I was diagnosed with bc and liver mets together four years ago and I was never offered surgery nor, I think, would I want it. The reason surgery is usually performed is to contain the disease. If you are diagnosed stage iv from the start, this means you already have circulating breast cancer cells in your body, and having surgery is not going to change this. There has been limited research to suggest that surgery following a stage iv diagnosis may be beneficial, but it is not a common procedure as yet. Another argument suggests that surgery may actully aggravate tumour cells and cause them to spread quicker. It is the liver mets which are the important ones (the liver being a vital organ), not the breast tumours, hence the need for early detection and containment.
I too was diagnosed with bc and liver mets at the same time in july 07. My onc said surgery not an option due to having a spread already, and said “the horse has bolted” so to speak and no point doing an op. I sometimes think I would like to have surgery to help combat, but like others have said, once you have a spread it is then in your blood system.
Kay, sorry to hear u are suffering too, and hopefully it has been successful though and worth it all.
I too am shocked about Cathy, and it does make you face reality again when someone u know and have actually met and spoken to dies. Harder to face things again I think. Need to pick ourselves up again.
My feeling is that the medical profession is split on this at the moment, certainly I have had opposing answers. So if you have a strong preference one way or the other try to get a second opinion.
Not sure I can add anything to the debate about surgery, KerryRose, as had primary dx (and mastectomy and breast reconstruction) 5 years before my secondary dx. Think I posted a reference in one of the other threads Fiona has given the link to, to a paper that indicated there was some benefit in surgery, but obviously itcan be a fairly major operation. Think what Fiona says about getting a 2nd opinion is really sensible - you need to feel happy and comfortable with the decision that is reached, whatever it is.
As for me, I am definitely feeling better than I was. Still pretty tired but nausea is much less and virtually no pain now (haven’t been slurping the oramorph for days now LOL!!). Saw consultant yesterday for a check up on side effects etc and he is very happy with my progress. Booking me in for a scan in 4 weeks time and seems to think I am on track to return to work around about then as well. Happy for me also to go away in a couple of weeks for a holiday in the Lakes and Northumberland.
Am feeling much more hopeful about the future than I have done for some time. Managed to contact some people in the States who have had SIR spheres too (mainly with colorectal cancer that has spread to the liver, rather than bc). 2 have been progression free for 4-5 years which is amazing! So a glimmer of hope that I might be similar even though I am aware the odds are against that.
Thanks everyone. Off to the Lakes in about 2 weeks time (Newlands Valley near Keswick, in Little Town which is where Mrs Tiggy Winkle came from if anyone read the Beatrix Potter books). It’s a lovely converted barn with a gate straight out onto the fields and fells. Am hoping I might be able to go for some short walks but am still struggling getting to the postbox at the moment LOL. Still got 2 weeks though before I go - and it’s only 2 1/2 weeks since I had it done.
I’ve just read the news about Cathy and like you all I’m devastated. I agree Ripley - she looked so well last time I saw her(though we all know how little that means) and I had no idea that things had taken a downturn. My thoughts are with her family. I hate it when young women die. I hate it when anyone dies but at least old battleaxes like me have been ablr to see their kids through to adulthood. It’s just not fair. What a f***ing awful disease this is
Seeing the news meant I skimmed over the rest of the posts so haven’t seen the rest of the news - love to all of you and I hope you are keeping as well as possible.
Kay - I’m so glad that the ‘spheres’ are working for you. Could you do me a favour and either post some more information or a web reference (or PM me)? This isn’t for me but for a friend whose liver tumour doesn’t seem to respond to anything. She’s still well but has been given the 6 month warning so is looking for any other options.
Hi everyone,
just to let you all know that Colette Mills has died. I am sure some will remember Colette she did use to post on the liver secs forum.
Her and I were fighting for the right to pay top ups for drugs that were being withheld from us and for avastin. We were a force to be reckoned with and we did help change things I am so proud to have had her standing with me. We had afew sleepless nights when threatened with legal bills that could run into hundreds of thousands pounds and decided stuff it we were seeing it through we would not be bullied by the ‘bloody bureaucrats’.
I have posted in the In Memory.
R.I.P. Colette
Love Debsxxx
I saw the post about Colette in “In Memory” - so sad. I had noticed that she hadn’t posted for a while. As always, you just hope that it’s that people are feeling well and busy doing other things rather than the opposite.
hi all
sorry it’s been a while, still recovering from little boys 2nd birthday party!!!
jacksy-
snoogle-
party was great, didn’t cry or thump any one which was amazing as it was a bit overwhelming with everyone offering there services to help if needed, my little boy was totaly spoilt, but hey!! just took ages to put all presents away!.
sorry to hear of the losses on posts, i didn’t know any of them but from what you all say it was a huge shock and a even bigger loss.
had chemo number 5 yesterday which was fine, two of my bloods were in the red a the start, one has now gone into normal range and the other has more than halved, so going in the right direction! so we booked a hholiday for sept to devon! woohoo
spoke to a few onc about avastin and all say it’s not for me so we not going down that road.
husband is thinking of cashung in my life insurence so we can enjoy ourselves a bit but i’m not too sure what do you think?
anyway i’ve been waffling on
hope you are all ok?
take care
gossie.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
My humble opinion on the life insurance, presuming it has terminal illness clause, then go for it. Although will need supporting report from your oncologist. Enjoy it now, especially if its decreasing term.
Don’t mean to be negative in any way, but you did ask!
Meant to ask if you have DLA sorted, which you can apply for under special rules with form DS1500. We found with ins co and terminal illness clause that mentioning that GP had completed DS1500 seemed to help with claim.
I am very praticel about having a secondary dx so four years ago
I put in for a DS1500 and it made a big difference. I certainly did not think I would still be around!!!
I also cashed in my life insurances as they payed out in full and again it made a difference to us and was really worthless in the grand scheme of things.
My GP filled out the necessary forms and was very very helpful.
I am now sorting out about getting extra help in the home as I am struggling a bit with mobility.
I would be grateful if anyone reads this tonight and can help. I am posting on behalf of niece. Dx with secondaries about 10 days ago (she has posted on forums as Katybelu). She got taxol on Thursday, and another chemo for bones last Wednesday. She is feeling very rough, is jaundiced, extremely fatigued and having probs with digestive system. In your experience how long does it take for chemo to start working? She’s so fed up.
thanks
alex