I’ve had no surgery and feel a bit of an odd one out. Any other secondaries ladies who’ve had no surgery or am I really on my own here?
Hi Weepixie, yes we do seem to be in the minority!
I was diagnosed July 2006 after routine mammo (I’m in *that* age bracket, LOL) and I was sent for scans, bone mets were found so my breast surgery and axillary clearance were called off.
Since then I’ve had 3 different chemos and various hormonals, and to cut a long story short I have done surprisingly well, despite liver mets found in 2009.
I hope this helps you feel less “odd”… oh and by the way (1), I’ve not had radiotherapy either… and (2) my oncs/BCN told me that I could have surgery to breast/primary tumour if I needed it.
Hi,I have not had surgery either. I was diagnosed with my primary and secondary bone mets at the same time which was discovered due to an intense hip pain. Started on tamoxifen, zoladex n zometa…which I progressed on. Had EC chemo which shrunk my breast lump from 4cmx4cm to 8 mm. The onc has said once I am stablised with next maintainance drug letozole ( n zoladex n zometa) they may remove it…lumpectomy. From what I gather we have to be stable before they’ll remove it. I have been stable since chemo…I think this varies from hospital to hospital. I based at Royal Marsden Sutton.
Mel
Hi
I had a WLE plus radiotherapy when my primary was dx in 2003. I then had a local recurrencee (in scar line) in 2008 and further investigations showed bone mets as well, so my mastectomy was cancelled. I went on to have 6 x FEC and then Arimidex. I have asked about surgery, and I know there are different views on this, but every CT scan has shown no evidence of disease in my breast for the past 5 years. I also know of a lady with secondaries on here a few years back who did have a mastectomy (at her request after initial chemo) but a full biopsy of her breast once the operation had been done showed no evidence of disease in the tissue. I also know of other ladies on here, including Mrsblue who has already replied, who have not had surgery so you are not the only one!
Nicky x
I did neo-adjuvant chemo which didn’t shrink primary tumours enough to operate and developed skin mets while undergoing neo-adjuvant rads April/May last year. At that point I was given the impression that surgery was off the table. I’ve since asked about it and I could have it if my mets were under control, but haven’t reached that stage yet. My onc didn’t sound particularly enthusiastic about it so I expect it would be up to me to push for it.
Hi, I’ve not had surgery. I was diagnosed stage 4 from the start in 2003. At that time fewer stage 4 patients had surgery. I’ve had many years of stability and wouldn’t ask for surgery.
Thanks for making me feel less alone. I’ve not met anyone else who hasn’t had surgery. I was also stage 4 at dx last year and have other risk factors for surgery so it was not considered an option. It’s good to know there are quite a few of us and to hear that you have all done so well.
Hello Weepixie,
I had a lumpectomy in 1994 when my primary was diagnosed. The recurrence grew under the scar tissue and remained undetected, not showing up on my 3 yearly mammograms. There has been no talk of surgery for me as the priority is sorting my very extensive bone mets.
Last time round I had to wait for the surgery to heal before they could start chemo and radio. This time they got right on with the rads, Zometa, steroids, Lectrozole. And 4 months after I am still recovering from all of that.
I wouldn’t be in a hurry to ask for surgery. If my Consultant suggests it, that’s something else. But I’m after stability now and just have to be patient. Hard! But we are not alone, Wee Pixoe.
I was d/g with primary and bone mets in Oct '09 - no surgery then - but chemo, letrozole, zometa.
However, I had m/x in Nov. due to regrowth of breast tumour, which had been shrunk to nothing by chemo. Turns out I probably was mis-diagnosed with bone mets! Prior to being told I may not have bone mets after all, my onc. would probably have given radiotherapy & change of aromatase inhibitor as treatment but, with big doubt about mets, I have been treated recently as a primary BC so now the surgery, chemo, rads and herceptin, because although ER+, HER2 - to start, now ER+ and HER2+ !
Jen
There is on-going debate about whether to give ladies with bone mets surgery straightaway - it is a ‘grey area’.
Hi Weepixie
No you are not alone, I guess surgery depends where the secondary BC occurs. For me after 8 years good (primary was in the breast) it came back in my thigh and like some of the above am now taking Amrimidex and Ibandronic, just over a month now and so far so good. I agree it does feel strange not to have surgery but just grateful I didn’t have to but with chemo to shrink spot on my liver and some side effects from the painkillers whilst trying to find out what was wrong with me, I sure did feel “ill”. I haste to say I have put back on the weight just waiting for hair growth which has started after 8 weeks, eyebrow and eyelashes started to show this week.
Where is your secondary?
Keep positive. 
Bumping for SP
Thanks for the replies, it’s good to see I am far from the only one in this camp. My secondaries are in liver and bones.
Hi, I was diagnosed Dec 2012 with primary & secondary in bones & my onc was not keen to do any surgery - I am on Tamoxifen, Zoladex (injection every 3 months) and Denosumab (monthly injection). Scans in April showed tumour was shrinking, no further spread (in spine,pelvis,upper thigh,chest) & I feel pretty ok at the moment. What I have asked about is removing my ovaries - does anyone think this is a good idea? It would be one less place for it to spread to.
Good luck with treatment everyone.
Helen x