Choosing not to do hormone therapy

LouiseIndigo

Choosing not to do hormone therapy

LouiseIndigo

Hi

I've had chemo, mastectomy, axillary nodal clearance and radiotherapy and am now choosing not to do hormone therapy -- for too many reasons to go into! I'm ER+ and PR+. Anyone out there who has made the same decision -- would love to hear from you.

With thanks

Louise

ADK

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. 

Bliz

I am contemplating not doing it.  I tried Femera and arimedex and too many SE's.  The hospital botched my Cyp testing so now I have to do that again.  So it has been over 6 months and no hormone drugs.  I am almost wondering if the universe is trying to tell me to give it up?

MarieKelly

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.!!!

LouiseIndigo

Many thanks for your replies. My diagnosis was stage IIIb so its a scary decision.

Anne, did you have bad side effects from the hyst and ooph? That option has never come up with my oncol. I'm 42.

Louise

trigeek

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

LouiseIndigo

Thanks Aylin

You know it's funny, as i've actually reached a state of peace in making this decision, after so much stress wieghing up the pros and cons. Believe me i am more than aware of the positive impact that hormonal treatment has had on breast cancer survival figures but it's the living in between on hormone treatment that really frightens me.

Me and artificial hormones make poor bedfellows. After bad post-natal depression (purely hormonally based that did not respond to anti-depressive treatment) and years of trying different combinations of the contraceptive pill with bad effects on both the mind and the bod, it's just not for me. I can take a lot if my mind is in the right place but artificial hormones wreak havoc on it, meaning, with me, that some of the simplest things translate into desperate difficulties and too many days are spent in tears.

There are no guarantees with this disease. Even if i were to take tamoxifen, there is no guarantee that it won't re-occur. Neither is there a guarantee that it will if i don't take it. For joy in the life that i'm given and for that of my family, i have to take my chances. That doesn't mean, however, that i'm not still very scared -- though i can live a happy life and acknowledge that fear at the same time.

Louise

hollyann

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,

meadows4

Tamoxifen is not a hormone.  What it does is bind to the receptors of cells in the breast and this binding keeps the estrogen in your body from getting into those cells and causing cancer.

If I were you, I would try the tamox and if you have significant side effects you can always stop it then.

For me, I was prescribed arimidex.  I didnt want to take it either and debated for several months about it.  I finally decided to take it at the urging of my doctor and I have taken it for 6 months now and have no side effects.

But, tamoxifen is not an artificial hormone in any way....so dont let that reasoning stop you from taking it.

anondenet

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.

anondenet

Gage, Tamoxifen is a designer estrogen.

http://www.sciencenews.org/pages/sn_arc99/10_16_99/bob2.htm

erickcarpenter

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

anondenet

Most of those I3C studies were done in the test tube. On the ones done in mice, one study showed I3C made cancer worse in the presence of a carcinogen. Alt meds have not done enough research on this.

The Brassica foods are clearly protective but I3C is so concentrated and strong, that it is a thyryroid suppressant (goitrogen). Hypothyroidism is widely beleived to be a factor in 80% of breast cancer.

Also note: Most of the DIM research was sponsored by the owner of the patent.

erickcarpenter

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 cyclearrest of human breast cancer cell lines through a pathway thatis independent of estrogen receptor signaling and which targetsspecific G₁-acting cell cycle components (21). Our previousstudies have shown that I3C down-regulates CDK6 transcriptionby disrupting the functional interactions of the Sp1 transcriptionfactor with an Sp1-Ets composite DNA element in the CDK6 promoter(19). I3C also causes a pronounced decrease in CDK2 specificenzymatic activity and inhibited phosphorylation of endogenousRb proteins (20), although the precise mechanism underlyingthis process has not been characterized. The activity, accessibilityand cellular utilization of CDK2/cyclin E can be regulated atmultiple levels, any one of which could be potentially targetedby I3C treatment. For example, in addition to cyclin association,the activation of CDK2 also requires the dephosphorylation ofThr¹⁴ and Tyr¹⁵ by Cdc25A (47) and an activating phosphorylationevent at Thr¹⁶⁰ by CDK-activating kinase (CAK) (48). Anothermode of regulating CDK2 kinase activity is through the associationwith cyclin-dependent kinase inhibitors (CKI) such as p21, p27,and p57. Recent studies have also shown that the subcellularcompartmentalization of either cyclin E or CDK2 greatly altersits enzymatic activity and accessibility to nuclear residingCAK, Cdc25A, and known substrates of CDK2 (49-51). Inthis study we demonstrate for the first time that I3C selectivelycontrols the size distribution of the CDK2-cyclin E proteincomplex with concomitant alterations in cyclin E interactionsand subcellular localization that results in an inhibition ofCDK2 enzymatic activity in human breast cancer cells.

Treatment of MCF-7 human breast cancer cells with either DIMor the anti-estrogen tamoxifen induces a G₁ cell cycle arrestand inhibits CDK2 enzymatic activity (20, 53). In contrast tothe effects of I3C, DIM or tamoxifen did not alter the interactionof the lower molecular mass forms of cyclin E with the CDK2protein complex or regulate the nuclear localization of theCDK2 protein complex (summarized in Fig. 9). Thus, the formationof the larger CDK2 protein complex observed in I3C-treated cellsis not an indirect consequence of the cells undergoing a G₁cell cycle arrest. A key problem in using tamoxifen in the clinicalmanagement of breast cancer is that a majority of the cancersthat do respond to this anti-estrogen eventually acquire resistanceto prolong tamoxifen treatment (63). We propose that the previouslyreported synergistic inhibition of CDK2 kinase activity by combinatorialtreatments with I3C and tamoxifen (20) is due to ability ofthese two anti-cancer agents to disrupt CDK2 function throughdifferent cellular pathways. Because lower doses of tamoxifencould potentially be used in the presence of I3C, conceivablythis indole could potentially be used to overcome the tamoxifenresistance or prolong the duration in which tamoxifen is effectivein suppressing the growth of breast cancer cells. Similarly,of I3C and DIM combinatorial regiments could also be developedfor treating breast cancer

Hope this helps.

anondenet

Erick, the study you found is a test tube study of breast cancer "cell lines." This is not a human study. MCF-7 breast cancer cells are first cultivated in the lab. http://www.ebmonline.org/cgi/content/full/228/9/995

A research group buys the cells and then experiments on them with whatever substance they choose. Also, each study may add a different concentration of the substance. One strength may encourage growth and another may arrest growth. There are huge number of variables.

Cell line (test tube or in vitro) studies do not extrapolate well to humans who have various compensation mechanisms going on. We have livers and metabolic mechanisms which alter and complicate what goes on in the test tube. The next step after cell line research is to apply the research to rodents.

I admire you for doing this research!

LouiseIndigo

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

twirlgirl

This is a really helpful dialogue! Thanks so much for sharing different points of view and the links to research. I can't tell you how great that is! Just what I need right now.

susan_CNY

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.

anondenet

Louise,

Marilyn L, on the Amazon Discussion Group for alternative therapies posted the I3C studies a few weeks ago. These were animal studies regarding the carcinogenic potential. I'm sure the studies are available.

The potential for the brassica (cabbage family) vegetables to suppress thyroid is widely known. Even grazing animals who graze on kale can get goiter. Two women taking I3C have stopped because

existing nodules on their thyroids grew. Soy in large quantities is also a goitrogen as is cassava.

Bernard Eskin, MD, a widely respected mainstream doctor, has spent his life (he's in his 70s) studying the thyroid's relationship to the breast. He has made several presentations on this subject.

So has Dr. Smyth. See http://breast-cancer-research.com/content/5/5/235

Good luck!

Anom

meadows4

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?

anondenet

A lot of people with Hashi's take iodine but you should do it under the supervision of an iodine-literate practitioner. See the Iodine Practitioners Directory covering 18 states: www.breastcancerchoices.org/ipractitioners

Also there is a 1600 member online group of people taking iodine. A number of them have Hashi's. http://health.groups.yahoo.com/group/iodine/

They could give you a better idea of what they do.

erickcarpenter

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

anondenet

Erick,

Can you find any studies that do not have the term, "cell line," in them?

You aren't cherry picking at all. These studies just aren't significant because the only tell you what chemical reation will occur in a test tube or petri dish with a specific concentration. 

But a more important piece of info is your wife taking Synthroid. This may be a good piece of information to sleuth why your wife's risk of breast cancer turned into an actual "incidence." Women taking Synthroid have twice the incidence of breast cancer. The chances of getting breast cancer increase with every five years of taking it.

Please see JAMA: http://jama.ama-assn.org/cgi/content/abstract/236/10/1124?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&searchid=1&FIRSTINDEX=0&minscore=50&resourcetype=HWCIT 

anondenet

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.

erickcarpenter

Cool. We have actually had the conversation of switching to a naturopathic treatment that would help reactivate her thyroid, versus just masking the symptom. I will speak to her about this. (mine is also out of whack). Thanks! and I will see if I can find human studies for I3C. Part of the problem there is that no one pays for studies like that as there is no money in it. ie. drug companies will sponsor a study, whereas natural treatments have no such backing.... the downside to our medical system.

erickcarpenter

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!

FEB

We all have a little voice inside our heads, women's intuition, or whatever we want to call it, that tells us how to make these tough decisions. I went into a panic mode every time I took that little white Arimidex pill, then I would fly into an irrational rage, that I would have to take this ridiculously expensive pill for years. I was a wreck about it. More scared about this than surgery or rads. After no help from the onc or nurses, who basically told me to just give myself time, my radiologist said, why don't you just wait until you are done with rads. I felt such relief that someone was telling me to take the time to make this decision. So I stopped taking the pills. It was like a huge weight off my shoulders. I never felt that this pill was going to help me, I just felt it was going to cause more problems. So I realized that my body was telling me to take a different road. I decided to balance my hormones with good nutrition and exercise, which I had never been diligent about before. I feel healthier now than I did before bc and I also feel that I have control of my health. I truly believe that my body has the power to heal itself, as long as I give it the right nutrients. So my point is, this is a personal decision, only you can answer. Just listen to that little voice in your head. When you make a decision based on why you truly believe is the right way to go, you will be at peace with it.

erickcarpenter

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).

LouiseIndigo

Thanks to all of you for your insights and support. I'm right with you Linda when you say we've got to use our "intuition". I've walked a very straight line medically up to now. From here it's very much my own journey. But then again, whatever choices we make, it's still ourselves alone who get to follow them, supported or unsupported by medical science.

Louise

Little-G

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