Just wondering, has anybody else had a mastectomy after they’ve been diagnosed with secondaries (I have two spots in my bones). Most seem not to have had but I’m scheduled still to have mine after Xmas?
Thanks
Tish xx
Hi Tish, I’m sorry to read about your secondaries. I was diagnosed with bone mets and bc together in 2003. At that time most of us diagnosed with mets didn’t seem to be offered a mastectomy. My primary tumour is used as a guide as to how my treatment’s working, along with other ways. I think ideas have changed though and I know a few ladies that have been diagnosed recently (with mets) that are having the op.
Are you okay with having the op? I think if I was diagnosed now I would choose to have my primary removed.
Good Luck with the rest of your treatment…Belinda…xx
Hi Belinda
Thanks for your message.
I don’t mind having the op at all, in fact I think I’d rather have it and know that part of it’s out of me, not sure how much difference it’ll make but hey!
How have you been over the last few years, do you have any bone pain at all? I don’t have any at all and that’s why I was suprised about the two spots (not even sure where they are in fact!)
Hope you’re well anyway and thanks again for the quick response!
Tish xx
Hi Tish and Belinda
I was dx in July with bc and then 10 days later with liver mets. On first dx was told would need mastectomy on right, and I said would have both done, as left was inconclusive. But when told had liver mets, having an op was apparently not an option, straight onto chemo. I would rather have the operation too though, at least then know it is another thing to help me! Might bring it up again at next onc appointment, after ct scan to see what happening to my liver.
Hope you are both well and take care
Dawn
x
Hi again, I had some hip pain (thought it was sciatica) and was going to see my GP but before I’d made an appointment my hip fractured and in hospital having tests, scans I was diagnosed stage 4. Had a hip replacement (which works great) and I’ve not had any bone pain since then. I do have stiffness from my hormonal treatment but it’s okay, I can walk it off.
Good Luck…yes I’d deff have the op if I was diagnosed now.
Hi Dawn…! So sorry to read you were in hospital recently. I’d noticed you hadn’t posted for a few days.
Hope the chemo’s going well…Belinda…xx
Hi Dawn
I too read you post saying you’d been in hospital, hope you’re feeling better now and can get on with your chemo, take it easy!!
I’ve had 4 sessions of FEC so far and having one more and then the op, the onc said I’d done really well so far which was encouraging to hear. He doesn’t seem too bothered about the two bone spots which I find strange!
I’m definitely going to go ahead with the op (well I’ve not been given a choice actually, lol!!), I’d ask your onc if it’s an option for you and it may help. My onc said his priority is to gain control first and then deal with anything else afterwards.
Hope you CT scan goes well and the nasty thing’s continuing to shrink!!
Take care
Tish xx
Hi
Like Dawn I never had surgery due to spread. I’m 2 1/2 years down the line now and had already decided that if I’m still well next year I will ask again. Good to hear that it is still possible.
Best wishes to all
Ruthie
Hi Ruthie
Yep it is definitely still possible, there’s never been a question as to whether I’d have the surgery or not so it’s definitely worth asking if you can go ahead with it too. They also still plan to do my reconstruction after my rads which I also feel is a positive thing.
Hope you’ve had a great weekend.
Take care.
Tish xx
Hi Trisch
I had mastectomy and then due to high node involvement 16 out of 18 had a bone scan and abdominal scan straight after which showed two hot spots, one on rib and one in arm (arm turned out to be something else). Not sure if I would have been offered surgery if bone secondaries discovered first but idf only minimal then I would think surgery would be a option.
Maddison
When I got my first dx they said I’d almost certainly need a full mastectomy because of the size of the tumours (yes, I had THREE before I even noticed them). I had staging tests which showed the bone and liver mets so then they said there was no need for a mastectomy. At the time I felt that I wanted the breast lumps out because they were the source of all evil, but the Mac nurse explained that now the cancer has spread round my body it will carry on spreading even if the originating tumours are removed.
I tried to do some research on the subject and I tell you, there is very very little research on this particular diagnosis - can you tell I’m bitter? There was one very small study which seemed to indicate that women who had mastectomies had a slightly longer life span but the difference was minimal. Also, it was a retrospective review and not a randomised trial which means that there might be other reasons why some women lived longer than others. One obvious factor is that women who are very poorly, or very elderly, are less likely to be offered surgery and might be the reason they don’t survive so long, regardless of whether the surgery helped them.
I asked a different oncologist again about the reasoning for not having a mastectomy. She explained that because of the size and location, I would need the most drastic and severe sort of surgery without any prospect of reconstruction. She believed that the best treatment for me was taxotere and herceptin, and it was imperative to get started on them straight away. If I’d had surgery, I’d have to wait weeks or even months before I was fit enough.
If I’d been diagnosed at an earlier stage I’d have no hesitation in having surgery in the hopes that the cancer would never return. Now I know I’m incurable I’ve come to terms with not having a mastectomy, because it won’t save my life. At least now I won’t have the trauma of surgery and the aftermath.
Hi
Thanks Tish and Silverlady. At dx I had something similarly said to me, that the maesectomy would not prolong life. I was also told that I had at the very best 15 months left !
At the end of the day we’re all individuals and a lot depends on our own circumstances. I am still only 44 and have a 10 year old and still feel well. I have only had one set of chemo and one set of treatment - which touch wood - will continue to work for a long time yet.
I am not raising my hopes re maesectomy - and for me it will be both breasts - but feel that I must do everything in my power to keep well and hopefully see my child reach 18.
Please keep us informed as to how you get on Tish.
Best of luck to all.
Ruthie
Some women seem to have chemo to shrink the primary tumour, and have some kind of marker put in so they can still find the exact spot even if tumours shrink to nothing. I’m guessing they then have a lumpectomy rather than a mastectomy. Would this be an option?
Jacquie
Hi Jacquie
That’s the reason I’ve had the chemo first, to shrink the tumour as it was fairly large and the surgeon told me it would make the surgery easier. They’ve never mentioned having a lumpectomy, always just a mastectomy.
Sorry if I sound a bit daft but what would the marker be used for??
I think at the end of the day, we just have to go with what our Consultants tell us and have every faith in them that they know what they’re doing. Like Ruthie says, we’re all individuals. It’s difficult to compare cases.
Tish
Hi,
Have just seen breast surgeon on Monday about possible surgery to my primary BC.
Was diagnosed in July and bone mets found by CT scan 3 weeks later. I was immediately put on Arimidex which has shrunk my primary to the point I cannot feel it any more and since then I have been having radiotherapy for my spinal tumours and recovering.
The surgeon wants me to have ultra sound and a mammogram again before a decision is made but she has given me the impression that they will decide against surgery in favour of chemo. The reasons she gave were that any benefits are outweighed by the trauma and risks I would suffer, as it has spread already. Also the hormone treatment is working well at the moment. How much my age (57) influences her decision I do not know.
Not too sure I am that keen on the original staying in situ, especially as it is invasive lobular BC plus I feel that I have had full use of my now saggy breasts but I do not think I get much choice in the matter!
Ah well, whatever they decide it is going to wreck my plans for Christmas.
Thoughts Ruftikins
Hi Tish,
The marker is so they can find the exact spot and cut it out! It’s good news that the chemo can be so effective there is no lump left. Unless they mark the spot beforehand, they won’t know where to find it! I’m guessing there’s always one or two tiny cells left after chemo, and that’'s what they’re after, but I don’t know for sure.
I feel for you Ruftikins - like you say, neither option is going to be one you want for Christmas!
Hope you find a peace about whichever decision is made.
Jacquie xx