deciding against hormone therapy?

Hi Michele, 

I had the same question but did not ask so I commend you on taking the first step. My dx is similar to yours with the exceptions of size, nodes and possibly my age which is 49. My mass was 1.5 and I had 3 neg nodes removed. I had the oncotypedx with a score of 9 so chemo is off the table. I was dx in May, had a lumpectomy in June. So far I am not inclined to do either rads or hormone therapy.

My Med Onc suggested Arimidex and Lupron because I expressed concerns about Tamox S/E's. She did not notice from my chart that I am Pre Men and agreed with me about Tamox S/E's until I asked about Arimedex S/E's for Pre Men woman. Looking like the cat who swallowed the canary, she continued my consult with a nervous laugh, told me they would have to induce Meno with Lupron because Arimidex was only for Post Men women, and added "hee, hee, hee, you're not going to like it"  I don't think she would have made the statements about Tamox had she realized I was Pre Men. When I asked about other medications she said Arimidex and Lupron are the only meds available for me. 

I asked her what my recurrence rate would be if I opted out of hormone therapy and she said 8% but she could not say what it would be if I did not go through with the Rads. I asked my Rad Onc what my recurrence rate would be if I opted out of Rads and he said 33% local and distant which was the same rate he gave before my oncotype dx. I thought the oncotype would influence the Rads but he said it does not. I don't believe him.

I would be more open to the rads if half my upper torso along with half my arm would not be radiated. I thought they would radiate the breast only. Also, I am not comfortable with my healthy nodes being radiated along with other things like heart and lungs. Rad Onc could not explain to my satisfaction why they could not radiate the breast only.

That said, this is my personal experience and I am not trying to influence you one way or another. I struggled with my decision initially but I am comfortable that I am doing the right thing for me. I am taking a load of supplements, changed my diet and I exercise and pray!

Very difficult decision to make and I wish you the best with whichever road you choose to take.  

Hope this helps,

Carole 

Hi Michelle - our stats are similar except that my tumor was .9 cm.  My oncologist gave me stats from Adjuvant online that said that with no chemo or hormonal therapy 18 out of 100 would have a recurrence outside the breast in 10 years.  With Tamoxifen 7 of those 18 would not recur.  With chemo 6 of the 18 would not recur.  With chemo and Tamox together 10 of the 18 would not recur.  I chose to do the Tamox but not the chemo.  Good luck - deciding which treatment to take can be pretty hard.

Hi Yazmin, 

I asked my MedOnc about absolute vs. relative because I was initially told that my chance of recurrence was 25-28% based on the Adjuvant online. This was before my Oncotypedx when she was trying very hard to convince me to have Chemo and I was resisting. I asked why the stats were  so high and she said it was because they were determined based on all women with BC. They lumped us all together regardless of the type and stage. She did more calculations and came up with 8% recurrence rate. Oncotypedx gave me 6% with Tamoxifen.

She also told me that no one takes the course I have chosen except 80 year old women and that Oncs are rarely questioned about their treatment recommendations.  I knew I was in for an uphill battle. I still don't understand why she could not provide stats if I opted out of Rads and only did the HT. Maybe someone here knows.

I still think 33% distant and local recurrence is very high considering my dx and I think they frame theirs answers to frighten me rather than educate me which is very disappointing.

I was sent this link which is similar to Adjuvant. 

http://cancer.lifemath.net

Best of luck,

Carole 

I haven't found out whether I'm ER+/PR+ yet, but I feel certain I'm ER+ (I'm pretty familiar with my hormones thanks to years of infertility!).

If/when I'm told my cancer is ER+, I will smile and nod and take whatever prescription he gives me, then throw it in the garbage. I will continue to do exactly what has gotten my estrogen/progesterone in balance previously:

 - eat a mostly plant-based diet, with emphasis on organic leafy greens
 - get down to my healthy weight (I had ballooned to 45 pounds overweight) -- this is the biggest factor in my E/P imbalance (again, I know this from my infertility/pg/m/c experience and bloodwork)
 - exercise nearly every day
 - sleep in complete darkness and try to get to bed before 11
 - get at least 15 minutes of sunshine every day (on sunny days), at least on face and arms
 - acupuncture (doesn't directly change E/P hormone balance, but helps the body systems and organs get into balance overall, so your body is better able to regulate hormone levels)

I wasn't into the acupuncture thing until I read a book on the Eastern/homeopathic approach to fertility. It described Western medicine as taking a symptom and blasting it with drugs to kill off the symptom. Eastern/homeopathic medicine, on the other hand, aims to identify the core issue and gently bring that into balance... once that happens, the symptom goes away. In their way of thinking, a "symptom" could be infertility or even cancer... that's not considered to be the core issue.

Instead of throwing whatever prescription you might receive, how about finding a physician who will actually work with you, so that you feel comfortable with whatever prescription you receive, and actually use it?

Oh how I wish I could. I kept getting "second opinions" because each doctor was so opposed to even LISTENING to how I wanted to approach things. I haven't met with an oncologist yet (is that who would prescribe hormone-suppressing drugs or does the surgeon do that?) but I'm hoping to find one who takes an integrative approach. I will be thrilled if they at least acknowledge that body fat %/diet/exercise/lifestyle has an impact on hormones.

Hi All,

I am glad that I found your thread, I have been active on a couple of other threads for several months and recently the topic of Tamoxifen has come up. When I mentioned that my Oncology Surgeon was not even going to test me for er/pr some were shocked and that when it came back er+ they were even more shocked that he did not think I needed to go on Tamoxifen. I was the one that brought it up, his reasoning was that I had a very small % of reoccurance and that he felt adding Tamoxifen would not change that % enough to make it worth the quality of life change from taking the drug. Pretty refreshing I thought............., but it was totally up to me if I wanted to try it.

I did try it for 5 weeks, I am post-meno had hyster in '06 and had hot flashes for years before that. I am an expert on hot flashes. Well I had the most miserable hot flashes after taking Tamoxifen, sweat rolling down me while just sitting at dinner. I decide this was ridiculous ! why put myself through this when my Dr. didn't think it was neccesary ?

I am a nurse in a very large health system, and I know my Docs, some question how up to date he was in his thinkng if not prescribing or should I say pushing Tamoxifen. Well he is the Medical Director of the Breast Center, of a very respected Cancer Center. Nebraska may seem like hicksville to some but we are very well know for our Medical Facilities. People come from all over the country for treatments here. Sorry, don't mean to get defensive

Thanks for letting me vent and I'm sorry that I let someone else make me ? my previous decision.

Yazmin,

I Love all of your explanations on Absolute vs. Relative Satistics, I believe this is how my Doc thinks.Thanks for posting SheilaE 's info makes all the sense in the world !

Blessings all,

I've struggled with the decision too, and have decided NOT to take Tamoxifen. I've done enough research to know that the side effects are worse than the benefits (my opinion). I will work with my herbalogist tor find a balance in the ER/PR hormones. Not sure why, I've just always know that there's a natural remedy for us. Yazmin, I too enjoyed the absolute vs relative post.

EFFLORESCING:

 Have you looked into IMRT? Here is some info. on it. When radiation was an option for me I was considering having the Intensity Modulated Radiation Therapy instead to protect more of my heart and lungs since my breast cancer is on the left side.

IMRT is short for Intensity Modulated Radiation Therapy. The intensity of the radiation in IMRT can be changed during treatment to spare more adjoining normal tissue than is spared during conventional radiation therapy. Because of this an increased dose of radiation can be delivered to the tumor using IMRT. Intensity modulated radiation therapy is a type of conformal radiation, which shapes radiation beams to closely approximate the shape of the tumor.

Once one stops taking Tamoxifen after 5 years (the normal protocol), one is back to Square Zero, anyway (assuming it was actually doing what it is supposed to do, keeping cancer at bay during that time).

Wow... really?? There is something sinister about that... almost as though they mainly care that patients technically make that magic 5-year survival milestone to make their statistics look good. "Let's shut off ALL their estrogen for five years so they're sure to survive and boost our 5-year survival rate. Who cares what happens to 'em after that." Or maybe I'm misunderstanding... does Tamoxifen make women less likely to have a recurrence even years after they stop taking it? 

Whew, Anne, thanks for clarifying that. That is WONDERFUL about your mom! (and you too -- here's to 23 more years for your Mom and many more for you!)

Nebraskagrandma:

Thank you for this exhaustive explanation of how Tamoxifen might work. There is so much confusion, out there!

Anne: if indeed, Tamoxifen works at blocking estrogen for up to 10 years after one stops taking it, then why is there some talk of it being so beneficial that they want to go back to having people take it for 10 years instead of 5 (as it was done at some point by some doctors)? Is that done with the understanding that Tamoxifen would then be blocking recurrences for 20 years total? And if that's the case, why did they back out of administering it for 10 years, in the first place? I don't get it.......

And indeed, I read about the problem of potentially acquiring negative tumors subsequent to taking Tamoxifen for 5 years. 

Nebraskgrandma, I am sorry to hear about yours and your Mothers dx. I am the only person in my circle of family and friends with a dx but fortunately my dx was instrumental in promoting the importance of lifestyle modication, awareness and screening.

My path report indicated that  the surgeon removed 3 negative nodes. I believe that my RadOnc is now "moving the goal post" by telling me there is a possibility I no longer have nodes. If I no longer have nodes then in part, my opposition to having RadTherapy is without foundation.

I was told by the BC.Onc Coordinator that because survival rates are reported/calculated in 5 year increments, if I have a recurrence and die in the 6th year, statistically I am still a survivor. To date I don't know why she shared that with me but that informaiton coupled with everything else I heard from the Med/OncDocs is what lead me to seeking alternative treatment.

In reference to 73 being your age of concern, did you have the opportunity to inform the Doc of your dx? What was his response? I hear you on supporting and respecting your Mother's treatment decisions. Living with the dx is difficult enough. The least we can do is be supportive and loving regardless if we are in agreement or not.

I also read that BC can recur with a completely different pathology than the BC that is being treated. I asked my Med/Onc about this. I asked if you treat my HER2-, ER/PR+ mass that was removed, how does that treament prevent a recurrence of a tumor that could be HER2+, ER/PR-, for example? No answer as of yet.

Warm regards,

Carole

Tamoxifen again.......

Please see this medical review (only one among many similar ones), titled, this way:

Tamoxifen Continues to Prevent Breast Cancer for Years After Therapy Is Stopped (From Medscape Medical News): http://www.medscape.com/viewarticle/549550

Nevertheless, please read all the way to the BOTTOM of the study, and you will see this, in Medscape's own words:

But  Higher Mortality in Tamoxifen Group 
 
"......However, overall the mortality was higher in the group of women who took tamoxifen for 10 years than those who took placebo, although the difference was not statistically significant. In total, there were 65 deaths with tamoxifen vs 55 with placebo (P = .36), with cause of mortality outlined in the table.

Table: Death and Cause of Death in Tamoxifen Study

 (please see table in link, which I cannot paste here)...."

So it goes back to what we discuss regularly here in this part of the forum: While chemotherapy, for example, DOES shrink tumors, it appears that only about 2% or less of the patients will get the ultimate benefit out of it (which is: SURVIVE long term: Google "Aussie oncologists," or see different discussions here on the forum). But every time a new chemotherapy compound shrinks tumors a little more than the previous one, we get all the BIG newspaper titles: SO AND SO SHRINKS CANCER TUMORS BY SUCH AND SUCH (there is no small print explaining that the figures are in RELATIVE statistics, not ABSOLUTE statistics)"

....And so we are told, in big headlines, that the wonder drug, Tamoxifen, is able to block tumors for 10 years and more....But it takes getting to the bottom of the page to see that here again, tumor-blocking and the benefit that WE patients are looking for (real survival), is 2 different matters.

Statistically, of course, this is not a total lie: Tamoxifen CAN indeed block tumors, when it actually works (on about 1% of patients in ABSOLUTE statistics). But how about OVERALL (real) survival?

Barbara Brenner (President, Breast Cancer Action) calls this "disease substitution."

Crunchy,

Where do you live?  I have a book "Beating Cancer With Nutrition" which has a list of integrated medical doctors all over the country.  I can give you some names if you want.  PM me and I'll give them to you.

Roseann