Hi I haven’t contributed here until now. I have read with great interest and empathy about many of your breast cancer journey’s. My bundle of diagnoses was bilateral, grade three ductal invasive 14mm tumour on one side and 20mm on the other. A bit of high grade DCIS on one side and Papillary cancer on the other. I had lumpectomy on both sides, chemotherapy (EC) and radiotherapy and I am now on the delightful Letrozole. Has anyone else had a diagnosis of papillary breast cancer? Being bilateral with papillary and grade three cells I have not found many journey’s similar to mine and would like to hear from anyone like me to hopefully squash my bad thoughts on my worse days. I also had Prosigna tests on both tumours which came back high risk of distant recurrence within ten years. I often wonder if my sadness comes from this nugget of information and sometimes wish I didn’t know and day to day life might feel brighter. All stories welcome good or not so good so I perhaps can gain perspective Many thanks.
Hi, I’m not replying due to papillary cancer as mine was cribiform. However, I do get how you feel, as my type is a rare one that I’ve never even found on google with my particular receptor types.
From what I’ve just looked up it seems that papillary has a good prognosis and rarely spreads outside the breast - which would seem good news. However, then you’ve got the prosignia tests that say a high risk of doing just that. So this leaves us in a state of having both good and bad future risk at the same time, so which is it? In an effort to work out what it means, you look for data from similar situations, only to realise, there is none, as it’s that rare. In my case, cribiform is slow growing, low grade, rarely spreads. However, the curve ball is also being Her2 +++, which is extremely rare for cribiform, and does the opposite in making cancers grow faster and spread more.
We are seemingly stuck between 2 possibilities. I doubt I’ll ever be able to get an idea of what the future might hold, and maybe that’s the same for you too. I’d be lying to say that doubts don’t occasionally creep into my mind, but mostly I’m not one for dwelling on situations I can’t change, sometimes all you can do is accept its a unique situation and get on with living.
Having said that, you could try the “someone like me” feature on this site, where they could match you up with someone experiencing similar.
I haven’t tried it as I doubt anyone could find similar. Sometimes, I wonder if a support thread for people who have any rare cancers that lack any meaningful data comparisons, would be of help to people, as one thing we’d have in common is the emotional experience of being stuck between possibilities, with no way of guestimation.
Hi Thank you for replying. I read someone else’s description of living with a cancer diagnosis as walking on a precipice between hope and fear. This sums it up for me, one day I’m hopeful and other days not so much. As you say you look for positive data to give you hope but there’s never anything that quite matches up. I guess we all have a unique path to run. My diagnosis was back in 2022 so on my lower mood days I feel like the clock is ticking but like you I try to be positive mostly. An emotional support group for unusual types of breast cancer sounds a good idea. I can’t use Predict (breast cancer survival) as it excludes bilateral cases but each tumour as a single event has quite a positive survival rate so I think of that in my lowest moments.
Once again thank you for replying and I wish you well with many fulfilling years ahead of you.