This morning I woke up at it dawned on me a bit more what I heard yesterday. And it didn’t make me happy. The prospect of what might happen – another 4 months of chemo therapy- is an awful one. I am a emergency case again.
I got loads of support from friends, IRL and virtual. And that helps a lot.
Thinking about the possible next steps made me question the reasoning of the oncologist. Why didn’t he have any values (SUV) about how positive the PET results were. Just a binary negative or positive is OK, but you get more information when you now how much positive or negative some thing is.
And then Matt mailed me. Matt is someone who found me online when I started my journey and who has the same cancer. He went through everything a year ago. He asked me about the PET SUV values and also about the BHCG blood markers in comparison to when I was diagnosed. Basically he helped me see that I should not to easily go along with what the doctor says. A Mediastinal Germ Cell tumor is a unique form of cancer with which there is not a lot of experience, worldwide.
When Matt was done with his first chemo he flew around the States to talk to several specialized Oncologists in order to have a good idea what the next step for him was. He found out that there are a lot of different approaches. One of the oncologists he met with is Dr. Lawrence Einhorn, Inventor of the BEP chemo (what they treated me with) and the doctor who helped Lance Armstrong.
In his email this morning Matt gave me the contact data and recommended to contact Dr Einhorm because he is the specialist in Mediastinal cancers. So this is what I intend to do. Today I already tried to talk to my own oncologist but he hasn’t returned my call yet. UPDATE: He is onboard.
I think this it is a wise step for me to talk to one of the world renowned oncologists who is also specialized in my type of cancer. Get the best help there is. Why not? An email is sufficient. Also, I really hope that my oncologist is willing to travel this part of the journey with me, together. We’ll see.
So I am not done yet. I am starting parallel to the biopsy this other ‘quick yet smart’ second opinion path. To know for sure that we are doing the right thing. And of course i’ll keep you posted 😎