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Old 03-22-2009, 08:30 AM   #1
Join Date: Jul 2007
Location: Surrey (UK)
Posts: 9
19 years and still going strong

This is my first time of posting so I am hoping there isn't a limit on words!

I was dx back in 1990 at the age of 45. On an examination with my GP 'cos I was on HRT she noticed a mass on my left breast that I was totally unaware of. I had a mammogram - the mass was 5cm and malignant (IDC Stage 3). ER/PR (-). Back as far as 1990 there was little information so we tended not to ask too many questions. I had 6 rounds of MMM chemo (mitomycin, methotrexate, mitozantrone) and responded very well to it - the tumour shrunk with the first round. I then had 35 sessions of radiotherapy and at the end the tumour was no longer visible. Back then there was no surgery if the tumour was not visible any longer.

I was fine for 5 years, but noticed then the same breast was changing. This was obvious to me but sadly not so obvious to the oncologist and from my first seeking advice to dx was 14 very hard weeks. I had a mastectomy (ILC) but on the advice of the surgeon did not have the lymph nodes removed because there would be a high risk of lymphodema. 6mths later on a regular check I had small red bite-like spots. Fortunately my surgeon recognised them immediately as a recurrence and did 3 biopsies on the area. They needed to remove all the tissue covering that side of the chest wall and patch it with a large area from my stomach. The surgery went well, and I had 6 rounds of ECF (epirubicin, carboplatin & fluorouracil). The side effects weren't nice - but that's nothing new to most.

Again I lasted another 2 years until 1999 without incident then about 6 weeks after a clear mammogram I found a large lump in my right breast so had mastectomy and full node clearance (ILC & at all levels in lymph). The tumour was 7cm and growing fast. I had 8 rounds of taxotere (not usually given in UK for primary bc). Hospitalised once with neutropenic fever I did not enjoy my time on taxotere and often felt I wanted to give up. This was followed by 30 sessions of radiotherapy).

In 2002 I found numerous lymph nodes around my neck, jawline and collarbone. My onc adopted a wait and see attitude as I had used a lot of chemo options. Towards the end of 2002 I got sciatica in my leg and couldnt put any weight on it without awful pain so scans were the order of the day. I was found to have extensive bone mets in my skull, all areas of spine, collarbone, pelvis & hips. I started on pamidronate and xeloda but had to come off xeloda after 3 rounds as it wasnt working, and put onto Navelbine. This shrunk the lymph nodes, but after a few weeks they returned again. At that point my onc checked out the stored tissue from previous ops and it had been noted that I was her2+++ and haven't looked back since. The bone mets are stable, the swollen lymph nodes have behaved. It is thought that all my problems were down to her2 so I have been really thankful for herceptin and am starting my 6th year on it.

I have passed many milestones for which I am so thankful. Seeing my kids graduate, our 40th wedding anniversary, and becoming a senior citizen!

I look forward to getting to know some of you, and hope you find my story encouraging.

asahizuru is offline   Reply With Quote