Topic: Choosing not to do hormone therapy

Hi Louise,

I also chose not to do hormone therapy.  I did have a total hysterectomy with oomphectomy.  I felt that was sufficient estrogen control for me.  It is a personal decision for each of us to make.  I only had lumpectomy with a SNB and radiation, I did not require chemo.  One reason why I chose not to do it was so that I would not have to see an oncologist.  I see enough doctors without an oncologist also. 

I haven't had any treatment for my cancer other than a lumpectomy with SNB (just one node removed). I had only a small grade 1 cancer, so it really wasn't too difficult making the decisions not to do radiation and hormonal therapy. Plus, I have other medical issues that make the potential side effects more risky. Chemo wasn't even offered, so no decision even needed regarding that one. I was 9 months into menopause when diagnosed about a week after my 49th B-day and even back then, already starting to feel the effects of estrogen deprivation.  Just couldn't find any rational reason to subject myself to a state of even more dramatic estrogen depletion for the kind of cancer I had. Now 4 years later, I'm still suffering from many of the same kinds of problems some women on AI's complain of; weight gain, osteopenia, aches, pains, creaking in joints, memory problems, literally no libido etc etc and most recently, trigger finger (ouch ouch!!).  I shudder to think what condition I'd be in now if I had consented to the arimidex that was recommended.!!!

Louise, everyone really tries NOT to tell each other what to do what not to do on these boards, but I would still like to share my view.

I am 45, stage 2b, clear margins bilateral mastectomy, 2/6 nodes positive (did not do axillary dissection), dd chemo, 33 rads,

I am choosing to take tamox as I was not able to find compelling evidence on NOT to take it, that stuff definitely seems to work for premenopausal gals with hormone positive tumors. Wanted to go for femara.. but onc would not go for it.( since I am premenp..and all the studies for Femara comparing it to Tamox were for post menap)

So if you are asking everyones opinion ( although you have stated explicitly that you wanted to hear from the ones who have made the decision not to take it ) ,looking at the limited info you provided,  my vote goes for, unless you have serious health problems that would be exarbated by tamox.. take it.

My ob-gyn said that if i do not test + in the BRCA gene test they would not like to remove my ovaries as there is some evidence pointing to the fact that removing the ovaries- even if for protection from cancer- seems to cause other problems thus shortening the life span.

Good luck with your decision ! You will make the right one, it will be painful but you will know it when it comes to you and a sense of peace settles right in your gut !

Aylin

Louise, I too chose not to do hormone replacement after Bilat mast and hyst and ooph, although I did choose to use tamoxifen.  I, too, am ER/PR + and I am very comfprtable with my decision.  I would rather have the side effects from having too few hormones than have to deal with a recurrance from hormonal replacement (or even the chance of recurrance from it).  Good luck with your decision.   Hugs,

I too have opted to not do hormone control drugs. I take iodine in the form of Iodoral. It does not work on the blood levels of hormones but directly on the estrogen receptors in the breasts and ovaries.

My doctor feels iodine will be the first non toxic adjuvant therapy in ten years and the benefits will equal or surpass Tamoxifen or Arimidex.

There is some dispute if there is any survival advantage to Tamoxifen. The Europeans think the US drug company did the math wrong.

Studies for I3C:

http://www.vrp.com/articles.aspx?page=LIST&ProdID=1196&qid=&zTYPE=2

http://www.lef.org/magazine/mag2006/jan2006_report_i3c_01.htm

http://www.cbcrp.org/research/PageGrant.asp?grant_id=2552

Take a look, do some research, see if it makes sense to you.

Erick Carpenter

DIM I agree with, but I don't like to take sides, I prefer that people do their own reviews and make their own choice. as for human tests. From Berkely....

http://www.jbc.org/cgi/content/full/280/10/8756

We have demonstrated that I3C directly induces a G₁ cell cycle arrest of human breast cancer cell lines through a pathway that is independent of estrogen receptor signaling and which targets specific G₁-acting cell cycle components (21). Our previous studies have shown that I3C down-regulates CDK6 transcription by disrupting the functional interactions of the Sp1 transcription factor with an Sp1-Ets composite DNA element in the CDK6 promoter (19). I3C also causes a pronounced decrease in CDK2 specific enzymatic activity and inhibited phosphorylation of endogenous Rb proteins (20), although the precise mechanism underlying this process has not been characterized. The activity, accessibility and cellular utilization of CDK2/cyclin E can be regulated at multiple levels, any one of which could be potentially targeted by I3C treatment. For example, in addition to cyclin association, the activation of CDK2 also requires the dephosphorylation of Thr¹⁴ and Tyr¹⁵ by Cdc25A (47) and an activating phosphorylation event at Thr¹⁶⁰ by CDK-activating kinase (CAK) (48). Another mode of regulating CDK2 kinase activity is through the association with cyclin-dependent kinase inhibitors (CKI) such as p21, p27, and p57. Recent studies have also shown that the subcellular compartmentalization of either cyclin E or CDK2 greatly alters its enzymatic activity and accessibility to nuclear residing CAK, Cdc25A, and known substrates of CDK2 (49-51). In this study we demonstrate for the first time that I3C selectively controls the size distribution of the CDK2-cyclin E protein complex with concomitant alterations in cyclin E interactions and subcellular localization that results in an inhibition of CDK2 enzymatic activity in human breast cancer cells.

Treatment of MCF-7 human breast cancer cells with either DIM or the anti-estrogen tamoxifen induces a G₁ cell cycle arrest and inhibits CDK2 enzymatic activity (20, 53). In contrast to the effects of I3C, DIM or tamoxifen did not alter the interaction of the lower molecular mass forms of cyclin E with the CDK2 protein complex or regulate the nuclear localization of the CDK2 protein complex (summarized in Fig. 9). Thus, the formation of the larger CDK2 protein complex observed in I3C-treated cells is not an indirect consequence of the cells undergoing a G₁ cell cycle arrest. A key problem in using tamoxifen in the clinical management of breast cancer is that a majority of the cancers that do respond to this anti-estrogen eventually acquire resistance to prolong tamoxifen treatment (63). We propose that the previously reported synergistic inhibition of CDK2 kinase activity by combinatorial treatments with I3C and tamoxifen (20) is due to ability of these two anti-cancer agents to disrupt CDK2 function through different cellular pathways. Because lower doses of tamoxifen could potentially be used in the presence of I3C, conceivably this indole could potentially be used to overcome the tamoxifen resistance or prolong the duration in which tamoxifen is effective in suppressing the growth of breast cancer cells. Similarly, of I3C and DIM combinatorial regiments could also be developed for treating breast cancer

Hope this helps.

Really great feedback Anom and Erick. Thank you. I am currently taking I3C daily but hadn't heard before that it could make cancer worse in presence of carcinogen nor that it is a thyroid suppressant. any more info you could provide on that Anom would be greatly appreciated. Also very interested in Iodoral -- haven't heard of it before and would love to know more and how/where you came across it.

Best wishes, Louise

I refused to take hormonal meds for quality of life issues, has been over 4 years now since  stage 1 IDC dx, surgery and rads, I also refused chemo.  Take your time with your decision, my onco said I could start any time if I changed my mind, it is a personal choice, good luck to you.

I wonder if it is advisable for a person who is currently taking a thyroid medicine for Hashimoto's disease to also take iodine?  Would taking Iodine interfere with the thyroid med or the functioning of the thyroid gland?

More research on I3C...

http://www.nature.com/bjc/journal/v94/n3/abs/6602935a.html

http://www.newhope.com/nutritionsciencenews/NSN_backs/Apr_01/I3C.cfm

http://jn.nutrition.org/cgi/content/full/133/4/1011

and I am "cherry picking" the data, as I am looking for results from human studies. and there are only a few. it tends to be in prostrate or breast cancer where it has the best effect, and primarily in hormone positive receptor type. (which is what my wife has). She is also on synthroid, so i have some concerns there, anomdenet could you fill me in on the issues surrounding that?

Thanks!

Erick Carpenter

Also, Erick,

Many of the doctors believe thyroid hormones BLOCK the uptake of iodine to the breast.

 Just as when you take a radioactive iodine test of the thyroid, the doctors make you stop taking thyroid meds several days before the test. Or the test won't show enough iodine uptake.

This is not to say your wife should stop taking the Synthroid, but she should be aware that it may be increasing her risk of iodine deficiency-related breast disease.

In Dr. Bernard Eskin's study, women with fibrocystic breast disease or breast cancer took up 50% more iodine in radiographic studies than women with no breast disease. Their breasts were so deficient that they sucked up much more iodine.

Human studies. (2nd page has more references to some double blind studies)

http://www.lef.org/magazine/mag2006/jan2006_report_i3c_01.htm

Both I3C and DIM help promote healthy metabolism of estrogen by influencing the ratio of beneficial 2-hydroxyestrone to unfavorable 16-alpha-hydroxyestrone.48,50 An increased ratio of these estrogen metabolites is associated with a decreased risk of breast and other cancers.39,47-53 A placebo-controlled, double-blind study of women at increased risk for breast cancer found that four weeks of supplementation with I3C promoted favorable changes in the urinary estrogen metabolite ratio of 2-hydroxy-estrone to 16-alpha-hydroxyestrone.50

A recent pilot study examined DIM's effects on estrogen metabolites in postmenopausal women with a history of early-stage breast cancer. After one month of supplementation with DIM, the participants demonstrated a significant increase in levels of beneficial 2-hydroxyestrone and an insignificant increase in the ratio of 2-hydroxyestrone to 16-alpha-hydroxy-estrone. These results suggest that DIM may play a role in preventing breast cancer reoccurrence by promoting healthy estrogen metabolism.48

A clinical trial assessing I3C's role in preventing cancer in healthy individuals is currently under way.57 Several clinical trials investigating DIM's cancer-preventive and therapeutic potential are also in progress.58

So, some studies are under way, some preventative, some not.

Clinical trials

http://clinicaltrials.gov/ct/show/NCT00100958?order=1

http://clinicaltrials.gov/ct2/results?term=I3C

At least there is some legitimate interest!

LindaMemm, that was a HUGE guiding factor in my wife's choice to avoid chemo and radiation, yet to do everything she could to fight the re-occurence. and her choices are working. blood markers low normal range, and CT scans clear (another to be done when she returns home from taking care of her mother who is currently in hospice care).

Louise,

I opted out of any hormones or tamox.  I did lumpectomy, I didn't want to do the chemo but I did do the 7 weeks of radiation.  I often wish I didn't do that either.  I had my ovaries out, after alot of back and forth with my onc.  It is very much your own journey, as you said.  All of our cancers are different, even if its the same dx.  They are as different as you and I.  I don't look at stats or studies.  I can see just from these boards how different each of us are affected and even people that do everything, sometimes it comes back.  My thoughts are to be at peace with the choice you make.  Be as educated as you can on it, and then be at peace with it.  As much as you can.  Best of luck to you!!

g