Anyone decide not to go through hormone therapy after surgery and radiation?
Stage 1, Grade 2, 1.3 cm, lymph nodes negative, low oncotype score 15, right side, radiation treatment, EP+, HER2-
There were too many side effects from hormone therapy and I just wasn’t willing to go through with it.
They say that 40% effectiveness of these drugs to prevent reoccurrence.
I am still skeptical.
Your thoughts?
Been taking hormones seven years got my seventh annual mammogram tomorrow. I take them because they are very effective at not just preventing recurrence ( which can be treated) but secondary breast cancer ( which is incurable) . Why take that chance ? I have another three years to go and had no side effects to speak of
Hi @rosek I haven’t started hormone therpay yet as my onco score was high (32) so chemo first. My thoughts on it at the moment are that I’ll do anything to stop this coming back. I have the same type as you, ER+ HER2- and honestly if I could start the tablets now I would. My body clearly can’t be trusted any longer with estrogen haha
Maybe try it first. No one will say you can’t stop taking it if you decide it’s not working for you. And then atleast you know you gave it a go 
I always told myself I would do everything recommended in my treatment plan and that included hormone therapy. I have been taking tamoxifen for a year and a half and have no adverse effects at all so maybe easy for me to say, but in my view even if the reduction in risk is only tiny then it’s absolutely worth it. But, the only person who can decide whether to take it or not is the person themselves. x
I stopped it after a few months due to side effects but I was a grade 1:stage 1 node negative Er/ PR + 10mm tubular which rarely spreads outside of the breast . My surgeon had said from the off that if I didn’t get on with it it would be reasonable for me to stop , and my attitude was that I would at least give it a go. My past medical history of retinal vein occlusions made me unsuitable for the first drug which I was prescribed which was Tamoxifen .I also have a family history of auto immune problems MSK problems and osteoporosis .
The Oncologist said to try Exemestane if I didn’t get on with Anastrozole - she did seem pretty philosophical when I said I might not take the full course but she did say “ you’re young” by which I think she meant plenty of time for me to have recurrence ( I was 56 at the time ) . I kind of stopped it suddenly in a fit of pique really then spent months agonising about it considering whether to restart or not before finally deciding against it . I’ve been off it three and a half years and clear so far but who knows . It’s not a decision to be taken lightly and you need to make sure you have as much information as you can and that you can live with your decision if you decide not to go ahead with it . You could always give it a go and see - you should get a Dexa Scan after a few months if they put you on an AI which might tell you if it’s affecting your bones and as you already have osteoporosis they may want a baseline one before starting. If they prescribed Tamoxifen then I have heard that it can strengthen the bones but your BCN should be able to go through stuff like that with you. Best of luck whatever you decide xx
For my Penny’s worth…I have to echo @Susanmanchester
I consider the statistics, most ER+ cancers that do recur are around the 10 year mark as a broad guide. Standard protocol for hormone therapy is 5 to 10 years. I don’t see it as a conincidence….hormone therapy ends, and for some (not all), it gives the ER+ cancer the opportunity to return or regrow.
Unfortunately we never know with absolute certainty whether our choices will be successful, but for me there seems a lot of research to support the benefit of hormone therapy.
Have you thought about giving it a try first? You can always stop if you are having difficulties with it (I found the first 6 mths a bit up and down, much more settled now at 18 mths)
I had grade 1 cancer in 2003 when I got my first breast cancer diagnosis- a very rare kind of breast cancer - glycogen rich clear cell ductal cancer. I was 47 when I found my lump. I had dense breast tissue. I had radiotherapy and decided not to take tamoxifen. My tumour was 2 cm but with dcis round it. I had breast conservation.
19 years later I got a different breast cancer in the same breast. This time they did genetic testing in the US as well as grade score. It was grade 2, 2.4 cm and of no special type so different from number one diagnosis. I was also a lot older ie 67.
At diagnosis 1 I was working I had to pay for prescriptions and I wanted to pay off my mortgage. I did this in record time by getting better jobs and using bonuses to pay it off early.
By diagnosis 2 I was mortgage free but I had a bigger tumour and a metastatic intramammary lymph node.
Not many people have lymph nodes in the breast but I do! They couldn’t find any lymph nodes in my arm pit so either they all went at my previous surgery or weren’t there anyway.
My oncotype score was 14 so quite low. I have been taking letrozole this time as now well past the menopause which I wasn’t the first time.
The problem I have is my crystal ball isn’t working. I have got to die of something although other family members are long lived (Dad to 94 and mum to 97)
I would rather have quality over quantity as both of them got Alzheimer’s and mum lingered on for a long time in a care home.
The care is awful and incredibly expensive so I am not sure it’s worth living longer in very bad health and being left alone in a bed you can’t get out of, being turned to stop bed sores.
Old age is not what it’s cracked up to be unless you keep your marbles!
Seagulls
I was taking letrozole for three and and a half years side effects got me down and raised my colestrol levels, put me on statins muscle cramps were awful. Took myself off them and now feel like my old self. I was left with lymphodemia in my left breast after removal of two lymphnodes. I was stage I, letrozole for 5 years and now living with lymphodemia, I’m 72 with 3 grandchildren under 5 whom I help to look after, I’m in agreement quality of life over quantity my husband is on his journey with alezimers, we none of us know what is around the corner.
I’m struggling with this one too. I had several sites in my boobs, but only one lymph node affected that they found. Oncotype was 12. I’m about to start radiotherapy soon. The list of the drugs and their side effects for 10 years (as has been suggested) feels like it could rob me of all my good days in my 50s. My feeling at the moment is that I will try it but with an open mind to stopping if it’s just unbearable. I only just feel like I’ve started to feel human after my surgery. I know radio will take it out of me and then a long long stretch. At what point does this become over medication too?
I certainly didn’t hear 40% reduction - 4% was the figure I got and then told recurrence is often after the 10 years anyway! I know people are offering you the best chance but this feels like I might rather just feel like a human being for however long I have.
You might want to try it and see if you have side effects. At least you get free prescriptions now which I didn’t in 2004.
If you have breast conservation and ductal cancer as I had which included DCIS I think you need to consider future diagnosis.
My second breast cancer was not a recurrence- it was a new kind with a higher grade. They can never take away all breast cells but the more you have, the higher the risk.
It’s pretty low in your case so it depends how risk averse you are. I have never wanted to have a mastectomy but I had one this time but I had diep recon too at 67. I think I was practice for the surgeon who did the procedure.
It’s hard work recovering from it but it depends on how much you want to avoid false breasts such as knitted knockers - light weight and available in lots of colours I am told.
Seagulls
Radiotherapy is nothing like chemo it’s painless and 10 Minutes a session . You might be a bit tired but that’s it ,
Hormone blocker’s aren’t about local Recurrence ( RT sorts that ) but stopping distant secondaries which ultimately are incurable and will kill you
. Figures vary but 30
years ago the chances of 10-year survival
were 50/ 50, Now 80:90 Per cent . And thats largely down to Tamoxifen and AIs
It’s worth bearing in mind that the people who don’t have many side effects aren’t on here posting about it, they’re getting on with their lives. Generally people only post about side effects because they’re looking for support. I’ve been on Letrozol and Zoladex for 2 months and no problems bar slightly achy knees in the morning. You may as well try it cos the benefit of preventing reoccurrence is great. If you really don’t get on with it then you can always stop.
I am intending to try it but I think given the sheer number of panicky threads on here before starting there does seem to be an issue with how this is presented and how overwhelming it is for a lot of us. Spoke to my BCN today who explained that I wasn’t on all of the drugs for 10 years (somehow the oncologist failed to give me proper timelines) and helped a bit.
Of course I don’t want it to spread to my bones (and radio may not destroy everything) but I am a very fit and active person and without that my mental health will suffer badly. It is really frightening to think about being both on and off the drugs.
Hi rosek
Some similarities to you.
Diagnosed June 2022, aged 61, post-menopausal - lobular in left breast (plus ‘milder’ mucinous on the right). Both Grade 2 (found in just one lymph node from the left lobular, although it was more distant from tumour than the sentinel nodes), with extracapsular spread, so quite possibly escaped from there - only time will tell). Also lymphovascular spread in the breast tissue. E and P + (both 8), HER2-. So … highly hormone receptive !
Low DX oncotype score on both, so chemo not deemed of any benefit.
Self determined path:
Elective double mastectomy (without the aggro of reconstruction) to surgically cut risk as far as possible. Also elective axillary clearance, rather than just ‘blind’ radiotherapy (so path. lab. could actually poke around to search for any other affected nodes).
Yes to radiotherapy (5 of the stronger-dose sessions). That went well, although probably have late onset ‘slight’ breathlessness now.
I was strongly recommended to take an AI (Anastrozole). I was terrified of the “very rare” but very serious possible side effects (and I’m not talking about the common, but bad enough, side effects that get regularly discussed on this forum). Vacillated for 5 months. Decided to give it a go. Aching joints which got progressively worse, not better (to the point, at 10 months in, where I couldn’t even hold a dinner plate and had to climb the stairs on all fours), bad sleep disturbance, low mood, very noticeable hair thinning. I was offered the option to try other brands and other AIs BUT the problem is they all starve the body of virtually all oestrogen, which is a hormone that keeps SO many other functions ticking along nicely.
After 10 months, I decided quality of life (or actually, just a normal life) and freedom from my terror about the ‘very rare’ side effects (info on drugs available on the NICE website) was more precious to me.
Hormone therapy, in my case, gives me up to 3% less risk (than without it), initially. As time goes on, with lobular specifically, the risk increases, I think, to around 15%. That’s still not terrible odds. Knowing that AIs are not a magic silver bullet, and can only help lessen the chances by limiting the fuel for cancer cells, I also took that into consideration, as I weighed up everything.
NB I also went along with the bisphosphonates and had two infusions (to help protect against AI-caused osteoporosis, and to change the nature of bones to help keep cancer out of them). I stopped these when I stopped AIs, but they are VERY long-lasting (the changes that just my two infusions caused will last 5 years). All the time these changes last, your jaw bone is vulnerable to serious harm if any dental work is needed that disturbs the bone. Several dentists agonised for months on how to deal with my deeply broken tooth !
And a final thought (regarding lobular cancer specifically again) :
It is a very specific sub-type of breast cancer which grows very differently (spidery, hard-to-detect flat threads, often skipping the sentinel nodes, so even once a tumour is detected, affected nodes can be missed), which metastasizes in quite different organs and areas, and which has a very different biological make-up. Cancer drugs have been developed on the basis of ductal cancer data and research, practically exclusively. A tiny %age (or zero) funding goes towards lobular cancer research. So it may well be that all these clever drugs simply don’t touch lobular cancer anyway. There is currently a strong movement to try to get the government to fund urgently-needed targeted research and consequently, have properly tailored drugs developed. Of course, it will take many years for that medicine to catch up with all the attention that has been focused solely on ductal cancer.
Of course I live in fear of lobular returning years down the track; I think that’s a lifelong hangover for most of us. But going drug-free is the chance I’ve decided to take and I’ll keep my fingers crossed.
To be clear, I would NEVER encourage people one way or the other. It HAS to be each individual’s responsibility and the choice that sits right with them. This is MY story, and MY discoveries along the way. I am still angry that the NHS does not explain much at all; that I had to drill down myself to uncover the whole story (as far as I, a layman, am able.)
All the very best with making YOUR decision. It’s a tough one. x
I burnt badly when I had 15 sessions of radiotherapy so it isn’t always painless. It lasted quitea long time after the end of treatment and my skin has lots of telangtsia I think it is called which was caused by radiotherapy.
from internet:
“Radiotherapy-induced telangiectasia on the chest is a common long-term skin effect, presenting as small, red, spider-like blood vessels caused by the widening of capillaries in the treated area. This condition typically develops months to years after radiation therapy (such as for breast cancer) and is a form of chronic, often irreversible, radiation dermatitis.”
A skin specialist I saw about an itchy rash I had post mastectomy / diep surgery drew attention to te damage I had at a GP Surgery I went to in 2022. I had radiotherapy in 2004.
It didn’t stop me getting another kind of breast cancerin 2022 so it did notwork forme
Seagulls
Hi everyone, quick question for anyone who has been on Letrozole specifically but any other hormone drug. Do you still get cognitive brain fog??
I’m in Letrozole and do have finger arthritis but my main concern is the memory & cognitive issues. I’ve been it two years so far along with verzenio, but have hit the 2 year on Verzenio so they just took me oof it; from what I researched it’s the hormone drugs that can cause brain issues.
Have an appointment with oncologist next month and trying to decide if I should switch from Letrozole to another; if it will help with cognitive issues. Thanks
I tink my brain fog isdueto my age as I am now 70 1/2.
Theincidence of alzheimer’s increases exponentially after 65. I found this out when I looked at rates ofdisability fora job I had in social services planning in Redbridge years ago.
Seagulls
I’m in a similar place. Hair loss was tough part for me.
The oncotype score at 15 has shown you were able to avoid chemotherapy as the risk is low. However, the low risk status is validated specifically under the assumption that you are taking endocrine therapy. I hope that makes sense.
It’s hard to be positive about losing your hair although a friend of mine had hair she did not like (a bit bushy) and enjoyed having a wig she could take off when she felt too hot!