I wasn’t quite sure what category to put this in, but I’m feeling pretty frustrated at the minute. I had surgery back in April to remove my tumour which was 40mm and I also an auxiliary node disection due to cancer being present in at least one node, it turned out to be in 3 of the 5 removed. I was told post surgery that I would likely need chemotherapy and radiotherapy. Today was my first appointment with the oncologist and I was expecting to be given my treatment plan. I know its preventative measures now but I feel like my life is on hold. It’s like having a big black cloud following you around waiting to find out what the next step is. I was told today that they still aren’t sure if I need chemo, so more waiting. They have decided to do the oncotype dx test to see if there are any benefits to me having it, I’m not sure why they didn’t request this sooner. They are also doing the blood test to see if I’m post menopausal, I have a congenital defect that means I’ve never had a period but can still go through the menopause, the oncologist wasn’t aware of my condition even though every time they as about my last period I tell them. I don’t want to make plans in case they can’t go ahead. I’m also really concerned about reoccurrence, I know its not necessarily genetic, but 3 generations of females in my family have had cancer, my gran had breast cancer and my mam had bowel cancer and now me. I can’t wait for this horrible journey to be over.
What was the type, grade and receptor status of your cancer? All important info. On the face of it a 40mm size with 3 lymph nodes would appear highly likley to require chemotherapy unless maybe a special type. Its difficult to understand the debate around it without that info.
I know I may sound silly but just enjoy your time now and go out and eat whatever you want as if you start chemotherapy it’s will be very hard and upsetting.
As lymp nodes involved maybe you will have chemotherapy I want to stop mine as it’s brutal because I will still have to do surgery and radiotherapy after.
Hi @entropy
It was invasive ductal carcinoma, grade 3, oestrogen positive.
Its pretty certain that chemo will be on the cards with a grade 3, stage 3 so I can understand your frustration at further tests causing a delay. It looks like they want to dot the i’s etc. Hopefully will only mean a couple, of weeks delay, which in the grand scheme is not thought to be significant. Do whatever helps to distact you from dwelling on it meantime.
I can really empathise.
I had a recall after my annual mammogram last December, followed by 2 biopsies. I was told I had DCIS, but as I’d previously had radiotherapy (15 years ago), I needed a mastectomy, which I had at the end of March. The pathology came back to show DCIS plus a grade 2 cancer. As this is a recurrence I had to have a CT scan, which showed a ‘wonky’ node. I then had to have a dine needle aspiration on the nose, which came back as positive. I’m now waiting for a PET scan.
It’s 7 months since my mammogram. I’ve gone from mastectomy but no more treatment. Then it was ‘you’ll need hormone blockers & Herceptin’. And now it is likely to be chemo, except I developed neuropathy after previous chemo, so oncologist is reluctant.
On top of this, I may need an op to remove the node, and my wound hasn’t healed after 10 weeks, so it’s likely that will need operating on again.
The whole thing has been a series of waiting. It’s like I’m being drip fed information, and it’s so frustrating.
@caroline_w_uk I’m so sorry to hear this, I hope you get sorted out soon. Xx