BCN Continuity of care?

Life after a breast cancer diagnosis Coping with fear and anxiety
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Hi All,
Quick summary of me - based in AUS, <40YO diagnosed grade 3 IDC stage June 2023 almost triple neg, ER+ 25%, 6 months aggressive triple dose neoadjuvant chemotherapy - red devil + taxol, followed by double mastectomy FCA, R side axillary lymph clearance, L side sentinel biopsy/2 nodes taken. Received NED December 2023. I have been unable to take tamoxifen/letrozole post treatment due to severe side effects (very toxic in my system for some reason). Currently having 3 monthly checks with oncologist and physiotherapist through public system. I had to fight real hard to get them to do a DMX, citing work (EMT) and minimal recovery as my reasons…as if fighting for your life wasn’t hard enough right?

My question - I last saw/heard from my BCN/surgeon team in Dec 2023. I’ve been left with excess skin/flappy bits, tissue and the FCA is not a FCA (?FCA denial?). When I mentioned it to them they said they didn’t want to see me until one year post surgery/annual review. Is it weird that I haven’t had any further check ins with the surgeon/BC nurses or is this normal?

I’ve met two wonderful women going through the same journey as me and both of them have had regular check ins with all of their breast cancer team. I’m trying not to compare but I just wondered if it was supposed to be this way or not?

Thankyou in advance to anyone who responds xx

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The current situation is follow up yearly for a few years then get in touch if you have specific symptoms. At least I think that’s how it works.

If your cancer has spread beyond the breast (metastasises) usually the bones but there are any other places you will get symptoms. At this stage it is not curable but still treatable in most cases.

Breast cancer Now has a booklet on what changes to look for in each area of the body breast cancer is likely to spread to.

Years ago they found that going once a year to see a Consultant didn’t improve life expectancy or change the course of the disease, so it wasted doctors’ and patients’ time.

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Thankyou for your response x I’ve chatted to a different BCN who advised the same thing. Appreciate you taking time to write back :slight_smile:

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It can seem a bit callous. I think we’re better supporting each other. I am very cheap as I am now retired, but I may not as professional!

So choose who you like and don’t worry all the time. My next door neighbour Abdul said to me “worry you die; don’t worry you die”

Unfortunately we all will go one day so live the best life you can and only worry for maybe ten minutes a day max.

So says auntie seagulls

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