I had bc in 2006 which was treated - everything went fine. I have just been told in is back and because the lymph nodes in my collar bone are involved that it is likely to be somewhere else as well. I went for a bone scan yesterday and a CT scan today and am absolutely terrified. I am 38 with 2 girls nearly 9 and 6. I don’t know how I am finding the strength to go on at the moment I feel like I have had the complete stuffing knocked out of me. I go tomorrow for the results and have been told to expect more chemo. I am really worried about the fact that after the chemo I can’t get anything to slow it down like herceptan or hormone tablets. Is there anybody else in a similar situation and how are you coping on a day to day basis with your diagnosis. The doctor has told me that it is treatable but not curable, it’s not knowing how long it is treatable for and having to live with that that I’m really struggling with I can’t bear the thought of leaving my kids. Any support would be very welcome.
I really really know how you might be feeling right now.
I was originally diagnosed in October 2003 (triple negative) and got a recurrence last April in my chest wall and supraclavicular nodes.I too had bone and CT scans expecting further spread but miraculously there was no evidence of spread then nor in CT scans in September and December.
Since last May I have had xeloda and vinorilbine which worked for a little while but then the tumours in my nodes started to grow again. I am currently on carboplatin and gemzar. I’ll be scanned again soon. I had AC and taxotere for primary bc and if you haven’t had one of the taxanes before its likely you will be offered taxatere or taxol. (I may be able to have it again as its 4 yeras since I had the first lot.)
I’m older than you (58) and don’t know how I cope on a daily basis because much of the past 10 months has been psychologically very hard.
Its too easy to say ‘take one day at a time’ but sometimes that is all you can do. I so hope you have the ‘luck’ I had and that your cancer hasn’t yet spread anywhere else…my doctors were surprised it hadn’t. If it has you will find masses of support and information on the secondaries forum here.
The uncertainty is awful. Like you I have been told my cancer isn’t curable and thats also hard to get my head around as technically mine is ‘only’ a regional recurrence.
But somehow 10 months have passed since my diagnosis and I’m still hoping there’s no spread outside my chest wall and and shoulder area.
I am sorry to read of the worry you have at the moment and would like to suggest that you may wish to call our helpline, our specialist nurses can offer you support, information and a ‘listening ear’ which may help you through this difficult time. I am sure other users will be here to support you along with Jane very soon.
The helpline number is 0808 800 6000 Monday to Friday 9am-5pm and Saturday 9am-2pm.
Hi Diane
I hope you don’t mind me responding to your message because I am in a totally different position from you at the moment, awaiting results of an MRI following some tiny patches that were found on my liver. Had BC 3 years ago with bilateral mastectomies followed by reconstruction, lots of problems with the the reconstruction, but got there in the end. However, 2 - 3 weeks ago they found some tiny rounded areas on the liver where they can’t rule out metastases. Basically had MRI on Tuesday gone and currently waiting for the result. Could go either way, as bloods, liver function and tumour marker all came back fine, so it’s just a waiting game. There’s every chance that it could be nothing.
But when I saw your message though I felt terribly concerned and wondered how you been in touch with any of the ladies on the Secondary Breast Cancer site, because they are all fabulous and seem to support each other enormously. This is such an awful disease and so cruel because so many of the girls have young children and it’s so bloody unfair. I’ve had enormous support from one of the wonderful ladies on the site who responded to my original message when I first stepped into limboland, as I call it at the moment, she has kept me going over the last couple of weeks. Otherwise I think I would have cracked up. I have two sons, 15 and 19, and like you, that was all I could think of. At the moment I am basically sitting waiting for the phone call that tells me either way. I also rang the number the Facilitator gave me and the Nurse I spoke to was fabulous. I know the “taking it a day at a time” does sound like a cliche, but it’s sometimes the only way to get through. I know when my original BC was diagnosed, after the initial shock, I was in the middle of a divorce at the time as well and trying to remortgage to enable me to hold on to the house, the only way I managed was to literally think of that single day ahead, nothing more, I didn’t even look at the big picture, just tried to plan for that day, what little things I could for the boys etc, just to make that particular day better for all of us.
I really wish there was more I could say to help you but please contact the girls on the secondaries site though. I know you’ll get the support you need from them.
I have experienced two recurrences since my original dx in Dec 05 and just finished a second regime of chemo. In Dec 05 I tested triple negative and felt very vulnerable after slash, poison and burn. My last recurrence in August 07 meant a mastectomy, having previously had a lumpectomy then total lymph clearance. This time interestingly the cancer was retested and I was found to be HR2+.
I asked the consultant why this was so and I was told that over the last two years the testing for HER has improved. I not sure whether I was cross or relieved. Have you been retested, can you ask your consultant about this?
I live in Nottingham so Herceptin is given with out the postcode lottery fight. I have just had my fourth herceptin and this will go on for a year.
As to how I feel about any further recurrence, I have decided I can’t keep worrying about this, it is taking too much of my time up and ruling my life. On good days I just get on with things on bad days I except its a bad day knowing tomorrow will be better.