Treatment decision paralysis

I confess to being almost grateful I had a more developed tumour and a very specific treatment recommendation (6 months chemo, a year of herceptin and what may be ten years of hormonal treatment!). No dilly dally! But at least I felt I had thrown everything at it. My surgeon said once that every percentage point can count - 3 or 4 per cent is pretty small
unless of course you are part of that percentage! At 67, I went for the full banana - still here, well, worked through treatment, never regretted having it. Not everyone feels the same. Which is why the decision comes back to you. But always remember, if any part of treatment becomes too onerous, too hard, you can stop. Best wishes whatever you decide.

Hello @JaneinMelbourne
I can only tell you how I made my decision, which is not a suggestion for you. 

Hello @JaneinMelbourne,

This is a tough decision.
Did the Prosigna provide any useful "cut off" points? i.e. My Oncotype DX test result of 20 (at age 54 with very hormone receptive BC), indicated that chemo was of less than 1% benefit and not "necessary" AS LONG AS I do endocrine therapy. A score of 26 or higher would indicate that chemo is definitely of benefit. The cut off scores are lower for younger women.

Some people would go ahead with chemo just for that 1% reduction in risk.

My score was the deciding factor for me, and I did not have chemo. 

If that's no use, do you have a rapour with your oncologist - ask them what they would do if it were them or their wife/daughter?

Best of luck.

@JaneinMelbourne I was 43 when I was first diagnosed--a particularly nasty, invasive and evasive lobular version of our disease. Having spent a couple of years chasing this shitty tumour, I was already suffering battle fatigue; I knew I was going to lose my tits and the thought of chemo as well was all a bit much. In my case it was likely to make a 4-7% difference. Maybe.

Anyway, I hauled my miserable self off to see a councilor, which was surprisingly helpful.  That was late on a Friday afternoon and as I drove away I made a deal with myself that if I could get my hair cut off on the way home I'd submit to the poisoning. The first two hairdressers where booked out, so I decided that if I was not going to have chemo, I'd probably need gin.

When I pulled into the carpark of the local shopping centre with my eye on the bottlo, I spied a little beauty salon so stuck my head in and asked if they had a spot. They did. Twenty minutes later, my waist length hair had been bundled into a plait and lopped off. There were tears all round--me and the hairdresser and another woman sitting there getting a perm.

Not a very scientific approach, I know, but its illustrative of how I make choices when I'd rather not make them--chuck it to the gods and see what happens. A bit like tossing a coin, but the odds aren't 50-50. I hope you figure this out and find some comfort in whichever decision you end up making. Mxx

Thanks for sharing your stories with me  <3

@Dory65 the oncologist only gave me the summary to take home but I will ask them to share the full report with the number, what I do know is my risk is classed as immediate which is the “less clear” area - but it will be interesting to see what side of less clear I sit and maybe that will help with the decision... I don’t feel like I have much of a rapport but maybe I need to ask more of a pointed question as you say.

@FLClover I was also told I could get a recurrence irrespective of chemo as well which makes the argument for less compelling. That’s why when she said one way to look it is would I be ok with myself if it did come back and I hadn’t had chemo, I guess in my mind the counter was what if it came back and I did do chemo too. 

Each of us has to live with our own decision. For me, I tried to think ahead to if it returned. Would I beat myself up with the thought of "If only I'd done the chemo...I might have been in that two to four percent".  Percentages are tricky things, the problem being you don't know which side of the line you will fall in the future. I tend to think in "stories" to help clarify my mind. If I went into a shop and was told that all stock was to be reduced by three percent...I'd think "big deal...that's not much". In another scenario the coin flips. If a mad gunman entered a large city school with a thousand pupils and shot and killed three percent of the pupils...that would be thirty dead kids...hmmm...an awful number of children. As my final five cents worth I offer you this. Back in the day, I was a very active skydiver with well over a thousand jumps. The statistics show that only one percent of jumps end in a reserve parachute being deployed. I never left a plane, helicopter or hot air balloon without my trusty reserve. I did only ever use it once, but boy was I glad I had it.

I agree with everything that has been said here, but I thought I would add a little too. @Zoffiel always makes me smile! I was diagnosed with ILC in December last year and it can be very overwhelming. Once the train leaves the station, it’s a bloody crazy beast. Even though it feels like it doesn’t stop, the good news is, it does. I had chemo, a BMX (my choice) and now take a hormone suppressor. I decided I was going in hard. At one stage one doctor wasn’t sure if I would be having chemo but it seemed like it would give me better odds. That is confronting when you see your details being fed into an algorithm in order to make decisions but I am grateful for all of the research that allows us to have more opportunity to make decisions. After the surgery the pathology showed clear margins and clear nodes - great news. However I was then given a decision of whether to do radiation as apparently I was in the ‘grey area’ - what tha! Turns out the grey area is an actual thing. The doctor said he was happy with whatever I decided. I honestly felt I was being asked if I wanted sauce on my pie! I actually cried I felt so overwhelmed. I decided not to do rads and I had to make peace with that decision, but I made it after considering all the options. I had got some counselling along the way and had a great surgeon and medical oncologist who all supported my decision. My oncologist actually said that people ask him what would he advise if it was his mum/sister and he actually said he was comfortable with no rads. Take the time you need and whatever decision you make will be the right one for you. We are here for you! I am wishing you all the best in your decision. Mx

@JaneinMelbourne
I was also asked if I would be ok with it returning if I hadn’t done chemo, but after all i was told, it returning (God forbid!!) wouldn’t be just bc I didn’t do chemo. I guess if that happened, I’d just do chemo then. And I’m in the mindset that it won’t return. So I’m planning to enjoy my body and spirit feeling as good and healthy as possible, without the side effects of chemo. I already have side effects from Letrozole and they’re enough. I was actually told the AI would work just as good as, if not better, than chemo would, and I need to take it for 5 years minimum. Plus I had double mastectomy AND radiation for stage one and no node involvement, so I figure I’ve done enough for now. 

P.S. I’m also a bit like @Zoffiel, and leave decisions up to the Universe a lot of the time. When I went to see the med oncologist, I was told chemo should ideally start 6-8 weeks after the main surgery. After that, the benefits of it would be even lower. I was already in week 9 post surgery, and would’ve started chemo in week 10. In addition to it already being only 1% benefit, I thought it was useless. I took it as a sign front the universe, going to see med onc so late, that I shouldn’t have it 

Thank you again, very much appreciate the time taken to share your thought process ♥️