I am feeling so confused and worried. I was originally diagnosed with tumours in both breasts, one tumour was HER2 positive and one was not. I was not given herceptin at the time of the treatment for the primary tumours, just ac FEC, radiotherapy and hormone treatment, firstly tamoxifen and then exemestane. The FEC was not particularly successful and I had two large tumours removed and 21/23 infected lymph nodes on right side.
My relapse last year was in the lymph nodes to the neck and shoulder area on the rightside, internal mammary node on the left, pancreatic lymph node and spine. While waiting for the results of a new biopsy I was started with steroids and herceptin. The results were immediate, a lessening of the swelling even before the docetaxol treatment the following day. I had a further treatment including herceptin and things seemed to be going quite well and the swelling reduced. Then when my biopsy results were checked it was found that the mets were not from the herceptin positive tumour and this treatment stopped. However it seems that from the cessation of the herceptin, my neck and shoulder began to swell up again and by the end of the 6th chem were large and hard and uncomfortable. This seems to be getting worse although my recent PET scan shows that the desease in the bones and internal mammary node is in remission and the pancreatic node less. The neck and shoulder obviously show activity but it is hard to measure by ultrasound or even PET due to the previous radiation treatment there.
My questions are does anyone have any ideas why this could this have happened? Could the steroids have produced the dramatic reduction in my neck which was apparent even before I started the docetaxol? Or do you think I should retest for HER2 incase the tumours are a mix of both the primaries?
My onc is pretty vague about it all and thinks that another biopsy holds risks. His attitude is “wait and see” how if the new hormone treatment (Femara) starts to have an effect or things get dramatically worse. My husband feels frustrated by this and wants me to try the herceptin again even if we have to pay for it (I think that this would not be allowed anway unless unless I prove HER2 positive somewhere)
Although some of the recent PET scan results were good, I can’t help but feel that the desease is accellerating as I am finding some things difficult now, i.e. drying my hair as I can’t hold my arm in the correct position. I am also getting my more stiffness and acheness especially first thing in the morning when the swelling seems to be at it’s worst.
Sorry such a long drawn out post but feeling the need to get things of my chest and desparately need some other opinions…
Pat
Hi Pat
Am afraid that I can’t offer any advice/help or even an opinion - do have liver secondaries but am not HER2 positive. DId just want to send you a cyber hug though and at the same time “bump” your post up to the top in the hope that someone more knowledgeable than me about herceptin will offer some advice.
A big cyber hug Kay xx
Hi Pat
I also can’t answer your query about herceptin. But I think your ‘case’ sounds complicated and wondered whether you have considered asking for a second opinion at another hopsital like the Marsden?
Also just wanted to say that though I don’t have mets elsewhere I do have them in my neck and chest area and they do change a lot…sometines quite quickly…and I get swelling. My arm also has lymphoedema and is quite weak at times…though I don’t have enough hair right now to need a hairdryer… but I know how scary it is watching the tumours change.
best wishes
Jane
Hi Pat
I dont have any answers - but I think that Janes idea is a really good one, it does seem really complicated and I can really understand your concern about herceptin…its awful when you can see or feel things happening…have you talked it through with your GP ? mine would be useless with something like this but there are good ones out there.
Cathyx
Huge thanks to everyone for your support.
Jane - I think you are probably right about taking a second opinion -and would be grateful if you could advise me what do I need to do to organise this. I feel a bit awkward about asking my onc as I am sure he already thinks that I am paranoid. I remember vaguely one of your posts were you recommended someone from the Marsden, could you send me his name? By the way, I am with BUPA if this makes any difference.
Pat
pat-
being with bupa makes a huge difference as you dont have to pay! you can also go back to your gp- tell them you want a second opinion at the marsden and they will pull out names, I am sure Jane will sendy you more.
Dont feel awkward with your current onc, it happens all the time and they have a professional obligation to help you with this (send on any information or scans) its like looking in another shop - but of course far more serious and important.
I dont know if you have used your cover, but also call your insurer and ask them what you have to do with paperwork, its not difficult, you just don’t want to find that you had to fill out a form after the bill comes.
cathyx
Hi Pat
I’ve sent you a pm. Hope it helps.
best wishes
Jane