Planning to forgo tamoxifen?

tasothi

I won't go into a whole lot of details just yet because I have to manage how much time I spend on this topic (mentally) before surgery on the 21st. Thank you in advance for understanding.

For reasons of wanting to preserve my sex life which is very important to me, along with a history of previous vaginal pain that I refuse to repeat, as well as having every risk factor for osteoporosis, as well as coming to terms with I know to be my quality of life choices, I plan to forgo all hormone suppressants eventhough I know already I will be recommended to take them and why.

Im having a bmx, I have (as far as they can tell) stage 1 Er+, PR +, HEr2 - in the left breast. Nothing in the right. I have dense breasts. My mother died of breast cancer, I have not been genetically tested yet but plan to. Surgery pathology, as you all know, will help complete the picture of my situation.

I wanted to start a thread on just this topic in case there was not one already. I'm sure there is, but I didn't find it.

I wanted to start one in case anyone else was in a similar boat, wanting a safe thread to discuss this idea without judgment and without interference. By interference I mean being told considering not taking Tamoxifen is wrong and irresponsible. So far from briefly browsing this forum, it seems judgment is not a problem but I didn't dig too far, and I am experienced in health forums enough to know there is always someone looking to make others feel bad about their choices. So, I look forward to hearing supportive feedback on this decision, actual experiences with this decision, as well the thoughts from those who have come to this decision whether in advance or after trying it.

Lucy55

Tasothi ...welcome ..you will find lots of lovely ladies here to support you in your choice.

The only thing I would like to say is that I have been on tamoxifen for over 4 years and have had no side effects at all ...and it hasn't changed my enjoyment of sex in any way ..I was nervous of starting tamoxifen too because I seem to have side effects to most other medications...

Everyone is different , and we all need to respect and support each other's decisions on what is best for them..just wanted to say that it's not "a given " that you would any problems with it .

Edited due to spelling mistake !!!

tasothi

Thanks Lucy55. You have my attention.

Have you gotten the impression that you are exceptional? What I mean is, have you encountered ANYone who has had no effect on sex drive and etc? Also: what dose are you on? Is that the standard dose?

Everything I can find about tamoxifen is abundantly clear that it affects sexuality in MOST women. One study put the number 75% on it.

Moreover, women who have had trouble vaginally are more likely to experience trouble with tamoxifen, and worse than most. That also got my attention because of my personal history in that department.

I'll be turning 50 and have a very strong sex drive and enjoyment of sex. The drive was always there, but the pleasure I now experience is just a few years old, thanks to my new husband with whom I have a very intense connection and compatibility in that an other areas.

May I ask how old you are and if you would say you have a high sex drive compared to the perceived sex drive of most women?

I of course respect anyone's decision. I also keep in mind we are choosing from pretty crappy "options" most of the time.

tasothi

I should clarify the reason I ask about sex drive is I wonder if people with high sex drive experience less negative sexual side effects.

MelissaDallas

Tamoxifen actually benefits bones. Aromatase inhibitors and tamoxifen act differently and have different side effects.

Lucy55

Tasothi...I'd say we have a very active sex life ..We are high school sweethearts ..I just turned 55 when diagnosed ..and both of us have always considered sex a very important part of our relationship..

When you read posts about how tamoxifen has destroyed people's sex life it's important to remember that the only ones posting are the ones who have had side effects causing problems .The ones having no problems don't post to say that everything is fine ...

We are all different..for me nothing changed ..and I 'm grateful for that ..It is possible to start taking it , and if you have problems with it stop then if you wanted ..

So many hard decisions to make ...and nothing is black and white .

tasothi

Lucy55 Im very glad to hear that it is working for you. However I am not getting my information from people's posts. Im getting them from studies and articles.

grainne

Hi and welcome. Firstly, no one will judge you..we all struggle with choices and we all have made that difficult risks/benefit analysis.

I have been on tamoxifen for over two years. I tried AIs on two occasions but couldn't endure them. I have almost no side effects apart from hot flushes which are not bad at all and my sex life is fine. Don't forget that you can just stop taking it if you find it changes things too much for you. Also, exercise helps mitigate any side effects as well as being good for you in every possible way.

The very best of luck to you x

Sjacobs146

Even though studies show that many women have SEs with Tamoxifen, it's not 100%. I myself had no issues with Tamoxifen (I was diagnosed at 48). It's worth trying, you can always stop if you find the SEs unbearable. Tamoxifen actually improves bone health. AIs are a different story, they do affect bone density. I am on an AI now, and the SEs are worse for me, lots of joint pain, but it's bearable.Everyone reacts differently, you won't know how you react until you try.

Yaniza

Hi,

I decided not to take tamoxifen. There are other reasons besides physical side effects. There is a connection to an increased risk for other cancers. It doesn't lower your circulating estrogen. The way it works is in relation to receptors for estrogen.

This is probably not news to you since you are doing your own research.

All the best , Yaniza

tasothi

Hi Yaniza, yes indeed this is one of the reasons I am not into the idea at all.

Also not all side effects are reversible just by stopping, especially not the vaginal ones. Once the area atrophies simply stopping is not always effective.

I actually have not delved into the mechanics of the tamoxifen in terms of how it functions, but hearing it works with receptors is interesting. I'm not understanding how it creates menopausal symptoms, though, if it does not lower circulating estrogen. Hmmm.

Whateverittakes

Hello all, I'm curious now to know how tamoxifen acutally works? I was given my graph chart, prescription & told it lowers My chance of a 9% reacurrance rate. It has not changed my sex life (thank goodness) but it has caused me hell with my legs & joints ( I also have EDS) auto immune issues, plus hot flashes & mood swings, I also can't sleep at night. Im also gaining weight at a quick rate.I'll be 32 in just a few days in case you wondered about my age.

Palesa2018

Hi Whateverittakes,

From the Breastcancer.org website

"Tamoxifen offers other health benefits that aren't related to treating cancer. Because it's a SERM, it selectively either blocks or activates estrogen's action on specific cells. While tamoxifen blocks estrogen's action on breast cells, it activates estrogen's action in bone and liver cells. So tamoxifen can:

• help stop bone loss after menopause
• lower cholesterol levels"

grainne

just a thought...is there anything to the " use it or lose it" theory? Ie, keep at it, rather than stopping during treatment or because of stress and then starting again?

pupmom

I've had no problems with sex while taking Tamoxifen. Why assume the worst before even trying it???

KayS1084

I've been on the tamoxifen for a year I have not had any changes in sex..

buttonsmachine

tasothi, I also didn't experience sexual side effects from tamoxifen, but I do understand your concerns.

My only advice on this matter after two years in active treatment is this: When it comes to your cancer treatment, the only side effects that matter are YOURS.

Everyone has a different mixed bag of side effects. The only way to know yours is to try. It might be as bad as you fear, or it might be totally fine.

I gave hormone meds a try, and I'm glad I did. If they ever start to bother me, I may reevaluate later. Best wishes to you in your decision.

tasothi

pupmom, because I have HAD the worst. I had a terrible experience with vaginal pain that went on for many years caused by a medication side effect.

In addition in a _study_ I read about sexual side effects, the statistic given was 50 to 80% and also people who have had previous problems vaginally are more likely to. It was also noted that way too few studies are done about this topic which affects to many women and who are afraid to talk about it.

Rather than questioning my thought process and making assumptions about it, I would rather hear from people who have come to this decision or are considering it. Comments like this do not help me and make me feel like in fact I wont be able to find people to talk to about this on this forum.

pupmom

Tasothi, I'm very sorry you went through all that. On your thread, at least, it doesn't seem many have experienced that SE. Can you talk to your doctor about some cream that might help? Of course, if you decide to forgo Tamoxifen, it is entirely your choice.

KCMC

Hi, I started TCHP chemo back in July 2017. Ended TCHP in November 2017 and continued H&P til August of 2018. I started taking Tamoxifen in February 2018. I started with sexual side effects before I even started Tamoxifen. Dryness and pain during Intercourse during TCHP.

Sex is very important to me. I have been sexually active all through treatment even with drains in lol! I have asked my gynecologist for advice and he told me that either use it or lose it. My husband and I try to have sex at least 3 times a week. I moisturize my lady parts with either olive oil or coconut oil per gynecologist. I use coconut oil during sex. It has gotten better. One big complaint I have is continuous discharge - I have to wear pants liners all the time. Pantyliners are part of my routine now. It doesn’t smell but it is yucky.

I just came down with a kidney infection I swear was caused by Tamoxifen - it also effects your whole genitourinary tract - Mine went so fast from a UTI to a kidney infection with little to no warning. Was hospitalized overnight with an IV of antibiotics.

I Plan on sticking with it. Do your research - I have a friend who is doing all alternative remedies and has made 5 years. She lost a ton of weight she is at a low BMI and exercises at least 2-3 hours a day 5 days a week. She is on a clean Mediterranean diet.

I also have another friend who is on the fence who is researching her choices.

The beauty about this is that we have options and you have to do what is best for you.

I hope I didn’t scare you, but these are my side effects. Good luck with your choice and whatever decision you make will be the best for you! Many hugs!

Anonymous

I too understand the pressure from doctors about "having" to endure certain treatments. I am questioning many of them now and wish I had know all of the facts before I went through them. I am now playing catch up on trying to have a normal life.

But here's the good thing! Just try it! You read so many horror stories but you won't know how it will effect you until you try it. Then if you have adverse reactions you can then think about if you want to continue or see if you can manage symptoms. I have absolutely none. You won't know until you try.

Cancer has so many questions and choices. Here's one you don't have to make until there are issues, if there are any at all.

mharte88

Hello, I joined this Group last night as I did read a lady was asking how important "these little pills are" I am 73 and had a lumpectomy on 4 July 2018. Everyone involved in the process was amazing. I had an estrogen fed tumour. I had the surgery and came out with clear margins and no spread to the lymph nodes.

Despite my daughters begging me not to, I read up about Radio Therapy, and was horrified to discover its Radiation, this pretty word Radio I have always understood to mean some sort of rays. So I fought against it with my surgeon, but she pleaded with me to go ahead with it. You see they kind of indicate its "your choice" - no-one will make you do anything you are firmly set against. Despite all mu arguments regarding the side effects, the need to be fully independant throughout the treatment and all the side affects listed, I relented. Mainly as they said you will never have peace of mind, on self examination of your breast, going forward, as the whole procedure will change the feel of your breast and it may never go back to the breast you knew.

The Anastrozole was casually mentioned. Not a word about the side affects of these little babies. You need to take them for 5 years, and the list of side affects was so long, I almost expected to see the word "cancer" at the end of the page.I think its wrong for me to list it all here.but suffice to say, back comes the period symptoms, for me that will include migraines. The HRT was stopped suddenly just before my operation, I was still on HRT for the migraines. It was like coming off crack!! Not that I have ever taken crack, but the withdrawals I went through, stopping so suddenly were horrendous.

So I decided, having taken one Anastrozolw, getting up the next day, feeling sick, weak and unbelievably tired, it was over kill. I take full responsibility that this may occur again. But at the very beginning they pounced on the HRT and laid the cancer completely on still taking it. So as I stopped, had the tumour removed, why would it return? I went along with Radiotherapy, as the pressure from my girls was too much for me to stand up to. They seemed to feel, if I didn't have it, it would surely return? Its such an emotional subject, their father died of secondary cancer to the brain just before he was 50. So I knew I had to tread carefully with regard to making "common sense" decisions.

So I made a decision, all on my own - not taking Anastrozole. If the upshot of this decision is the cancer returns - I will go for a bi-lateral masectomy. I have not said anything to the "team", as I know what they will try and do. But this is the only decision I have been able to make for myself. The woman who are on Tamaxofin have all said they "tolerate" it. No one has said I was lucky, I sailed through five years of this pill. When I read your thread, I was really relieved, as I do not like making a decisiion that I cannot share with my girls and the medical team. But I think if I am prepared to have a bi-lateral procedure, then I should be left alone in my decision not to take Anastrozole.

I live on my own now, for 12 years, and have never ever relied on my girls to run errands or anything like that. Pop in every week, or phone every day, as they have their own lives. Should I have taken these pills, I know I would not have that.

Sorry this was not meant to be so long, but our stories in this regard, need explaining. I have two more weeks of radiotherapy and already I have to lie down, at the oddest times I feel so tired. I know there is more to come, but at least,, with this, we don't lose our hair. Something no woman wants, I am certain of that. They did not offer booster sessions, on account of my age. Having to do respitory gating because if this being a left sided tumour is really scary (I think) - so 15 fractions is more than enough for me. I don't even know how much radiation constitutes a fraction. I do know that at the Planning appointment the CT Scan delivers 200 times more than one single X-ray.

Hope to hear from you. Best wishes for everything

Grace

Bosombuddy101

Mharte,

At your age, I'm not sure why your doctor pushed radiation therapy as I've read studies that it can be skipped for patients over 70 years of age.

Tasothi, as for hormonal therapy, I decided to forego it and opted instead for two tablespoons of freshly ground flax seed per day and a few other supplements such as grapeseed extract, sulforaphane and a few others I can't recall at this moment. It's been a year since my bilateral mastectomy and I feel great! No pains, no brain fog, no worries about uterine cancer, heart disease, weight gain and other nasty side effects from hormonal therapy.

Bosombuddy101

Tasothi, I just want to clarify that I'm not saying this is what you or anyone else should do. This is my personal decision. Every cancer is different and I have a very rare favorable type of cancer and I felt it was safe to try alternative therapies.

buttonsmachine

Tasothi, I'm just bouncing off what bosombuddy said. She makes an exellent point that some of us are at much higher risk for recurrence than others.

I've met two women who had lower risk BC, had double mastectomies, and did no other treatment. Both are doing well now. You will have more information about your unique risk after surgery, and hopefully the final pathology report can help inform your decision.

I'm the opposite of bosombuddy in the sense that my cancer is extremely high risk. For me it's not a question of what treatment I can forgo, it's a question of even if I throw everything at it, will it still be enough to save my life? I'm going to give it my all to stay on hormone therapy, but I do believe there is a point where quality of life needs to take priority. That point is different for everyone.

BC forces us to make many hard decisions. We are all supporting you and wishing you the best.

mharte88

Dear Bosombuddy

Thank you so much for your reply. It is nice to get a positive reply too. I know the decision is mine alone, but I do feel really alone in that I cannot share it with my girls. I also think common sense goes a long way to avoiding over treatment after surgery. Without wishing to sound flippant, of course, If you remove the reason you fell prey to the cancer, I cannot understand why it doesn't end there. Or more to the point, if it returns you are fully aware of what lies ahead for you and I am.

My adoptive mother had a masectomy when I was 9 years old. The trauma of that and her total change in personality to a women who you never knew what would set her off, the ensuing violent outbursts and her total refusal to acknowledge I had any kind of a chest, left me hating my chest, always wearing too tight a bra to flatten them so it would seem as though I was about a 30B! Mentally I began to dread developing cancer from the age of 50, (they age she was). At 70 i was beginning to breath a sigh of relief, when out from nowhere came the dreaded day I found the lump, about 3cm, presenting in the middle of my chest and very much on the surface. It was like one day it wasn't there and the next day it was.

May be a bi-lateral without reconstruction, means a different thing to me, as opposed to a "normal" person. I am now a 34E and had I had the money would have gone for a breast reduction down to a 32C.

I have since read, women who cannot tolerate the estrogen blocking medicaton, just stop. So I have gone the whole nine yards and never started. I will probably own up to it if pushed, but I will not be pressured into it, as I have been the radiation. I am only on 4 fractions so have two more weeks left, with 8 more fractions to go. I gather side effects tend to kick in after the treatment, rather than during. I have found a zombie like tiredness, where I have to lie down for an hour, but do not sleep during that time. Also its a bit more difficult to concentrate, which at this point in time is proving annoying, as one of my daughters is breaking up with her husband and I am involved with supporting her through looking out for her children, one is 13 and the other is 9. So I need to think clearly.

Thank you again for replying.

Grace

dtad

tasothi...I refused anti hormone therapy from the start for many reasons. I chose to lower my estrogen levels naturally. I lost 30 pounds, try to exercise daily and take DIM in leu of an aromatase inhibitor. I' not sure what my decision would be had I been younger or was a different stage. Sorry you feel judged but I can tell you this is a very controversial subject on this forum and usually not received well. IMO its a very personal decision and should be respected just like any other treatment decision. You might do better posting on the alternative thread. The bottom line is almost 50 percent of us do not complete the recommended 5 years due to SEs. I do not understand how that ca be considered an effective treatment. Good luck and keep us posted.

Bosombuddy101

Thank-you for the support ---- it means a lot to me! I agree, it is such a personal decision and it's not fair to be judged or made to feel guilty for not going along with the current "standard of care" regardless of breast cancer characteristics or aggressiveness.

Bosombuddy101

Oh, in regards to diet, I gave up meat of all types and rarely eat fish. I've been doing this ever since my diagnosis and I feel great! I don't believe in the raw food diet, it's not something I could tolerate. So... I guess you could say I've become an earthy, crunchy momma. ;0)

KatyK

Such difficult treatment decisions to make - you need a crystal ball. Obviously we are all different and may or may not have SE with tamoxifen or other medications. I was initially diagnosed at age 48 and I had a lumpectomy and radiation. My oncotype score was low, 6,so no chemotherapy. Tamoxifen was my only option at the time due to being pre-menopausal. I could not tolerate it - terrible SE, especially affecting my mental state, immediate weird weight gain, I felt like I was a tick and retaining water, and vaginal bleeding. Five years was going to be hell so I did not take tamoxifen. My weight was good, exercise a lot, took DIM, etc and sadly had a recurrence last year to bones and lungs. What I wish I knew at the time was that for women who have a hard time with tamoxifen like me it can be helpful to start very slowly and give your body time to adjust or after menopause perhaps a different AI may have been helpful. Regretfully there are times no matter what we do cancer does what it wants. You can get lots of help and support here but of course the decision on any treatment is ultimately yours. I wish you lots of luck and good wishes.

Bosombuddy101

Katy, I'm so sorry about your progression. This stinks so bad! The real question should be, why haven't they discovered the cure? The next cancer epidemic will be glioblastoma from widespread cell phone use and eventually humanity will die off.