I am new here. I have been reading all your post over the last few days and it has brought me so much calmness. So thank you x
I am 32 recently diagnosed with DC Hormones positive breast cancer. When they did the surgery they realised there was two tumours. However, the whole time they have said my lymph nodes look great. They have not been swollen and been at the correct margins.
I had a sentinel biopsy completed, when I had surgery. It has come back positive for cancer cells. Which everyone is surprised by.
I have now gone for a pet scan and will get results on Monday. As you could all imagine I am pretty scared.
I am just wondering has this happened to anyone? And the Pet scan been clear. Would love to hear your stories.
@hello133
I was diagnosed ER and PR+ HER2- two tumours and no signs of lymph involvement, then after mastectomy told three tumours and positive sentinel. I had full axillary clearance which found 1 more but chest, pelvic, abdominal CT all negative. I convinced myself it had spread, every ache and niggle suggested that, but it was my panic and imagination thankfully.
It’s so hard at this point building the picture and things change I’m afraid.
I understand until you hear those words ‘clear’ you’ll be worried. Good luck and fingers crossed for you.
X
I had a wle for a 16mm Idc, lymph nodes all looked ok on ultrasound, it was found in the two removed at the snb, went back for full axillary clearance and they were all clear. I didn’t have any other scans as they said they weren’t needed. I’m now waiting for radiotherapy
Hi, I was also reassured by the radiographer and breast surgeon, before surgery, that my lymph nodes looked completely clear. But the two sentinel nodes taken with my mastectomy both showed cancer. I was then sent for a CT scan which was clear. I had axillary clearance which showed a few individual cancer cells in a third node, but the other 20-odd nodes were all clear. I think waiting for the scan results was the worst part of my diagnosis so really sympathise! Best of luck xx
Hello, sorry that you find yourself here. I was in a similar position of having normal nodes on scans only to find after surgery that sentinel nodes were positive. I had a CT scan after that which was clear. The consultant did say he wasn’t expecting anything to show up on the CT but that didn’t stop me worrying and the wait for the results was horrendous. I later had axillary clearance and no other positive nodes were found. Hope all goes well for you.
Hi there,
I am due to have a full ancillary clearance as they found one node in a biopsy. This was following an Mx two years ago. Back here again! I am pr and er + and her negative.
After this did you do chemo and how was op for the removal? Is your arm ok?
Thanks
Hi, sorry to hear you’re back again! I was also er/pr positive and her negative. I did have chemo after removal (EC and paclitaxel), though I was offered the chance to go on the Optima trial which would have given me a 50% chance of having my oncotype tested and the possibility of no chemo. However by then there had been some delays to my treatment, and I didn’t want further delay so decided just to get on with chemo.
The axillary clearance op was fine, in and out of hospital the same day, no pain. My surgeon doesn’t use drains for ax clearance which was great. I do have a scar going under my arm though. I was careful to do the exercises and did experience cording which cleared up with stretching. Also avoided lifting heavy things for a few months. But it never stopped me doing anything else and hasn’t caused any problems. Best wishes x
Thanks for this, very helpful. I was wondering where they would cut alright. I am having the drains which are a pain in the next alright. You were out very fast I am in for two days. Hopefully will be a speedy recovery. And then the hard part starts! Did you do the cold cap?
Hi, yes I cold capped but to be honest it didn’t work brilliantly for me. I never went bald but I probably lost around 70% of my hair in the end, though it did grow back quickly and thickly. If you cold cap I hope it works better for you!
@SL255
Hi,
My surgeon didn’t use drains for mastectomy or clearance which was good. I was first on the list for op and out just after lunch. No pain relief needed. Hardest bit was stretching/getting full range of movement-persevere with the exercises!
I found a squishy pillow nice to rest my arm on, covered in bamboo which is really soft and cool.
I then had 6 chemo, 3EC and 3 Docetaxel. Not nice but doable, then 15 radiotherapy. Finished it this time last year and now just abemaciclib, bisphosphonates and anastrazole to try prevent it coming back or at least delay its return
Some days you don’t know if you’ll manage to get thro it and somehow you always do.
Hold on in there-you do eventually get there and out the other side
Just jumping on here with a similar question. I have a positive sentinel node. They only took 1 and it had 4mm in it
Having axillary clearance next week. Wondering if I will have to have chemo or not? I like to prepare. I keep reading contradictory info and going round in circles. Any advice welcome.
I don’t think you will actually know either way for sure until they have the results of your clearance.
Like you I wanted to prepare myself but as you know things change all the time, I’m sure you will be given plenty of time to prepare yourself when you know what the next step is going to be.
Try not to overthink things at this stage (which I know is extremely difficult, much easier said than done)
