Hi from Australia (dual pom/aussie with family still in UK). Although our medical systems may vary slightly, I’m looking at information from everywhere and found all the messages on this site very useful, helped me try and put this horrible diagnosis into perspective and gives me hope when I am feeling down.
I found a large lump on my breast (3 cms+) on 1/1/11 (6 weeks after getting married for the first time at age 55 to the man of my dreams - and he is being my rock). Within weeks was diagnosed with secondaries to my bones, mainly spine and a little in my pelvis and HER+. Immediately started on chemo (Docetaxel/Herceptin/Zometa). What a shocker and to some degree it still feels like a dream until I see my nearly bald head.
Anyway, the chemo has worked wonders and after one session the lump had shrunk to about 0.5cm and after the second could not be felt. Had my first scan last week and to my joy/relief the breast lump could not be “evidenced” and all the bone is basically sclerotic. Everywhere else was clear so as good as you can get at this stage I guess. Two more chemos to go then onto Herceptin and Zometa.
I also saw my breast surgeon last week, he had originally sent me off for all the tests (as I have no bone pain) so I feel like I’m in good hands and he has recommended a mastectomy. New thinking is that it may prolong survival although I’m only aware of one study which showed this but because it was retrospective it my be biased. In one way it seems logical to remove the root of the problem but on the other hand, why put myself through surgery if there is no real benefit. I will get a second opinion but am veering towards doing it, so at a later date I can say I tried everything.
So 2 questions - is there anyone else who has gone down this path, either having or not having the mastectomy. I am going for an ultrasound of the breast as it will give a clearer picture of what is left in the breast in case a lumpectomy is possible but it was clear the doctor thought a mastectomy was the way to go.
Second, I see some people say they have been on Herceptin for years, but according to the surgeon our standard is 13 months. My oncologist said you keep on it until it stops working and I will have to ask her exactly what she meant, but would be good to know if there a standard period in the UK.
Thanks in anticipation
Hi to you “downunder”.
I don’t know about Herceptin as I’m HER neg but I do know that certain cancer centres in America (especially the Anderson in Texas with very good survival rates) go for a mastectomy alongside chemo and some other posters on this site have written about this so might well be along to give you more info. In the meantime you might like to look at the Anderson cancer center site - they’ve lots of research articles that you can search too.
Hi, I had a holiday in Australia, a few years ago…wish it was closer. 
I’m not her2+ but know others who have been taking herceptin for many years and some friends have managed to change to Lapatinib after Herceptin has failed.
I was diagnosed stage 4 from the beginning, bone mets, in 2003.
At that time most secondary women did not have a mast as there was considered to be a risk of further spread from the operation…now some years later some Oncs believe it is beneficial and there are members here who have had masts.
Now 8 years on from my diagnosis my primary is much, much smaller and scan results and my Onc consider it to be inactive. Great to hear your treatment has worked so well! Take Care…x
The Oncologist in charge of my treatment is a Professor at a large London teaching Hospital, and one of the main Scientists involved in studying the effect of Micro Rna’s on BC. He is also a Consultant Oncologist at a Harley Street Oncology Clinic, a Senior Lecturer in Oncology at Imperial, and Cancer correspondent at the Daily Express - so in short he knows a thing or two about treating BC.
He always recommends mastectomy for stage 4 patients, and say’s that the evidence that it prolongs survival is overwhelming.
Hi,
I was diagnosed with bone mets at same time as primary in July 07. Tumour was 7.5cm x 5cm, 100% ER and PR + but HER-. Had chemo first and that worked well in shrinking tumour (actually there were 2 that had merged) then had mx and full anc. Never had any regrets about that and it was what medical team all suggested anyway - there was never a question of is it worth it from them. Having said that I did hear one male nurse saying to another after my surgery when they were changing over,‘She’s had a mx but has mets and is it worth it???’ He obviously didn’t know I could hear from my room next door as the door was open. I ignored that, upsetting and unprofessional though it was, and just go with the fab surgeon and onc. I’m now considering a mx on other side to balance me up next year - surgeon would be very happy to do it…
Obviously it’s your choice in consultation with your team but I never regretted it once.
Good luck, Liz
Hi Webhurst
Just wanted to say I’m in a similar position. (Dx in march and at same time told it was also in my neck. Lump on neck has reduced significantly already). Just spoke to my Onc today to ask what happenens after my chemo (another month to go) and if surgery was an option.
He said we will discuss it more at the time but they will have to weigh up if its worthwhile doing it ie remove the bc in the breast but it will still be in the neck ?! Radiotherapy alone might be the next plan and then back on to chemo
Although I’m HER- I am on Avastin (unlike your Herceptin) he told been told i could say on this for years if it continues to be beneficial.
Sorry I’m not helping you in your decision, but hopefully you may get a few more opinions.
All the very best
Webhurst,
I am HER2 pos. I have mets in my and liver. These were diagnosed in 2008. I decided to have Mx. The plan is that I stay on herceptin for as long as it is effective. I have no symptoms and feel well so I think having the mx was the right thing for me to do.
Hope this helps
Alex.