We apologize for the delay in posting. We know you have all been very curious as to what we learned from the sarcoma specialists we saw in Buffalo, NY. We received a LOT of information. The appointment was both physically and mentally exhausting. We’re still overwhelmed by it. I really had to sit and think about how to best share what we’ve learned. It was definitely worth going to this appointment. We learned more than we have from any other doctor to date.
But it is not happy news.
Roswell Park Comprehensive Cancer Center doctors, PAs, and nurses are all very thorough.
Our appointment started on time. First with a nurse, then with a PA, then another person – we weren’t sure if she was a nurse, PA, fellow, or another position.
Then Dr. Grand’Maison, and then Dr. Kane, and Dr. Kane’s fellow.
Altogether, it ran 4 hours.
Dr. Grand’Maison said she would have started with the same chemo Dr. Musgrave had, and then moved to the chemo she is on now. She said T’s reaction to gemcitabine/gemzar is rare but it happens, and had gemzar added as an allergy in T’s file. She can never have that again.
There are other chemos to try if dox/olara doesn’t work, such as trabectedin. There’s also some which can be done inpatient. Since there was no CT done prior to starting dox/olara, she is recommending to Dr. Musgrave that a CT happen ASAP for as close to possible as a baseline. Then at least 2 more cycles, and then another CT.
Without the initial baseline, it’s harder to tell if it’s working and that’s why she wants T to have several cycles, as long as there is no toxic reaction, to know for certain.
A basic explanation given:
Imagine that in December’s CT, the tumor was size 12, and then a month later, it became a size 16, but there was no January CT to compare it with. Then chemo started late January, and started to shrink* the tumor. After 2 cycles of chemo, a new CT is taken, and now the tumor is size 14. If we compare this to the CT in December, it looks like the tumor grew, but in reality, it shrank.
Since there was no January CT, even if it looks like the tumor isn’t responding in her next CT, Dr. Grand’Maison wants her to continue on the dox/olara for at least 2 more cycles, so that a more accurate CT comparison can be done.
* We are not saying that the chemo is or isn’t working. This is just to give you the best visual explanation of what’s going on (it was drawn for us on a whiteboard).
I also asked about zinecard (it was suggested in a LMS group I’m in) which is designed to protect the heart against the cardiotoxicity of doxorubicin. Dr. Grand’Maison seemed surprised T wasn’t already on it, and said she could send that as a recommendation as well. Zinecard is a chemoprotectant (but could still have unpleasant side effects).
She also said that clinical trials and various new procedures are good to keep in mind, but we need to do things with known results right now. She was glad to hear we asked Dr. Musgrave to send samples to Foundation Medicine, but for the sake of reality to keep in mind that there’s about an 8% chance it will come back with something helpful.
Dr. Grand’Maison pointed out that while sarcomas are rare, and leiomyosarcomas are a rare type of sarcoma, uLMS rarer still, and uterine myxoid lms, even more so, to remember that 30-40% of the patients she sees are LMS patients, so for her, it is a common cancer. This is exactly the type of specialist we needed.
Dr. Kane sat down with us and went through Teresa’s CTs and explained what different parts were and what they meant. This was the first time this was done. It was very helpful. It will give us a better chance of understanding future ones — not perfect by any means, but now it won’t be quite so mysterious.
He also explained why he won’t operate. (I did ask if he means no surgery, ever, or no surgery now. He said he never says never.)
If we’d known it was any kind of sarcoma to start with (which would have been difficult), and it hadn’t been found so last minute — i.e. at a point where surgery HAD to happen, the surgery could have been done differently. And better. But we didn’t know and there wasn’t time.
The tumor didn’t come out intact. Which we knew to a point because they weren’t able to get all of it. But what they did get, Dr. Kane says, did not come out intact. It came out in two pieces. LMS has a fragile covering, so when it broke, it created spillage.
For a visual, Dr. Kane said it’s like when you blow a dandelion puff and the seeds go everywhere and implant. That’s what happened with the surgery T had in August. Little tumor bits went forth and (possibly) prospered.
Although we don’t know for certain, it’s possible that although the gem/tax didn’t work on the left behind pieces of tumor in small size (or as it regrew) that it possibly did something to any circulating tumor bits, because as of her last scans (CT in December, Ultrasound in January), there is still no evidence of metastasis to the best of their knowledge.
Another surgery right now, however, would create the same risk. And he doesn’t want to do that.
(There is a blob of something next to the liver. The density is too thick to be regular fluid, and he said if it’s blood from the first surgery it should have gone away by now, but there’s a chance it could still be blood. It also hasn’t changed size over 2 CTs, so it just needs to be monitored.)
In addition, this surgery would be far more complex. Originally, it was essentially one large mass, either draped over organs or pushing them out of the way. Now, in addition to that, it’s also wrapped up into Teresa’s intestines. And, he said, looks to be adhered and/or pressed up against other lower abdominal organs. If he did surgery now, he estimates that in addition to the cervix (to complete her hysterectomy) he would also have to remove her bladder, her rectum sigmoid colon, some of the intestines, some of her vaginal canal/vagina, and possibly some of the liver.
She would have to have colostomy and urostomy bags – for the rest of her life. (I asked about bladder reconstruction but he said it wouldn’t be an option in her case, and it’s much more difficult than reconstruction for things like bones, because the bladder has to be so flexible.)
It would be a 2-3 month recovery period — and a full recovery may not happen. She would have to be off of chemo the entire recovery period, and if they couldn’t get it all, the tumor would start regrowing again, and the surgery could possibly have been for nothing.
Right now, he only sees surgery as any kind of immediate option if the tumor causes a localized point of obstruction (i.e. in her stomach or bowels), where he’d have to create a bypass so she could still get nutrition.
If she has a dramatic response to chemo (rare, but can happen), they could take her off of chemo, and let her immune system come back up. If the tumor stays stable (i.e. doesn’t grow off of chemo), then he could do surgery at that point. If the tumor starts to regrow, surgery becomes risky.
If surgery did happen, he may also do radiation to try to shrink the tumor margins from the other organs to make resecting it easier, and also minimize damage to (or removal of) other organs.
Right now, Dr. Kane says he is in the background of her treatment plan, but he gave us his card and told us to contact him if we need to.
He said Teresa just needs to do chemo for now, until we hopefully find a mostly or fully successful one. And that she could expect to be on chemo for many months.
It was still really good to hear that we are following the best course of action at this time. If surgery becomes a viable option, or a necessary one, we will go back to Dr. Kane. We’ve heard wonderful things about him, and from actually meeting him, we know he is someone we can trust.
Also, from our understanding, it sounded like they would be presenting her case to the tumor board, so there’s a chance more information may be forthcoming from them.
We want to sincerely thank everyone who has donated to Teresa’s YouCaring* fund, and to those of you who have shared it. It is greatly appreciated.