......

Apr 8, 2008 05:08 PM PhyllisCC wrote:

Hi,

I was dx with DCIS in Oct 2007.  Biopsy showed extensive multi focal dcis grade 1 and 2. Rt Mast in November 2007. That pathology showed comedo necrosis and a mixture of intermediate and high grade.  Even with that diagnosis, my BS did not see any reason for me to see an oncologist, except that I requested the referral.  My concern was for my remaining "good" breast.  After meeting with the oncologist in January he said No to  tamox.  Mostly due to my age, 56, and no family history.  His opinion was that tamox was actually a better choice for pre-menopausal woman as they seem to handle the side affects better.  In my case, even though taking tamox would reduce my reoccurance rate in my good breast by half,  the rate was already pretty low and he didn't feel it was worth it to risk some of the bad side affects. There is a small risk of reoccurance in my left breast, but I am quite comfortable with my decision. But I made it after reviewing the statistics with a trusted professional.  Confusing, isn't it?  You might want to see another oncologist for a second opinion or an explanation of why tamox is your recomendation.  Phyllis

Apr 9, 2008 02:10 AM Anharad wrote:

I don't. I think that there are better drugs, with better results and fewer side effects. I had to find another doctor to do this though. It is Femara. When the druggist filled my prescription, he said that it was the first he had filled and added that he thought it was a big improvement over other drugs.

I have had very few side effects and am really satisfied with the results.

Apr 9, 2008 06:21 AM hopefor30 wrote:

Although you might like Femara better and think it is a better drug, it cannot be taken by premenopausal women -- the only option for hormonal therpay for premenopausal (unless you have your ovaries removed) is tamoxifen.

M.

Apr 9, 2008 10:44 AM PSK07 wrote:

DCIS patients can take only tamoxifen or nothing - no other hormonal treatment is approved for DCIS. Anharad, since you have IDC, there are different options such as Femara. Us DCIS girls don't. (lucky us, ha!)

take care.

Apr 9, 2008 01:22 PM 3girls4me wrote:

Thanks again to all......

Beesie, you ROCK!   I always look to your information.

Well, after calling my oncologist back yesterday to ask why exactly he was recommending the Tamoxifen, and did the benefits outweigh the risks, he called me back to say that since I had bilateral that normally Tamoxifen would NOT be recommended.  BUT, since my DCIS was "multi-focal", that that presents a twist.   And that my risk of metastasis was very low.  (Does Tamoxifen help prevent recurrence ANYWHERE in the body?   Lillie Shockeny at Hopkins says yes).   He said he couldn't give an exact % of recurrence, just less than 10%, and that taking Tamoxifen would reduce it by 30%, leaving a 7% risk.  But that I could possibly have a 5% chance, and tamoxifen would lower it to 3%.   He agreed that it wasn't a significant reduction to warrant the risks.   Everything I've read says I have a 1-2% chance of recurrence.   I don't know why his numbers are higher......maybe my age?

He said he conferred with 2 colleagues, and both of them said they would NOT recommend it for me.   But admitted he is "ultra conservative".    He then said he changed his mind and said he's not recommending it, but it is my choice if I want to take it.

I think I'm NOT going to take it.   But it's sure had my head spinning for 2 days!

Jul 25, 2008 10:37 PM mcinky wrote:

My mother just passed away on JULY 4,2008. She was diagnosed with uterine cancer three months prior. She had breast cancer 13 years ago and her Dr. gave her tamoxifen. She took it everyday for six years so her breast cancer would not come back. The first side effect for this drug is uterine cancer. My mom went to radiation everyday. She wanted to live. Her Dr. told us that she should not have been on this drug longer than 2 years. Please do some research before you take this.

Apr 4, 2011 04:12 AM, edited Apr 4, 2011 04:22 AM by Ruth_in_singapore

my 60 year old mother (cancer stats in my signature) was prescribed with Tamoxifen after her bilateral mastectomy along with TCH and radiation.

I have to reiterate that she is post-menopausal so we do not have to worry about her ovaries producing hormones or estrogen. (it seems you are pre-menopausal so this is still something that you have to worry about-- it probably helps that according to a clinical study (AFP and HCG- just google it)-- being pregnant an early age, can reduce breast cancer risk-- it probably will help you reduce the risk of DCIS progressing to invasive cancer-- this is just a wild guess-- feel free to challenge)

did she take it? (Tamoxifen) --

answer: No

why?

because she prefer to work at the root cause rather than working on the symptoms. she preferred to balance her hormones under the guidance of an endocrinologist specializing on women related illnesses (including breast cancer) and hormones. She is taking a specialized supplement called I3C/DIM to balance her hormones.

she also reduced her meat/dairy intake to reduce her exposure to growth hormones that inhibits the production of estrogen.

due to her being post-menopausal and the quality of life she is experiencing now.. (no more arthritis, liver spots and no more mood swings and no more difficulty sleeping at night( we are pretty confident with this decision, have considered both the conventional and alternative option-- meanwhile-- the story does not end here.. i will just end my response for now, based on your question..

Apr 4, 2011 07:19 AM ALANA49 wrote:

I also decided to go with diet, exercise and watch my body for changes.  I took tamoxifen for 1 month and had severe abdominal pains so I stopped and have been fine since.  Good luck all.

Apr 6, 2011 03:39 PM poptart wrote:

I had hormone positive dcis in my "good breast."  I had two mastectomies, no invasive hormone positive bc.  I have no breasts now (well, I have foobs!).  I was told by both my onc and my consultation onc - no tamoxifen.  If I had invasive hormone+ bc or still had breasts, they would prescribe it; however, under the circumstances, they think the risks of adverse effects from the tamoxifen would outweigh its benefits.

Jun 6, 2011 03:46 PM Mainecoonmomone wrote:

I was diagnosed with Stage 0 DCIS in December 2008 and had a lumpectomy.  I opted against the radiation which I am happy with that decision.  Radiation is a one time only Treatment and I did not feel right about using it as a preventive measure.  I reluctantly went on Tamoxifen 20 mg and after 2 years and 1 month I found myself to have two cataracts as a side effect.  I am 58 and needless to say was angry because I will have to have two surgeries to correct the problem. It seemed the Tamoxifen created a problem and it is still uncertain if it will be efficacious.  I just came back from my visit with my oncologist and I decided I will not stay on it for the full five years,  I plan on going off at the 2.5 year point and will take my chances,  I no longer feel comfortable taking the drug and if it did this to my eyes I feel what elese will it do ti other body systems.