Quote from Ashera
I do appreciate your letter, although it did feel like I was being scolded. Speak to others about life in general? This...happens to be my life in general right now. And this board is also a place to get support and share like experiences and to gain information in areas we might not know ourselves.
My question about proton therapy - was not soliciting advice - it is a new radiation therapy and I'd hoped someone might have had some experience with pts going through that.
The poster above just sent me a wealth of info with sites to go to that I might not have run across on my own.
Again - apologies for sounding like I was asking for medical advice or requesting to "consult with specialists".
Please do not feel "scolded".....some of us who work with cancer patients are sometimes reluctant to advise on new therapies for many reasons.
First, we are not party to the staging/histiology of the cancer, or whether it is a primary/secondary/met, the patient's history and medical condition. Second, virtually every MD and many facilities do the same procedure very differently. Variations may have to do with minute tumor shape difference, signs of necrosis/non necrosis. All of these are things that we on the BB, not involved with the care of this patient do not know, and do make a substantial difference in treatment. And the side effects will vary accordingly.
As such, we are often reluctant to comment. Something that may be OP in some places may not in others, and often microscopic variations in positioning may be the difference.
Another point is that biopsy of brain lesions of any type are generally handled through neurology/neurosurgery and not through oncology. I recently worked on one of the few high level oncology ICU (cardioversions, vents, multiple drips, CVVHD, granulocyte transfusions). Oncology will frequently take s/p cardiac onco-related surgeries. But one of the only cases that we did not take back immediately postop was ...a brain biopsy. The MDs were reluctant to even order DC on the staples - 3 weeks post - it falls out of their realm.
I have been a fulltime onco nurse for over 10 years and over a dozen facilities - several in the top 10 in the nation. I maybe see an adult patient with primary (not mets) brain tumor every 18 -24 monthes or so, few and far between. A friend that works neuro sees them much more often. Thus neurosurgery/neurology would probably be a good source for info on biopsy/side effects. Onco is better equipped for the physical (nonneuro) effects of routine rad and of chemo.
A possible source of clearer info would be for you (or your local social worker for the case - all onco patients should have one) to speak to social work at the site/neuro onco for the procedure. They can tell you about postop followup routine, OP care, what the routine is. They also may be the ones (SW at the site) to make various arrangements for housing, FU, and often like a heads up on financial/aftercare issues. Or contact the office/department that will handle the procedure and have them send you the info sheets/books - nurse educators for the dept should have some. My experience at the higher ranked teaching facilities, is that they usually have lots of info sheets/books on procedures. Even with experimental/research issues - there are extensive consent forms that detail any "known" problems or experienced problems.
My heart goes out to you and I will keep you in my thoughts.