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
Hi, how are you? I feel the same. Just been told I need to wait another 4 weeks post surgery (2 weeks ago) for oncotype DX test results. Found small cancer in lymph node. I expected radiotherapy but now I feel the black cloud continues and possible chemo … I’m so upset. Any advice welcome x
@amafoss65, like so many people have said the waiting is the worst part. I was lucky and managed to avoid chemo thanks to the onco test. I’ve just finished 15 rounds of radiotherapy which went really well. I had no side effects other than the excessive tiredness. Try to keep yourself busy while you wait by doing things you like.
That’s good to hear and you’ve got through this, well done! What a relief! Can I ask how long you waited to see your oncologist after the surgery and how long you waited for the oncotype dx results? 4 weeks seems horrendous and I will try and keep busy. I’m post menopausal and my cancer is ER+, HER- Thanks for your message. x
@amafoss65
I first saw the oncologist 8 weeks after surgery. I went expecting to be told if I would need chemo and radiotherapy which had been suggested. At that appointment they decided to do the oncotype dx, I was so frustrated with more waiting. Due to a congenital defect there are no obvious signs if I’ve been through the menopause. Apparently the blood test they did showed I have, which I’m impressed with coz I’ve never had a hormone test that has been in the right range for anything. I had to wait a further 2 weeks for the dx results. Although it seems like you are waiting forever at the same time it seems like no time at all. I can’t believe I started this journey back in February.
Oh wow, that’s a long wait. I totally get it. I was first seen by my GP on 17 April and then had delayed surgery 2 weeks ago. Assuming I have to wait another 4 weeks minimum. I wish I could run away! I think I’m going to get some activities arranged to keep my mind busy. All the best!