Third Recurrance in 3 Years

Here i go again, my third regional recurrance in 3 years. Found another small lump in my neck very close to previous ones over last 3 years for which I have had 2 lots of chemo -one intensive last year. I also had surgery and radiotherapy last year.Original treatment was wide local incision with axillary clearance, then chemo and radiotherapy 6 years ago.
I have a week of scans to see if it has spread, CT,MRI, and bone. If all Ok i then go and see ENT surgeon so that he can do a major op on my neck to clear more nodes, as my breast surgeon recons it is too tricky an op for him to do.
Has anyone else had a similat experience?

Marmite

Hi Marmite,

Yes similar, but different!! I had a lot of lumps come up in my neck and collarbone but my oncs attitude was quite different. He chose to keep a watchful eye at first (I had had rather a lot of different chemos prior to that so they wanted to keep further chemos in reserve) and checked that there had not been further spread i.e. bones, organs etc. About a year after they started - in fact when they were trying to do a biopsy - I ended up with sciatica and it was discovered I had extensive bone mets. 2 different lots of chemos checked the lumps but they returned each time I finished a course. It was at that point they discovered I was her2+++ and I went on to herceptin. All the neck/collarbone lumps went within the first week! and it is now almost 4 years on with no further recurrence. They did at one point consider radiotherapy but previous treatments for 2 mastectomies meant they had covered the areas already so couldnt do more rads. Initially the damage from the lumps caused scar tissue and made movement of my head to one side almost impossible - it also affected the nerve to my eye and I ended up with horners syndrome (drooping eyelid & pupil that doesnt dilate properly.

I have read on here of others who have had these lumps excised - I wonder why there is such a different approach.

dawnhc

Thanks for your comments Dawn
They didn’t exercise my first lump in 2005 but gave me taxotare and capecitebine which made the lump shrink but it or another close by came back in 4 months last year, so that time I had surgery, intensive chemo (every 2 weeks) backed up with injections to boost my white cell count and more radiotherapy to my neck which only finished in May and here we go again. I am very positive (or maybe in denial) about the possible spread, but should know the answer to that very soon. I am fortunate that I have private medical insurance and my consultant is a lovely man who always phones me with the results as soon as he can.
I think he wants to keep back further chemos in case of spread and I haven,t had a hair cut since summer 2005 and my hair is still only about 2 inches long!
I am fairly phylisophical about the whole thing and an well aware it is probibly only a matter of time before it does spread, but keep in my head that breast cancer is a chronic desease and I still have quite a few years left
Marmite

I was diagnosed with regional recurrence in April…spread in supraclavicular nodes and throughout chest wall. Told(by 2 oncologists) I couldn’t have surgery (too difficult to remove all the cnacer) or radiotherapy (had it in that area at primary diagnosis.) Have just had 6 cycles of vinorilbine and oral xeloda and still on xeloda as ‘maintenance.’ As I’m triple neagtive I feel like I’m running out of ioptions. What’s left is gemzar, carboplatin/cisplatin, possibly taxol (had taxotere already) and back to an anthracycline (in pegalated form whatever that is)

Recent CT scan showed the 6 cycles had made most of the tumours disappear and I have no evidnce of spread elsewhere but have been clearly told the recurrence isn’t curable and that it will spread.

When I was first re diagnosed someone on these forums did tell me about a surgeon doing experimental surgery on chest wall tumours but didn’t fancy following it up. At the moment just relieved not to be on heavy chemo and don’t know if I can face any more…expect I will cause that’s what most people do.

Marmite…hope your scans show no spread yet. best wishes

Jane

Thanks Jane,have read several of your posts.
I an triple neg as well. All of my scans were clear which is great but I know they think it is highly likely it will spread. I have had all the chemos I can have in an adjuvent setting and my oncologist wants to hold back the ones which are more suitable for distant spread. So my only choice is surgery a neck resection.the internal mammery nodes are clear. I am to have surgery later this month. My husband is having a big do for his 60th on the 17th so to ensure I am well enough for the party my surgery will be after this, but do not have a date yet.
Very exciting going to have my hair cut(actually just tidied, not long enough for a cut) and maybe a little colour. Both taxotare and then taxol in the past 2 years have taken a real toll on my hair now about 2 " long and I finishe chemo at end of Feb!
They say surgery will be tricky because of the radiotherapy I have had, only finished it in May.
Best of luck
Marmite

Dear Marmite, Jane and Dawn - Just have to write to you all because you sound such brave and wonderful women. This is just horrid isn’t it, the way you go through treatment and then something else can come along. I always think, well, we can’t control what actually happens to our bodies, but the one thing we do have control over is how we individually respond to what is happening. If you can always keep realistic hope by your side, and take each and every day as it comes that must help so much. I have no idea of course what is down the line for me, but I will always keep people like you in my mind. Please add my cyber hugs to the hundreds others I am sure you are receiving. Lots of love Sarah xx

Hello there.

Just sent mssg to seabird. Had lump in breast 10 years ago. Chemo reds and mastectomy. Never thought for one minute it would ever return.

I had a fall last Xmas and was in pain for months. Then discovered a lump in my neck. Had biopsy which was suspicious. A bone scan reveal that it had returned in my neck, ribs and spine. Had rads on back tamoxifen again, bone strengthening drugs each month.

Had a CT scan on my neck about a month ago as getting a lot of pain. Results were good in fact they said that it was better than the last one I had when the lump was there.

So relaxed abit getting on keeping busy. Then on Friday eve I discovered another lump in the same area as before.

Feeling very anxious rang the hospital this mrng and after a bit of a battle managed to be put on the start of tomorrows clinic.

I have got my monthly IV treatment on 14th and she wanted me to wait til then. 11 days may not seem long but when something happens like this it felt like an eternity.

Enjoy your party and take care.