Breast Cancer Care Forum

Helen, all sorts of aches and pains can crop up after surgery, rads and chemo, but it sounds as though you should definately give your bcn a call - that's why they're there. You are not paranoid at all. Put your mind at rest by giving them a ring. Xxx ... View more

Even harder to find on the mobile site! Harder to bookmark too - but on the positives there actually IS a mobile site !!! ... View more

There are now I believe starting  to be other alternatives to herceptin (pertuzumab?)  but I understand that the NHS has decided not to use it which is a bit of a bummer! Glad the capecitabene is working well for you  Nicky  - that's good to hear. Its ages since I've been on here, really nice to hear from you!  xx                           ... View more

I have just come back onhere for the first time in a couple of months as I couldn't find my way anywhere at all with this new forum. Today I actually did, after hunting around for about 5 minutes, chance upon the link to latest posts, so in a sense that worked. However, it wasn't easy to find.   Ever since the old forum went away  I have struggled  - and I'm generally pretty good with finding my way about the internet. I also mainly go on facebook now, but its NOT the same of course , and it was BCC that kept me going for several years after my second dx in 2008. However, I am now getting a sense that there is a will to sort this out, so I'm going to try to come on a bit more often.  ... View more

 This happened to me. Dx er+ in 2004, Her2 neg in 2007  (I asked for the test, Her 2 testing as a matter of course did not begin until a while after my initial dx.). In 2008 I was dx with recurrence in chest lymph nodes, initially assumed to be similar to primary but luckily my onc put in for the her2 test on the recurrence and it was strongly positive. So thankful that he did. I had herceptin for 17 cycles. I always say to people with a second dx that it may be different from 1st - insist on a check. ... View more

I've only just found my way on to here due to an issue with my "name" being lost. And the first thing I tried to fins was (of course) latest posts. But I'm completely baffled! Where are they? Sorry if its me, and i know i have not posted much lately, but am I missing something here? ... View more

just to add in my two pennyworth - also had a 5cm tumour and had a long wait on the NHS. I actually went private for mx but in hindsight it wasn't a great decision as I than had a long wait afterwards before chemo on the NHS. Many tumours are slow growing and a few weeks delay does not matter at all. I wouldn't advise anyone to go private (unless covered for all treatment). all the best ladies, hope your treatment goes well xx ... View more

It is awful waiting for results - unfortunately it is something we all end up having to do and it very easy to let your imagination run away with you. Its good advice to keep busy - preferably doing things that absorb your mind. often the time in the "waiting room" can be extended by inconclusive results, which is a pain and prolongs the agony! It is no good saying don't worry because you will, but try not to let it consume your every waking moment. I am in the waiting room myself at the moment after several years, so I do know how you feel xx ... View more

Hi Sumica, I had a bone scan 2.5 weeks ago and have to get the results through an onc appointment on Monday The bcn won't even look for the results for me, and the GP never will give out results either. I'm just saying this because all hospitals seem to have diffrent procedures. I think we all worry about things like this (I am bloody terrified ) but we do tend to read things into things they say or the speed that an appointment comes through. Take care xx ... View more

Hello Dolphin 1. Its a terrifing moment when you find a new lump.It happened to me in 2008, four years post original dx. Mine was above my mx site, near my armpit and yes, it was cancer. But, devastated as I was to go through it all again, I did it and it was do-able. Its not something we want and I hope your lump is nothing but a bit of scar tissue , which is very likely, but if it IS cancer, then don't despair. Lots of people on here have gone through recurrences and are still here with no ill effects. Everything crossed that you won't have to go through it again xxx ... View more

Many congratulations Chalee.Great to hear it. Very cheering for those of us plodding on like me. Nearly 9 years since first dx but a recurrence along the way. Here's to you! xx ... View more

hi Beverley, I had 6 x fec then 4 years later 6 x tax. I have to say that both were hard, but the fec for me was worse than the tax, mainly because of the sickness withfec. I had no nausea on tax, but did get bone pain in my back. Stock up on painkillers and don't be afraid to get more from your GP if you are affected. Best to keep on top of it - it kicked in for me on day 4 and it lasted about 4 days. Everyones S Es are different though. Hope it goes well for you x ... View more

Thank you 3N3 - hope I dont need it, but good to know it may still work if the worst should happen and I need it again xx ... View more

Hello,thanks for your replies, no, it did not stop working, I had it as a preventative following regional recurrence as unlike primary, recurrence was Her2 pos. I had 17 cycles. however I wondered if I were to get a secondary dx (I am currently having tests for bone mets-fingers crossed it isn't though) whether would be able to have it again. The trials for and use of the other monoclonal drugs is really useful to know about. ... View more

Thank you for an inspiring post Blondie! Do you (or anyone else)happen to know whether if someonre (i.e. me) had herceptin once it could be used again if necessary? I had 17 herceptin following recurrence 4 yesrs ago, so am interested to know this. ... View more

What a very interesting thread and information to store away in case needed (hope not but you never know) but also great as it is saying to me that treatment for brain mets can be so successful. Opal, I hope all continues to go well for you xx ... View more

hello Lemongrove, glad to see you back. Have not been on here much myself till recently.Sorry to hear of the seroma issue and also the brain mets, but glad that you have had such good care and that you are in good spirits. Hope all goes well with the chemo. Love and hugs, xxx ... View more

hi Monica, I am due to have a bone scan on Weds this week to check out a pain very similar to the one you describe. I am 4 years from last dx (for a recurrence) and have been complaining of this for months, to GP and breast surgeon, no one thought was bc connected but I am now glad to have bone scan as have been getting more and more worried. I just want to know now whether it is or isn't bone mets. I would say with hindsight its best to get it checked out rather than worry for months . Although we don't want to think about these things sometimes we have to for our own sanity. I don't know whether this helps in any way. xxx ... View more

Ladies, just to add my story which some of you may find reassuring. Was dx with considerable thickening of womb after 2 years on tamox . I was then given a hystertoscopy (by this time convinced by very gloomy gynae consultant that I had cancer of womb) but in fact everything completely clear and then told that thickening itself no problem. Anyway, have had no problem in that direction since. Hope all turns out well for you all. xx ... View more

hello Zoe I don't live in Melton now, but I lived there for 18 years and had family there for many years. I went to school there but left when I was 18 to go to university and never came back to live.I don't go there often, but have relatives quite nearby.. I have had bc for 9 years, including recurrence ( but not dx with secondaries.) I do know how alone you can feel though. I hope that maybe someone nearby has pm'd you but I am happy to chat to you if it would help. Take care xxx ... View more