My Cancer Care Coordinator REALLY came up with the goods and she was able to access the report and e-mail it to me.
She's the rockstar who found me accommidation and my report during the first episode.
She is a huge patient advocate and she breaks her back for each and every one of her people.
This report is broken into part A and B as I felt a need to cut out identifying info so when reading this read part A first.
In the phone consult the Oncologist used the wrong term for the new "mass"..which is understandable when describing it to me.
The Dr at the imaging facility who did the report in the break down of disease found in zones - in this case Abdominal and Pelvic - called it a "right pelvic wall mass".
IT's only when we get down to the Comments that the true nature of the mass is stated -
- New large FDG avid nodal mass on the right pelvic side wall.
The crucial and important bit of information here is NODAL.
It's a lymphatic nodal mass and that tallies with the pain I'm having in the right groin, the secondary lymphedema and the pain that follows EXACTLY the lymphatic drainage path down my right leg.
Here is where we get into the difficult decisions about if radiation, in this instance, is appropriate.
If this was a mere mass there wouldn't be an issue except for side effects like the exacerbation of pelvic radiation disease.
Now that I know it's NODAL in nature I'm even more worried about lymphedema.
Sure the radiation will destroy the cancer within the node but also the functioning of the node as well.
The frustrating thing is I haven't seen the PET or CT scans and I don't know which node has the mass and I don't know what part of the pelvis drains into the node.
It's some information, and I'm grateful for it BUT it isn't enough and it certainly leaves me with more questions and answers and I can't make decisions on receiving radiation on a basis of this report alone.
In fact this report infuriates me in its lack of detail but I'm sure it didn't need to be when it is paired with the scans.
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