I have just returned from my 5th chemo session - amazingly after my neutropenic episode last week, the counts were good enough to go ahead today, albeit at a slightly reduced dose.
Anyway, had a rather weird conversation with my onc who was quite excited at the fact that she couldn’t find my breast lump at all today - she then started talking to me about options after chemo and that it might be on the cards for me to have a mastectomy as I ‘only’ have bone mets. I was so gobsmacked by this that I don’t think I really gave a proper response - I thought that surgery was totally out of the question once the uggers had spread and now I don’t know what to think …
Anyone else been in this position? I know there is a lady on here who had a mastectomy with liver secondaries but haven’t heard of anyone else having it with bone mets.
Very confused!
Lesley xx
Hi Lesley
There was a good thread recently about surgery with mets. It seems that thinking is changing on this…until recently people didn’t have surgery for the primary tumour if they had mets, but I have heard of some people now getting the surgery…there have been some interesting articles about this.
Sorry I’m sounding vague! Can’t remember where I’ve read the stuff.
best wishes
Jane
Thanks Jane - I’ve been trying to find that thread too with no success. Someone will be able to track it down I’m sure!
I’ve read that in Australia (and I think sometimes in the US) surgery following a mets dx is done as a matter of course - am just wondering if my onc team are following their lead. I am going to have to find out all the pros and cons and have a long hard think about things.
Lesley x
Hi Lesley – just bumped that thread for you.
Marilyn x
Hi Lesley
so glad to read that you have had a good response to your chemo. I am ‘one of these ladies’ you refer to who has had a mastectomy after a diagnosis of bone mets (L hip) at the same time as my primary in Mar 07. I ahd my hip repaired in Mar07 and then had a mastectomy with ANC (1 /16 NODES affected) in June 07. I have remained on hormonal treatment since. I recently had my ovaries removed so that I could stop taking zoladex.
I have been fortunate that I have not had any further spread of the disease, I experience no pain and continue to work full-time. I was on iv Zometa for a short time but this were discontinued because my Onc felt that I have soo little bone disease that I do not require them at this point in time.
There are many opinions regarding mastectomy after a secondary diagnosis but I can only answer for myself in saying I feel I have made the correct decision.
I wish you well.
Hi,
I’m another with mx with bone mets even if it was sort of by accident. I was diagnosed in July 07, had bone scan a few days later but the results were missed. Went ahead with 8 lots of chemo that shrank what turned out to be 2 tumours, had mx and full anc (12/22 nodes effected). Just before surgery follow-up appointment and the start of rads, the bone scan results came to light but onc said my treatment would have been exactly the same. Strangely I wasn’t shocked or anything and was glad they did the extensive surgery, especially when they found all the lymph affected and signs of vascular invasion as well. A bone scan last July actually showed some reduction in bone mets compared to the earlier scan so it looks like the chemo for the bc helped with the bones as well.
I was on tamoxifen but was changed to zoladex and arimidex with calcium tablets for the chemo induced osteoporosis and have been on Zometa since Oct to help with both. The moment of truth will be Thurs next week when I see the onc - I had my first bone scan since last July yesterday. I am crossing everything that there is little or no spread otherwise it will be plan B…
I am also at about a 85% chance of recurrence and would hope that if further surgery were needed, it would be an option.
Good luck with the rest of your chemo and surgery if it happens !
Liz
Hi all
I have been reading posts since my diagnosis in Dec 2007 but this is the first time I have posted as felt my case may be of interest on this subject.
Diagnosed with HER2+ BC in Dec 07 at the same time secondaries with 12 lesions to liver. Did 6 rounds of FEC then started herceptin. In Summer of 08 diagnosed with bone secondaries in spine & hip but too minor to treat with anything.
In Jan 09 after much debate with the surgeons at my hospital it was agreed to give me a mastectomy with immediate reconstruction as my bone & liver mets appeared to be stable and the lump in my breast had never responded to any previous treatment. It was made clear however that this was purely palliative, I even kept my own nipple! (tho it is now on the side of my very firm boob).
Unfortunately in March 09 after suffering mild headaches I requested a head scan at my routine ct scan and I now have a lesion in my brain. For which I have had whole brain radiotherapy something I wouldnt wish on anybody. The disease in my liver (which had gone from 12 to 1 lesions) has also progressed as so obviously to me my bones which I have also received big doses of radiotherapy.
I was really chuffed when I went for the mastectomy and despite my bad news since I still believe I was lucky to have had this option.
Thank you for all your replies - I am going to be spending quite some time weighing up all the pros and cons of this.
Lizcat - sounds as if you are doing really well, hope your results are good next week.
Christine - sorry you seem to have had a pretty bad time but I’m glad you felt that the mastectomy was a good option - it seems to me that most people who have opted for this have felt it to be a good move.
Lesley xx
Hello Lesley
I was diagnosed with secondaries to bone in April 2008 together with a third primary tumour having previously had primary BC in 1994 and 2001. I was offered the option of a mastectomy together with hormonals and Bondronat to treat my bone secondaries, which I accepted. A year on in April 2009 my bones had healed really well but unfortunately I had further spread to retroperitoneum and I have now started FEC chemo. I am tolerating this well and continue to feel really fit with minimal disruption to my life. From my own personal experience I think a mastectomy was absolutely the right decision for me. Happy to discuss further by PM if that would be helpful to you??
ShelleyAnn
XXX
Hi Lesley
Great news that the chemo is working.
We were diagnosed within weeks of each other last year, but i had a mastectomy at the time of diagnosis. For me it has definately been the right treatment, especially as I had nodes involved and microvascular invasion. There is some medical evidence to support this option from New Zealand and Australia, if i can find it I’ll post the link.
Rachxx
I have mets to liver and spine.I did have mets to lung and lymph glands in neck and axilla but the last lot of Xeloda got rid of them.It also shrunk my very large breast tumour down to 1cm.Since finishing the Xeloda at the beginning of February my breast tumour has started growing again.At the last visit to my Oncologist she offered me a mastectomy or to go back on Xeloda-I have chosen the chemo as it worked really well for me last time,shrinking my tumour within four days of taking it.I was very shocked and burst into tears at the mention of a mastectomy.After all this time and everything I had already been through,it was a no brainer-I start chemo again on the 18th June.
Alli x
Thanks everyone - Shelley, I have PMed you.
Rachel, interesting to hear that you had a mastectomy, how are you doing now, what are your markers like etc?
Allicat, you obviously took the other course which was right for you - that shrinkage sounds incredibly positive. Good luck with your next chemo regime, I hope it works just as well second time around.
Lesley xx
Hi Lesley
I have been interested in this question since having a local recurrence last year and subsequent find of bone mets. My onc is of the opinion that I don’t ‘need’ a mastectomy now ‘the horse has bolted’ her words not mine! I’m still in 2 minds and any extra experiences/opinions on here would be good to know. I had FEC last year that shrunk my lump by 80% ish and from the last 2 scans everything is the same as at the end of chemo. I’m also on bisphos and arimidex after having ovaries ablated in November.
Thx for asking this question, opinion seems to be divided and also changing as I don’t think mastectomies were done on mets patients as a rule.
Nicky x
Hi
I have now had two mastectomies, my first was just after my bone secondary diagnosis in Jan 2007 and the last was just 7 weeks ago after I developed another re-occurence. I read the research from Denmark/Sweden (which was a link from this forum) about it improving survival in particular for people with bone secondaries and hope that that is true, but the biggest plus for me is mentally. I feel so much better not having that lump to keep feeling and trying to decide whether it was smaller or bigger from the last time I felt it.
Even though I now look like an android when naked, I am happier than living with a cancer that I can physically feel.
Good luck with your decision.
Linda
Have any of you who’ve had a mastectomy with secondaries HER 2+++?
Celeste
I was Her2- when I had my first mx but found out I was Her2+ before my last mx.
Linda
x
Hi,
I’m here in NZ and when I was diagnoised with primary and secondary at the same time, I was immediatley told a mastectomy was in order. That was 10 years ago this September. I have no regrets about it firmly believe it was best for me. I understand that this is still the current treatment here in NZ and Australia.
kiwi
Hi Kiwi, Do you mind me asking where you have mets? x
Hi Kerry,
No problem with asking where my mets are, when I was diagnoised they were in the bone. Have had some ups and downs along the way and as of last year it has gone to my liver. But I’m still going strong.
kiwi