Refusing hormone therapy
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Yaniza, did you have an Oncotype test done? I am surprised that your dr. Thinks it is okay to not take an antihormonal. Was your tumor less than 0.5 cm?0
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Zeldabug, sounds like you need a second opinion with another MO. Tamoxifen should be an option for you, and there are many different AIs to choose from. So I hope you live somewhere that you can go to a different facility and get another point of view. A lot depends on the specifics of your diagnosis, age, family history, etc. which you might consider putting in your profile here so others in a similar situation can chime in.
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The good and the bad: first the bad.
I was on a trial with an angiogennesis drug which probably caused a bowel perforation, landed me in the hospital for a month and almost killed me.
The good:
Taxol completely obliterated my inflammatory breast cancer and the mets in my bones. Since then, I've been on Xeloda for about 4 years. No side effects at all. Stable disease. My onc is amazed.
Lesson for me: Life is a risk. You don't know the future. Just because one drug wasn't for me, other drugs work wonders. My prognosis in 2011 was one year if I did nothing or if nothing worked. Here I am seven years later still doing fine.
BTW, after my first BC diagnosis, I took Tamoxifen for 3 years. No side effects at all. It might have worked since that BC never came back (meaning the ER+,PR+ type).
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>>[...] that the literature refers to people who can't tolerate the side effects of hormone therapy as "non compliant". Non compliant women. Why not "unbearable side effects"<<
I do not know if it is referring to those persons who have suffered intolerable side effects. Some quit with the start of the first uncomfortable side effect/s, which may shortly pass as their bodies adjust with continued treatment. Among those called non-compliant are those who have never even presented their initial prescription to be filled. Among those called non-compliant are those who have not had their prescriptions filled at a rate that would permit their taking their medicine as prescribed. Among those called non-compliant are those who decide their money would be better spent at Disneyland, etc.
>>Apparently aromatase inhibitors can cause depression.<<
I understand there are medicines that can help about that.
>>achey muscles<<
I understand there are medicines that can help about that.
>>between a rock and a hard place<<
Between a rock and a safety net or cushion. It might be a choice between (what could be) an easy treatment, just simple daily dosing wilth no particularly bothersome effects therefrom -- and grueling death by cancer, or a chance to substantially delay grueling death by cancer. Of course nothing is certain for any given case-- one never knows that way. But we know that these anti-hormonal treatments can reduce hormone-sensitive breast cancer recurrence probability by roughly half.
>>I asked what happens to women who cant tolerate the side effects [...]<<There are no *the* side effects. There are some known possible side effects, many of which are minor, even trivial. Of the known possible side effects, none are universal. For persons who have not had these medicines, there are no side effects whatsoever.
My Dear Friend *R*, may she rest in peace, was the first woman in several generations of her family who did not have her ribs scraped in extensive surgery for breast cancer. It had not been only her women ancestors and her daughter before her own case -- there were collateral relatives too, including some men, who had that surgical treatment, besides other especially harsh treatments as they were available in time for their own cases. *R* had modified radical mastectomy, and she had some cancerous axillary nodes. Tamoxifen had come along in time for her case. That was her adjuvant treatment, and because she was at such high risk for breast cancer, her Tamoxifen treatment was extended for the rest of her life. She never had recurrence of her cancer. She walked on from this World, from old age.
For my Dear Grandmother, may she rest in peace, there was no anti-hormonal treatment available. From the time of her surgery and diagnosis, she suffered increasingly from her breast cancer for the next twenty-three months, until she walked on from this World.
---
"Never blame the rainbows for the rain."
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58083...
This study was done in Toronto.
This article published in 2018 explains the advantages of flaxseed and breast cancer. I usually eat a flaxseed muffin I make in a mug and microwave for 60 seconds. I ate it not to attack my cancer, but to help me stay on a low carb diet and these muffins would fill me up for hours.
I make it this way:
1/4C powdered flaxseed meal
1/4 C natural unflavored whey protein (not in recipe, I added it for additional protein adds 2 g of carbs)
1 tsp aluminum free baking powder (recipe called for only 1/2 tsp)
1 tsp erythritol (recipe called for stevia 1/4 tsp or 1/2 packet of splenda)
1 tsp of cinnamonadd all together in a large coffee mug stir with a fork
then add 2 tbls (scant 1/8C) of liquid coconut oil (recipe calls for 1 tsp of any oil)
stir well with fork
add 1 egg; mix well before incorporating into the muffin mix- I break it into the cup with all the ingredients and scramble it well before I stir it up with the other ingredients that way I save dirtying another bowl.
Sometimes I add chopped walnuts then cook in microwave on high 65 seconds
Tip it out of the cup, use a serrated knife and slice into 4 slices and smother it with butter.
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https://www.drmarinajohnson.com/estrogen-good-bad-ugly/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2556941/pdf/ehp0108-a00416.pdf
https://www.news-medical.net/health/Estrogen-Types.aspx
Lots written about “good” and “bad” estrogen.
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please do read the reviews on this practictioner---www.RateMds.com--I wasn't surprised..best to all,K
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1redgirl...thanks for your posts on good and bad estrogens. This is the exact theory on why DIM works!
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As someone who is on cancer #2 I would just like to say that whatever you choose to do is very personal.
On either side of this debate you should state what you are doing and why, but I don't think it is right to imply that what you are doing is right for everyone. I also saw this on the chemo thread where one person on 12 weeks of a simpler chemo regimen was telling everyone if the they just drank 3 litres of water and used a certain # of drops of CBD oil that they would just breeze through chemo like her. I am very happy this worked for her and might help some people, but I had consulted a medical clinic after terrible side effects and they researched and found that CBD oil would have limited the effectiveness of one of the drugs I am on. How sad that would have been. We all come to the table with different medical histories, allergies, etc. and are often undergoing or are recommended different treatments - dose dense, different frequencies, different medication combinations, targeted therapies in conjunction- based on our own diagnosis.
The main question, is can you confidently make your decision - hopefully well informed - and live with the consequences with no regrets.
I did take 5 years of Tamoxifen round 1 and had bad SEs the first 2 years. When I was diagnosed with a second breast cancer (not a recurrence - still disease free on righty), I have never had to question my decision to not complete treatment. I seriously thought about stopping at one point after needing a second gynecological surgery.
Cancer #2 in lefty is more aggressive and HER2 positive. My chance of recurrence was 80% if I had just done surgery. So I am layering everything they've got, but that is my choice. I have been recommended after chemo, herceptin and radiation to do 2 years of tamoxifen and 8 of AI. I know how hard it was, but I'm going to do everything as well as some natural remedies including diet changes. I need to know I have done everything I can as I know several women from my first time who are stage 4 or no longer with us. They all made varying choices including natural, so I'm not saying what is right or wrong. They all made their informed choices and I'm making mine. This is what I can live with.
I hope you can all find the right choices for YOU.
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My story is similar to Yaniza-just had bilateral mastectomy (was in both breasts though) on March 7, clear lymph nodes and margins. I haven't seen MO yet for first appointment so don't know if he'll want to prescribe tamoxofin or give me chemo to prevent recurrence (waiting on oncoytpe dx results).
In the meantime Ive started going to naturopath. Naturopath ordered 'Dutch test' to determine how body processes hormones/estrogen. If I don't process it well then hormone therapy may not do very much for me.
Has anyone done the dutch test to help with their decision?
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I used to be hesitated to take Tamoxifen and thought about not taking it due to many its side effects. However, after a month of taking a serious consideration, I decided to use it because I am still young and I want to live longer to do whatever I want, spend more time with my family. I was very scared before I took it. I have been on Tamoxifen for a month exactly and haven't still seen any its side effects surprisingly except two things: my shorter sleep cycles and my period is not coming yet. I don't know whether the side effects won't come to me or my body is reacting to Tamoxifen slowly. It's still so soon to conclude. But I hope that I can be in the group of women who do not have its side effects.
"You never know if you can't try...", my oncologist told me when I showed him my hesitation about taking Tamoxifen. In my opinion, just take it and see how it goes. If you have its side effects, tell your doctors and they would stop it and find alternative treatment. If you don't, that's good too cause you are just given more positive chances to live. Let's think of your beloved family, friends, and a life you really want to live in, etc.
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TammyKh, I'm glad you're not having any side effects from Tam. Most people don't.
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Thanks pupmom. Although I haven't seen any side effects from Tamoxifen, my period is not still coming yet. Menstrual irregularities is one of the most common side effects of Tamoxifen. So, I guess this could be its side effect. But I don't know it is good or bad if periods become less regular, lighter or stop altogether in some women who haven't gone through the menopause naturally.
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Tammy, it depends on if you want kids now or not. Can't take Tam while trying to get pregnant.
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Pupmom - I don't plan to have kids until 35 (I'm 33 now) or I can think about trying to get pregnant whenever I finish my hormone therapy and other treatments or until I can meet my Mr.Right. So, if Tamoxifen causes my periods become lighter, less regular or stop altogether while I haven't gone through the menopause naturally, is it good or bad for my vaginal health later? Any risks for my uterus?
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Tammy, I don't know. The drug does come with a small risk of uterine cancer, so that's something to think about.
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Hi guys,
I did tamoxifen for 3 months then got really low mood, fatigue and sleep disturbances so stopped. Right now I am going to refuse hormone treatment. My period returned yesterday.
I have read all the research I can find on hormone treatment. As far as I can see, the reduction in risk is averaging about 6%. Often the relative risk reduction is reported instead of the absolute risk reduction. So with regard to tamoxifen you will hear that it reduces risk by 50%, however of you look at the studies, it reduced risk from 8% to 4%. Do you want to take the drug for a 4% drop in risk? It's a very personal decision...
My cancer was all grade 1. While it had spread to many lymphnodes, I really feel that as it's grade 1 it can be managed with diet and supplements. I do a keto diet (low carb), I use fasting and also take an array of supplements for estrogen detoxification. Have also stopped using all plastics and chemicals which have xenoestrogens.
Another thing is I was on the pill for about 8 years before being diagnosed. This would have meant that my estrogen was raised and my hormones were out of whack. I would like to try balance my hormones and see if that works. I am due to take the DUTCH test this month to see where my estradiol (the metabolite of estrogen linked to breast cancer) is at and I will make decisions about further interventions then.
My feeling is that as oncologists want to keep us alive, they offer any drug which they believe could help. I think the oncologists are trying to convince themselves that the drugs are better than they are, just so they feel like they are helping us and so that they feel like all the years they spent training is of use.
My issue is I just don't think the data is there to justify taking the drug, for me anyway. Take a look at the papers on the SOFT and TEXT trials if you are interesred. Also look at the ZIPP trial and any research which looked at women who did not take hormone treatment.
Finally, I know I have to live with my decision. And how I feel is that I would rather feel my best in my youth and if I get stage IV later, then I will make decisions about how I will deal with that then.
I just can't accept compromising my quality of life while I am still young for the possibility of something happening that might not happen at all. Especially when I have other scientifically supported ways of reducing that possibility.
Best of luck to everyone with their choices.
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Dear Rioghnach
With so much lymphnodes involvement (which is the most important element of your diagnose) and a such stage, your risk recurrence is not 8, 6 or 4%. Not at all. I am so sorry to announce you that, believe me.
You can check for example on the http://www.lifemath.net website what is your risk if you want to know. Maybe other people can give you other BC life expectancy websites.
The keto diet + Tamoxifen seems to me an excellent plan for preventing recurrence (I do keto diet for 18 months now). After 12 or 18 months of Tamoxifen, the body is used to it and most of the side effects fade away.
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Hi Misstic,
Oh I know my risk of recurrence isn't 8, 6 or 4! On the risk instruments it's coming out at about 70% so very high risk. What I am saying is that hormonal treatment will only reduce it by approximately 6%, max 10% (that's nothing to be scoffed at I suppose but still not a huge reduction and still not worth the side-effects in my opinion).
I have also contacted the researchers who designed these risk instruments and I asked them how many of the people studied were under 35 with grade 1 tumours. In the case of Predict 2.0, I was told of the approximately 4,700 women who were included in the studies upon which the risk estimate is based, only two women were under 35 with a grade 1 tumour. That is no where near statistically significant and I'm certainly not going to take life-altering drugs based on two people!
Thank you for your concern though and I really am open to what people say and want to consider all angles!
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One thing I've learned from being on these boards for almost 8 years, is that people will do what they want to do, regardless of the possible consequences. Many women here who refused chemo and/or hormonal therapy have passed. But, your body your choice.
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I am still here. I did what I thought was best.
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Hi Meow13,
I'm new here, and don't know how to get to the posts where you wrote about refusing hormone therapy. Why did you decide against it?
How do I find out if I'm more likely to live longer with or without any adjunctive therapies? I can't find any research on women in my age group.
I am 82, with Stage I/Grade 2 breast cancer; had a lumpectomy with clean margins. I started Arimidex (generic form) last week, and am having mild side effects so far.
My doctor's mother is a little older than I am, and after her lumpectomy she did no adjunctive therapy. She was a doctor herself.
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OctoG,
I replied to your same question in the other discussion thread.
Here is an article about endocrine therapy in elderly patients that covers a lot of information but unfortunately doesn't really draw any conclusions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5822785/
You might want to input your diagnosis into the CancerMath therapy calculator to see what benefit you would get from endocrine therapy: http://www.lifemath.net/cancer/breastcancer/therapy/index.php
Another similar model, from the UK, is PREDICT: https://breast.predict.nhs.uk/tool
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I actually took AI drugs for 4 years but I really wasn't informed about the down side of taking them.
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I agree with the other replies- Your oncologist can put your specifics thru the available probability tables as to your likelihood of recurrence and help you make an informed decision best suited to your individual circumstances..much depends on your general health, the specifics of your tumor, nodal status,and personal preference. You say you have started the arimidex and doing ok with it-,so perhaps just see how it goes - you can always stop if side effects become too unpleasant--unlikely but possible- and you are getting some protection--
I am 70 and have been on letrozole--another aromatase inhibitor for 17 months with minimal side effects--mild joint achiness and sleep disturbance- small price to pay for knowing I am doing all I can to ward off a recurrence
Do read lots of the forums on this site- it is legit and very informative and supportive--hugs to you, Kaylie
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Hi Beesie,
Thank you for your reply. I will follow your links. I'm still working on figuring out how this forum works. I'm frequently asked to log in.
Sue
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Hi Beesie,
I can't find the other discussion thread. Can you please tell me the name of it? I was very grateful for the information you provided.
Sue
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I should mention that I stopped anastrozole after three weeks. I had such severe pain in my leg that I couldn't sleep at night, but that wasn't the reason I stopped. Nor was the dizziness. The side effect I couldn't manage was loss of vision. I went to my retina-vitreous surgeon, and he said that anastrozole can cause hemorrhaging into the retina. He did scans of my retina, and said both eyes had been bleeding, and gave me an injection of Eyelea in each eye. That will stop the bleeding, but I won't get the vision back that I lost. I can no longer read the very top letter on an eye chart with my right eye. I don't know if it was the anastrozole that caused this, but I need more time to think about what to do. I am 82.
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OctoG, if you click on your name it will show your recent posts to find the other thread
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pompom...your response to Rioghnach was unnecessary. Unfortunately there are also many who have had all treatments who have passed too .Most people do all treatments. We all know the stats. There are no guarantees no matter what, wish there were. She obviously did all her homework before making a decision and it should be respected. Its her personal choice and I'm not sure why you feel you have to come on a thread titled refusing hormone therapy and use scare tactics. Lets try to respect each others choices.
OctoG...I refused anti hormone therapy from the start. Please let me know if you have any questions.
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