Need advice on telling hem I need second opinion

[BrookTownsend375]

I am female, 76, finished 6 weeks phlebotomy on 1,000 mg hydroxy and one 81 mg aspirin, dx PV, platelets 1 million right now. I have an appt at Mass Gen Hospital in late June, with MPN specialist. Have not told my hem. I want them to collaborate the way many of you have suggested. I need to know EXACTLY what to say to my hem, and I'll write it on a card and read it to her. At the very first appt, I felt she was very volatile and I don't want to make her angry and lose her. Would she just tell me to get lost? I'm nervous about this, even though I feel its a free country and I could consult with 6 doctors if I chose.

[upham28]

Sorry about this big pic, I clearly didn't know how to do it properly, I won't again. That's me on the left, the aggressive one, dragging my best friend thru Europe.

[gvibes]

Hi Brook, Its a pretty common thing to ask for a second opinion these days. I am sure your doctor has dealt with this many times especially with a rare disease like p-vera. I did it a year ago and my hematologist was great about it - an opportunity for him to learn. I think the cancer docs see this alot. So I work with my local hematologist and an MPN doc out of NYC. I let the MPN doc recommend the medication, set doses, and answer specific questions. My hematologist checks symptoms and prescribes drugs. I feel lucky that I have two docs looking out for me with different experience bases.

Good luck. I am sure it will work out.

[hunter5582]

I would say there is nothing to fear in telling your current hematologist that you will be consulting a MPN Specialist. Ethical doctors never mind collaboration with a colleague that has greater expertise in a rare disease type. Any doctor that did mind would be putting their own ego ahead of the best interests of the patient. I would fire any doctor that did that. I would not permit a provider like that to be e member of my care team.

I have two hematologists. One is a wonderful local hematologist who by his own definition is not a MPN expert. I also have a MPN Specialist at Johns Hopkins about 2 hours away. The MPN Specialist consults about my care plan. The local doc provides the ongoing care and helps me to execute the care plan. I am the case coordinator and ensure that all docs have all of the information. i make all of my care decisions and decide what my MPN care plan will be, in collaboration with my two hematologists. This arrangement works great. Note that my local hemo-doc has no problem with this arrangement. He is a wonderful provider and actually listens to me, spends time with me answering questions, and respects my right/ability to make good decisions for myself. We should all be so blessed to have providers like this.

I would say the answer to your question is just tell the current hematologist that you have elected to consult with a MPN Specialist. This is your prerogative. If this doc has a problem with that, fire the doc. I would note that I would have already fired a doc who was so volatile that I was concerned about how she would react to my decisions.

All the best to you. Great pic by the way. Please do post more.

[Cakeface]

I can't help with your question but just wanted to tell you that you look absolutely amazing! No way do you look 76!

[Meatloaf9]

Hi, when I was first diagnosed 4 years ago by my local hematologist, the very first thing he did was refer me to a mpn specialist for a second opinion. I don't know if that was out of concern for me or to confirm his diagnosis but it has worked well so far. I do what the specialist tells me to do and the local heme has no problem with that. I think any good doc would welcome a second opinion. If they fire you then you are better off without them. Mass General is a highly rated hospital and I feel certain their hematologists are most likely more up to date than the average local hematologist. Let us know what happens at your June Appointment. Best to you.