Forum Discussion

TannieT's avatar
TannieT
Member
21 days ago

Post surgery / cancer follow up.

Not sure where to write this one! If anyone has suggestion on where please let me know and I'll put it in there.

So I have had a shockingly bad journey. TNBC. Stage 2-3 when started...so they said. Long story....Finally culminating in a Left Mastectomy. Histology shows they definitely got it all and there was NO lymph node involvement. But I can never have Chemo again. And I can't have Radium anywhere on my left side as I had to have a ICD Internal Cardiac defibrillator implanted. SO...in terms of cancers? No more treatment options for me really. And according to what they say? I have no greater chance of my cancer reoccurring than risk of cancer generally. Don't really believe this, but they got it as well as it can be done.

Because of my Heart problems and Sarcoidosis. I will have another PET scan end of Feb 2026.  Ordered by my Immunologist. Then hopefully if all is well? That should be it. Probably yearly visit to Cardiologist for a few years with him doing Cardiac Echo's.

I have a good GP.

So...I see no point in going back and seeing the Oncologist. There's nothing more the oncologist needs to do for me that I can think of.  And I'm very pissed off at her. I think she was negligent and all that happened is because she was not monitoring my Chemo closely enough. I should not have gotten to where I got to and I should not have nearly died.

So, I'm wondering? What is the usual post cancer follow up process? Who do people see and what tests in what time frame is done? Do you have regular PET Scans? MRIs or what? And who generally orders these tests? How often do you have follow up appts and with whom?

I am wondering if I just find another Oncologist if it's the oncologist I am supposed to continue to follow up with.

Anyone shed any light on this?

post surgery

2 Replies

  • TannieT's avatar
    TannieT
    Member
    20 days ago

    Thank you. I think I will just see my Cardiologist and Immunologist and GP. My Immunologist has ordered a Pet Scan for March and the Cardiologist will be doing an Echol then too....so between them and my GP? I think I will be fine. I was just mostly unsure if I needed PET scans or MRI's and who ordered them? But seems not and my priorities now are getting the Sarcoidosis sorted and my heart as fixed as it can be. The cancer is low on priorities. Because the breast histology after the mastectomy showed it had not spread at all.  Not even into sentinel Lymph nodes. It seems it was not spreading at all yet. So from reading the report? They got it all. And from what I can work out? I am at no more risk of getting TNBC again than anyone of getting it. I of course, remain nervous about cancer overall....but I can't let that rule my life. If I get cancer again? I will probably just have to let myself die as they never want to attempt Chemo on me again and if it's anywhere near my ICD? Radium is not an option anyway. So - that's life. I guess we all have to die sometime. And I have had a pretty good life. So I have to be happy with what I've done and achieved.

  • Christina_BCNA's avatar
    Christina_BCNA
    Community Manager
    20 days ago

    Hi TannieT​ thank you for sharing your story so openly. Managing TNBC alongside heart issues and sarcoidosis is a lot for anyone to carry. It’s completely understandable to feel frustrated and uncertain about what comes next, especially after such a challenging journey and feeling let down by your oncologist. These two articles here might be useful to you, they outline what you can typically expect in terms of cancer follow up care. It might be good for you to think about how your current plan compares;

    👉 BCNA: When you finish active treatment

    👉 BCNA: Follow-up care after treatment

    If you feel your oncologist isn't providing you with the right level of care, you absolutely have the right to seek a second opinion or switch to a different specialist as others have chosen to do. Whichever would bring you more peace of mind. ✨ Please reach out to us if you need to chat further on 1800 500 258.