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Hi, I have never posted on this site before. I am 42 years old and married with a nine year old daughter. I have been healthy all my life until I was diagnosed in April 2004 with breast cancer that had spread to my liver.
I had no idea that I had breast cancer as I could feel no lump. I kept going to my doctor with other symptoms until finally one day I went with such bad reflux/heart burn that she sent me across the street to the emergency room. My doctor thought maybe I was having a gall bladder attack (I have since changed family doctors). This is when I found out I had Cancer. Anyway I was immediatly put on adjuvent chemo and was in the hospital for two weeks. After six of those sessions I started on Taxol and Herceptin in December 2004. Taxol was very hard on my body (really low red blood cell counts) and since my Cancer was now in remission they took me off and just kept me on Herceptin. Also, the chemo shrunk the tumor in my breast that there was little or nothing there and luckily I didn't have to have surgery.
I have been taking Herceptin ever since (until today) and have continued to improve. I've started back working parttime in January as I felt so good and I am now starting full--time next week.
What my concern is is that this week I had a muga scan and CT scan. I got the results today went I went to go have my weekly Herceptin. The CT scan I had is fine , everything is still stable(in remission) . The mammogram I had a few weeks ago is fine. However, the muga scan wasn't what I expected, it appears the Herceptin has been too hard on my heart(no symptoms though). So, they want to take me off the Herceptin.
I have been reading all the posts here for many months and it seems that lots of people get taken off Herceptin to give their body a break and the heart repairs itself and then they can go back on it again. In talking to them at the hospital today they said they probably won't put me back on Herceptin if and when the Cancer flares up again because it affected my heart so fast. Well, I feel like my security blanket has been taken away!! I am now very scared because things have finally gotten back to normal in my life again and now if the Cancer comes back (and stage 4 Her2 has a good chance of coming back) they will be putting me on chemotherapy again. I know that I should be living for today and right now everything is ok, but why would my doctor not let me go back on Herceptin if my heart recovers from the break??
I live in Canada, should I be getting a second opinion, or are they just telling me the worst case scenario? I mentioned about the new vaccine and I was told to bring in an article about it, because they haven't heard of it yet (probably not available in Canada yet).
Anyway, I am quite emotional today about this whole situation. I know logically that I have many other chemo options left but I don't want to have to use them up, I want the Herceptin.
Anyway, thanks for letting me go on and on................ Anything that you could let me know to give me hope/cheer me up would be great. I have been staying positive for this last year and thinking the best, but today I just can't manage that!!
Carolyn
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