Jumping Back to the Time Between Surgery and Chemo – Part 1

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.

Dr. Jones writes on the exam table paper as she starts from scratch and tells me everything. I got to take this home with me … it’s going in the scrapbook 😉

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).

Again on the exam table paper, Dr. Jones mapped out the chemo plan. (Again saving for the scrapbook!)

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…

Author: jbarnescm

Just a regular person, diagnosed with breast cancer 10/2018, making the best of things, and keeping my peeps up to date

One thought on “Jumping Back to the Time Between Surgery and Chemo – Part 1”

  1. Janet, I would feel exactly the same! Let’s get this going so I can get on with my life! I felt minutely like that the past 2 days when I went in for cataract surgery. It’s hurry up and get there, wait for them to call you back, do the eye drops and etc., then finally the anesthesiologist, then it was wait for the anesthesia to take effect before having the surgery which is only 10 minute procedure of the 2 hours we spent there. I am glad you have a good medical team!! I was thinking the same thing about scrapbooking those papers! Your album title should be ‘Janet’s insightful journey with the big “C”.’ Prayers always!

    Like

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