Invasive ducal ca with extra capsular lymph node involvement...Scared....

Many of us are indeed in the same boat, Look here ...

Regarding covid, yeah. That's standard protocol, and I hope you test negative really fast!

You may well be entitled to the covid treatment they are offering people in certain medical situations. Have you had a letter or message from the NHS about this? If not, ask your nurse but also call 119. If I remember right, treatment should be given within 5 days, so best check now.

I hope they arrange all the necessary scans and tests fast, and come back with reassuring answers soon after that.

Back to what people say, there are different ways to deal with it. Some people need to be told gently, some need the message hammered home. For the sake of your well-being, it has to stop. How have you been dealing with it so far?

Hi there, 

Did they know that it was your nodes before surgery? They might be mentioning possibility of spread because it's in your nodes rather than it having extra capsular spread? Also did they not get clear margins (quite common) if they are taking more breast tissue? 

I was initially told my nodes were clear as the mammograms and ultrasounds looked that way but one of my two sentinels was positive.  I had CT, nuclear bone and MRI scans which were all clear, and my level 3 clearance found that all my nodes were clear apart from the original one.  It's a scary time and oncologists and surgeons sometimes forget that when giving pathology results! Did they give any other details like grade,  number of nodes LVI, etc? That will all be part of working out your treatment. 

Fingers crossed you have an easy time with covid and test negative quickly:)

Hello...thanks for your reply.I had a wide excision and snb 3 weeks ago.They said I had 1/4 lymph nodes positive with extra capsular spread.I was booked in for next Thursday to have further wide excision which must  be as you say as they didn’t get the margins.I’m also having an axillary clearance.I asked the consultant and the BCN whether it could have gone elsewhere in the body and they said it’s a possibility.they said my NPI is 5 which is higher than they would like it to be .The stage the surgeon said was stage 3 but the BCN said the breast tumour was stage 1 and the spread in my lymph node stage 3.I am so confused to be honest.Yes I think you’re right that they forget how scary it is....Thanks so much for your reply.Are you ok now ? 

Londonmumof2 said:

I was initially told my nodes were clear as the mammograms and ultrasounds looked that way but one of my two sentinels was positive.

I had exactly the opposite experience. My lymph nodes looked a little suspicious under ultrasound, but the biopsies on them came clear and so did the sentinel and the one right next to it.

These things do happen, and are proof that scans are a good, but not a definitive, tool.

Notts67 said:

BCN said the breast tumour was stage 1 and the spread in my lymph node stage 3

The BCN was based on size and location of the breast tumour. Here is the NHS explanation of stages.

Hello..thanks for your reply.I am a people pleaser I think and haven’t liked to say anything but maybe I need to be a bit more selfish and tell them how I’m feeling .Sending my best wishes to you :)

Hi Notts67

I had the same thought it would be surgery then radiotherapy. But it all escalated. I had all lymph nodes out with lumpectomy. There was 19 out of 24 with cancer, so glad they had all gone! Extra surgery for better margins all ok. Chemo then radiotherapy. I had lots of scary scans aswell, including a PET scan. This was nearly 3 years ago. 

One step at a time

Best wishes

Xxx 

Just come across this posting after having my histology results following single mastectomy and reconstruction. I thought the same as you that I was going to get my results and be told maybe some radio but 1 of the 5 sentinel nodes removed had cancer. At the point of being told this I had a bit of a meltdown and everything else is a bit blurred but my husband told me that apparently the cancer was on the outside of the capsule of the lymph node. I'm now booked in for ancillary node clearance next week and have had a CT scan last Sunday for staging purposes. 

To say I'm petrified is an understatement. I've gone from being told all along that I caught it early and no sign of lymph node involvement AND that my cancer type isn't aggressive due to it being Grade 2 ER/PR+ and HER2- to now feeling very strongly that I'm about to be diagnosed from Stage 1 to Stage 4. 

Something similar happened to me. I was scared too and the waiting is hard. My scan was clear in the end. I found talking to the macmillan helpline really useful. Somehow saying what scared me helped, even though there are no answers without the results. Really hoping your scan is clear too x

I'm in the same situation, and absolutely terrified. I had two small lumps removed almost five weeks ago, operation went well and recovering well. I'd had three enlarged nodes - first biopsy negative, second one positive, so had node clearance too. They removed 24 nodes, and have said 'multiple' were positive. I didn't want to know how many as I'm so scared already. Starting chemotherapy in the next couple of weeks (terrified again), and have to have a CT scan to check for spread and not handling things well at all. I'm devastated, scared stiff, can't sleep, and was doing so well with my recovery and exercises. I've pretty much not stopped shaking since I met with the oncologist on Thursday, in a right state. 

I've lots of support but really struggling at the moment and finding it difficult to stay positive.