Neck glands

Hi

I have just been diagnosed with IBC, phase 3 which is also in my underarm lymphs. I go for my scans next week to determine staging, and as I have very tender neck glands, I am not clear if it has spread there or not. Assuming it had, would this be considered ‘secondaries’?

I thought last week it was just stress and imaginary, but realise my neck is getting worse. I know the armpit ones don’t count, but what about the neck and shoulder ones?

This looks like a very supportive thread, and although i am sorry to be joining this forum, i can already feel the comfort of hearing from other people in the same position.

Thanks.

Hi there

I’m not completely sure, but I believe once affected lymph nodes are above your collarbone, it’s considered to be secondary.

I seem to have very reactive lymph glands and they’re up and down all the time so I always seem to be having scans of suspicious nodes. I really hope you find that yours are just reactive rather than affected with cancer. I know that once I start poking mine, they begin to feel bruised.

xxx Jane

Hi Blackspotk and welcome to the BCC forums

In addition to the support you have here please feel free to call our helpline where you can talk through any concerns you have with one of our specialist nurses, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000.

I am posting a link to the BCC new diagnosis resource pack which you may find useful:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/

Take care
Lucy:

Thanks Jane and Lucy

This waiting is terrible. All last week I was waiting for confirmation it was IBC and this week it is waiting for scans and results to see how far it has spread. Seeing the onc on Thursday to organise chemo start date, so hopefully won’t be too long.

It appears that some people got started on chemo before bone scans and MRI results, and some had to wait. I just don’t know, but really want to start asap as my imagination is going bonkers on the speed of spread

thanks again, will keep checking in for tips from all your experiences.
Xx

Hi Blackspotk, I am not sure about the glands in your neck being secondary , I have secondaries in my lungs, but when I questioned about my lymph glands, underarm, I was told they sort of belonged to the general area of the breast so were n’t considered as secondaries. As for the scans I had Ct and bone scans prior to chemo, mainly because this determines the regime you are given, as I have secondaries I was given a chemo to deal with that particular secondary DX. I was diagnosed with secondaries at the same time as primary. Also I was told IBC is nearly always grade 3 due to the nature of this type of BC .I am sending you a hug and hope your treatment starts soon, you will feel happier when it does.
Jean x

Hi
I wish I could get this clarified. I was DX with primary BC (grade3 Invasive Ductal) and at the same time told the lump in my neck (a bit below my ear lobe) was metastatic BC - so no was no longer primary but advanced BC.
Apparently my situation was unusual as the nodes under my armpit were clear. Surgery was skipped and I went straight to chemo. The onc told me I could not be cured but it could be treated - so is this Secondaries?
I feel like I don’t belong in any category!
Linda
x

Linda, if you were told by your team that it is advanced BC then it is classed as secondaries,I was given the same information, that it was no longer curable but treatable when my lung mets were Dx.I think when they use the term metastatic BC it becomes stage 4.
Jean.

Thanks Tillybob
Its daft that I have to ask questions like this on the forum, but I always feel like the Onc and Onc nurse think I have enough information and don’t need any more clarification (it could be me just being paranoid about asking mind!)
Anyhow thank you again for taking the time to reply.

Linda