I wa assigned an oncologist by god knows who

Over Christmas I has my first seizure had surgery and then the dreeded news it was gmb I4. So our local small town hemotolgy oncology assocaites after three weeks of having been called and referrals given by teh brain surgeron calls me up and has me assisgned to one of there oncologists. Upon our first meting he told me he has only seen six cases in teh eight years he has been a doctor.. He is NOT a good fit for me but when I contacted the nursing manager to request a change to an oncologist who has seen more gmbs Im met with sarcasm and falsehoods and told she will decide who gets my case.. Seriously frustrated by the nuse bitch attitue and stuck with an oncologist without experience and one who I just simply do not like at all. Help!

Careg,

Have you gone online to find a neuroncologist near you? It's your brain and your GBM and you deserve someone with whom you have confidence.  Our neuroncologist's PA, told me there were only 136 neuroncologists in the United States.  We travel 1 1/2 hours to ours. I think there are many others who travel much farther. 

Just a thought.

Yes. my brain surgeon said he will make a referral to ucsf Dr. Butowski... So not sure how teh referral process works if I get in with Butowski will he oversee my chemo from there. He is in California six hours from me and I am in Medford Oregon.. Great town needs help for patients who suffer gbm..

i'm so sorry you have to deal with that nonsense on top of everything else...  :(

i just wanted to give some help if possible - when you travel to CA, try to stay at Hope Lodge, if there is a local one.  look them up online - if there is actually a close one and they can take you, it's a place you can stay for free while you get your treatment.  

all the best, sarah

Thanks I needed the words of a kind person today. 

Sarah Grey, It always amazes me how little I know.  I never knew of Hope Lodge and that it was free!!!!!  

If the N.O. and Neuro-Radiologist had told me about this free lodging, I would have been able to bring my son for Proton Radiation out of state instead of settling for photon(which is the next best thing).  But you can't beat Proton. I seriously think failure comes from what you don't know.  I am carrying this guilt of being the worst mother, jeopardizing my sons health because I could not and cannot afford the lodging out of state.  Now I know there are places that will support the family for the patients wellfare.  WHY didn't they tell us??  WHY weren't we directed to someone who does know within the hospital???? I don't read minds. It is not something that is on any of the burners of my mind. The system failed us in this way.   J.

If you have a reasonable group of doctos in Oregon, the doctor at UCSF can determine your treatment and the doctors in Oregon can administer it under his recommendations and suggestion.  We do it all the time in CO.  Our NO here will determine the course of action and work with the physician in a patient's hometown to do the hands on treatment.  Ask id that can be done.

Lorre

On Feb 04, 2013 6:44 AM vwxyz wrote:

Sarah Grey, It always amazes me how little I know.  I never knew of Hope Lodge and that it was free!!!!!  

If the N.O. and Neuro-Radiologist had told me about this free lodging, I would have been able to bring my son for Proton Radiation out of state instead of settling for photon(which is the next best thing).  But you can't beat Proton. I seriously think failure comes from what you don't know.  I am carrying this guilt of being the worst mother, jeopardizing my sons health because I could not and cannot afford the lodging out of state.  Now I know there are places that will support the family for the patients wellfare.  WHY didn't they tell us??  WHY weren't we directed to someone who does know within the hospital???? I don't read minds. It is not something that is on any of the burners of my mind. The system failed us in this way.   J.

 

i private replied more info, but i was just thinking...  you're unfortunately right - we need to do our own research and get our own info.  it's not fair and it's not right...  :(

i wanted to add, that our NO and even the social worker at NYU didnt know about Hope Lodge.   and HL is located in a ten minute's walk distance from the hospital!  crazy...  also weird, because it's sponsored by the American Cancer Society.  you would think a neuro-oncologist would know...  

thank goodness for this site - at least we can all try to help each other!  ;)