High risk for cancer returning

@primek, thanks. I will give the hormone blockers a go, but not sure about pallas trial yet. Maybe it's just the post chemo effects lingering making me feel crappy. Have developed heart palpitations bad since my surgery and also a flair up of the hand and foot syndrome which seems strange.

I know that over 10 years taking hormone suppressant for 5 years really showed the difference at the 10 year mark for me. More than the chemo. More than herceptin. If it was 1% well meh...but 10% is enough to think it's worth it. Guarantees. ..no.  But who wants to get down the track 2 years and have regrets not having all offered treatments to reduce recurrence. Great they are offering you the pallas trial. 

Thanks Melinda and Deanne, it's information overload, but you have helped put things in a better perspective.

@LMK74 there's always so much to digest isn't there? seems neverending, never clear cut at all. I just wanted to say for me having had only DCIS and aggressive treatment in 2011, I had a recurrence in 2015, it returned as IDC 2.5cm tumor Stage 2 Grade 3 but am only ER+. Chemo threw me into menopause and caused osteoporosis....so the AI didn't. I wouldnt even know I had it, that's the truth...I also have Prolia injections every 6 months..big deal and again wouldn't know I had it. In my case, an AI only offers about 2-3% chance of no further recurrence and the other bonus I have is Prolia plays a massive role in prevention too LOL, go figure. So for me after a recurrence and eventhough a year later had a mastectomy, I'l take 2-3% even only being ER+ the AI to be honest, yeah Ive had some trouble but nearly 2yrs post chemo Im used to it, nothing that prevents me getting on with life at all...I'm 49. For me, I couldnt have it happen again not knowing I didn't do everything possible even if I had only 2-3% so at 10% I actually think that's massive! something to think about. 

Nobody can make that decision for you, it's so incredibly personal and everyone has their own experience...you will find the right thing for you...afterall this is about you nobody else.

xx Hugs 

Melinda 

Maybe it helps to visualise it like this. Out of 100 people with similar pathology to yours, an extra 5 to 10 will not have a recurrence if they take the hormone therapy. (This is on top of the % chance you already have after your other treatment).You could be one of them. Statistics are the only guide we have when making these decisions but for me it really helped to understand it like I have tried to explain.

Everyone is different. I view the hormone therapy (I am on Letrozole or Femara) as something that could save or at least prolong my life. I have found a way to minimise most of the side effects I have experienced. Unfortunately our choices are not always easy but at least at this point we do have options. I chose the option that I felt gave me the best chance against this horrible disease. So far so good (4 1/2 years after Stage 3a Grade 2 diagnosis).

I have 6 monthly Prolia injection which builds bone butalso is said to reduce risk of bc recurrence but not on PBS unless had a fracture if under 70.Think you might need to discuss things with your oncologist some more re % - I think from memory AI just topped things up for me

@Zoffiel, and @Romla, thanks. I'm 43 and the prospect of weakening the bones  and other possible side effects does not sound great given such a low percentage. I know only I can make this choice but it's lots to take in. Is everyone's percentage different?. 

I'm not sure if this helps but I was pregnant with twins at 47 and told there was only a 10% chance that both would be ok - they were 17 last week and are both fit and well.I am on AIs  - week 6 and managing - I want to see my sons settled into adult life so will do whatever I need to . 

So far the hormone treatment hasn't been the shitfight I thought it would be. Yeah, things aren't great; I had a huge physical crash after chemo but things are slowly getting better. I didn't think they would. Four months in I'm not thinking of pulling the pin on it.

Main risk that the AI poses now is osteoporosis. I figure if I live long enough for that to happen I'm still winning.
You can stop at any time, but you only get one go at starting this stuff. 

Best advice I can give--since you haven't got very convincing stats to work with--is think about what you would want a good friend to do. Sometimes we have to take a step outside ourselves when we make these decisions. Best of luck Lisa. Marg