Sep 14, 2012 - 10:38 am
Hello to you all,
My husband was diagnosed on Wednesday, via excisionsal node biopsy by an ENT, with Mantle Cell. We are scheduled to meet with an oncologist next Tuesday to begin this journey together. I know he will need a PET scan and BMB to obtain staging.
He is 52, in great health (besides THIS!), no "B" symptoms whatsoever, no other enlarged nodes that can be felt, normal blood work, normal LDH and a clear chest x-ray in March. This is such a shock.
I have to admit I am writing because I need encouragement that it is possible to beat this, there is light at the end of the tunnel. I should NOT have gone on the intranet as the information is mostly outdated and very frightenting. I know that long term survivors are out there and I would so love to hear from you!!!!
I am also hoping to get some information regarding how to move forward. We live in the DC/Baltimore area. Can anyone tell me the name of a doctor who is an expert in mantle cell anywhere close to us? Maybe I am doing it wrong but I am not having much luck searching on-line. Should we go straight to John's Hopkins or start with the local oncologist for the staging testing? As this is such a rare type, I don't want to trust his health and future to someone who is not up on the latest treatments.
Finally, what can I do to help him now? Normally, we would both blast out of work on a Friday, hit happy hour, then a movie, go to the mountains for the weekend, go to concerts...I'm thinking we should just continue to do so. He feels great and is doing so much better than I am now.
I did see my PCP yesterday to discuss managing my stress. I need to be there for him and not a ball of anxiety. My BP was 185/134 when I went in and they nearly sent for an ambulance until I told them my situation. LOL! By the time we were finished, it had gone down 40 points.
Why I feel more comfortable talking with people I don't personally know now is beyond me but I do.
Many thanks to all of you in advance. I have a feeling we will be getting to know each other well...