Dr. McClary, one of the excellent physicians from Grand Rounds, called and was able to help me decipher some of the pathology questions that have been driving me nuts for a week and a half.
Regarding Grade II Myxoid Chondrosarcoma:
Myxoid just describes how some of the cells look. What I have is not the same as the “extraskeletal myxoid chondrosarcoma” that everyone talks about in the literature. In my case, “myxoid” is just a relatively unimportant detail. In terms of treatment, it really isn’t any different than general skull base chondrosarcoma.
Whew! That one had been aggravating me all over the place, because when I looked for research on myxoid chondrosarcoma, a bunch of articles came up that didn’t seem to have anything to do with my stuff, and really didn’t make sense. Now I know why.
McClary pointed out that the Grade II part is the most important thing to focus on, and for a skull base chondrosarcoma, the difference between Grade I and Grade II are extremely minimal. He said the main difference has to do with how they look rather than how they act. Grade II is just a bit more cellular than Grade I, but they generally function very close to the same way. He said the big difference is between Grade I or II and Grade III. Once you reach Grade III, you’re dealing with a chondrosarcoma that is very different (worse) because it has spread and has become metastatic. A Grade III chondrosarcoma has extremely distinctive pathology.
Dr. Ferreira also mentioned that Grade I and II are quite similar, but the additional explanation from Dr. McClary helps clarify why that’s the case, which is a huge help.
As far as next steps, McClary deferred to Dr. Aghi, who provided my second opinion. With regards to radiotherapy, he pointed out that it’s Dr. Aghi’s recommended procedure, and the research supports it’s use because although there is an extremely minimal risk of the cancer becoming worse from the radiotherapy, that risk is far outweighed by the overwhelming number of cases where the outcomes are far, far better for people who proceed with radiotherapy.
I’ve read the research, and it’s very true that people who get proton radiation therapy tend to have massively lower recurrence rates and a solidly higher likelihood of long-term survival.
I also asked him about whether it makes a difference how long a person waits before proceeding with radiotherapy. He said it seemed to him that Dr. Aghi was recommending the procedure within six months, but he didn’t have any data about timeframes that would indicate whether waiting a year would hurt anything.
To Dr. Ferreira’s point, I suppose if it’s the sort of cancer that grows enough in a year to be dangerous again, we’re likely to be dealing with something that probably wouldn’t have been as curable whether we jumped on it immediately or waited for a follow-up. He seems to feel that type of extra-fast growth is unlikely.
This conversation with Dr. McClary helped a lot, by explaining things that weren’t making as much sense as I needed them to make.
Unless some compelling data appears that I haven’t seen yet (always a possibility), I’m currently leaning heavily toward removal of the remaining tumor bits followed by proton radiation therapy. This won’t be super-fun and will almost certainly have additional side effects, but I think it provides the best likelihood of long-term survival.
The remaining question is when… when does it make sense to schedule all this treatment? How long will it take to heal? How will the time frames and outcomes impact my career?
No research can really answer those questions. They’re just going to require some careful consideration and analyzing our budget to work through the details. This was an incredibly helpful morning. Naptime.
4 thoughts on “Dr. McClary to the Rescue”
I really don’t know where you find the energy to process all the information you are given and then to write about such difficult to understand medical studies, tests and reports in such a clear way. I’m assuming the whole process requires several naps?
I know you have tough choices ahead but can also see you are gathering as much info as possible in order to make an informed decision.
Ralph and I have been following your blog and want you to know that you and Abe are in our thoughts.
Thanks, Judi! Lots of naps definitely help, although that has improved some over the last few weeks. What also helps is the early start on the research. I read and processed lot of this stuff before the surgery, so now it’s more a matter of remembering the details and filling in the blank spots than taking in and analyzing a ton of new data.
Abe and I send our best wishes to you and Ralph. It’s always great to hear from you!
So often, people throw themselves upon the mercy of a higher power when confronted with a seemingly insurmountable situation. Whether that higher power is a god or a doctor or their own despair makes no difference. I understand that some people cannot get their arms around the change in order to wrestle it into clarity, but it makes me proud to have met someone who has the fortitude and support to seize the issue with directness and power in order to remove the mystery and illuminate the darkened corners of a vast and terrible time in their lives. When I grow up, I want to be you.
As always, thinking positive non-denominational thoughts about your recovery.
Mike! It’s good to hear from you – thanks for your very kind comment. The “positive non-denominational thoughts” thing totally cracks me up. I hope rollout is going well, and that you’re enjoying training. When everything settles down, you’ll have to let me know how it went.