Not take any hormone therapy medication…
Rdc2022
Member Posts: 20 ✭
I’ve just had a six week medication holiday as suggested by my oncologist as Anastrozole wasn’t agreeing with me; it was affecting my mood and mobility. I often felt stiff and achy and lots of other things.
Anyway, I wrote her a long email explaining how I felt off the medication and what I hoped for going forward in terms of quality of life….
I ought to stress that I had stage one breast cancer with no spread to lymph nodes and the cells were grade one: my onc says my risk of the cancer returning is very low.
She has suggested that I now go on Taximofen but she also gave me the option of not taking any medication at all.
I’d love to know whether this is now becoming more commonplace and whether anyone has been brave enough to go ahead with this?
She always says « we recommend », so I presume this is peer reviewed? I didn’t have time unfortunately to ask her for stats or studies backing this approach…
I will take the medication because I’d rather play it safe (I was only diagnosed in early 2022) but I must admit I will be keeping her other option at the back of my mind (she also said we could reduce the dosage after another review).
We are all different I know and I am aware this is a general forum, but I’m intrigued to know if anyone has been given the option of not taking hormone therapy medication and has done so.
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Comments
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@Rdc2022 you are not the only one who has refused extra many medications for whatever reason and many are still with us many years on. The fear factor, or having medicos on a pedestal, often prevents us making our own decisions. Go by your own gut feeling but be sure you won't have any regrets.1
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Thanks for your comment @June1952. I’d need a lot more clinical information before I would make that kind of decision. My main question is how common is it for oncologists to recommend no medication as an option? I don’t put medicos on a pedestal (I often disagree with my GP) but it’s harrowing enough going through a breast cancer diagnosis once, not sure I’d want to revisit it.2
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Your oncologist is following a proven path given the specific nature of your cancer. There is no guarantee unfortunately with almost any treatment - just research stats that may or may not apply in your specific case, given age, general health, lifestyle and sheer luck. Unfortunately it comes down to your choice, not that you know any better than your oncologist but it’s your body and your oncologist probably can’t do other than offer you options.
It’s eminently sensible to try the new medication and see if you tolerate it better, before making any further decisions. This is tricky stuff. Best wishes for a good outcome.2 -
Hello @Afraser… thanks for your wise words and I agree. I’m not playing Russian roulette… as you say, it’s tricky stuff. I just find it interesting that my oncologist has gone from telling me soon after I met her that I’d be on medication for 10-15 years to now saying I could choose to not take it. It’s a little perplexing.1
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Hi - read your post with much interest. I have just updated my own Post regarding Rash I had with Arimidex. Stats are helpful to some extent and I made the choice not to continue with the tablets or an alternative. Informed that my type of cancer (early detected) after my 5 intensive days of radiation therapy had 2.3% chance of return if I remained on an anti-cancer drug regime, but given extreme side effect, by not taking them it was 3.1% !!!!! A statistical margin of 0.8%!!! Oncologist agreed with me. Food for thought and it is not always an easy decision whether to try a different medication.1
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Hi @Rdc2022 ... It is interesting that your Onc has suggested Tamoxifen ... How old are you? Have you gone thru Menopause already? I thought Tamoxifen was mainly for pre menopausal women? (Tamoxifen is the only one I HAVEN'T tried! I ended up on Anastrozole after not enjoying Letrozole and Exemestane - and my side effects are minimal - been on it for 4 years now!)
Are you HAPPY with your Onc? My first one was useless, so I swapped and I am very happy with my current Onc. You could get a 2nd opinion .... where abouts do you live (state/town) ... we may have members nearby who could point you to another onc in the area (via PM) .... You can add your location to your Profile.
What sort of BC did you have? Was it 'invasive'? Did your Onc give you the % of likely chance of recurrence? The lower the %, obviously, the better. Stage 1/Grade 1 was a good result to start off with!! .... But as @Afraser iindicated - being on OR off the AIs is no guarantee of not having a recurrence
And they still don't know WHY up to 30% of those who've had successful surgery/rads/chemo/tablets - goes on to develop Mets. It is an area that needs massive investigation - examining the original breast tissue & then the Mets tissue - to try and find a connection - be it a gene or a virus ..... they just don't know!!!
The GOOD news tho, is that 70% DO NOT go on to develop Mets - and THAT is the bit too keep 'in mind'!!
Often it is the 'first AI' that you try, that gives the worst side effects .... so definitely worth considering a change in Meds & giving it at least 6 months to see how it affects you. Not everyone gets side effects on all of them.
Take care & all the best with your decision making xx1 -
Here's a link to give you confidence with Tamoxifen.
It is beneficial for whatever stage
https://www.bcna.org.au/resource-hub/articles/bone-health/#:~:text=Tamoxifen blocks the effect of,reduces the risk of osteoporosis.
@arpie comment above rings true, the first AI that you try - side effects1 -
Hello @iserbrown thank you, I’ve heard quite a lot about Taximofen and I’m confortable with taking it.1
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If the advice has been to take AI's. I would continue. However I would consider giving them up, only after a good try at each one.1
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Hi,
after speaking with now quite a few women who have been taking these drugs, I have decided not to. this is because 2 out of 5 had cell changes in their uteruses and all of them had no sex life. ( 2 having uterus removed)
I have had invasive lobular carcinoma grade 3 ( due to the length of one of the cell chains.)
I had 2 surgeries, 1 being a mastectomy, the second a redo as they found a cell chain, growing into my body, now 6 weeks of radiation, which was taken too far and there was discussion that I may lost the integrity of the reconstructed breast as I was absolutely BBQéd. Tomorrow is 5 months of this, and apart from the sugeries I have been working.
I have been off the radiation for a week, and I and still having blisters appear and I am on Schedule 8 drugs for the pain...( but work thinks it's a bit of sunburn...) ( still working, and cut down to 4 days a week during treatment as the fatigue was killing me. ( working from home now as I was going to the hospital every day..).
So I have decided no more, I have had enough, and how do they know I even have any hormones left at 62, and I started menopause ant 43? There haven't been any hormone tests and I have a script for something..Letrozol I think...
This is copied from the Cancer Council website Side effects – Aromatase inhibitors can cause thinning and weakening of the bones (osteoporosis). Your bone health will be monitored during treatment and you may be prescribed a drug to protect your bones. Consider seeing a physiotherapist or exercise physiologist for an exercise plan. Other side effects may include joint and muscle pain, vaginal dryness, low mood, hot flushes and weight gain. If you have arthritis, aromatase inhibitors may worsen joint stiffness and pain. Exercise or medicines from your doctor may help.
The thing is these are not side effects, they are effects. There is cause ( the drug) the effects are the symptoms. All of which I already have.. imagine how I will feel... yet I have been told I can use hormone creme is my vagina ??? which by the way is already bleeding through the tissues when I wipe it.
Please bear in mind this is only my opinon, I am not medically trained. But really think there is a one size fits all approach to the treatment. Which I don't agree with as we are all so different. ( I have auto immune diseases, which have now been linked to some cancer...)
Anyway, thats me...
Hope it assits with a bit of info as well.
Lee
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Have you had a good talk to your Oncologist re these drugs?
I think I've heard Tamoxifin has more Uterine issues as you first described.
I don't think Leterazole is the same that way.
But your quote from Cancer Council is quite correct, and those 'effects' are individual.
I totally understand, it is your choice. Have you spoken to your Oncologist about not trying the Letrazole.
Ask about Hormone tests. I've been told Estrogen doesn't only come from the ovaries, it is also in Fat tissue.
Of course ultimately, you say when.2 -
Sounds like you've had a hard time of it @LeeH - make sure you continue moisturising your rads area - as it will continue to be 'warm' and 'cook' for at least another week or two (even longer, as you had lots of sessions.) And definitely keep that area away from direct sun for some months.
Your Onc should have given you the '% likelihood' of the cancer returning re the taking of AIs (hormone suppressing meds) - so that you can make a more informed decision re the AIs. My own percentage was pretty low ..... but I still didn't want to take 'the chance', so have been on them for 5 years, with 2 changes. Anastrozole finally working well for me, with minimal side effects after 6 months on Letrozole and exemestane, which didn't suit me! It is about the 'what ifs', I guess.
Interesting that you were told you can take your hormone (?HRT?) cream directly in your vagina ... that's where I was putting mine (as atrophy was my main menopause complaint - I also started in my early 40s) - but the testosterone content had caused changes in my breasts resulting in Breastscreen call backs & I was told to go off it altogether. 15 years later, I was diagnosed with ILC at age 65.
Ultimately, it is YOUR decision whether to continue with treatment ... take care and all the best xx1 -
Ultimately this is your choice and everyone understands the issues of balancing possible protection from cancer with effects that limit other parts of your life. There is however a simple test which is to try the medication and see how you go. I did ten years on Letrozole. Yes, my bone density suffered (still no
osteoporosis) but how much was due to the medication and how much to
my own ageing is hard to quantify. Happily it was excellent when I started. I had vaginal atrophy and hormonal cream helped a lot (that too was possibly compounded by age). I did not have bone pain, joint pain, flushes, fatigue, low mood or weight gain. I weighed up the costs/benefits year by year and am happy I did. But if I had felt those effects were affecting my life, relationship, work, ability to enjoy myself (travel and have fun!) I could always stop. We are all different and our reactions to medications can be very different too. Best wishes whatever you choose.3
