Dana-Farber Cancer Institute: Appointment #1

Today Teresa and I met with Dr. Michael Nathenson, a medical oncologist and sarcoma specialist. He came highly recommended by another patient of his. 

He is kind, intelligent, easy to talk to, willing to explain – in depth – a great wealth of information and provide explanations to our questions. And even some we hadn’t asked. 

1. Surgery might be an option.
2. If it isn’t, Trabectedin (Yondelis) makes the most sense to start next.
3. Clinical trials aren’t off the table, but they’re better saved until T has tried all the other known chemotherapies, rather than taking a blind chance.
4. Clinical trials would really have to wait anyhow, even if she’d already exhausted her other chemo options, until we get the results back from Foundation Medicine. There’s been some hiccups there but her case has now been expedited.
5. DFCI pathology confirms it is definitely myxoid leiomyosarcoma.
6. She is definitively stage 4. The distant metastasis in her case is the secondary tumor next to her liver. Since it was a uterine/pelvic area tumor to begin with, the liver site is distant (abdominal region).

Surgery isn’t without risk. The regular risk of any surgery, but also because not only is the primary tumor quite large (again), but a second tumor is very close to the liver. I asked if it was invading the liver or simply next to it. He said it is just next to it, not in it. 

Teresa asked for more clarification on the nature of her tumor. The original tumor had enveloped one of her ovaries, but did not invade it. Dr. Nathenson said there are cases of LMS where it remains in the abdominal area and doesn’t metastasize to the lungs, which one of the usual first places it goes. He agrees that the nodule in her lung, is likely scar tissue. Unless it grows larger, or develops spiculations (spikes), they really wouldn’t be able to tell because it is so tiny (4mm as of March 1; the May CT simply said “still tiny”). I had begun to speculate about this possibility, and had tried to search about LMS which didn’t metastasize outside of the abdomen, but wasn’t finding any case studies or journals, so it’s good to hear that is an actual possibility.

Dr. Nathenson said we would really need to speak with a surgical oncologist though to determine if surgery is a viable option. Before we left, he went and got us an appointment with Dr. Jiping Wang. Under diseases treated, it says soft tissue sarcomas, but among his clinical interests are issues involving the liver.  This makes us even more comfortable given the location of the second tumor.

While we know that he may not feel it is safe to operate at this time, we feel that Dr. Nathenson wouldn’t have gotten us an appointment with Dr. Wang if he thought there was 100% no chance of Teresa getting an operation at this time.

A question I have for him is if there is risk of too much bleeding from removing the tumor next to the liver, could they simply resect a margin of the liver, since that organ can regenerate?

I also want to ask why her weight isn’t going up as the tumor regrows. This tumor is nearly the size (cm-wise) as the one they took out in August, but her weight is staying stable at her final post-op weight. What’s in it? What’s different about this tumor that it’s nearly 30cm at it’s largest point but doesn’t appear to weight 32lbs like before? (There is some fluid in the abdomen too, but clearly not 8lbs worth like before.)

There’s also risk of extensive bleeding from removing or debulking the primary tumor; as happened the first time. Hopefully this time they could also complete her hysterectomy and remove her cervix. A big advantage this time is that despite having stage 4 cancer, SHE IS IN MUCH better health than she was for her August 25, 2017, surgery. Her hemoglobin, despite still being under the low end of normal, is considerably higher than it was last August. Her other numbers, both on her CBC and CMP have been good, and I don’t think anyone would consider her malnourished at this point. Aside from some on/off issues with taste and swallowing, chemo hasn’t caused problems with eating. She still has a good appetite.

We will meet with Dr. Wang at 9am on Thursday, June 28th.

We have tentatively scheduled a chemo and office visit for her on July 5, but if surgery is viable, we will reschedule again.

I will update again as soon as possible after the appointment this Thursday.

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