Hi all ... well, this has been a whirlwind I'm not particularly enjoying, but I'm keeping my head up. I first noticed a very small swelling in late April but that wasn't at all worrisome ... I had prophylactic removal of both breasts as well as full hysterectomy last year since I tested for BRCA2 and had already had breast cancer in 2005. A little scar tissue was expected, and my surgeon did an ultrasound and concluded it was okay.
I'm a novelist so I'm on the road a lot doing book events and tours, so I was gone part of May, most of June, and had a month-long trip in July. I knew by mid-July something was up; the swelling had gotten far bigger and spread, and was now uncomfortable. I couldn't sleep on my side anymore.
The second I was home I went back to my surgeon. She took one look at was horrified, immediately did a biopsy, and it came back as undifferentiated spindle-cell carcinoma. At that time it was already 9 cm x 7 cm x 2cm.
We spent a long time getting jerked around by my insurance company trying to get referrals to specialists; nearly a month was lost in that struggle before we finally got an an appointment and got seen. Now it's 17 cm x 10 cm x 4 cm. It was totally inoperable in July, and even more so now as its against (but not in) the chest wall.
We've doing 8 rounds of Red Devil + ifosfamide in total; the hope that is after 3 or 4 rounds it will be shrinking and manageable enough to do the surgery. If not, I'll do the whole 8 and we'll do the surgery at the end.
It's a wild and terrifying ride on this, and I'd appreciate any wisdom others can share about what I'm in for. I finished my first round last week, just hit nadir and am coming back up. Luckily, fatigue seems to be my worst problem so far.
Thanks for listening ...
Rachel
Hi Rachel,
sorry to read about what you have been through already but good that you feel on the way up. My wife has Leiomyosarcoma and has had two different chemotherapies, the first had to be stopped as it caused a lung to collapse but that was fixed too and the second chemo has stopped the cancer growing - now been living with cancer for 6 years and really quite healthy so just getting on with life.
We are lucky to live quite close to a specialist hospital in this kind of cancer and my wife is generally seen by the top professor but sometimes when there is an admin screw up we end up getting help from PALS.
Hope your chemo goes well, the lift when you find the treatment is working is such a plus.
<<hugs>>
Steve
