For the last several fluid draw procedures (thoracentesis, paracentesis), either they didn’t get a good reading in cytology and couldn’t say if there were malignant cells, or they didn’t send the sample to cytology at all. For Teresa’s 8/16 thoracentesis, we got good news: Negative, no malignant cells! PLEASE NOTE: This test was JUST for the fluid (pleural effusion) around her lungs! It does not mean the cancer is gone.
Yesterday, however, we learned that the CT shows increased disease. We haven’t seen the report yet, so I don’t know if it is with all of the tumors or just some of them. Or if there are even more tumors. But it’s not good news. We haven’t really reacted to it emotionally yet.
Dr. M told us we will need to come with a new game plan. We see her in the morning to discuss that. There’s one regular chemo left that’s been suggested: Votrient (Pazopanib). It’s an oral chemo. From what I know of it from others, it’s more geared towards stability than shrinkage. And I think it’s the one that turns your hair and skin very white.
But the 3 of us are all pretty much in agreement that it seems like T would have a better chance with chemo if there wasn’t so much tumor for the chemo to have to work against. So we’re all pushing for a surgical option. I want her to have surgery (she’s wanted it since last September) and I’m terrified for her to have another surgery. Last August, there was very little time between the shock of “it might be cancer” to “being wheeled down to the OR,” and, thus, very little time to think about it (and overthink it) and process.
Now there’s LOTS of time for that. 🙁
Tumors aside, though, Teresa is in way better shape than she was in August, so logically it seems like she should handle this surgery even better than her first one. But I’m still a huge ball of nerves and anxiety and tears thinking about it.
Dr. Kane in Buffalo, NY, at Roswell Park Cancer Institute declined to operate in February, but said he wouldn’t rule it out forever. He has many good reviews. He was very nice. He spent a lot of time talking with us. We liked him.
In the LMS group we’re in online, another LMS patient described a surgery which was much more extensive than Teresa’s initial operation. I asked where she had it done, because these surgeons sounded like the ones we need for Teresa. She told me Duke. And that the entire experience was wonderful. She’s since written me privately to give me names of who to ask for at Duke.
There would certainly be a large benefit to only being 1 state away from home, instead of 4. But we have family in NY, and not in NC.
I asked Dr. M what she thought, and she told me to reach out to both, so I will. And I’m going to ask what kind of surgical plan and team each place would be able to put together for Teresa, to help the 3 of us decide.
Tomorrow we will go to the Cancer Center to get her labs done, and to have the appointment with Dr. M. We don’t think she’s having chemo at all tomorrow. If not, then that tells us right away that it wasn’t even slowing the growth of any of the tumors.
T speculates that maybe she was always meant to have the surgery, and that’s why every chemo has been a fail.
Also, last week we met with a Genetic Counselor in Kingsport, TN. She took a family history, and had a blood draw done. She will be looking for DNA mutations which could indicate the cause behind the leiomyosarcoma, although it’s likely it was just random chance. But the tests could also shed light on if there’s anything else we need to be aware of, and if any of Teresa’s immediate family should have any testing done too. We should have the results of that in a couple of weeks.