Anyone Pre-Menopausal & Refused Rads & Tamoxifen After Surgery?

I was pre- menopausal when I was diagnosed with BC in 2006. My OncotypeDx score was 0. I did opt to have radiation after looking at the statistics of lumpectomies with and without radiation. ( one study was from Italy and one was from the Netherlands, if I remember correctly) The local recurrence rate were too high for me of the groups without Rads. And honestly I had 33 rad tx including boosts and other than a none painful sunburn and some breast tissue changes that were transient, the rads were easy on me.

But the stats that you were given with your Oncotype only hold up if you take the Tamoxifen. They were based on the premise of Tamoxifen x 5 years. And Tamoxifen helps only about half the women that take it. Once you have had BC no matter what surgery , thats mastectomy or lumpectomy, you are still at high risk to get it again. It can be local in the same breast or chest wall or skin ( radiation being done to minimize this), or another primary in the other breast or metastasis in a place other than the breast( these risks being minimized by Tamoxifen or Tamoxifen/oophorectomy). OncotypeDx scores are only about distant recurrence, not the 2 other types of ways it can be in your future.

I am faced with my second primary in year 6 post first diagnosis in Spring 2012. I only wish I kept taking the Tamoxifen for longer....even if I had I may have still gotten BC again. By the way there is no family history of BC In my family.

So my advice is do what you can live with, but know what you are risking.

Without a doubt, with every treatment there exists a possibility of long term side effects. No treatment plan should be written in stone. Why not consider trying the Tamoxifen and re-evaluating it every few months? Likewise, has your physician discussed with you ovarian suppression? That too can potentially have long term side effects as well. But it is also effective in shutting down your estrogen.



You'd be surprised how many people do relatively well on tamoxifen. Unfortunately, it's the people who have issues who are more likely to post here.



Finally, if you want to justify not taking tamoxifen by the small percentage of benefit, understand that with most of the therapies, the absolute benefit of each is probably in the single digits. But if you combine all of your therapies, you should be reducing your overall risk by a significant number.

I agree with evebarry. With a predicted recurrence rate of 18%, tamoxifen would give me a 6% recurrence risk reduction or about 33%, bringing me down to 12%. I am highly ER and PR receptive and premenopausal at 52. My recent brain bleed would put me in a different situation than the majority of women here, so I have declined the drugs. With an excellent prognosis of 97% in ten years, the lesser of all the evils would be to see a local recurrence, which would mean a mastectomy due to having rads to both of my primaries.



I am researching ways to maximize supplements and tweak my diet, but not to the point of going overboard. Moderation, same as pre-BC, continue with daily exercise and lower stress.



Choose your path and be comfortable with it. Don't second guess. Cancer may return even on tamoxifen. I was staying at the cancer lodge during rads and met several women that had taken it and still saw a recurrence. Quality of life is important too.



Also, during my research on side effects of tamoxifen, I came across several articles in which case studies were done that showed women who did not have visible signs of hot flashes either before or while on tamoxifen were less likely to benefit from it. However, that being said, your MO is the best resource to discuss that with. My MO said to me, there are a lot of women taking a lot of hormone therapy pills of which very few will actually benefit. They aren't telling me not to take it, but in my case, risks outweighs benefit.



I have learned from all of this that BC is a crapshoot. You can do all the right things, have little or no risk and still get it.

Nhere is the calculator I referenced

http://lifemath.net/cancer/breastcancer/condsurv/index.php

Thanks for posting the CancerMath website. It's a good one. I know this tracks mortality. Does anyone know of a similar tool that shows the overall risk of recurrence? (I know my MO has one). 

Hi Peggy,



That "someone" that posted about minimal side effects of tamoxifen and reduced benefit was me. It popped up several times when I was researching my specific set of circumstances, ie my recent brain bleed and the risks of tamoxifen. I would appreciate any studies on this controversy. Please provide any links you have. Thanks.

Hi Peggy try this one from MD Anderson

http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/clinical-calculators/index.html

I did the rads, but could not deal with the idea of the tamox. Instead I had a hysterectomy and am now taking femara.

kitty, I, too, had a lot of stress before my rads began. Luckily, I was able to get an appt. w/ a free counselor via our cancer support center. Do you have an option like that? I found it very helpful. In my experience, these decision-points were very very difficult. Since we never know what the future will bring, the ideal goal is to be comfortable with our choices regardless of the outcome. i.e. if you skip rads and have a recurrence, how will you feel? If you have rads and then have these SEs, how will you feel? I tend to worry about things going wrong, so I sometimes had to remind myself that things could go right: I could have rads, have no recurrence and no SEs. How would I feel then? 

Unfortunately, we can't predict what will happen.  I've heard that rads can reduce the risk of recurrence by 40%. Did your docs give you the risk of recurrence w/ and w/o rads? FWIW, mine didn't because everyone assumes lump+rads as the standard treatment. (but doing that math, I suppose that means if my current risk of 15% (with rads but before taking tamox), then it would be 25% without rads. That seems really high. I don't know if these numbers are right but may be something to discuss with your docs. FWIW, I heard that rads can kill any small primaries that might be lurking but are too small to detect right now.  I asked my MO the same question and she said, yes, if I had a recurrence, most likely it will be the same grade. (my docs always include their disclaimer that there are no guarantees and there are exceptions, etc). Also, I'm sure the docs want to look at your total treatment: how large the margins were; whether you had chemo or will do hormones, etc.  FWIW, I can only remember one person on this website who had lump and refused rads; she had a 0.3 mm tumor (and there were some isssues post-surgery, so rads were delayed and she she did extra research on rads and declined).

I'm not sure if any of this info is helpful but I agree that these decisions are stressful. But it's important that no matter what you do, you're comfortable with the decision. Good luck.

mimikitty, you may want to read the recent medical release on Radiation for BC causing cancer stem cells. http://www.naturalnews.com/035289_radiation_cancer_stem_cells.html#ixzz1r2ivICb2 (NaturalNews) In a groundbreaking new study just published in the peer reviewed journal Stem Cells, researchers at UCLA's Jonsson Comprehensive Cancer Center Department of Oncology found that, despite killing half of all tumor cells per treatment, radiation treatments on breast cancer transforms other cancer cells into cancer stem cells which are vastly more treatment-resistant than normal cancer cells. The new study is yet another blow to the failed and favored mainstream treatment paradigm of trying to cut out, poison out or burn out cancer symptoms (tumors) instead of actually curing cancer.:)

I am in the same position right now, and only have a few days do make a final decision. I have a sour taste in my mouth, as I met with RO about two weeks ago and she completely downplayed risks. Then, after I did the simulation, she sent her assistant in to have me sign a disclosure agreement. It included most of the SE I had inquired about.



The risk of getting another BC - caused by radiation is significant, as I understand it, particularly for women under 45.

http://www.nytimes.com/1992/03/19/us/breast-radiation-called-small-risk.html



Also, damage done to the heart/arteries/lungs is not something to underestimate, as is the fact that radiation turns cancer cells into cancer stem cells, which will no longer respond to treatment.



http://www.cancer.ucla.edu/index.aspx?recordid=560&page=644



Personally, I am very worried about atherosklerosis, and other cardiac problems I have very high cholesterol (397!). It also doesnt help, that the risk of developing problems is greater for people (like me), who were treated with doxorubicin prior to radiation.

http://content.onlinejacc.org/cgi/content/full/42/4/750



Lucy88

I dont know if having a "searching mind", as you put it, is something to celebrate. Sometimes I sure wish I had never started reading all these studies and research papers out there, and instead had trusted my doctors blindly. It would have made life so much easier....



Mimikitty,

Best of luck in making a decision!!! Unfortunately, there is no way of knowing what the "right" or "wrong" thing to do is. The most common approach is to accept the "potential" benefit percentages with disregard to the "potential" dangerous side effects. Of course, if you are younger, that is not so easy. I believe that the chance of a women between the age of 30 and 39 getting breast cancer is only about 0.5 %. Yes, that means that 99.5% of women that age will not get it. Yet, here I am and here are so many other women with tiny odds of getting this dreades disease. So the percentage "game" and numbers are something that I have started taking with a grain of salt. Ultimately I, and all of us, will have to decide which decision "we can live with" (no pun intended), something that we won't look back and regret, regardless the potential outcome.