After the surgery the news was good – the margins around the tumor were clean and the sentinel nodes were clean. But the size of the mass (about 3.5cm) and the high grade of the cancer meant the surgeon was passing me on to oncology and that it was very likely that I would need to do chemotherapy.
There was an interlude of almost 3 weeks between that news (Oct 25) and when my appointment with oncology was actually made. Wise advice from someone who’s been through it… if you know a referral should have been sent, but you don’t hear from the receiving office, double check on both ends. Turns out the surgeon’s office had faxed the referral, but the fax hadn’t gone through and they hadn’t noticed.
I finally met my oncologist, Vicky Jones MD (I liked her immediately) – on Nov. 19 – one month out from my mastectomy. She was very thorough in explaining where her thought process was going with my cancer. She started from square one, and drew it all out on the exam table paper – which I took home with me.
One thing was keeping her from flat out scheduling chemo… At the time of the core biopsy (back in early October) the cancer cells that were biopsied were triple negative = no hormone receptors. At the time of the mastectomy (10/19) there was cancer found outside of the ducts, but it was not tested for hormone receptors. Dr. Jones wanted to know if those cells were the same or different. IF the cells found outside of the ducts had hormone receptors then she might want to do a chemo/hormone therapy combo treatment. IF there were hormone receptors and they were very enthusiastically active, then there would be a slight chance of doing JUST hormone therapy alone. So she put in a stat order for pathology to be done on the cancer cells found outside of the ducts. She also mentioned that I might be a candidate for a particular clinical trial.
This was the week of Thanksgiving. The week after Thanksgiving I was scheduled to work in Seattle… do I stay or do I go. I went. No word from anyone on Monday. I made a pathetic call to Dr. Jones nurse, Joyce (who I also think is wonderful) on 11/27 requesting possible results. Finally on 11/28 I connected with Joyce, and made an appointment to meet with Dr. Jones on the 30th to “put it all together”. Back to Yakima.
11/30 – NOW, I thought, NOW I’ll get a chemo start date! Nope. Still not that straightforward. First I met with the social worker, Melissa, who talked about my FMLA paperwork. Then I met with Dr. Jones – yes, all triple negative. no – no hormone therapy for me (I was not surprised). She mapped out the chemo plan, and offered me the opportunity to participate in this clinical trial (Here’s a preview on the ubiquitous table paper…I’ll explain it later).
It seemed like a pretty straightforward trial and I was ready to sign up right away if that was going to move things along… but no… the rules are that you have to take the paperwork home with you and really think about it. Can’t sign the papers on the same day you are presented with them. It’s the rule. But I met Beth, the clinical trials coordinator and she explained the trial and the paperwork in great length.
At the end of this appointment I had 6 vials of blood drawn, and had orders/referrals sent to VMM for a MUGA scan, and to Dr. Wooten to schedule a port placement. This was a Friday, Beth would call me Monday or Tuesday to schedule a time to sign the clinical trial paperwork.
I swear… after having things move SO fast at the beginning of my diagnosis, this was sheer agony waiting. It was hard to know when to be pushy and when to be patient. More in part 2…