My story is somewhat complicated but here goes. I had IBC 11 years ago, aged 31. It was grade 3 (aggressive) and HER2+ but ER/PR-. I had several lymph nodes involved at diagnosis and a huge 10cm "tumour". I had chemo to shrink it, which worked remarkably well, and my mx and lymph node clearance showed just a 3mm area of dead cells and no lymph node disease visible. Because it was inflammatory breast cancer I had radiotherapy to the whole area and because it was HER2+ I had herceptin for 8 months after chemo.
I went on to have two boys and after breastfeeding the second one (with one boob) I decided to have a preventative mastectomy on my good side as I didn't want to go through it all ever again and there is breast and ovarian cancer in my family (though not brca1/2 as I was treated and it came back negative). When they removed the "healthy" breast they found several areas of non invasive early cancer.
Cut to late November, when I found a new lump on my "good" side. I was worried, but perhaps not as much as I should have been as I knew the chances of it being cancer were small. After all, I shouldn't have had any breast tissue left (though they explained at the time of my preventative mastectomy that they couldn't guarantee they'd taken every cell so I knew my chances weren't 100% that I would not get a new cancer... But they were very very low). They biopsied the new lump and checked my nodes, which they said looked clear on ultrasound. I was devistated to hear, a week later on the 6th December, that it was cancer - 7mm, ER+, HER2-, grade 2. I was leaving for a 3 week holiday to Sydney the following week with my family and told not to cancel or delay my holiday.
I went on to have ct and bone scans and got told, the day we were leaving, that there were several areas of concern on the CT (spine, liver and lung) and that they didn't have the bone scan results yet... but again told not to delay or cancel my holiday. They also told me they'd schedule my surgery while I was in Australia (for soon after I got back) so it didn't delay things on my return.
Well you can imagine what the holiday was like! Not much of a holiday when all I wanted was to get back to London (I'm at Guy's) and get treated /find out exactly what was on the CT. The day we got back I had an ultrasound on my liver (which is a cyst... Phew), another ultrasound on my lymph nodes as several had enlarged while we were away (was told they looked reactive but no biopsy was performed) and had a spine mri to see what the CT showed up. I got told last week that the bike scan was clear, the spine mri came back clear for mets (and I just have an anomaly on my spine). I was over the moon. But I asked when could I have the surgery as I'd spent so many weeks worrying and it was really getting me down. I also told them that the Dr I had seen in the clinic when I got my ct scan results had told me they'd request it while I was away. "We'll request it today" they said. That was a week ago.
I called yesterday to see if I date had been set as my shoulder and underarm area are now so painful I am taking daily painkillers, only to be told that the surgery was yet to be requested.
What do I do? My lymph nodes seem to be getting bigger and this is a grade 2 cancer (so it's not as aggressive as the last one but it's hardly slow growing). I'm convinced the lump has also grown in the last 6 weeks.
I am a massive fan of the NHS and cannot fault any of the treatment I had all those years ago, but they seem incredibly blasé about this and it's driving me nuts. While it may not have metastasised on diagnosis, surely waiting 2+months before operating is risky? We're told how important it is to find lumps early and, as a nation, spend a huge amount on screening women to catch things when they are operable and treatable.
To make matters worse, I started feeling dizzy a few weeks ago and when I mentioned it to the surgeon he just dismissed it and said don't worry about it. There may be a really good reason why I shouldn't be concerned but it's really disconcerting as it's a physical symptom that doesn't go away (no headache, vomiting etc so unlikely to be a brain met but you never know, right?)
I'm just looking for any advice from anyone who's felt let down by how slowly things happen and whether or not anyone else had had to wait as long as I have to have any treatment??
