Secondaries from the start do I now have a mastectomy 2 years in?

Long title says it all! Diagnosed primary Dec 2013 with secondaries Feb 2014. Lobular Er+8 Her2 negative. Multiple mets to liver, solitary mets to spine. EC chemo then tamoxifen which didn’t work then Doxetaxol chemo, I have just had my 19th Denosumab injection and continue on Letrozole, now for over 10 months and seemedly all is stable and despite all I feel really well. I’m 55 with 2 boys both at uni. Initially they said no to any surgery but after new American evidence published Jan 2016 said that removing a primary even with secondaries established did prolong life by an average of a year. ( I would hope for much longer) I asked to see a new surgeon and he said I could have surgery if my onc had no objections. I see her tomorrow. So don’t know if she will allow it or not yet but want to be clear in my own mind what to ask her!
On one hand I want rid of as much as can be cut out to be out but on the other hand I am really enjoying my life on a day to day level I ride as many horses as I can and I’m an architect who has a really interesting job on at the moment too so my main concern is: Mx only how long to recover? And what is it really like seeing a lopsided body and a big scar? Or if they allow reconstruction straightaway how long really to recover and is this better long term? I need your friendly knowledgeable advice please!!! And Carolyn’s good humour! I don’t post often but her comments make me smile !!

Hiya London 1 .
Welcome to our family and support.

Oh dearie me you have quite a decision to make about the surgery …there are ladies here that are coping with the primary lumps that haven’t been removed so I hope they come forward to give their expert opinions but of course you have to remember its invasive surgery and recovery time will b involved.
Oh …I’m rubbish at medical stuff …sorry . I had a lumpectomy in 2004 and that’s behaving itself at the moment but I do have extensive Mets to hips, pelvis, femur and probably all over the place! I’m on letrozole, Adcal and the bone juice injection ( can’t spell it ) .you have had so many your bones must b as strong as Stonehenge by now!!
Why don’t u post more often …the more the merrier !!
Help …marirose can you reply to this lady as you have so much more experience of this.
Hugs xx

Thankyou Carolyn for the accolade but I am not that experienced myself.

 

London I still have my 2nd primary the 1st was in 1996 of which I faced a mastectomy because the tumour was under the nipple.The biopsy was done with a needle then (not the easy way that is done today it hurt alot to say the least and he had to poke around to find it)  they were still unsure about it being malignant until they had taken it out and the surgeon didn’t perform the mx. But it was malignant I needed my auxiliary glands doing to check my lymph nodes and one was cancer I faced mx again but a registra talked me out of it. Anyway 2013 I had a chest wall tumour under the same breast how I wished I had that mx but it would have done nothing because the tumour grew on the chest wall and because of where it was the surgeon would not remove it as I also had a tumour on my spine they did not want to aggrevate the cancer so I have been stuck with it and collected other problems since.

I cannot advice you but I do hope my story may help you in your decision good luck with what ever happens.

 

Love and (((hugs)))  xxx

Marirose …I just knew you would b able to post a better reply than me.
I’m as much help as a chocolate teapot with anything medical but hopefully I can cheer you all up with my nonsense !!
Hugs xx

Carolyn as always you make me smile! Marirose thanks for the advice, if I hadn’t seen that American research I wouldn’t have asked about it again, but it now looks most odd. But mostly I try not to look. Still not sure what is best to do. I want to make the most of what I have now!

Hi London 1.i had mx in 2004…i had reconstruction at same time but it was a tissue expander…it had to be filled up to stretch the skin…then they operated again and put a different implant in…recovery time well I signed myself out after two days wanted to get home.and went to lunch the day after.I cried when I looked at it and still hate it now…but in a bikini or a bra you cant tell.but naked nothing like my other boob…i think stomach reconstruction is prob the best but scars stomach and long recovery…so it definitely needs a lot of thought…take care Sharonx

Hi London1, just to add my experience into the mix! I had a mastectomy and some lymph nodes removed way back in 1995. I waited just over a year for a reconstruction, had a tram flap one where the new breast is taken from your stomach. It was a major op and I have a lot of scars. I then had further surgery to construct a nipple. It was a success story though but I was a primary patient.

Fast forward to several recurrences around the reconstruction which were surgically removed. In 2013 a secondary was discovered on the same side chest wall and proposed surgery to remove the lump in my armpit was abandoned. It was not technically the primary but I could have had surgery. When I asked, my professor refused as I had already had some 6 lots of surgery to the area. He Said that I was at great risk of lymphoedema.Since then I am working my way through other treatments.

I am not sure whether surgery for you would be beneficial or not? My surgically removed recurrences kept coming back. I have also read studies which seemed to show that keeping the primary damped down cancer growth in the secondaries. 

I still feel that my gut instinct might be to remove as much as possible but treatments also do a great job and tumour size can decrease (and increase again) quite quickly. As others have said, scans should give you a clearer picture. You would also have to put horses on hold for a while! I still have my two and they are such a joy!! Good luck whatever you decide xxx

Not being able to ride is certainly a factor in the decision! At the meeting with the onc today she said she would discuss me with the team…but in principle will do whatever I want! I think mostly that I am pleased that they are giving me the option now after blankly saying before that there was no point!

On balance I am likely to decide to stay as I am and ride a lot! ??? I need to decide by 17 may!

Wow 57 cycles, ???

Well found out today after what seems like ages that I can have a mastectomy, the operation will be next week. Thanks for all previous comments. Sadly the primary is still very large and although they won’t allow reconstruction I am convinced that seeing nothing rather than a now odd looking (to say the least) breast will be better for me.

One for stillhere! I will miss my riding but for the last 6 weeks I’ve been in the amazing position of being paid to school a Lusitano horse! He has gone on holiday now but will be back in September with a Spanish friend for me to ride too!! So plenty of time to recover from the op! In the meantime I’m going to ride more PRE and Lusos at the weekend ???

Any comments about how best to recover from a mastectomy would be welcome! Thanks cyber support team!