Hi Everyone, I’m sitting in a grey zone at the moment and trying to understand how you weigh up your options with so many unknowns! I’ve just received Prosigna results back which show a 10% chance of recurrence, with chemo giving between a 2-4% risk reduction. I know I have 15-19 sessions of radiation ahead of me and hormone therapy after that for 5 years..My chemo course if I go ahead with it would be 4x TC for 3 months. How are you supposed to weigh up potential risks of recurrence without knowing how badly you will respond to chemo!? I’m 33, want kids in the future - and three oncologists have given three different opinions of how aggressive treatment should be. I’ve been told there are no wrong choices and that they are supportive of whatever decision I make. My husband and I literally can’t make sense of how we proceed! I am healthy and active and am very nervous about the toll of chemo, being luminal A and therefore it’s benefit being less clear cut and the stacked impact of all these treatments together. Any advice on how you navigate these decisions would be wonderful! Thank you xx

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. Just like the other ladies suggested, I asked the registrar of my medical oncologist (a young woman) what she would do in my position, without the oncotype dx. She said she was risk averse and would avoid chemo if she could. So 🤷🏼♀️. It is your own choice in the end, and there’s no right or wrong, just make sure you’re comfortable with what you choose 🍀

Thank you again, very much appreciate the time taken to share your thought process ♥️I’ve decided to pursue chemo, I spoke to the oncologist again today and when she said if it came back it would be incurable made that extra 2-4% seem a lot more significant. I start chemo next Wednesday. There is some peace with making a decision and I can only hope for the best with how it goes 🤞🤞🤞

I too had a grey area decision to make. I did a lot of thinking about it while I went on long walks. A lot of long walks! No one was especially helpful to talk to, though my BS was very patient with me debating the pros and cons.In the end what tipped me was my best friend asking me very specifically why I was making the decision I'd tentatively chosen. She asked on WhatsApp so I had to answer by writing back. There was something about listing the reasons (there ended up being 11!) that cemented my decision.Ultimately it comes down to what you are comfortable living with, no matter what happens in the future. The aim is to have no regrets! All the very best, K xox

Treatment decision paralysis

Dory65
Member
5 years ago
I hear you @bell59. Even with the Oncotype test result, I sometimes feel anxious about my decision not to have chemo. I guess it goes the other way too, and others wonder if they've been overtreated (and if the side effects were worth it). I had a very lousy first appointment with my oncologist and their trainee. It just snowballed from there. So much hinges on those initial appointments. So little time, not enough information or explanation. :/
bell59
Member
5 years ago
I wish I had the help of all the experiences and opinions of the wonderful ladies here when I made my decision ( no test, no chemo) back in April as the professionals involved were very dismissive of my effort to research all aspects. I came a bit later in my journey to find all this info and support online. Needed alot of therapy to find peace Good luck, @janeinmelbourne Feel good about your choices, and keep support close to you.
Abbydog
Member
5 years ago
Dear JaneinMelbourne,
That's great news.
A couple of times I had an extra strap over the top of my head and down around my chin. As i felt an air bubble on top.
(When I pushed down on top I could hear air moving.)
I'm not sure what Chemo drugs you are receiving. Don't expect the worse, with side effects, it may not happen. You will probably at least have some more minor ones. I have been very lucky. It's OK to vent if you need to though.
Good luck with your continued use of the Cold Cap.
I was told not wash my hair too often.
And not to blow dry or straighten my hair, while using the Cold Cap.
Keep in touch.
JaneinMelbourne
Member
5 years ago
Thanks @kmakm - cycle 1 is done and dusted today 🙂

@Abbydog didn’t find the cap too bad, am used to cold water swimming having grown up in NZ so good training 😂 I was more worried about it being on tight enough but am hoping it did the trick as had the small cap and tightened the strap a couple of time over so fingers crossed!

Feeling completely fine today and done lots of walks with my dog, back to work tomorrow (still WFH) but feel a bit like a ticking time bomb waiting for some side effects to hit 😬😬 hoping for the best!!
Abbydog
Member
5 years ago
Dear JaneinMelbourne,
That's good news. You can only try. It is uncomfortable at first for about the first 10min, and then gets easier.
It is similar to jumping in the pool. You adjust and get used to it. The temperature drops about 5 or 6 times until it reaches the cold temperature required.
I believe that if you don't use the Cold Cap, you loose your hair around the 2nd to 3rd treatment, so you should know then
if it is working. You will probably have some thinning.
Keep in touch. Let us know if it works or doesn't, or if you can manage or not.
You've got nothing to lose in trying.
Good luck with everything.
kmakm
Member
5 years ago
I too had a grey area decision to make. I did a lot of thinking about it while I went on long walks. A lot of long walks! No one was especially helpful to talk to, though my BS was very patient with me debating the pros and cons.

In the end what tipped me was my best friend asking me very specifically why I was making the decision I'd tentatively chosen. She asked on WhatsApp so I had to answer by writing back. There was something about listing the reasons (there ended up being 11!) that cemented my decision.

Ultimately it comes down to what you are comfortable living with, no matter what happens in the future. The aim is to have no regrets! All the very best, K xox
JaneinMelbourne
Member
5 years ago
Thank you @Abbydog - I am going to try the cool cap, my hair is quite fine already so not sure how successful it will be but thought it was worth a shot.
@ddon yes I think you are right, 3 months isn't so long under other contexts I just have to keep reminding myself that!
ddon
Member
5 years ago
When I had chemo in front of me it seemed so dreadful and so hard. Now that it’s behind me I am so glad I did it. Even though it could very well not work, I have done the best I can and I would hate the regret of wishing I had thrown more at it.
Zoffiel
Member
5 years ago
It's a tough decision and only you can make it. Well done, we know how hard it can be--either way. MXX
Abbydog
Member
5 years ago
Dear JaneinMelbourne,
I didn't have any predicting tests. Maybe I was lucky that I was given a clear plan and happy to follow it.
I had Mastectomy with axillary clearance, Chemo( x4 EC + x12 Paclitaxol) Radiotherapy and now Letrazole.
I am very lucky to say that Chemotherapy was not too difficult. I had no nausea and side effects were manageable.
We are all very individual, in our response to Chemo.
I'm telling you this so that you know that not everyone has a terrible time.
Be aware of possible side effects, report them to your Oncologist, accept treatment as needed, try and stay positive.
Are you going to try the Cold Cap, to try to save your hair? Is it available to you?
I used it and only had a little thinning that others didn't notice.
Wishing you all the best.