Breast Cancer Now Forum

Hi Mabel, just found this thread again. Thanks for asking after me. I've had some strange red marks appear at my bra line and as this site was down I went to the GP. Apparently it's only radiotherapy damage (from over a year ago) but I also asked to be referred to the Marsden for a 2nd opinion. He said that there was nothing to be gained by this as I was having the correct treatment but the problem was lack of communication from the onc team. However I have now been given the name of my new onc (seeing him next week - old one retired)and been told not to ask questions I don't really want to hear the answers to as he is very open. I even had a chat to another new onc while having pamidronate and she has told me where my mets are. So quite a refreshing change. Just need to work out now what I want to ask the new onc. Hope you are keeping well. ... View more

Hi, I have IBC and was on Herceptin for a year. However I was found to have bone secondaries just before Herceptin finished. An interested to know whether this trial is still open or if it's likely to do me any good. I have no faith in my currect medical team (I think my oncologist may have retired recently - although no one has actually told me) and feel that I would like to be under the care of someone who has more experience of IBC. I didn't have surgery - and from what I've read on the internet now - everyone with IBC has surgery. Thanks. ... View more

Hi Rebecca, I was diagnosed with IBC in April 2007 and had 6 months of chemo followed by 6 weeks of radio. I worked through treatment, only taking a few days off after each chemo. I too have a stressful job (lawyer) and regret working as I got very bad review at my end of year rating as I was rated against my peers - who were obviously a lot more productive than I had been! I was told that I should either be fit to work or off sick - there was no inbetween. I continued to work as I wanted to keep everything as noral as possible. I also has a year of Herceptin which finished in October 2008. However, just before my last Herceptin I was diagnosed with secondaries in my spine. I am still working and have not told my managers about my secondaries diagnosis. They were not particularly helpful or interested during primary treatment and never asked me how I was. They don't seem to have noticed that I am still nipping out for medical appointments and still having days off (for biophosphonates). I was 43 at diagnosis. ... View more

Hi Merlyn, I have been on Tamoxifen since I finished chemo at the end of October 2007. In January my arm felt especially sensitive and I put it down to "fallout" from 6 weeks of rads in Nov/Dec. A week later the rash appeared and my GP diagnosed shingles and prescribed me a course of "horse pills". This is the first time I have has shingles but I think it's not unknown in people with supressed immune systems. ... View more

Hi Mabel, thank you for your replies. I feel that the sensible option would be to have the mast with immediate recon or even have a double mast - I really don't want to be lopsided (do a lot of riding). The trouble is that having finished chemo and rads I am sort of getting back to normal and don't really want to spending time in hospital and being unable to drive or ride my horse. I don't actually feel ill at the moment - only a bit tired at times. I don't feel that my head is ready to cope with such disfiguring surgery as it's still trying to come to terms with the events of last year. However I am not convinced about NED and sometimes have shooting pains and itchiness in the affected breast. It still feels a lot harder than the other one but this could be due to the rads. I really appreciate your responses as I haven't really had anyone to talk to who has gone through something similar. (I'm fed up hearing about other's benign lumps and the chemo room wasn't the most friendly). I hope you are keeping well. ... View more

Hi Mabel, thank you for replying. I haven't been told whether or not lymph nodes have been affected but I received radio to my armpit and collarbone area so presumably they were affected. I have never heard of anyone with ibc not having surgery (unless they already have secondaries at diagnosis) and most people also seem to have surgey before rads. How accurate can a biopsy be in the case ibc? I am concerned that one part of the breast could be clear but there could still be cancer cells elsewhere in the breast. Am I being stupid? ... View more