spouse21 said...
Someone upthread said Dana Farber does this private/VA coordination. Does anyone know if there's a department at Mass General that could handle this? The oncologist was uninterested in moving this forward and doesn't seem to want to discuss this. It's so distressing since my husband is at a critical juncture in his treatment. Right now we can't get the oncologist's coordinator to call us back about booking appointments, let alone get advice about the VA mess. Maybe our insurance will cover all of it but we don't know. She's supposed to be getting permission from our Part D insurance for the Zytiga. It's all so confusing. Any advice or experiences that would be helpful? Thanks in advance.
Hi Spouse21. That comment about
Dana Farber might have been mine. I'm under treatment there with Firmagon, but not yet with Zytiga, Xtandi or other very expensive treatment. I have talked with my oncologist and nurse practitioner at DF and they tell me they can coordinate with VA and have done so for other patients. I've also asked my VA primary care doc. I only see her once a year to stay eligible for prescript
ions, eye exams, etc. and for possible future needs if my PCa treatment gets expensive. She said if/when needed she will refer me to a VA oncologist and if that doctor agreed it is needed, VA would provide Zytiga, etc. Coordination should be simple in that the VA can send the Zytiga directly to your home saving you a monthly trip to their pharmacy. Your Mass General oncologist should only need to know you are getting from the VA rather than from the Mass General or other pharmacy.
I've had no problem coordinating my other care between Dana Farber and my non-VA primary care doctor at UMass Medical Center in Worcester. My UMass doc is able to log in and see my latest test results from Dana Farber. When I had a kidney issue caused by an enlarged lymph node I had a temporary stent done at UMass Medical and blood tests done at my local community hospital, which is part of the UMass system - with test results sent to both my UMass and D-F doctors and reported on the patient access web portals at both UMass and DF. I don't think the VA has that same kind of direct access, if either VA or Mass General needs to exchange any patient records they can do it by fax (yes they still use fax for patient security reasons).
As for coordination - I remember someone posted here a couple of years ago - sorry can't remember who - who was at Mass General and was getting his PCa meds through the VA. And since Dana Farber and Mass General are both parts of Partners Healthcare, I would think that what can be done at one can be done at the other.
I would suggest your husband ask his VA primary care doc about
coordinting benefits and also talk to the Mass General businss office - the people you must have seen about
insurance, etc. when first becoming a patient. If your Mass General oncologist doesn't want to help with this, I would look for another oncologist either there or at DF and explain up front that you need to coordinate with the VA.
Jim
Age 72
-2002-PSA 9.4, 5 of 10 cores 30-50%
-RP 2002 PT3B N0 MX Gleason 3+4 75% left lobe small focus rt lobe
-PSA low 0.01 slow rise to 0.4
-SRT 2010 1 lymph node targeted. Casodex during SRT
-PSA 0.00 thu 2014
-0.02 Oct 14; 0.04 Apr 16; 0.2 Oct 16; 0.51 Jan 17; 2.46 Jan 18, 4.19 Apr 18;
-6.62 May 18 start Firmagon; PSA 0.45 Jun; 0.08 Jul '18; 0.02 Nov '18
Post Edited (Bohemond) : 12/13/2018 12:01:16 PM (GMT-7)