Recently diagnosed
Hi ladies
I was recently diagnosed too (29/10/2014). My left breast had become misshapen, hot, larger than the other and very uncomfortable to the point where I couldn't wear anything but a sports bra. I could feel a large mass in my breast and my lymph nodes had swollen, too.
I had seen my GP but she calmed me down, no of course it wasn't cancer, it was just mastitis and antibiotics was what was required. Of course the antibiotics didn't work and ultrasound scans were inconclusive because the swelling was so bad. The Q-scan people also thought it was likely to be a deep abscess. After two visits to my GP, two antibiotics and two scans, I went to another GP who took one look at me and dispatched me to the hospital emergency department.
The hospital admitted me and put me on an antibiotic drip but arranged to take skin samples (which interestingly didn't show IBC) and a core biopsy of the lump and my lymph nodes. Boom - cancer. I have a 7.5cm tumour in my breast and two lymph nodes are cancerous. There are also a couple of other small lesions in my breast.
I've been diagnosed ER/PR negative and HER2+ so I've had neoadjuvant treatment - my first chemo (carboplatin, docetaxel + herceptin). The plan is 6 rounds of chemo and a year of herceptin and surgery after the chemo.
My first chemo was HELL. It's been 12 days and I'm only now clearing the metallic taste in my mouth and returning to a semblance of an ordinary appetite. I've lost 8kgs (although I was no sylph to begin with). The soreness in my legs and the mouthfeel was the worst I think. I will be a lot more prepared this next time around, as I now have worked out what I can actually stomach when I have chemo-mouth and I will be going in to battle with a juicer.
Emotionally this has been very up and down for me. I would feel I was "coping well" and then I would have a complete nosedive emotionally. I have found that the people I didn't expect to support me have materialised out of the woodwork so to speak and have been amazing.
There are three things I have particularly struggled with, in no particular order:
1. Being isolated - without my family and friends. Aussie isn't the country of my birth and I have a large family so they have been flying in and out of the country to be with me. Thank god I have my partner, the breast care nurses and my internet support groups. Even so, it is difficult sometimes because I just don't have that wide circle of people that I know that can help me with things as I have only lived here for 4 years.
2. A sense of grief at the loss of some of my life "opportunities" that meant so much to me. I had applied for permanent residency in Australia prior to my diagnosis on the grounds of my skilled career (I am a qualified solicitor). I am now 99.9% likely to be rejected as I will fail the "medical" portion of the application with my diagnosis. However we have invested over $7K in this application so whether it is doomed to fail or not, I must continue with it (basically immigration will not tell me whether it will fail or not, only that I either submit it and see, or forfeit the application/fees).
Career-wise I had just gone for a big promotion at work and had had an interview and was very likely to get the role. I'm now obviously on long-term unpaid leave and will go back to my old role after my recovery.
However - on the plus side - 18 months ago I moved from a role where I had no income protection insurance to a much bigger firm with more opportunities. They WILL keep my role open for me, they have approved my insurance claim, they will transition me back to a role I can do. This is huge - it's the difference between me staying in Australia or having to abandon everything we have here, the house we bought, the voluntary groups we are a part of, our community to go back to our birth country.
Before I was hit with chemo brain, I've also been able to write half a novel that has been bubbling around inside me. I aim to finish and publish it by the end of the year. :)
3. I won't be able to have children. My Oncology Registrar told me bluntly that post-chemo I would be "sterile" then blandly moved on to explain other side-effects while I sat shell-shocked trying to absorb what he had to say. I have heard differing opinions about this, and I am now not sure he is right. But. He made me bloody upset with his offhand remark (and lack of bedside manner to boot). My partner and I had planned to make a decision about kids early to mid next year. We are aged 41/42 and don't have children, but we are involved as mentors in a children's charity where we are Aunty and Uncle to a young boy from a disadvantaged background.
So that's me, sorry about the massive blurb. I've struggled to find people that have inflammatory breast cancer so it is great to meet you ladies.
I have two questions that have popped up for me - is massage and is the use of lavender contra-indicated with IBC?
Thanks, Nicola
