Nodes were clear, now aren't....help!!

[Hilly1]

Yes, Mateface67 it is very disheartening to go through chemo and MX hoping it's doing its job only to discover the horrid cancer cells are still there, they're devious things, hiding away.
I had my RADS planning appointment yesterday and everyone seemed very positive and made me feel much better, I thought RADS targetted a very small bit but the radiographer told me its much it's a bigger target area than I thought which is reassuring. RADS will be to chest wall and neck. I'm due to start on 15th Aug for 15 sessions, it does wreck the rest of the summer hols (OH is a teacher and son is 13) but they understand how anxious I am to get on with it.
Kathryn

[Mateface67]

Very similar situation to you. Had a mastectomy three weeks ago following 7 rounds of chemo as I had a 4.5 cm tumour they wanted to shrink. We knew lymph nodes were involvbut and the chemo did have some effecon them. Had MRI just before surgery which showed that the tumour had all but gone but when I got the pathology report it turns out there was still 2cm of tumour there and 5 out of 7 lymph nodes still cancerous. It was very disheartening to realise that the chemo had only had a "moderate" impact on the cancer and like you I am left wondering how many of the lymph nodes he didn't take out are cancerous. It's been nearly 4 weeks since the op and I am desperate to start the rads. Have appointment to see surgeon and will ask him about the pathoLogy report then.

[Ali_H]

Bumped for Janet462 xx

[Ali_H]

My lump was big too Kathryn, it's nice (despite the tenderness, ouch!) to not be able to feel anything there now, just a smooth implant 🙂

[Hilly1]

I'd like to join this thread as it's just what I've been worrying about a lot.
I had MX on 9th July after 6 lots of chemo (3x fec and 3 x Tax) lymph node was positive on FNA in Jan so hoping that chemo would deal with it as well as shrink lump which was big (7cms) But after path results on 19th July 6 out of 8 nodes were still affected. ONC seemed OK with this and has discussed RADS to chest wall and neck area with me. I was very disappointed as throughout chemo the nodes had shrunk right down on MRI scans and the last scan showed little enlargement and was really hoping they'd be all clear. I keep thinking about those stray cells and want to get on with RADS to hopefully kill them off. I'm on Tamoxifen and will have my ovaries suppressed as my cancer is oestrogen receptive.
Still feeling quite tender after MX but keen to keep up with exercises so can get on with RADS.
Kathryn

[Ali_H]

Janet462 that's a good point, I feel vulnerable at times and that was certainly one of them..!

[Janet462]

Hello can relate although different situation, had mastectomy in january with 7 lymph nodes removed, 3 were cancerous, then had 6 sessions of FEC and two weeks ago axillary clearance. This showed 7 of these showed cancer, thought all would be clear after the chemo, so quite disappointed. Now for radiotherapy and have started hormone therapy. Feeling well but like you consultant seemed fine about it and it left me wondering. I am sure just having a blip, we are very vulnerable.

[hatty]

I was her 2 positive presumed breast cancer. My nodes well one was 2cm and there were a few more involved.We will never know how many nodes were involved as i had a complete response to the chemo. By the time i had second chemo the node had nearly gone back to normal i had 6 fec t lymph nodes all removed and radiotherapy plus herceptin 18 months of treatment . kept my breast as we never found the primary and no point losing something if there is nothing there and of course it may not even have been the breast but i was offered a masectomy. They keep a very close eye on me always looking for a primary but i had a complete response on all counts and in full remission. I was diagnosed July 2010.
Southpool feel free to mail me.

[southpool]

Hatty,

I was also cancer only in nodes & you are the first person I have encountered with the same unusual presentation. You have heartened me that all is well 2 years on. Did you have mastectomy. I had one 4cm node, 1 other node with mets & 2 with micro mets out of 22. Only very small area of DCIS found in pathology after mastectomy & all other scans clear. Am 5 out 6 fec-t complete and will be having 20 rads & Tamaxifon

Sorry to hijack the thread but pleased to hear from someone else with my unusual presentation.
S x

[Ali_H]

Thank you, have decided not to fret about it... 🙂

[hatty]

I only had cancer in my lymph nodes as i was cancer of unknown primary treated as breast. I had my nodes removed and Herceptin, chemo and rads still here that was back in 2010 and still in remission, i suspect all will be well. Good luck.

[Sam_BCC]

Hi Ali

Firstly welcome to the BCC forums, I hope you will find them a great source of support and information.

As well as the support you are receiving here, it might help to talk things through with a trained member of staff on our helpline. Here you can share your concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

[Ali_H]

Thanks Boo! I've been glued to this forum for hours,reading lots of useful stuff and relating to so much of it. It's a relief when someone says they've had the same worry as you.... it really does seem you just have to go with it and keep faith with yourself.

[Boo]

Hi Ali
I was in a similar situation as you in 2009. I had needle tests done of a couple of nodes and was told they were clear. I had the masectomy before chemo, had sentinal node biopsy done in surgery and was told they were clear. When the results came back I had micro mets in 3/11 nodes. I was totally devastated at the time and for some time after, but now three years on I have to say it doesn't really matter. Sadly this disease is very unpredictable and although no lymph node involvement is the best prognosis it doesn't always follow. My Onc told me about a lady who had 22/22 nodes with mets in them and she is still alive and well 10 years on, yet I know a personal friend who had clear nodes and it still spread and she sadly passed away a few years later. I think you have to put the trust in the professionals to do the treatment they feel is best for you and then get back on with your life and try to believe it has gone. That's what I do, and I have a pretty happy life that feels almost normal again! All the best with the rest of your treatment and recovery. Boo xx

[Ali_H]

Thank you RevCat, I think I'm just having one of those moments... I blithely imagined that after the horrors of chemo - which shrunk my tumour dramatically- it would still be clear. My surgeon also said the report stated evidence of chemo changed cells there too, so it does sound like those amazing drugs did their job. I'm back in a fortnight to see him again and have dressings removed, now I've found this site I can be prepared in advance as to what to ask him.
Glad to hear life is good for you again now, and thanks again for replying!
:)

[RevCat]

Hi Ali,

so sorry you have had to join the club no-one wants to join.

I can relate to what you are saying, at least in part. I was told at diagnosis (dx) that I had one enlarged lymph node. I had chemo (FEC-T) then a mastectomy and lymph node clearance. The pathology showed three affected nodes.

You ask if this is 'bad' and I suppose the answer is 'yes and no'- obviously we would prefer not to have any cancer in our lymph nodes, but if there is, then it actually shows they've done their job of stopping the nasty cells getting any further. The anantomy and physiology is complex, but basically most people have some sentinel lymph nodes, so-called because they act as sentinels or guards to catch any stray cells before they could escape and go elsewhere. If they find cancer in sentinel nodes they will often/usually take all the nodes away and check them too.

Many hospitals give rads to people with lymph node invovlemnt - I had three field rads, much as you describe, and my onc was quite clear that this was precautionary in case there were any stray cells which could not be detected otherwise.

I am now a year on from the end of treatment and fit and well, enjoying life and generally happy. Hopefully the same will be so for you.

If you are worried, then maybe either speak to your breast nurse or try the helpline here - they are excellent.

Take care and hope you get some reassurance soon.

[Ali_H]

Just found this site thanks to leaflets in my hospital package... Can anyone relate to this? When I was diagnosed with BC in jan a biopsy revealed clear lymph nodes. I've since had chemo (FEC T and Avastin) and two weeks ago mastectomy and implant, the results from the lymph nodes taken at that time (4 I think?) now show cancer cells there. My surgeon is telling me this with a smiley face, saying I will probably have rads to breast, armpit and shoulder. So I've come away very confused...surely cancer cells in lymph is bad????