I have just read all your posts and just want to send you all a hug and say thanks - your words have really helped me as I worry constantly about a recurrence and get that deep down sick feeling everytime I feel the slightest bump on my reconstructed breast. Your words have helped me so much x
Thanks Mandy and you are right that we shouldn't let the cancer control our lives. And I don't - we are off to Italy in 3 weeks but I was trying to look a bit further ahead and be realistic about things. I get so fed up with not really getting any straight answers - as I said, I am so annoyed that I was given no choice about the SNB and its implications - this only came out at a subsequent clinic visit when I saw a different doctor and it has put the idea of recurrence firmly in my mind.
My husband says what you say - go ahead and book and hope for the best! So we will!
Hope you enjoy your holiday in May - not long now!
I know how you feel, I was terrified of a recurrence and it has just happened. My experience is as follows:
I was diagnosed with invasive ductal carcioma in May 2006 and underwent AC chemo, WLE and axillary clearance 7/18 nodes affected (I think, can't remember) then taxotere chemo, radiotherapy and 1 year of herceptin. I was due to finish my herceptin 3 weeks ago and found a lump in an old scar from a cyst that was removed 4 years ago in the ame breast. Had this removed a week later and informed 2 days later that it was back, apparently I was lucky to have found it as it was the scar tissue I felt and not the tumour as it was only 0.5cm. (The oncologist said I wasa lucky! Nice hey!) Anyway, had a mastectomy a week later and no more treatment. They are not sure if it just managed to survive whilst having all the the treatment or whether it was a new tumour. I had booked two holidays this year a couple of weeks earlier as I was sick of waiting for the recurrence. The weird thing is that I am not as worried about it now that it has happened. I know I have a high chance of it coming back again but I am just going to live my life a few months at a time with my lovely husband and 2 year olf daughter, I get upset if I think too far ahead at the thought of not seeing my baby grow up.
I hope this has helped. Best advice I can give is that this disease has controlled you life long enough and its now time to live your life. Book a holiday, if it comes back then oops you may have lost a bit of money but I think its nice to look forward to something especially with what you have been through. My motto is that it is not going to control me, I am going to control it!! And I can't wait for my holidays in May and September, if it comes back then I will have more important things to deal with than a holiday.
Don't know if anyone agrees but live your life, get all them memories.
I hope this helps, live life to the full.
Lots of hugs
Sorry you're worried about the chances of local recurrence. I can't help about radiotherapy versus node clearance, as when I had my first bc over 9 years ago node clearance was the norm. I had a small Grade 1, Stage 1 (i.e. no affected nodes) very ER+ tumour and was treated with WLE, ANC and rads, plus 2 years of tamoxifen. Had to come off tamoxifen because of a rare side-effect and was considered so low risk that I wasn't put on any other hormone therapy. Five years later I was diagnosed with a small Grade 2 recurrence under the ANC scar. This time I chose to have a mastectomy to avoid more rads and am now on Arimidex. It was a shock to have a recurrence after my very good prognosis (my surgeon said I was just unlucky) but my second prognosis was also good and i'm trying to get on with life without worrying too much about the possibility of anything else happening.
Hope this helps
Trying to be positive and trying to plan some trips to look forward to I am just not sure how far ahead I dare commit to booking anything. I would really appreciate hearing from others' experience of recurrence.
I feel particularly nervous of this having been told at my last visit that local recurrence is more likely if they leave positive nodes in and treat them with radiotherapy rather than doing axillary clearance. I am very upset and angry about this situation but am stuck with it and am so trying to be positive and plan but keep remembering what I was told last time.
So would be glad to hear of others' recurrence experience.