Glioblastoma SCT advice

[Robin Roberts]

I am sitting in the hospital next to my 39 year old husband who just came out of surgery. Turns out that only 50% of the tumor could be resected and it looks like a glioblastoma. Grading/staging will not be available until next week. With aggressive treatment we are told likely 40 months of life left. I sit here devastated at the thought of our children being without the wonderful father they adore. Does anyone have advice or experience with this? I am devastated and don't know even know where to begin to pick up the pieces.

[dmdgood]

Dear Robin. Gosh, that is devastating news. I have a tumor myself, and don't know what it is since I haven't had surgery, but one always hopes that things will work out well. Sometimes they do, and sometimes the universe has another plan. I get by by being grateful for every day that I am alive and can share in the lives of those that I love.

Out of curiosity, where is your husbands tumor, and what sort of symptoms did he have prior?

I hope that you get some better news once they work out the type/ grading, and that he recovers well from the surgery too. Let us know how you he goes if you can.

DM

[Robin Roberts]

The tumor was between C2 and C4. He had the symptoms (pain) of a herniated disk but then he started having numbness, weakness and itching in his hands and arm and the pain got worse. He started out with PT, an xray and finally got the MRI. He is recovering well from surgery and we are still waiting on the final pathology that will guide treatment. All of his strength tests are good but he has loss of sensation in many areas which may or may not improve. Feels like our lives have been turned upside down in less than a week.

We are trying to have hope and take it one day at a time but crippling fear and anxiety sometimes takes over.

I wish you the best of luck. Are you planning to get surgery?

[dmdgood]

Hi again Robin. Don't give up hope. I posted this replying to another member on this forum who has an astrocytoma, to provide hope. It's of yet another member, also on this forum, with a grade III astrocytoma, who was still alive after 33 years:

spinalcordtumor.proboards.com/thread/1885/intramedullary-astrocytoma-surgery

The member had radiotherapy following a partial tumor resection. He has some deficits, but this was back in the 80s and technology and techniques have improved tremendously since then. If you follow the link, there is also a further example of someone else who is still alive after many years after an aggressive/ high grade SCT.

My tumor is also in the cervical cord, closer up towards the brainstem. I was diagnosed at about this time last year. I have a few symptoms which led me to the diagnosis, but I can't justify surgery right now with these symptoms. Mainly they are pins and needles in my hands and legs, and at times a stiff neck and/ or a headache. But I believe that's it inevitable that I will have to have surgery at some point. I am in my late 40s, and most probably the tumor will grow.

I know that feeling of being overwhelmed with anxiety on some days. Hang in there as best as you can.

[Robin Roberts]

Thank you for pointing me to this thread. Gives me hope.

[dmdgood]

Dear Robin. Any further news on your husband's condition? How are you going?