Sentinel node positive

Hi Alice,  I have just recently finished my active treatment for grade 3 oestrogen positive IDC.   I had a WLE and axillary node clearance  followed by chemo and rads.  I had 5 of 15 nodes positive.  I am on 10yrs of Tamoxifen /Letrazole and soon to start 6mthly bisphosphonates.   I too  was offerred a clinical trial at the beg of treatment which meant that I may have escaped chemo, but as I had just lost my husband to lung cancer and with 2 teenage boys, I needed belt and braces treatment.  I felt I couldn't risk them saying at the end of the trial that I would have benefited from chemo.

I am now on another trial and have been randomised into a group to take tablets that may help recurrence. 

Should you need chemo and rads there will be plenty of support on here for you and although scary now, it is doable and you will get through it.

I wish I could tell you not to worry about possible spread, but that would be impossible.   The only thing I can say is that hopefully your sentinel nodes will have done their job in helping to prevent any spread.  

I would urge you only to look on reputable web sites if you read up on the Internet such as Macmillan and Cancer Research.  Do try to take things one day at a time until you know for sure what you will be dealing with and I know first hand that that is easier said than done.  

Do let us know how you get on and remember that we're here for you.

Gail x

Hi All i can suggest is you ring your breast care nurse on Monday and ask her if she knows what they meant when they said it makes it more complicated. Don't take it that because they say its more complicated that the outcome will be any different it may be something like they need to change your treatment plan.

I was told mine was going to be easy to get rid of but it had other ideas and it wasn't as plain sailing as first thought but i still got the all clear a couple of weeks ago. I say i took the scenic route instead of the motorway. As long as you get to the same destination then all's good.

By me replying on here it will bump it back up to the top so hopefully someone else will be along with a reply soon, who knows better than me. But you should definitely ring your breast care nurse she might be able to put your mind at rest xx

Having positive nodes does mean more treatment, as you'll need surgery or at least radiotherapy on them depending on what the sentinel nodes had. You'll probably have some scans (I had a bone scan and a couple of CT scans followed by a liver MRI one) for staging as well which I found scary, but to the breast team is just routine. . About a third of women are node positive so it's not something unusual, just means more (not so great !) treatment.  I had a level 1 and 2 node clearance yesterday so have the dreaded bottle again and a stiff arm, and looking at my letter unexpectedly given TARGIT (which I thought was only for lumpectomies) as well.

Hi Pmess, What trial are you taking part in? Is it a new drug or new combination?

Hi Londonmumof2,

I'm taking Abemaciclib which is currently successfully  used to help patients who already have mets.  This trial is to see if it helps prevent reoccurrence in people with early stage breast cancer.  As I was node positive and with the recent history of losing my hubby, it's been a no brainer for me.  Obviously means more trips/tests etc, but on plus side, I feel less like I have been left on a cliff edge after treatment. 

Gail x

Hi

Thank you so much for your reply. 

The trail is POSNOC it’s effectively to determine weather Axillary clearance is still necessary. I believe that America has determined that clearance compared to adjuvant therapy alone are both as effective long term. I’m not sure at this stage if any new drugs are used but i will let you know.

I hope your recovery is speedy.

Its the Unknown which makes this journey so challenging.

Alice M

Thank you so much for your reply.

I will call the breast care nurse on Monday.

Congratulations on getting the all clear .

Thank you

Alice M

Hi Gail

Thank you so much for you reply .

Im sorry to hear that you lost your husband to this horrible disease but you sound strong in your resolve to beat this !

It’s great to speak with women who have been through treatment. 

Your words have given my great comfort .

Thank you

Alice M

(duplicate post)

I saw the POSNOC trial,  if you're taking part in it then it would suggest that you have micro-mets on your node/s. There's a lot of evidence in Europe and the USA to support that, so lucky you:))

 I don't know the results from my clearance yet,  but the one which was  positive was too big for that trial or the other opton of radiotherapy alone. I'm still surprised to have been given TARGIT, where a small ball is inserted during surgery (usually into a lumpectomy) to give the radiotherapy as a one-off treatment instead of 20+ daily external ones, and with better results and fewer side effects.   The doctor who invented it works at my hospital, but I wasn't aware of it being used on the nodes before,  so it was a pleasant surprise (in as much as radiotherapy can be!)

Good luck with your treatment. Are you going straight to the AI tablets (like Letrozole), or do you need any other treatment first like radiotherapy? X

Hi Alice,

It depends on the size of the cancer in the Lymph Nodes and how many are involved, if the cancer is up to 2mm in the nodes then they are considered micro-mets.