Hello,
A bit of background - I was diagnosed at end of September at the age of 43 with stage 2 invasive ductal breast cancer. I am triple positive. I had 6 rounds of chemo completed in March and then a mastectomy in April. I am continuing my phesgo every 3 weeks for another 12 months.
I have been told I also need to start hormone therapy and have been given option of tamoxifen or a combo of an injection and tablets (zoladex and letrozole) or a third option of ovary removal but that is not their preferred option as it is non reversible.
I have read up on these drugs and the side effects and having spoken to people who took them I am pretty resolute that I do not want to take them. I have been told I would only get a 3% increase in survival from taking them and to me the side effects just aren’t worth the benefit.
I really struggled with chemo and had high sensitivity to the drugs even when they were changed. I had awful chemo acne, I put on half a stone (thankfully lost it again after finishing), I had and continue to have terrible bone and joint pains in my legs and continue to have lots of hot flushes, night sweats, insomnia.
Because of this I worry I will get these side effects from the hormone therapy and the thought of dealing with this for another 8 years is just soul destroying especially with only a 3% benefit and to be honest I just want my life back while I’m still ‘young’ enough.
I think I’ve made up my mind but the oncologist wants me to think more about it. So I’m just interested in others experiences of any of the hormone therapies. Please share your pros and cons of whatever option you had or if you didn’t go ahead with any how did/do you find that?
Hello,
I had bilateral breast cancer and had a double mastectomy, no recon.
I’m taking letrozole for five years to be followed by tamoxifen for five - I plan to stay on letrozole for the full 10 years (my consultant said he’d be happy for me to stay on for 8, and I said we can discuss down the line).
I had a few side effects in the first few months - joint aching, tiredness, nausea but that’s fine now nine months on. People talked about weight gain but I’ve lost 3st since starting - I gave up alcohol and exercise regularly so sure that helped.
I have two children, im 53, and I am willing to put up with most side effects so far for even the smallest benefit (I don’t know my percentage benefit) but that’s just me and I know other people feel differently. I know I have tried everything and that’s all I can do.
Hormone therapy seems to be a topic which evokes some strong views both from people who take it and those who have decided against, or not been able to due to side effects, so I imagine you will get plenty of responses. I can only comment on my own experience of tamoxifen. I am 47 and have been taking it for 11 months. Apart from a couple of very minor niggles in the first few weeks I have no issues with it at all. Apart from actually taking the pill I wouldn’t know I was on it.
I often see comments about the percentage benefit of hormone therapy and this seeming small so maybe not worth it. My increase in survival rate according to Predict is 3% but I view it a different way and focus on the overall. I know I like the sound of a 91% chance much more than I do 88%, but that’s just me.
Only you can make the decision what is right for you. x
Firstly I wanted to signpost you to a HER2+ buddies as you are tripled positive and on Phesgo. It’s a really friendly and supportive bunch.
Hormone therapy can be quite emotive on the forum. We are all individuals and react differently. Some people can have no side effects, some have a few and other can have debilitating side effects that they no longer continue.
The NHS predict gives a % of how much it can benefit you. I have been on Letrozole for a year with horrible side effects but was told that because I was on Herceptin, they couldn’t be sure if it was the AIs or Herceptin causing the issues. 3 months after finishing Herceptin the Sid effects continued and I swapped to Exemestane. This for me is less side effects. I was bilateral with two separate tumours, one in each boob at the same time, which is rarer, so for me staying on them is something I’m trying to do. I do however take about 4 different medications to offset side effects, such as hot surges/flashes, vaginal dryness and aches and pains, to name just a few.
I’m 56 now diagnosed at 54.
I would also suggest using the search icon at the top of the page to see what others have said. I did a post on Letrozole with vaginal dryness and Fezolinetant ( a drug for hot flushes).
Hi I was on letrazole for three years and have just finished seven years of tamoxifen. The only side effects I have had are hot flushes, and they were not bad. Everyone is different and responds to medication differently. The only way to find out if you are going to get side effects is by taking the medication. It is your decision as only you know what is right for you. Good luck whatever path you choose to follow.
Hi @worried1 I do so feel for you, you have been through a difficult time with active treatment and now face the prospect of further physical challenges - perhaps. I am another for whom Leteozole has not presented that much of a problem. I have been taking it for two and a half years out of five. The early side effects of vaginal dryness and brain fog dissipated after a few months and, whilst I’d rather not take it, any niggle that might be attributable to it, hasn’t been so drastic that I’m prepared to risk an early return of cancer. There is no denying that the side effects are considerably worse for many women, no doubt some of whom will be along to give you their testimony too. All I would say is, logic would dictate trying them to see how they affect you before dismissing them out of hand but I do understand that when emotion runs high and tiredness sets in, logic goes out of the window. These estimates of efficacy were described to me by my oncologist as a wet finger in the air rather than some sort of guarantee so, if you reject endocrine treatment, which many do, then you just have to be sure you would be able to accept it if you did have an early recurrence. It is a very personal decision and one that many have struggled with. Whatever you decide to do, I wish you luck in finding your equilibrium and confidence in your chosen way forward.
I was on Tamoxifen for 3 months. Side effects were minor, a bit of one and the other, non severe. Moved Zoladex and Exemestane, with Zoledronic infusions, as oncologist felt it was a better solution for my circumstances. That was about 5 months ago. Only side effects so far are hot flushes, which I had several each night to begin, but now only a couple and normally before I’m ready to sleep. Advantages - no periods, and the menstrual headaches have gone.
Not everyone has an easy ride, so to speak. But being hormone positive, it is a very effective way to prevent recurrence. In my case, the benefits are important and worth the effort.
You can always try, see how you get on. If you’re one of the unfortunates who get bad side effects, you can always reassess the situation with your doctor.
I was 36, triple postive. Had chemo radiotherapy , herceptin and 5 years of tamoxifen. I had the odd hot flush, but nothing major. I didn’t want to come off it, but years ago 5 years was the maximum duration of treatment. I was diagnosed 19 years ago . Best wishes.
Hi, I had bone pain after chemo and I feel taking vitamin D has improved this, in fact despite taking letrozole for 2 years following chemo bone pain is minimal. I have not put on weight, but don’t drink alcohol and keep active. I do get occasional hot flushes. Vaginal symptoms can be solved by topical oestrogen creams. I initially had nausea but that disappeared after2-3 months. Your oncologist job is to keep you cancer free and as he has the education and experience and I have taken his advice.
I am presently 5 months from completing 2 years of Abemaciclib so taking letrozole is insignificant in comparison, although I’m aware for some women this drug causes significant side effects but thankfully I’m not one of them. I wish you well with your decision.
I think to be sure of the benefit, I’d put my details into the nhs predict tool, rather than going off what someone says - you’ll probably get the same result tbf as it’s what oncologists use, but seeing is believing.
There might be a higher benefit from zoladex and letrozole too to consider.
Bear in mind that the 3 % improvement is based on mortality rate up to 10 or 15 years, and there will be people living beyond that statistic, but who have had a recurrance, or even mets. The chances of that, could be higher, but there are not reliable stats on that. I am assuming that you don’t want to risk a recurrance either?
Its a tricky situation that I’ve looked into lots regarding Her2 and ER positivity as I was, but PR negative. There is research out there that claims that tumour cells, with both receptors, can use one or the other route to grow, so optimum would be to treat both her 2 and the ER at the same time. The cells capability to do this is called ‘crosstalk’ - you can look this up.
Whether your lymph nodes were clear and tumour grade is a risk to consider, as its about dealing with any possible stray cells, the likelihood of that is crucial.
Personally, I think, a suck it and see approach is reasonable. Try first, as you dont know how you’ll feel, everyone reacts differently to them or not at all. You can always reconsider if you find they are making your life a misery.
To not try them at all is reacting to emotion rather than logic. You are still young, so have a lot of years to get through, hopefully cancer free.
Going by your username, I’m guessing you are a worrier, hence you are wanting to avoid side-effects that may, or may not happen to you. I can tell you though, that deciding not to take them, causes its own worries too, so its likely you will worry all the more, that it could reoccur. That worry never leaves, but is magnified when opting out of treatment. I respect that its your choice, just have all the facts and your eyes open and make a reasoned decision.
I’m 58 and three years into hormone therapy after being diagnosed with IDC. After my mastectomy I started with 2 years of Tamoxifen then switched to Letrozole. Only another 2 years to go for me and I can honestly say it’s been fine. In actual fact I’m worried about stopping, and am going to ask if I can take it for longer in two years time. I think of it as my ‘safety net’.
I know some others report that they’ve stopped taking AI’s because they have made their lives intolerable with side affects. That must be very difficult for them but I think it’s fair to say that we only hear of people’s bad experiences when an awful lot of people are just quietly taking them and doing well.
Yes, there are some side affects, especially early on, all well documented, but as your system adapts after a few months they can lessen a great deal. Many people find, (including myself), that one brand suits better than others and I have no idea why but it’s definitely a thing. I always stick to ‘accord’ and it’s been fine.
I know people get het up about very small percentages of benefit, but the fact remains there is benefit otherwise oncologists wouldn’t prescribe them. Don’t fear taking them. Give them a try and stick with it if you can. In all probability you will be fine.
Hi worried1
My decision not to take Tamoxifen was mainly due to my age, 76 & like you, the extra 3% it gave of not recurring wasn’t enough for me to risk it.
I know it would have been sensible to give it a try, but I couldn’t trust the things it might be doing to the rest of my body & I wanted to fill fit & healthy.
I have just had my first mammogram, which thankfully was clear. Have I made the right decision, only time will tell, but I am fit & healthy at the moment so I will be thankful for that.
All the best.
Hey - I’m also triple positive, had chemo, mastectomy and have 3 Phesgo left. I took tamoxifen for 6 weeks and felt awful - I couldn’t continue. I had constant migraines & awful anxiety. The BC nurses were super keen for me to carry on but my oncologist said he was happy for me not to take any hormone therapy as my benefit was so low (2%). My ER+ score was only 3 - the lowest it can be and positive. However I’m 44 with two primary school aged children so decided to give an alternative a go a at least I’ll know I gave it all a shot. I’ve just started zoladex and will start exemestane in a few weeks. So far so good. A few hot flushes but that’s it. I think it’s trial and error, give it a go.
Hi @worried1
It’s good to get pros and cons. Granted you won’t know for sure without trying but at the end of the day you know your body and have to do what you feel is best as you have to deal with whatever may or may not happen.
My story in case it helps-first diagnosed at 38 with ER+. Did chemo, rads and 4 months of letrozole and zoladex. I had horrendous side effects to the point I ended up suicidal so stopped immediately and was left to see what happened.
The fear of recurrence was definitely there but tried to not let it rule my life, which it didn’t.
Fast forward to when I was 41 and I had a local recurrence resulting in a mastectomy and the oncologist wanted me to try hormone therapy again but agreed to try me on tamoxifen instead to see if I coped better with that. I am still on it now just over 4 months in and don’t have a great quality of life. I am always exhausted, knees hurt, anxiety and very low mood. I’m not suicidal so far so that is a bonus but feel like a hermit as just don’t have the energy for anything except the essentials of life.
I am currently waiting to have a risk reducing second mastectomy in the hope that will reduce it some more. I have to come off the tamoxifen to have the surgery anyway so will use that time to see how I am off of it compared to what I am like on it. I will then make my decision about whether to resume it or not but I suspect I won’t be resuming it but time will tell for definite either way.
Do I regret stopping the letrozole? Not at all, I’m sure I wouldn’t still be here now if I had continued.
Do I berate myself for getting a recurrence? Not at all, I wonder if not continuing the letrozole added to my recurrence but no one can 100% know that. After all, I also have a strong family history of breast cancer as well.
Do I worry about getting another recurrence?
Of course, who doesn’t!! Lets face it, you can get a recurrence even on these meds but I try not to let it consume me and take it a day at a time.
I don’t know if any of this is any help or not but it’s another perspective to look at it from and I hope you can make an as informed decision as you can.
Remember, whatever you decide, we are all here to support you no matter what though.
(Sorry for the long post but a big choice for you to make)
As one lady said in her reply - this subject is well talked about on the forum and she is right - everyones journey is different. So on that basis I don’t think you are going to know till you try.
There are a number of options so even if you don’t get on with the first option, there are other things to try.
I’m not on the happy side of the fence with Letrazole to be honest, but I’ve asked for an appt to discuss changing.
You are in charge here ultimately and you could cope well, so perhaps give it a try first.
Much love and strength
Hi worried1, you sound like you’ve probably made your mind up.
My risk of recurrence was 1-2% and the benefit for me of Tamoxifen was only 0.4% so was an even easier decision for me to make plus I wanted to stay on my HRT for quality of life. Not all the side effects are reversible either so I’m not sure it’s as simple as saying try it you might be ok.
I did read a book that really helped me feel comfortable with my decision and tbh I don’t even think about it as it was just a decision I made last year and if it comes back it comes back, but it’s ultimately my choice. I know what I’m like without HRT and that’s not a life I’m prepared to live as it wouldn’t be living (for me).
Anyway, the book is Oestrogen Matters by Avrum Bluming and I managed to get a copy out of my local library. He’s an oncologist and breast cancer surgeon whose wife had BC. It’s very informative and well researched and it might help you feel more comfortable with your decision. Best of luck!
Also, there’s another thread on here about no hormone therapy - as always there are two sides to every discussion!
Hi Josie2, can you tell me how you managed to get on HRT. Everytime I mention going back on HRT after BC I get a resounding NOOOOOO from everyone. Many thanks x
icon at the top of the page to see what others have said. I did a post on Letrozole with vaginal dryness and Fezolinetant ( a drug for hot flushes).