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

mimikitty

I am 41 y.o. diagnosed with stage 1 IDC, no nodes involved.  No chemo needed.  I just had a lumpectomy 2 weeks ago and 5 weeks of radiation then 5 years of tamoxifen are next on the list.  I'm having a hard time getting comfortable with the potential long-term side effects associated with these treatments.  I wonder if there are any pre-menopausal women who have opted for surgery only and refused the other treatments?  I've apparantely got major estrogen issues as the cancer cells measured at 95% for estrogen on my pathology.  Also progesterone measured at 75%.  My oncotype score is low (11).  Please let me know if you've refused those treatments, and what you may have supplemented them with, if you've had recurrance and how far out you are from your diagnosis.  Any guidance you can point me to would be greatly appreciated.  Thanks a lot.

CatFromFL

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.

sweetbean

Cat, so sorry to hear about your recurrence!  I'm going to stay on the Tamox for as long as they will let me.  I had some minor side effects in the beginning, but now I don't have any.

mimikitty

Thanks for the inputs.  The way I understand the math of tamoxifen benefits is that my score of 11 translates to a 8% liklihood of distant recurrance if I take tamoxifen for the next five years.  My MO said that without tamoxifen, the risk of recurrence is 30%-50% higher than my recurrance rate.  That means that without tamoxifen, my liklihood of distant recurrance is 10.4%-12%.  Therefore by taking tamoxifen, I am only gaining a 2.4%-4% benefit.  That seems like a pretty small percentage to me and therefore I am carefully weighing that benefit with the potential short-term and long-term side effects that tamoxifen can create, such as other cancers.  I am also looking into alternatives to try to take care of the oversupply of estrogen in my body.  I am finding a lot of info on that in another topic on this site.

purple32

Hi Cat

Sorry to hear about your recurrence.

You said :" And Tamoxifen helps only about half the women that take it. " 

 This is really the first I have heard of this ! Do you mind explaining a few details?

Many thanks .

voraciousreader

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.

Hindsfeet

mimikitty, I refused tamoxifen for similiar reasoning. My estrogen was 96+ ... pretty high for someone post menapause. The risk of taking it for myself with the side effects of tamoxifen out weigh the risk of a cancer recurrence. It is easier for me to live with the risk of another recurrence than all the possible tamoxifen side effects. Some people can handle tamoxifen better than others. I am one of those who don't handle drugs well. I thought about trying tamoxifen for a month, but after more research I couldn't do it. I still struggle with what I am doing.

Chickenpants

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.

CatFromFL

By the way, for both of my tumors the pathology was highly Er+ and Highly PR+ too,



2006- Er+ 97% Pr+ 98

2012-Er+ 98% Pr+ 98%



I will be also have them remove my ovaries after I finish radiation



I will try to find the link for the survivor calculator, I used to have it saved, but lost the link.

Its very helpful with calculating your specific stats with your therapies.

CatFromFL

Nhere is the calculator I referenced

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

CatFromFL

Sorry i meant to put the therapy one in

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

mimikitty

Thanks everyone for your replies.  Your experiences are very helpful to me in making my decisions.  That calculator website is awesome!  Definately going into my favorites!

peggy_j

Sounds like your MO discussed the risk of distant recurrence (i.e. mets). Did he/she discuss the risk of local recurence (in your breast) or a second primary, including in the other breast? My tumor was 0.5cm, grade 1 and >95% ER+ and no nodes, so my MO said my risks of mets is very low. (hence, no chemo). But overall my risk of recurrence is about 15% since I'm pre-meno. Taking tamoxifen helps most women reduce their risk by 40%, but since I'm highly ER+, my MO said I'd likely benefit more, maybe by 50%.  I had a hard time choosing whether to take tamoxifen. First, realize you don't have to decide this today. I took 6 weeks after rads do enough research. I was very concerned, esp. about the serious side effects. But I read many articles on PubMed and the evidence convinced me: taking tamox for 2 yrs reduces the risk of recurrence vs. not taking it (and the risk of blood clots, for example, increases after age 50 or after taking tamox for 2 yrs). Taking it for 5 yrs has the most benefit and reduces the risk of recurrence even in the 10-15 yr range.  As someone else said, the annoying but less serious SEs vary considerably by patient; mine weren't bad and calmed down after 3-4 months.

Someone said:

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

This theory has been disproved. Dr. Susan Love has info on her website. If you can't find it via google, PM me and I send you the link. (or you can use the Search command here. The article's been posted many times; at least twice by me!)

peggy_j

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). 

candygurl

Mimikitty, natural sisters use DIM, IC3, and/or calcium d glucarate instead of Tamoxifen. If you do a search, you'll find plenty of threads discussing each of them.  We also usually have  naturopathic oncologists guiding us. You'll find plenty of info about that on this thread, "Naturopathic Oncologist"   community.breastcancer.org/forum/79/topic/784260ETA: "The Early Stage Natural Girls" + "Natural Girls"  threads have plenty of great info too.

mimikitty

Thanks Peggy and Zuvart.  Zuvart, I read through early stage natural girls posts with great interest.  But it was hard for me to determine the age of the people who posted.  I heard that ER+/PR+ cancer is different for pre-menopausal and post-menopausal women since younger women's bodies create estrogen as part of their monthly cycle.  Also, I heard that skipping out on radiation treatments can be acceptable for older women with early stage breast cancer but not younger women.  That's why I started a new topic on "pre-menopausal." 

 So far, I can't seem to find a naturopathic oncologist in my town, but I'm still on the search and hope to find someone good.  I'll check through that thread.  Much appreciated! 

peggy_j

mimikitty  wrote

I heard that ER+/PR+ cancer is different for pre-menopausal and post-menopausal women since younger women's bodies create estrogen as part of their monthly cycle.

Yes, the estrogen of pre-meno women is definitely a factor for ER+ BC.  My MO said if I had my exact same tumor but was post-meno, my risk of recurrence would be about 10% (vs. 15%). FWIW, some women choose to have their ovaries removed. There are always pros and cons, but I heard that an oomph can reduce your risk of recurrence by 40%.  FWIW,  I found that a lot of BC research looks at post-meno women, so it can be hard to find stats for us.

Re: no rads. This is new approach. I had my rads a year ago, before this news item appeared. Like you, I read that "no rads" is an option for older women, but younger women have different considerations because we have much longer life expectancies. (the same way they say that younger women (under 50) are more likely to benefit from chemo.) Good luck with your research and decision.

Chickenpants

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.

mimikitty

My radiation appointments start on Monday and I am having serious reservations about going through with it.  My cancer is left-side and I'm concerned about potential for heart disease due to my heart's exposure to even low levels of radiation around it.  I asked my medical oncologist a few weeks ago if my cancer grows back will it likely be the same grade as the current cancer?  She confirmed it.  Since my cancer is not agressive and slow growing why not just wait to see if it grows back in that breast via my regular mammograms rather than radiate the whole area now?  If it grows back, then cut it out and perhaps do the radiation then.  Wonder if anyone has gone this route before?  My cancer is early stage and completely uneventful so far, except for the surgery.  To me, with a non-aggressive cancer, it seems preferable to forgo the radiation and keep an eye on that breast via mammograms to see if the cancer grows back, rather than put myself at risk for heart disease and lung damage.  Please let me know if you find any flaws in my logic about this.  I don't have a medical background and I am still trying to learn as much as I can.

Sian65

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

purple32

Cancermath

I am clueless as to how to read that graph!

Can anyone help ?
Thanks

Momine

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

peggy_j

Thanks Sian65 for posting that link. The numbers are in line w/ what my MO said (so that's good, no scary surprises) but I wish someone would develop a calculator that has every little factor that I think about: i.e. whether pre or post-meno, whether I'm taking tamox or not, etc.  

Chickenpants, here's the link from Dr. Susan Love's blog. It sounds like that theory (few SEs == tamox isn't working) had been popular but has been disproved. Do you know when the research was done for the articles you read? Maybe this is newer info or ??? The Dec 2010 Breast Cancer conference had the famous paper that disproved the usefulness of the CYP2D6 test. Dr. Love's blog entry has a citation of the study presented at the conference. Maybe its available on PubMed?  

http://www.dslrf.org/breastcancer/content.asp?CATID=19&L2=3&L3=7&L4=0&PID=&sid=132&cid=1146 

peggy_j

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.

Chickenpants

Peggy, thanks for that link. I was able to post the links to a couple of the articles in another thread while on my PC, but iPad doesn't allow me to. I think the research article was about three years old, so it may be outdated. I'll try to post it for you when I'm at work later today or else you can do a member search and peek into the other thread. I think it may have been in an alternate therapy topic.



I'm still not convinced that drugs alone are the answer, but a small piece of the puzzle that may help prevent a recurrence. But at what cost? I'm weighing out my personal risk which is slightly different that 99% of other women. It's the blood clot risk which would necessitate me having to take a blood thinner, which would then put me at higher risk of a second brain bleed event due to my recent subarachnoid hemorrhage (SAH). Without my SAH, I would strongly consider taxing tamoxifen, even for the modest predicted 30% benefit and putting up with other side effects, the risk of other cancers, etc.



By the way, I just noticed the "refused rads" part of the topic title. At one time I did want to avoid rads, but guess what? With two primaries, one in each breast, I ended up getting a double dose. My main concern was the collateral damage to the tops of both sides of my lungs. As I knew I wouldnt likely do the follow up hormone treatment, I decided to go with rads - what my docs called "mop up detail". I have athsma and I did developed a little cough after treatment, but nothing serious that required treatment. My RO said that my future lung xrays will show some scarring/fibrosis, very minimal and I should remain asymptomatic indefinitely. I hope they're right, but that risk I was willing to take after careful research.

candygurl

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.:)

Anonymous

mimikitty,

I just read your original post. I would fit into that category.

I read the research and found rads had some small recurrence benefit but no overall survival benefit. There's even an article on this BCO site that shows that. As far as the hormone blocking, that wasn't my choice. You can read my profile and PM me if you want. I don't get on this site much and don't want to waste my time debating.

Good luck to you and congratulations for having such a searching mind.

SleeplessIn

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.

peggy_j

chickenpants, I'm with you. The risk of clots is a scary one and can be significantly higher for some patients.  I'm at somewhat-higher-than avg risk for clots so I may take tamox for just two years. (I also have a very rare bone condition which means AIs aren't an option). So it's always something...or a lot of things! Sounds like you're making the right choice for your situation. 

mimikitty

Thanks everyone for all of your thoughtful answers and references to excellent research studies.  I was scheduled to start radiation tomorrow, but since I have concerns, the doctor agreed to see me before I get started to clear my final questions.  I printed the studies and am now writing out my questions for the doctor tomorrow.  If I am not comfortable after my discussion with him, I won't go through with the treatment tomorrow.  I'll go home to seriously consider my choices, including going back to the surgeon and requesting a mastectomy, in which it will be acceptable that I don't do the radiation, since I had clean margins on the lumpectomy (and hopefully will still have that upon mastectomy).

I don't like the idea of a mastectomy.  The surgeon did a beautiful job with my lumpectomy.  Reconstruction is out of the question for me since I don't want foreign materials in my body, don't have enough fat for a fat transplant to my breasts, and won't even consider moving muscle there.  So my only other option is single or double mastectomy.  I would consider single just in case should get pregnant after all this so I'll have one good breast to feed with.  What hard choices to make! At least with the mastectomy though, I can avoid these potential side effects of radiation that were pointed out in the research studies.

Thanks again for all of your input! 

peggy_j

Good for you, Kitty, for taking charge and scheduling that extra appt. These decisions are hard and we can each only decide for ourselves. Sending you good vibes in your decision-making process. Whatever you choose will be the right choice for you. (((hugs)))