Hello all
im a bit stuck. A few months ago, at 37, I was diagnosed with bc with bone mets (and spot on lung and in nodes). I’ve just fished chemo and luckily, got good results. I’ve now been told that I could have just tamoxifen, radio and tamoxifen or mastectomy with lymp node removal and tamoxifen. Surgery was pretty much off the table til now. I am not entirely sure of the benefits of surgery in my case and no one is pushing it, it’s just an option out there for me to decide. The surgeon said, yes she could do it with a delayed reconstruction…but no one is saying whether or not I should. I was advised that there is a 40 percent chance of lymphonaema in the arm and when pressed was advised that in terms of life expectancy, surgery would make no difference. It would be to prevent local recurrence and possible breast infections / ulcers in the breast later on. Obviously I would do it if changed the big picture issue but otherwise, I’m not sure I would put myself through it. Any stories or tips from others who have been in this situation appreciated. Thanks! 
Hi Poppylisa
its a difficult one…reminds me of when I was first diagnosed and i was running in circles trying to make the right decision, when really I had no idea. The best advice I can offer, is to take some me time out and have a think. Do all the researching you feel you need to do, go back as many times as you need to ask questions…they really wont mind. Thats what they are there for. Dont be pushed into a quick decision, you have been having good treatment, you have the time to sit and make your choices when you are ready.
hope that helps? Glad you are sharing with us, we have all been there and are here for you
huggy thoughts,
Moijanxx
Have just read your post again and your brainstorming is very practical…im sure you will find the answer for you,
xxx
Hi Poppylisa
Moijan’s comments are very wise. Time to think it all out is certainly the way to go research and way up all the pro’s and con’s only you can really decide. But let me tell you bone mets sound bad but the mets in organs are more to worry about. I have mets in ribs,both femurs left tibia and pelvis also sacrum on the spine with cells all the way up the spine I also have a tissue met in breast loads of skin mets and all from my second primary tumour on the chestwall. That was 2013
My first primary was 1996 when I was told I would have a mastectomy but was suprised when he had done a lumpectomy instead as the lump was under the nipple he made a really neat job you couldn’t see the scar when it all healed But because they could not biopsy it properly until it was out they realised it was worse than what they thought and decided to do a full node clearance and asked if I wanted to have a mastectomy So second time I was facing a mx I did not know what to do I asked the registra she said keep your breast so I just had node clearance axillary which showed one being cancer. I had chemo radiotherapy followed by tamoxifen for 8 years. I watched a mark grow under the breast just where the chestwall tumour grew which wasn’t picked up by mamograms.
I always asked myself did I do right and now I think no. So be careful what you decide and ask any questions we all have stories.
Love and (((hugs))) xxx
Yes, Marirose, so true, when you make a choice,you hope for the best, you cant foresee the future and so its good to take time and then you know you have given yourself a fair chance to look at things…I chose to have rads to my armpit…and now have lymphoedema, but maybe that for me was the better option…as my cancer had spread outside the lymph nodes to the armpit fatty tissue and the radiologist said if it grew there again, it would be hard to remove.
Poppylisa, take your time and do let us know how you decide( if you want to) huggy thoughts…we are all here for you
moijanx. ???
Hi Poppylisa,
I had already had a mastectomy and reconstruction before my mets arrived so I can’t speak from experience. However, I know this has been a topic of much debate over the years and there has been a lot of evidence either way. However, there was a recent clinical trial which suggests that Mastectomy increases aurvival in Stage 4 patients. You have maybe already seen it.
news-medical.net/news/20160604/Mastectomy-followed-by-standard-therapy-improves-survival-in-stage-IV-breast-cancer-patients.aspx
It kind of makes sense to me I must admit. The less cancer there is in your body the better.
However, it’s a personal choice and it really depends whether you feel you can go through surgery.
Good luck with whatever you decide. xxx
Hi Poppylisa
I had secondaries to liver and bone from the beginning (Dec 2013) and after the first chemo I sought surgery but was told no way then I asked for a second opinion on this and the scans showed that the tamoxifen I was on hadn’t worked so back to chemo. That worked and was then given Letrozole April 2015. I came across the article that waffle gave the link for in Jan this year. So that gave me ammunition to ask for surgery again. My onc referred me to another hospital and they said yes! I then had to decide whether or not to do it. I didn’t have any lymph node involvement but they said that immediate reconstruction was not possible as radiation might be needed as the lump was big and an ultra sound showed that although the large lump 70mm was mobile it had grown into the chest muscle. I decided the best thing for me was seeing no breast rather than a deformed breast so 19th July I went ahead and had the mastectomy. I was back home by 2 pm and it all went well. We are all different and if I had the possibility of having to cope with lymphodema too I may have made a different desision, but I am really pleased that the surgeons took what I wanted seriously and that I got rid of the lump which turned out to ‘only’ be 45mm and clear margins to the muscle too! Any decision you make after considering all sides will be the right one for you! Good luck.
Thanks everyone for replies. Thanks also for the new study info. That’s very useful and I hadn’t seen that. Someone told me about the Indian study which showed no positive link. So I’ll mention the new one. It kind of made sense to me that getting rid of recurrence of another lump for good would help overall but I was told because of the spread it wouldn’t help in big picture terms. As far as I can tell so far, there isn’t that much data / studies around it, and the few there are are mostly inconclusive so maybe no one does know right now!? Part of me wants to see how the tamoxifen and radio etc work first to prevent reoccurrence as chemo has done the job for now…but still thinking.
Hi Poppylea, so glad you are taking the time to research and consider…and I suppose, as you are on treatment that gives you time for reflection and to plan.
best wishes,
let us know how things go
Moijan???
Hi Poppylisa, cant be mch help as like waffles i had doble mast & reconstrction before my mets appeared. When i had my original surgery my onc said to have full axillary clearance of lymph nodes but then my srgeon asked if i wanted sentinel node biopsy. I didnt know what to do so, thinking i’d throw everything at the cancer to stop it coming back i went the whole hog. needless to say it made no difference as i got secondaries anyway…will never know whether i made the right decision …it may be that, had i not had the clearance i would have got secondaries sooner???. It really is a minefield with no right or wrong answers. Take your time…you will come to the right decision. x
Hi Poppylea…
might be worth chatting to your nurse specialist about why theres a limited window?
Was trying to think why that might be?
good luck with your decision tho
Moijanx