chances of oestrogen positive cancer returning

It’s understandable to be asking this. I had oestrogen positive cancer with lymph node removal 16 years ago. I spent a long time trying to find an answer to your question, but the truth is it’s almost impossible to give an exact answer. There are so many factors that influence this, you will probably only get vague answers from your doctors, because they just don’t know.

Everyone’s cancer story is different, but you can influence your outcome. It is the boring stuff, eat well, sleep well, exercise, reduce stress, live life and be happy. 

it will feel very dark and scary now, but try and use each day for a little bit of hope. I call them my nuggets of joy. The fear is real and overwhelming sometimes. The not knowing is so frustrating but can pull you down.

Wishing you the best possible outcome xx

Hi,

I'd agree with the reply from Molly3. Fear of recurrence is real & unsurprising. I'm 9 months into my own journey and am doing well. (I'm older than you but also had oestrogen + tumour so have had wide local excision & 2 sentinel nodes removed plus radiotherapy and will be taking Anastrazole for 5years)

I have found that there can be a lot of support available. Talk to the breast care nurses at your hospital however many times you need to, take a list of questions with you to your post surgery follow up. My brain went to mush for a while so I made sure I took someone with me to my appointments to make notes. I also asked to have copies of all correspondence between hospital departments and my GP which has been super helpful.

There is so much more to cancer recovery than I thought and it can feel overwhelming trying to fit it into daily life but I'd urge you to take the time you need when you need it if at all possible. Be kind to yourself.

There's also great support from cancer charities as well as the NHS. I'm not sure if it's a national offer but in my area once active treatment is done there's an NHS/Macmillan Next Steps team with access to cancer specialist physios, personal trainers, dieticians, psychologists etc. Their focus is on helping  people to mitigate & live with effects of their diagnosis & treatment. It's been a game changer for me. 

You're the same age as my daughters,my heart goes out to you having to deal with this but you will.

W️ith all good wishes, xx

Hi there supermeg90, this is something I would also like to know.

There are a few ways of predicting the chance of breast cancer recurrance for the first ten years. From what I've read, these are based on clinical studies with thousands of patients and the studies ended after ten years. My surgeon pointed me to one put together by Cambridge university. I don't think you'll get much information beyond that and of course, every body is different.

I know this is quite frustrating, I've gotten unbelievably fed up with the general advice and information given to me. I decided to focus on the things I can control: diet, exercise etc.

I think it would be helpful for other ER+, node negative people in this forum to share how long they've been in remission. I was also diagnosed in November so would definitely find this reassuring.

Hi Supermeg90 , great replies already, just wanted to pop in to add a welcome to the forum and a hug. You’ve asked the crucial question which is so hard to get an answer to. I’ve only been given information about survival statistics and predictions. I was diagnosed in autumn 2018 (details in my profile), had surgery, radiotherapy and hormone therapy. I’m still taking Anastrozole, due to finish in December. So far so good! I’m looking forward to stopping popping the pills but also feel apprehensive that my ‘safety net’ will be gone. In preparation for this, I’m going to look at possible other sources of support - at the moment I only take what I’m prescribed, no supplements apart from calcium and vitamin D which are recommended as I have osteopenia (precursor to osteoporosis). But I’m looking into things like mushroom supplements (given in some countries alongside conventional treatments), but won’t consider starting anything until I finish the hormone therapy. I’ll try to get guidance on what to take. And like Molly3 has said, I’ve adjusted my diet, increased my exercise and am lucky now to be retired so that helps on the reducing stress front. 
Some great suggestions above about places for support, I’d just like to add Future Dreams House in Kings Cross, London. They do lots of in person and also online sessions, if you’re not in easy reach of London. Can’t recommend it enough, I’ve been to several sessions since my diagnosis (there’s a regular one on diet which I’m sure is available both there and online). My next one is on ‘Fear of recurrence’ so spot on for this thread. Sending love and a big virtual hug, HFxx

I’ve thought about joining this discussion for 24 hours, as my experience may make folk doubt their status and worry more. But I think we have to acknowledge that nobody really has a full answer to it all. 

i was originally diagnosed and treated in 2018, had a mx with (my choice) an implant. I was prescribed Letrozole for 5 years but after 3, was swapped to Tamoxifen as I’d already got mild osteoporosis. (By the way I was over 70 when diagnosed) 

In late February last year I sold some of my hubs’ big woodwork tools which were occupying a lot of garage space, had to help get them into the van lift, so involving some lifting by me. (Hubs had died in late 2921 after a 10 month illness with kidney cancer). I thought the ache was maybe due to that, but it didn’t fully settle and there was a lumpy area at the end of the mx scar which began to feel odd. I monitored this for a while but got too concerned and asked to see GP. They referred me on the 2 week rule and the upshot was that, yes, the beast had returned and sneaked behind the implant. 

I’ve had a full mx with a few more nodes removed, it was in one. So radiotherapy (most of July last year) and then in October I started Abemaciclib and Exemestane with Zolendronic Acid infusions. 

Im a firm believer that stress has a much bigger part to play in cancer than is fully understood. I’d supported daughter in her 10 year illness with a lymphoma (it’s in my profile) prior to my initial diagnosis. And the stress of looking after my disabled husband who then got diagnosed with kidney cancer, I believe, has contributed to mine recurring. 

I think I’d just say this; continue to be ‘breast aware’ whatever your status and situation. And ask questions if you have any concerns or doubts. And best wishes to you all, with…..

hugs xxx

Oh, and by the way, my oncologist felt that it might have been Tamoxifen which let me down, but who knows? In any case, the choice of Abemaciclib was made for 2 years at the dose level I am coping with (50mg) but I’ve not asked about the length of time for Exemestane, the oncologist wanted to try a different AI drug than before, just in case. 

Hugs xxx

Hi Supermeg90 
This is a vital question. I am trying to weigh up taking an AI - I am 55 but found effects of menopause very difficult with negative impact for me and my family and ability to do my job. I have only just started to feel better. I had 70mm DCIS and 3 tumours IDC removed and am assessed as low risk of recurrence. 
There is some recent work that has identified 4 subgroups which make up 25% of ER+ cancers as AI resistant / likely to have late recurrence - most importantly linked to molecular pattern rather than size / grade of tumour and lymph involvement. Unfortunately there isn’t a test yet that is readily available but maybe it will be in 5 years time when we come to the end of our AI therapy? I am seeing my oncologist this week and it’s one of my (many) questions.

Links for reference 

https://med.stanford.edu/news/all-news/2019/03/molecular-data-can-predict-breast-cancer-recurrence.html

www.cam.ac.uk/.../molecular-patterns-could-better-predict-breast-cancer-recurrence

Thanks bobof that’s really interesting and definitely hope for the future xx

And will be very interested in what your oncologist says xx