Dear All,
I have been diagnosed with BC stage 4 febr. 2017,spread to mutliple lymphnodes ,questionmark liver
had 6 cycles of chemo,than ongoing immunotherapy herceptin and perjeta every 3 weeks and hormon treatment to get into menopause. two pet scans were fine but the last one 2 weeks ago flagged one axillary lymphnode up and there was another questionmark about glenoid bone in shoulder although this has currently been dismissed by my oncologist. had lymphnode biospy yesterday if results bad than oncologist talks about adding a another chemo drug to the 3 weekly immunotherapy.
I guess my question is why was surgery like breast amputation and lymphnodes removal never considered.
Is it just “not worth it” as stage 4 means I am buggered anyway?
regarding the questionmark in glenoid bone mri to verify was briefly discussed but I again had the impression they won’t really consider it as I am doomed anyway and won’t make a difference.
when I had the lymphnode biopsy yesterday there was now talk about removing them I and wonder why this wasn’t considered in the first place.
I feel very scared and angry at the same time.so fed up and struggling to stay positive.
I am still working,trying to stay fit and feel physicaly good although always a bit tired . but since the last pet scan findings struggle to keep up a brave positive attitude .
I have not told my partner about the recent development and find it harder to tell the longer I wait.
sorry for this long post any advice would be very much welcolmed.
I never thought that I would be posting here as I am very much a “just get on with things” person and usualy fight through things on my own but I am struggling now.
thank you for reading this
Katja
Hi ww, as far as I’m aware, if you’re diagnosed stage 4 surgery to remove the primary isn’t usually done. Regarding lymph nodes, I was told at diagnosis they wouldn’t remove them at that stage but if things stabilised it was a possibility to ‘de bulk’ in the future. Following my next scan I did see the surgeon again and we discussed this but didn’t think it was in my best interests, and I fully agreed, because the lumpy area in my axilla had reduced so much it didn’t seem worthwhile, as the surgery would have only been to remove that and not a clearance as such. Also, I’d read about leaving well alone, so to speak, I definitely didn’t want the risk of oedema and my surgeon agreed with that in my case. Hope this makes sense?? Kxx
Hi ww and sorry to have to find yourself in the secondaries part of the forum, as well as being anxious from your last scan. It’s not easy getting your head around a secondary diagnosis and some of us cope quicker than others but I think almost all of us have a wobble when we get unexpected scan results or are told things we hadn’t expected. I’ve had several ‘curve balls’thrown at me over the years and it can be very unnerving as you can cope with what you know and what you expect but not the scenarios that you didn’t think about. Take time to adjust and maybe jot down any questions you might have for your oncologist that have come up since the last meeting, I always forget to aske something especially when the appointment has gone differently to the way I thought it would.
As to surgery for a primary (after a secondary diagnosis) there seems to be a general trend to not remove the primary, however it’s not always the case and there’s no set rules as such so if it’s something you want to happen you should also discuss this with your oncologist. In general though surgery is performed when the secondaries are stable and therefore responding well to treatment. Also, if you are on chemotherapy you would need to stop this to allow your immune system time to recover both before and after surgery. This is taken into account as a long period with no treatment is not good as the secondaries can progress. However I don’t know what the case is with H and P (I was on it a year or so ago so know what they are), again you’d have to discuss this with your oncologist. Any treatment you are on is treating the body systemically therefore it should be reducing the primary at the same time as reducing the secondaries. My bone mets were found on a scan after I had a local recurrence. The planned mastectomy didn’t happen and over the years (this was 10 years ago) the recurrence doesn’t appear on any scans so all the treatments I have had have worked on that as well as my bone (and now liver) mets.
I hope this helps.
Nicky x
Dear Nicky and Kate,
thank you both for taking the time to reply it does mean a lot to me and helps me to understand the situation better.
will write a list of questions for the next meeting with my oncologist.
I know this is probably a stupid question but does stage 4 automatically mean a very short survival time?
thank you again
Katja
Thank you both so much again for your replies.
it is so difficult to come to terms with this diagnose and situation. sometimes I am just so fed up by it all and just want it to go away.
also thak you for the virtual hug!
Katja
hi Katja,
I too have stage 4 lymphoma, originally with liver tumours also.
Like you, I also questioned the non-surgical stance, and also like you I usually just ‘get on with things’! and was surprised to find myself resorting to posting anywhere, I saw it as a weakness.
This is how I view what I found out- No, we’re not written off. If you have a tumour and its surgically removed along with adjoining tissue its hopeful the tumour won’t return.
When its in the lymph nodes its more a case of controlling it. The ethics of Surgery are ‘to remove disease and ease pain’ but once in multiple lymph nodes it can’t be removed (often because they’re impossible to reach) and I don’t know about you, but they don’t cause me much pain. So they’re treated pretty much systemically.
As for partners, I’ve discovered that they’re as worried as we are but more frightened to admit it. Sharing your news may well be a relief for them as they can stop imagining and have something to deal with.
This group is a good support network for us gritty people, so use it and lean on it. We’re here for you, we understand exactly where you’re coming from and we’re all shoveling the same poo 
Kindest wishes, please let us know how you get on
xx
My lung mets were discovered the day before my planned mastectomy in February 2013. My Consultant still said to go ahead with the surgery as he said it would give me the best chance. I am well and active and have just had another stable scan on Kadcyla. It will be 6 years in July since my primary diagnosis, never feel you are doomed there are lots of options ahead of you x
Thank you all again for your replies!
the lympnode biopsy results are back and shows that for whatever reasons this one lymphnode has active cancer cells so I am sheduled now for axillary clearance surgery on monday next week. the surgeon thinks t’s better to take them all now rather than having to repeat surgeries in the future. also had an mri for the shoulder results still pending. not looking forward to surgery but on the otherside glad that the lymphnode comes out.
I have finally spoken to my partner and realised I should have done this much earlier. he is very supportive and I think that I hurt his feeling not telling him earlier.
I just hope that I will be able to go back to work soon as it will drive me crazy hanging around at home.
thank you all so much for your support it means a lot to me.
Katja