Hello
I’ve used the predict tool and played around with different scenarios. It seems like taking the anti- oestrogen meds for five years gives me a 3% improvement in the chance of the cancel not returning.
I don’t feel this is high enough percentage for the side effects. I’m thinking of not taking it.
Anyone else decided against the anti oestrogen meds?
Thanks.
This is a tricky one isn’t it?
My risk of metastasised reoccurrence is intermediate WITH the use of blockers so decided to try
It’s not great, not going to lie (even after chemo this is hard!)
But I only had a 2-3% chance of getting BC at 49 so it makes me more wary to stop
Which blocker has been tabled ? X
Hi @lizziellama just to be clear, the Predict tool gives a percentage chance of survival not of recurrence. There is a static about death from breast cancer which, as it refers to metastatic recurrence, might be the one you’re looking at? There are quite a few threads discussing whether to take AET or not here Hormone therapy - Breast Cancer Now forum. It may be worth going through your Predict scores with your oncologist or BC nurse just to be sure you’re understanding the results in the same way as they are. Ultimately, no-one can make you take them and a good many women don’t but it’s worth having the conversation.
Dear @lizziellama, I understand your dilemma but not everyone gets all the side effects so you may wish to consider giving it a try and see how you get on? Anastrazole doesn’t lower ones estrogen as much as Letrozole but is still effective. I know several people who have been on hormone therapy for years and are finding it manageable. If one does get side effects they tend to kick in at about week five and for many people they improve after 6 months as the body gets used to it. At the same time it will help to eat a healthy balanced diet, to destress/practice mindfulness and relaxation, and to do some regular exercise of whatever kind you most enjoy.
I didn’t refuse hormone therapy but gave it a go. I stopped at 11 months (even though I am high risk) because of the side effects but in my case they were extensive and unusual and I am of an age where quality of life is more important. I would echo @Tigress in talking this through with your treatment team and wish you well whatever you decide. Love Tulip x
I didn’t hesitate - but thats me, just give me anything to stop it! However, I have had side effects from Letrozole & am now on exemestane. Still have side effects but can manage. My neighbour decided not to and is now stage 4 sadly. It may only be a small % but its still there. Thats my answer & philosophy but its still your choice so do talk to as many other experienced people i.e. BCN’s, oncologist, as you can and be happy with your decision.
Hi from Florida! I had a 6mm, stage 1, grade 1 tumor removed by lumpectomy February 2022. Clear margins and lymph nodes. Also had 3 weeks of radiation with 4 boosts during April/May. Started Letrozole in June and only stayed on it for 4 months because my brain felt like it was being squeezed in a vise. Also developed neuropathy in my fingers. So far all is good approaching 3 years. Just released to yearly mammograms instead of every 6 months. Everyone is different. You have to do what’s right for you. Wishing you well.
Hi @lizziellama
I abandoned Anastrozole after 5 months and fortunately wasn’t suitable for Tamoxifen due to my past medical history. I had a Grade 1 Stage 1 8-10 mm tumour with clear margins and negative SNB . This was after an initial failed procedure. My cancer is tubular which rarely metastasizes and my Surgeon said from the off that if I didn’t get on with hormone therapy it would be reasonable for me to stop it. My Oncologist would have been less pleased but by the time the joint pain kicked in she had discharged me anyway. The so called menopausal side effects kicked in after 2-3 days but those did stabilize to some extent for me after a few weeks - but then the joint pain started.
My risk on Predict 2 was 0.8% over 5 years up to 1.3% over 15 years - the Oncologist went through this with me. I also have no dependents to provide for , no children or grandchildren and a partner who is happy to respect my decision. I would echo @Tigress and get your BCN or a Dr. to go through this with you so that you fully understand the implications for you as an individual . Also make sure that you and they are assessing you with the same tool as Predict 3 has recently arrived but doesn’t seem to be accepted by everyone yet - if you have scored yourself on Predict 3 you may come out with a higher score on Predict 2 and as has already been said Predict is an indicator of survival after 5 - 15 years and not being cancer free.
I stopped rather hastily without discussion with my team and then agonized over it until an appointment to go through it with my BCN and then a chat with my Radiologist regarding my initial procedure convinced me that my decision to stop was ok - but I made it for the wrong reasons . I would advise you to spare yourself the stress of all that by discussing it first and making the most informed decision that you possibly can .
As @Tulip29 has said not everyone gets the side effects or only get minimal effects. I can attest to this from speaking to ladies at my support groups .
Wishing you well whatever your decision . Xx
Thank you for the reply. One thing keeps being mentioned and that is discussion with my oncologist. I don’t think I have one. I have a surgeon and the breast care nurses. I’ve had one clinic appointment with the surgeon and that’s it…. ( as well as two lots of surgery).
I will look at Predict 3 as I’m unsure which version I used and keep on information gathering. Thanks again to everyone. 
Hi @lizziellama this is the version of Predict being used by the NHS at the moment Predict Breast it is version 2. Version 3 is based on more up-to-date data but the body which authorises it for standard use by the NHS have asked for more results validation against overseas studies before clearing it for general use. I have heard that some oncologists have used it with patients but you’re more likely to go through V2 with your breast cancer nurse (as you don’t have an oncologist). An oncologist will be part of the Mixed Disciplinary Team (MDT) that has discussed your case and I would imagine that there is nothing untoward about your treatment which would require an oncology appointment - which would be a good thing, I guess. I had one face to face meeting with a junior oncologist in which she told me my treatment plan and did not answer any of my questions. I then had a telephone call with the same woman after a few months of being on Letrozole, still wouldn’t (couldn’t?) answer my questions, so you’re not missing out on much. Call your BC nurse specialist and have a chat.
Hi @lizziellama
I’m glad you’ve reached out here, and many members are sharing their experiences with you.
Please know that our specialist breast care nurses are also here if you’d like to chat this through with them. You can get in touch with them here on the forum on the Ask our Nurses your questions board or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Sending our warmest,
Lucy
Hello,
I was prescribed Letrozole but was not able to take it because I had an allergic reaction. The doctor and BCN explained that Tamoxifen gave a good protection against reoccurence (although less than Letrozole) so I have been on that now for two years with minimum side effects. A friend was on Anastrazole and had bad joint pains and was also recommended to try Tamoxifen and is happy on that.
So that might be something to discuss with your oncology team or BCN.
It was my Surgeon who initially prescribed the hormone therapy and you can ask your BCN to go through it and discuss it with you. You may get an Oncologist at some point but not everyone gets to see one sometimes it’s just a case that they will have input from an Oncologist when your multi - disciplinary team discusses your case . At the end of the day Predict ( wherever version) is just a guide and there aren’t any guarantees. Remember also that it gives you a % chance of being being alive at the end of 5 , 10 and 15 years - not alive and cancer free .
The decision I made was just for me and related to my circumstances and my medical history . A lot of people have said that they don’t think they will take it but then decide that they will .If you are offered a Holistic Needs Assessment with your BCN team you use that to discuss hormone therapy and ask any other questions that you have about any aspect of cancer. They may also ask questions of the multi disciplinary team on your behalf and offer to put you in touch with local support groups which might be helpful .I’m a medical professional myself and one thing I have found is that you sometimes need to get things interpreted by a medical professional who knows that field inside out to put it into context. Some to be honest aren’t very approachable or willing to discuss but there will be someone that will . Xx
I took Tamoxophin for a month 10 years ago, side effects were not nice, I had anxiety (still have it now) and my husband said it made me realy nasty to him, so I was told I could stop taking them.
Hi. I wasn’t going to take letrozole, I also didn’t think the 3% difference it would make was worth it. But the oncologist explained it this way. My radiotherapy had given me an 85% chance of my cancer not coming back within 10 years. Add on the 3% with the letrozole gives at total of 89%. That’s quite high odds of keeping it at bay. So I thought I try it and see how I felt. After the first couple of months things settled down. 2 years on and I have some side effects but nothing I can’t cope with.
3 years ago I had a small cancer and no other treatment, I too looked at Predict and decided I would not use letrozole .
Unfortunately in mid 2024 the cancer has come back but now grade 3 Treatment mastectomy , clear nodes and PET scan clear . I am having letrozole which I take at about 6 pm and touch wood seems OK from side effects point of view. Do I regret not taking letrozole 3 years ago ? I can honestly say no , I made a decision that I was happy about at the time. The only regret I have is that I wanted a mastectomy 3 years rather than a lumpectomy and it was refused, indeed this time I had to insist on a mastectomy.
Currently I have had the a similar decision about chemo , 3 % better chance of it not coming back and I took the decision that that was not worth the side effects.
These decisions are always so personal, what you need to be is happy that you will not look back with regret if the odds do not work out .
Thank you for your reply. I too am a HCP and have to keep telling myself ‘I don’t know about breast cancer stuff!! Stop pretending you can navigate through this alone because of what you do for an jobAsk for help and listen’.
So greatful for this forum.
Oh dear, this is such a difficult issue which is why it must always be entirely personal.
After surgery, chemo and radiotherapy I gave Letrozole and Exemestane a go and then abandoned the drugs. The side effects were simply too much to bear and, in my view, condemned me to a sort of half-life. I don’t have any dependents and I am a very active person who likes to live life to the full so I made the decision to play the odds.
Five years on I am still clear and pretty healthy. However, had my personal circumstances being different I might have made a different decision. Like yourself, the percentage of protection was just too small to make living with the downside of the drugs worthwhile.
My advice to anyone would be to try them first. Many people don’t suffer from the side effects in which case any extra help is surely worthwhile. But if they do to you what they did to me (and I include bisphosphonate in this which was the worst of all), then I would leave them alone.
Best of luck to you.
That’s exactly right - yes do your own research. We don’t have the luxury as I have known one or two people to do to get through it without questioning a bit at a time because we start with a bit more knowledge than most people but you don’t know what you don’t know if you see what I mean. At my second screening I think I drove the BCN up the wall with all the questions I asked and in the end she sent me a huge folder in the post with every Breast Cancer Now publication in and more . However you can advocate for yourself but I’ve learned that in the end you can’t be your own Dr. or in my case Nurse . Best of luck with everything. Xx
If you are using the predict tool, that only gives 5, 10 or 15 year survival rate. This is not a reflection on reoccurrence, and not the same. These days, people are known to live 10 years or more with grade 4’s due to advances in treatment and longevity does not include quality of the extra time obtained.
Lol, having said all that, Ive ditched the tamoxifen due to side effects, but I did give it a good go first as not everyone gets bad symptoms, I just happened to, so I weighed it up. Though, I am clear that the less than 2% predict gives me, is based on survival and does not mean occurance carries the same risk - it could be more, could be less, but there is no tool in existence that gives a reoccurance figure. As long as you understand there could be consequences, and perhaps be vigilant for signs, its then up to you to decide. However, being fearful without giving it a go, is not a logical decision, if you are looking at it logically, as I did, and weighing up numbers, you should at least attempt to stack them in your favour by giving anti-oestrogen a chance. Then if you have a crap time on it, its fair to consider the pro’s and cons. Fearing before starting is an emotional response, not a logical one.
Take whatever they offer you.My chances were 3% in 2012. I took Tamoxifen for three years, exemestane for two years and then back on Tamoxifen for five years… For me, the reassurances outweighed the side effects. Unfortunately my cancer came back when I stopped taking the drugs in 2023