Just got back from fab holiday, not thinking about cancer at all to find letter from hospital with appt with surgeon. This will be a month post op. I think this isn’t good. I think they are going to say I need more surgery. The original tumour was bigger than they thought so bet they’ve done yet more tests and want to clear more margins. Such a pain as I’m all healed up and back to normal. Is this likely do you think or is it normal to see the surgeon a month afterwards. I think she said she’d see me in a few months time.
I don’t want to offer false hope, but I saw my surgeon a couple of weeks after the op so he could inspect his handiwork and tell me the outcome of the surgery, and the decision of the MDT meeting that morning as to further treatment - in my case just rads. If you haven’t already seen your surgeon post-op, then this appointment could just be a follow up as mine was? Finger crossed, anyway. xxxxx
Same as optimissy I had my apt with the surgeon 5 weeks post op to give me my results and confirm that I was going to rads.
Flyarcher I have everything crossed for you that it is confirmation everything is still on to rads. I know it is really difficult to do, but please try and keep your lovely holiday in your thoughts to counter the fear you are feeling. When is the apt?
Hi flyingarcher.
Have you tried ringing your bc nurse to see if she can give you any info? I had a ct scan last week but my follow up appointment isn’t until next Monday with the oncologist. My anxiety levels have been ridiculous. I decided to call my nurse this morning ( I could barely hold the phone) she looked at my scan results for me and gave me the results over the phone. Good news for a change. Phew.
Maybe yours will give you info over the phone. X
Sorry to hear you’re having such a hard time after a great holiday too. I really feel for you. Will be thinking of you tomorrow afternoon and keeping everything crossed. Xx
Flyingarcher this is the same as me. I need another op as tumour was bigger than they thought and although the healthy tissue they removed had no cancer cells in it they still want more! Not really what I was expecting to hear but she wants me to have the chemo first and then the op! X
As I thought, because the cancer was three times bigger than they thought, one of the margins wasn’t quite enough. She’sd cleared 0.5 mm rather than a complete mm so another op for next Thursday. It’s a smaller op for me but quite tricky for the surgeon as she has to fiddle about with just a small amount. I’m going to tell her to remove a bit more than she thinks because that is only still a tiny amount more and I am relatively generous of nork. Hey ho.
the big pain in the butt is that I don’t think they’ve sent off the oncotype sample yet. There is a new protocol in place which patients need to see the oncologist to see whether they’d go for chemo if that was tecommended. Recently they had someone flatly refuse chemo which was a bit of a surprise to all and a huge waste of £2,500. So this whole shennanigan isn’t going to be sorted before end of term which means I can’t plan for September. But as my husband has said, that is my school’s problem, not mine.
Sorry you have got to do it again! I had 2 ops…wish they got what they needed first time!
I asked yesterday if I was having an oncotype test and was told as there was a micromet on the sentinal node i didnt qualify apparently the NHS will only fund no lymph node involvement!
I am feeling really down today…haven’t even got dressed!
Hi sorry to hear you need second lot of surgery I thought I was going to but don’t however as for chemo yes, I. Confused about the Oncotype test thing alot of you have mentioned I’ve never been told this, I wonder if it’s down to where being treated and cancer type I’m triple negative I had my post op app last Wed and still haven’t got any app for oncology yet!! I’ve rang up and one hasn’t even been made yet! I’m 3 weeks post op really concerned as it was an aggressive grade 3 isn’t this waiting awful I know they are working their socks off behind the scenes for us all its just not being in control of the situation what is really getting to me!!! Xx
Sorry to hear you’re having to face more surgery but at least they’re taking no chances and getting it all out this time. I know the start of a new term is a kind of watershed. I have it in my own mind that I want to be right for then but chances are cancer might have a different idea. Try and let the work thing go (if you can) while you deal with this next phase of the journey. Sending strength x
I went through two surgeries, first lumpectomy at the end January, went back for results to be told there was a bit more tumour than they thought, unfortunately because of where the tumour was situated, they weren’t able to get enough healthy tissue around to check for clear margins, a mastectomy was then recommended, just to be sure, I was so upset, as my boob was healing up nicely and u could hardly even notice the scar. Anyway two weeks later had the op with immediate implant, was so pleased I had the implant, my new boob looks so perky! My results after mastectomy showed no more cancer on breast tissue, also nodes were clear, half way through chemo now, 3 more to go, then I’m all done! Tamoxifen a month after chemo.xx
Munchkin - so lovely to hear a positive story. I quite like my surgery boob now because she’s given it a lift. I don’t miss the nipple and husband says my scar looks like a smile! i just hope she gets a wide enough margin this time. If she doesn’t then I may just say do a mx.
sandra - I have a micromet on the sentinel lobe but they won’t do any more lymph removal. They only do the oncotype if certain markers are fulfilled and I fulfill all of them so it may be that it’s not suitable for your type of cancer ??? I think the horrible weather hasn’t helped today. It’s just been a meh day. My poor son had his gcse English retake today. From what he said,
I don’t hold out much hope of a pass. Hope tomorrow is better for you. Decided that work can look after itself and I will only do what I can do and after next Wednesday they will have to cope. Actually feeling calmer now. So will enjoy this moment until the next phase of stomach churning anxiety. I did have a bit of a chunter at the poor nurse about this roller coaster business.
Hi Lizzie
My cancer had gone into a blood vessel and splashed onto the sentinal node! It was getting a bit aggressive! It doesn’t mean it’s in my blood stream! Non vascular means it moves via the lymphatic system.
I believe the oncotype test has only recently been available on the NHS and for those who meet the criteria.
I will put my trust in my oncologist for giving me the best outcome!
Petrified of having chemo but whatever will be will be!
I think you are absolutely right about different treatment plans a thinking ‘why didn’t I have that?’ But the truth is, we don’t know each other. We are all different ages, sizes, lifestyles, breast density, ect ect. Loads and loads of variables so one size shouldn’t fit all. Even with the ladies I’ve met in the waiting room, we are all having different stuff.
am knackered having got back from work. Absolutely shattered. Sandra - it is exhausting so don’t go back too soon. Am looking forward to the anesthetic again???
I think the oncotype test is only used when there is no clear answer. It’s trust policy whether they include patients with lymh node involvement as I think you can have 1 or 2 nodes involved but no more. But they will probably say NHS policy as it is in your hospital. If I remember correctly it the people on the predict score thingy below 5%advantage but above 4%. I didn’t know about it until afterwards and I was borderline but opted to go for chemo so probably wasn’t mentioned.