Decison on whether to take hormonal therapy

linde22

Hello -   I first posed this question on the 2nd recurrence forum but perhaps it can be better answered here.  After having been dx with BC either once or again and hormonal therapy was recommended, has anyone opted not to go that route due to the SE's would outweight the benefit and did you change something in your lifestyle instead?   Thanks

Denise2730

I opted out of taking hormonal therapy. The side effects were effecting my quality of life. I changed my diet to a certain extent but I truly feel treating cancer is a crapshoot. Some people do everything right their whole lives & develop breast cancer. Then there are those who do all the wrong things and never develop breast cancer.

Is your cancer ER+? Mine was and I still said no but everyone has to do what they feel is right for them. I was DX last April, had my DMX in August, exchange in Dec. and I'm having them redone in June. I chose not to do chemo or hormonals and so far, there is NED. But I had just one positive node, not sure how much they has to do with it.

susanes

I just started on Femara,.. waiting to see what side effects kick in. I have osteopenia, so am worried about bone loss! But I figure I can always stop if I decide to, and I hear the side effects are reversible!

dlb823

linde, I opted out of hormonal therapy after a bad but very rare episode with Femara.  But I'm squarely post menopausal, and my gut instinct told me and later testing confirmed that my estrogen levels were aleady extremely low because of having been on HRT for a number of years prior to my bc dx.  

You might want to use the search feature (to upper right) and search for words like DIM, I3C, and Grape Seed Extract -- all natural estrogen modulators that many women on BCO use either in lieu of Tamox or an aromatese inhibitor, or along with one of them.  They've all been talked about extensively on this site.

You might also want to look into having your estrogen levels checked by a good naturopathic doctor who is experienced at working with breast cancer survivors.  From what I've learned, a 24-hour urine test (which I've now done 2x) is the most reliable way to find out what's going on with all of your hormones and what kind of hormone therapy, supplements, and/or other lifestyle changes would benefit you.    

Good luck figuring out what's right for you.  The one-size-fits-all offered by most oncs may not be best for some of us, but we're each so individual, I would encourage you to do your own in depth research, and not copy what anyone else tells you they're doing because that may not be right for your body and dx.   (((Hugs))) and welcome to BCO!     Deanna

pupmom

Been taking Aromasin for 4 months and doing great! Last CT scan showed NED. Even if I had SEs NOTHING would convince me to stop taking this life saving treatment and reduce my odds for survival. But that's just me. Best wishes whatever your choice.

exbrnxgrl

I have been on Arimidex for almost 4 months and the se's have been very tolerable. I did up my exercise schedule, take glucosamine/chondroitin and MSM. All of the above suggestions are great. The bottom line is that you can try it and stop if it's not for you.

Caryn

linde22

DLB -  I am in total agreement with the Oncologists idea that one size fits all.  I did try the arimidex for only two weeks and I was have a side effect that effected my mouth so I stopped.   The Oncologist gave me a prescription for Aromasin but I have not filled it as of today.   I do not like being scared into taking drugs.  The HT has many side effects and the loss of bone density is a big one.  That is not a reversible side effect that I am aware of.  Perhaps I am wrong.  
Caryn - you are absolutely correct on trying it and than if I don't like it to stop.  As everyone has stated it is an individual choice and I must feel good on what I decide.    Thanks you to al that have written. 

Jomama2

I opted out, and my MO said he respected my choice and completely understood my decision.  I have switched to only hormone-free dairy (and a limited amount at that, mainly coffee creamer), cage free organic eggs, organic greens (I make kale chips and am determined to love brussel sprouts), whole grain bread etc., eat only grass fed bison/poultry etc.  I have yet to get a firm exercise program going, but am working on it. I take aspirin, melatonin, Vitamin D, fish oil right now and am investigating I3C, DIM, iodine, etc. but I cannot really afford a slew of vitamin supplements at this time.  I have type II diabetes, so I take Glucophage (metformin) and am trying to cut carbs and portions to get my insulin and blood sugar under control.  My primary care physician has agreed to have my estrogen levels tested, but will not refer me to an endocrinologist.  I looked very carefully at the possible side effects and just knew if I had any of them I would use it as an excuse not to exercise. Do what you think is right for you.  I agonized over it for weeks, but have chosen to make lifestyle changes instead. 

suzieq60

I switched from Arimidex to Aromasin and am much better metally - Arimidex made me feel quite depressed. I have bad arthritis, so any aches and pains I attribute to that. I do take D3 and calcium supplements as recommended by my onc and also have 4 Zometa infusions over hte past 2 years.

luv_gardening

I used Arimidex without any problems but my Dexa scan showed I already had Osteoporosis so I changed to Tamoxifen.  I've researched extensively in the nearly 3 years since my diagnosis as I was never convinced that chemotherapy was right for me.  But the hormonals have a much clearer effect on the statistics.  They have a very definite and large effect on the progression rate for ER+.  Unfortunately nothing else has the studies to show their effects on BC, but there are things like DIM or Resveratrol or Mushrooms that may be equivalent provided they are used daily, it's all unknown.

I wish there were better studies for alternatives or a better way to test our estrogen levels. I guess that's the main requirement, to have your estrogen levels checked bearing in mind they change during the day.  Then you can get an average to show if your alternatives are working.

Twinmom77

1st dx - I opted out of Tamoxifen after the side effects made me miserable. Worked with a naturopath, changed my diet, used DIM and chinese herbs for estrogen metabolism, was addicted to exercising and working out.

2nd dx - new primary, other breast, ER+ went up to 99%. I'm not unconvinced that the supplements had something to do with the ER status going up. I guess I'll never know, but I don't think DIM works in pre-menopausal women the same as post-meno. I'm now happily (sort of) taking the Tamoxifen this time around with no major side effects.

It's a really hard decision. I spent months trying to decide what to do with the 1st dx. It was a no brainer with the 2nd dx considering it's my only tx. The nice thing is, you can try it and stop or you can think about it and start later. Good luck to you!

CancerStinks

Hi TwinMom, I am trying to decide whether to take Tamoxifen:  what do you mean "I am not unconvinved that the supps had somehting to do with the ER going up."  Meaning that you are convinced? I'm confused;  I thought tamoxifen kept the cancer cells from binding with estrogen and therefore starved the cells if they are fueled by estrogen. Also: What were the SE that made you stop tamox?  many thanks!

Twinmom77

Hi cancerstinks...I'm sorry, I wasn't super clear in my post. You're correct, Tamoxifen does keep estrogen from binding. I was speaking of DIM and chinese herbs. I meant that I suspect that the supplement DIM and the chinese herbs may have not had the desired effect on me, which would be lowering my estrogen and metabolizing the estrogen properly.

As far as se's, the first time I had severe whole body itching, abdominal bloating, depression, eye problems...I know there were more but I can't remember them now.

This time I've had hot flashes, which have gone away, and mild irritability/depression which I treat with Holy Basil. Overall, a much better experience! I hope that helps! Good luck with your decision.

kathylyon

DLB - Are you taking anything right now?  I went to a alternative specialist yesterday and she recommended the DIM.  She also mentioned the urine sample which would tell the ratio of the good estrogen from the bad.

Thanks

. 

dlb823

Bumping for Victoria

Hindsfeet

My Estrogen 96+ and Pr 29+ so my oncologist was pushing me to take Al's or Tx. I mention that my bone density was low and I didn't want to end up with a broken hip. She followed that statement up with a bone density test and found what I said was true. She then prescribed Fosamax. One pill and my mouth broke out with several mouth sores, my tongue and throat swelled up, I was extremely dizzy, fever, and could hardly stand on my feet...plus chest pain. She saw that I was allergic to meds like fosamax so Al's for sure is out of the question. She then strongly suggested Tamoxifen. I said I feared the risk of a stroke from Tx more than a cancer recurrence. I had just begun my herceptin treatment and it was obvious I am one of the few to have heart issues. After 2 infusions my EF dropped 15 points and I' now have constant PVC's. I'm at a higher risk for a stroke. So my oncologist has stopped pushing the hormone therapy. I think she sees my body is fighting enough with the whole herceptin treatment and even may have to stop that if my EF drops anymore.

My oncologist said that heart problems have only happened with people, who take herceptin with chemo. I can't imagine what would had happened if I had taken both? If I hadn't questioned or just followed blindly protocol, I'm not sure I would be here now.

AlaskaAngel

Jomama2,

I had a bigger tumor and took tamoxifen for 1 3/4 years but quit in consideration of the problem with taking tamoxifen for about 1/3 of HER2's who have a high AIB1 level, after I had cut back to half dose for the last 1/4 year. I was never fond of taking it, since it terminated my active, enjoyable sex life within 2 weeks of beginning to take it (I was 51 when I did chemo.)  The hot flashes were something I had expected, so even though they were not fun either those didn't stop me from taking it. But my onc and my PCP had never provided any indication that it would ruin my sex life, and when it happened and I went to them for help, they just sat there and stared at me and changed the subject, as if it was of no consequence whatsoever, and as if I wasn't entitled to know before taking it. I decided to take the risk, and go without. I'm 10 years out with no recurrence, but I do maintain a primarily vegetarian organic diet and I do maintain a daily exercise program. (I wonder what percentage of benefit one gets with daily exercise vs what percentage of benefit does one get with tamoxifen, just out of curiousity....?)

I know there are an awful lot of women who choose to do tamoxifen because they it is "saving their life" but who won't exercise daily to save their life. To each their own.... and I'm doing quite well.

BTW, I lived for quite a while in northern California myself and love the Sierras...

Joylieswithin,

I agree about the benefit of hormonals for HR positive bc, but there is some controversy about how beneficial it is for HER2 positive HER positives. In addition, what benefit I got with tamoxifen was obvious in that within 3 months of starting to take it, my mammograms went from dense to almost crystal clear.... which to me at least is evidence of reduction of estrogen, and that didn't change after I quit taking it, so I think I at least got that benefit from it while I was on it.

A.A.

Kaara

I was anti chemo and anti rads, but I am taking tamoxifen as a preventive for both breasts and for distant mets.  The SE's have been very tolerable, but I am taking only 10 mg which I feel is adequate for my stage and grade of bc.  I'm also taking a load of other supplements that accomplish the same thing as tamoxifen, so I feel I'm covered for the time being.

peggy_j

Twinmom77 wrote:
I'm not unconvinced that the supplements had something to do with the ER status going up....I suspect that the supplement DIM and the chinese herbs may have not had the desired effect on me, which would be lowering my estrogen and metabolizing the estrogen properly.

Huh. Does anyone know how/why some BC tumors are ER+ and some are not? I've never thought about this. FWIW, I once read (in a brochure from the cancer support center)  that some researchers suspect that diet can influence the grade of tumor. Their example: there seems to be a correlation between diets high in Vit A and tumors that were grade 1 (vs. a higher grade). I have no idea whether this is true. (I bet there a members here who had lots of Vit A and still got a high grade tumor).

Twinmom77, from what I've heard, having a tumor be ER+ is considered to a be a good thing (because it might respond to hormone blockers, and the prognosis is statistically better)

Kaara, I love your avatar. You look so happy!!! 

Hindsfeet

I'm not sure about the diet influencing the grade of tumor. There are bc women who have more than one grade in a tumor. My left breast was IDC with a grade 1...and the recent right breast was IDC grade 3 and 10% of DCIS. From what I've read hormones in milk and meat...and WATER...are laced with hormones, estrogen. Plus, stress, the adrenaline can increase our estrogen hormones level.

It is my hunch that when you take hormone blockers or perhaps don't get a lot of bad hormones that it possibly could cause estrogen negative tumors. That's just a wild guess as I'm no medical researcher.

purple32

but bone loss is not reversible.   I have osteopenia.  They want me on Tamox.  I sure wish Raloxifene was an option, but no.

UPDATE:  No , now they are saying Arimidex which truly accelerates bone loss, and I have broken 3 bones already.

barbiecorn

I too refused chemo - still on the fence about taking an estrogen blocker like Tomaxifen but they wanted me on an AI and Herceptin - my BC was Her2+ - but the side effects of Herceptin (heart related) could not do it because I have a strong history of heart problems in my family.  I am a senior and am now doing the veggie diet, taking numerous supplements and am going to take DIM to help block the estrogen - I had the hormones checks and my total estrogen was high so I know I need to do something.  Have an appt. with an integrative doctor next month.  There are women who do nothing and never have it come back.  A women in her 80's was just diagnosed again after stopping the tomoxifen and now she is back on it.  I may still do this but just want to get as much info. as possible.  In the meantime, I am taking lots of supplements, eating properly...no meat, dairy, etc. - nothing with hormones in them...and I do pray a lot....(((hugs))) to all!!!!!

itsjustme10

I did chemo and radiation.  I tried Tamoxifen, but couldn't tolerate it, and I refuse to be put into fake menopause to take an AI, so I'm watching my diet, upping my exercise, and looking tinto supplements. 

MariannaLaFrance

I had Stage 0 DCIS, with the 2.4mm cancerous portion of my duct reading 97%ER, 98%PR. My progesterone was higher than the estrogen. I researched a lot, and after reading a lot on hormones, I made the decision to not take Tamoxifen. I had lumpectomy followed by 6.5 weeks of rads.  I have not taken any DIM or other supplements, but I have had my estrogen levels tested, and my levels of estrogen are waning naturally in my body (perimenopausal state).  

Since docs seem to be so unclear on what role progesterone plays in cancer, I finally figured that there was not enough clarity for me to diminish estrogen without knowing what actually fueled or caused my cancer.  

It's a pretty personal decision, so hope you find the information you need to make the choice you feel comfortable with!! 

linde22

Marianna - How did you have your estrogen levels tested? thanks Linde

Marilyn33

Hi, I am new to the forum and reading with interest. Have an appt with the oncologist next week, he thinks I'll be starting chemo but I will be refusing that and I'm sure he won't be happy about that. Why is it doctors always get upset if you question them. I am not willing to take the chemo poison into my body. (I am also fighting to have an oncotypeDX test which I will pay for to help me with my treatment decisions.) I figure that because my ER is 100% positive and PR is 95%, I would like to give hormone treatment a try. He mentioned that after chemo I would start with fermara (?). I think the side effects are less than chemo at least. Has anyone had experience with this aromatse inhibitor? (I'm 57, post menopausal).

Ginger48

Marilyn- check out the thread called Femara in the " Hormonal therapies before, during and after" section. Lots of discussion about femara there.

Anonymous

Wow, pretty strong language for a new poster Lolahasit.....????

Some seem to forget that Linde posted on the ALTERNATIVE FORUM where the rule is:

THIS FORUM IS A SAFE, JUDGMENT-FREE PLACE FOR ALTERNATIVE THERAPY USERS AND FOR THOSE WISHING TO LEARN ABOUT ALTERNATIVE THERAPY ONLY. ALTERNATIVE MEDICINE REFERS TO TREATMENTS THAT ARE USED INSTEAD OF STANDARD, EVIDENCE-BASED TREATMENT.  PLEASE REFRAIN FROM PROVIDING INDIVIDUAL MEDICAL ADVICE.

Lolahasit and some others:  PLEASE RESPECT LINDE AND BCO RULES

Linde:  I posted the following on "Oncologist's approval to take a long break from Tamoxifen" thread

May 10, 2012 06:32 PM Maud wrote:

Yooooohooooo, just came back from an incredible visit with my onc !! Did Tamox almost two years, am post menopausal, so he agreed to give me a few months' break, i.e. 3 months (stopped approx 6 weeks ago). He finally agreed with me that I WILL NOT be going back on Tamox. I somehow agreed to try Arimidex pending lots of research I will be doing on the med and on AIs in general. I said: What if I cannot take AIs either ? He looked at me and said: quality of life is more important, if you can't, then you'll have tried everything. HE DID NOT SEE A PROBLEM AT ALL !!!!

Before that discussion, he did say that they now rely on the Oncotype testing for node positive (which they didn't two years ago) for more customized treatment and he did admit that they DO NOT KNOW whether chemo works or not, but that they treat us anyways, just in case it does work..... He also admitted that a lot of women DO GET OVERTREATED !!

He wants me to bring the research on DIM and the natural AIs I've dug up at my next visit in 2 months. He might even agree I take those instead of Arimidex !!!

I will now add, even if he doesn't approve, I know he WILL RESPECT MY CHOICE.  What I want from the onco is follow-up, i.e. blood testing, scans, etc. if necessary.

I swear some posters on BCO are more pro-treatment than the best oncos out there. 

To answer your question Linde, I take a combo supp which includes DIM, I3C, grape seed extract, rosemary, calcium-D glucarate all proven estrogen metabolizers.

You can find many many threads on the subject in this forum, but don't ever hesitate to ask questions and please do not let the tone of some posters deter you from making THE decision that is best for you and influence you in any way 

ETA:  MODS PLEASE DELETE POST ABOVE BY LOLAHASIT. THERE IS NO ROOM ON BCO FOR THAT KIND OF VULGAR LANGUAGE 

luv_gardening

Lola, on another thread you said this:

"If you see a thread and you know that you can't contribute to it in a meaningful thoughtful way, then don't. And if you try to help by posting your opinion and it's not well received, then move on. You don't have to keep trying to convince someone that you're right and they're wrong." 

Maybe you should take your own advice.  It sounds like you need to vent in a different arena where people aren't going to get their feelings hurt. Sorry you feel so strongly, but we all have a right to have our choices respected.

LovesChristmas-Barb

Marilyn...I have been on letrozole (femara's generic) for two months after having tried arimidex. I am experiencing some muscle and joint pain, hot flashes, and fatigue. On the arimidex I was having trouble with depression and anxiety but that has improved since switching to femara. The SE's come and go. I have days when I feel pretty good and other days when the fatigue and joint pain are worse. I've decided I'm going to try it for a while since I'm also strongly ER+ and see how it goes. Right now it is doable. If it gets bad at some point, then I will probably try taking a half dose or quit. I'm hoping to stick out at least 2 years and I'm almost 6 months in altogether. I have the attitude that I can stop taking it whenever I want.

Good luck on your decision...it is a difficult one to make! I skipped the chemo after receiving an oncotype of 10 though my MO still wanted me to do it, but I didn't think it was worth the risk.

Ginger48

Maud- not sure who the "others" you were referring to but i agree that language was unacceptable Sorry if my post offended anyone. I only read the topic and did not notice that it was in the alternative forum. Marilyn asked about femara so I directed her to that topic.