Just to echo what @MistyK has said . You really need to speak to your team and go over your diagnosis and treatment plan . Take someone with you and write things down .You could also ring the helpline on 0808 800 6000 as they can give you
advice about what to ask at appointments and
explain your situation to you more clearly. If you really are HER2 + as you have said then you are unlikely to be offered an AI or Tamoxifen unless you are also ER+ . ER + and HER + look similar on the page but they are completely different and have different treatment plans. You say you have decided what youāre going to do but make sure you have an understanding of your condition . I really canāt stress this enough. Unless you make a typo and meant to write ER+ ?
Hi pneuma
(Thanks for the heads up about the show; I should take a look.)
Her2+ will have a different treatment, not AIs for that. I canāt help with more info though, as I was negative.
If you are ER+ with a strong score (I was ER+8, meaning all 8 cells(?) tested were oestrogen receptive) then you will most likely be recommended to take an AI.
I had a double mastectomy (different cancer in each breast; strong family history) and decided to āstay flatā.
I had 5 sessions of radiotherapy which had very little effect on my skin but may possibly have caused my slight breathlessness and rib pain (which Iām hoping is not bone metastasis, but no one will agree to give me an MRI).
Chemo was not considered to be of benefit in my case - my recurrence risk dipped under the threshold for chemo.
I am averse to taking medication in general - I hardly ever reach for even paracetamol but have had to succumb to antibiotics quite often since childhood.
I do have flu and Covid jabs (as much for my partnerās protection as mine, as he is compromised by residual asthma from childhood).
Good luck with your decisions; you will have time to consider the advice and some of the treatments before you need to start.
Thanks! I guess I canāt escape chemo treatment then. Thanks you guys I actually am in 2 breast cancer forums. And the women there basically said the same thing. Thanks! I appreciate all your inputs. My journey is just beginning. But women in these forums like you have actually gone through this breast cancer journey and speaking from experience so of course I will heed all your input. THANKS!
Thanks. Yes, our cancer treatments do vary depending on our particular cases. I will definitely listen to what my onco and breast surgeonās treatment plan. They know better anyway.
Thanks!!! Is ER - estrogen receptor? If it is then yes my biopsy result says itās positive. So I am ER+ and HER2 positive.
And I just seen my MRI result in mychart portal. My MRI result:
Birads 6.
I definitely learned from everyoneās inputs. I definitely will go with the treatment plan my onco and breast surgeon decides to do. They know better anyway and so are the women in these forums speaking from experience.
I appreciate everyoneās inputs.
If it says ER- then no, you do not have estrogen receptors. You are HER2+ positive and thatās it. So no you wonāt be offered AIās. But you will be offered herceptin which is a very powerful immunotherapy that has totally changed the trajectory of HER2+ breast cancer.
Hey together, in the reactions on MistyKās post I am reading beautiful things like āmy body - my choiceā and that itās important to have āpeace with the choices we makeā. And this is so true. There are many ways how to deal with breast cancer and the treatment. And itās not easy to make a choice and to stay by yourself with all the well-intentioned recommendations from the people around you (friends, family, medical staff). Listen to your body. I wish us all the very best of the world, empathy and understanding for the choices we make!
Check out the new Predict tool which was updated in the Spring of 2024 (thereās a link on the McMillan breast cancer forum). From the outset my oncologist suggested she wouldnāt have an issue if I were to forgo hormone therapy ( 11mm grade one tumour, age 54). Regardless I preserved with Anastrozole for 6 months &, due to severe insomnia I stopped that & switched to Tamoxifen for a further 18 months. Pretty sure this affected my liver function as so poorly on it. I reluctantly gave up on all hormone therapy a few months ago but have been beating myself up over it ever since! According to the new predict model however 5 years of hormone therapy (which I was initially prescribed) saves no lives over 15 years, 10 years of hormone therapy saves 0.6 lives. Now feel I can rest easy with my decision!
Oh my goodness @Alpha thank you so much for referencing the updated Predict tool, I was completely unaware of it. Plugging my numbers in (G1, Er& Pr+ HER2-, 14mm, 0 lymphs) and it says 0.4% lives saved by endocrine therapy throughout the 15 years. Also reduced Death from BC from 5% across the 15 years to 1%. Iām amazed but I guess that reflects how effective modern treatments are. I guess my only concern is there is no field on the tool for the Allred score as I was Er+ 8/8 and Pr+ 6/8 which is still a worry. Nevertheless food for thought. Thanks again.
I saw this earlier . It now allows for radiotherapy.
I get 1% benefit for AIs. Iām going to persevere for now , only 2 months in .
I had an oncotype , didnāt qualify on NHS as was low risk , insurance funded . My score was 18, so I know my personal risk .
Thank you for this information - I had come to terms with the fact I had stopped it and my Breast Surgery team were ok with it . I met up with a local informal support group yesterday though and they all were staying on their anti - oestrogens therapy , I found myself explaining it and questioning myself again . Iāll take a look at the new tool . Xx
I would like to know the link to the revised version of predict
If you can let me know where it is without me going to the MacMillan website
Cheers
Seagulls
I had trouble locating it so i googled updated Predict score Mac Millan breast cancer and it came up. It did improve my score .
Menopause and Cancer podcast had an oncologist talking about AIS and treating .
So if Predict says 5% benefit , you have to treat 100 patients, for 5 to benefit . But no one knows who the 5 are . And the other 95 may side effects for no gain .
Be interesting to see what happens with the new results and what the Onco recommends.
I had 2-4% benefit on old predict , 1% on the new one ( after radio ).
Iām sure they would still say , try them .
Crystal ball would be wonderful 
.
How kind Tigress
Seagulls
Thankyou so much @alpha for posting this update, I have been using the old predict model to support my decision to not go ahead with my full chemo treatment plan, however this updated information ( although only data) now gives me the confidence that in my case I have made the correct decision.
I get where you are coming from but I had to write to put a diff viewpoint. You donāt know if you will get symptoms? Everyoneās different.
I went on Tamoxifen and my oncologist recommended a brand that worked for a lot of Women. I got zero symptoms. But if I read all the negatives on this forum then I would have ran a mile!
Bottom line is if you donāt take it and you have to do this all again would you not reconsider trying and then giving it up if it doesnāt work for you?
I am due to take Letrozole and reading the same comments! I will give it a shot and then change brands if it doesnāt work. I agree living with terrible symptoms is not a way to live but at times some of the side effects could be mid attributed (like coinciding with menopause and other ailments that may not be as a result of the drug but as a side effect from chemo/rads etc.
Best of luck whatever you decide!
Ohmigosh!!! Thank you so much for referencing this new tool!! Iāve been using the old one and my survival has gone up an astonishing 8 percentage points at 15 years with the things Iāve been doing!!! Canāt tell you how good that feels. Plus the fact that theyāve now included all these things like bisphosphonates, progesterone involvement, and which chemo youāve gotten is incredible. Like we know so much now how they can affect things. Thatās fantastic.
In saying that though, my survival rate has gone up 8 points but the benefits of endocrine therapy has gone down about the same at 15 years. I was at 12% benefit. Now Iām at 4.1%. Still worth taking it for me since I have no horrific side effects but I do feel better knowing that if they tell me to quit it at five years instead of 10 that it may not be that big of a deal any longer. They should add exercise though. Studies have been tabulated now that it may not make as much a difference as they thought (60% reduction in recurrence score was tossed around when they first started mentioning it) but most say at least 30% reduction. Thatās still huge. Like my survival rate goes up 2.7 percentage points that way. About half of what endocrine therapy gives me 
So I guess for those with huge side effects see if you can add something else in there. Bisphosphonates give you about a 1% increase in your percentage score for example. What else is out there that gives you an advantage???
Hi @klf Iām still trying to get my head around the Predict model (old and new). So when the model says that, for example, I get a 0.04% better outcome over 15 years with endocrine treatment, does that mean my chances of surviving to 15 years are marginally better by .04% (which is what I always assumed it meant) or, as the oncologist you reference suggests, that with endocrine therapy .04% more people will survive to 15 years? Is that how you understand it? I get that itās all just statistics but I prefer to know if Iām reading things correctly.
The most interesting thing for me about the new data is that, in the subset of data to which I belong, deaths due to BC - and by extension, the number developing secondaries - has fallen quite markedly which I take to be an indication of improvement in treatments. Basically, encouraging news.