Frustrated

[levismama]

First off, I have NOT been diagnosed with an MPN. I have had high platelets (between 450-520) since at least 2017 (not sure exactly because I wasn't monitoring my bloodwork prior). In May 2021 I was referred to a hematologist who said I had high platelets because I had extremely heavy bleeding from my menstrual cycle. At that time, I was also feeling fatigued (I actually have always felt fatigue since I can remember) as well as headaches often, and achy bones. I'm also getting a little older, 48 now, and was told it was all related. I had an endometrial ablation in June 2021 and my platelets came down, just under 450, so the hemo said it would continue to go down now that I no longer menstruate. Now almost 2 year later, platelets are back up to about 480. The headaches are constant now, literally all the time. I have a referral to a different hemo, but it is not an MPN specialist. My medical group is not willing to refer me to an MPN specialist because they don't have one in-network. Again, I have not been diagnosed with an MPN. My question is, what can I ask or request from this hemo that will be useful and will either rule out or diagnose me with an MPN? I'm so frustrated with how long it has even taken to get the denial to the specialist. Any guidance would be much appreciated.

[hunter5582]

Several questions to answer your questions.

It appears that you are in the USA and have private insurance. Is this plan a PPO, POS, HMO, or something else? This makes a big difference in your access to a MPN Specialist. The process for accessing specialty care varies by the type of plan you have.

I believe you have previously tested triple-negative (JAK2, CALR, MPL). Is that correct? Do you know what kind of MPN mutation analysis was done? Some tests are more sensitive than others.

The key questions at this point would be what kind of MPN genetic testing is indicated? Would a NGS Study be more useful at this point? Is a bone marrow biopsy indicated at this point? Are there any remaining causes of reactive thrombocytosis that have not been addressed?

I would also ask this new hematologist - how many MPN Cases have your treated? Do you have experience with triple-negative MPNs? If applicable (if you are diagnosed with a MPN), are you comfortable providing ongoing care if I consult with a MPN Specialist about my care plan?

There are several ways to go about consulting with a MPN Specialist. Remember that in some care plans your PCP is obligated to the insurance company and may not be able to help you access care out-of-network. You may be on your own to figure this out. Some people choose to hire a patient advocate to help them navigate these kinds of care issues. Here are some resources should you want to pursue that option.

aphadvocates.org/#

nahac.com/directory-of-advo...

You do always have the option to pay out-of-pocket to consult a single time with a MPN Specialist. If all else fails, this may be worth the cost.

Regardless of with whom you consult, go prepared to the appointment with the doc. Bring a list of all of your meds, copies of your labs (printed in historic view if possible), list of all health conditions, and a written agenda. This is the format I use fo all appointments.

Treatment goals

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment

Treatment

Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.

Hope that helps. Wishing you success in getting a clear answer.

[levismama in reply to hunter5582]

Thank you so much. Your replies are always so useful.

I have private HMO insurance and yes, need to be referred through my PCP and then approval or denial through my medical group. The only MPN specialist in my area was requested and denied.

I have only tested negative for Jak2 as of right now which was ordered by my PCP and done at a regular Labcorp lab. No other testing has been done at this point. My PCP has put me on low dose asprin to thin out my blood. I see that a lot of folks are on low dose asprin for years and nothing ever comes of it. I just really want to know one way or another and am hoping to get some answers or at least more testing from this new hemo even if he isn't an MPN specialist.

[hunter5582 in reply to levismama]

The standard protocol to assess for ET would be to test for CALR and MPL if you test negative for JAK2. In addition, a bone marrow biopsy may be required, particularly if you test negative for all three driver mutations. Your care team would also need to rule out potential causes of reactive thrombocytosis.

Diagnosing a MPN is beyond the scope of a PCP/GP. This is within the scope of a hematologist. You are already scheduled to see a hematologist who, even if a generalist-hematologist, should know enough to order the right tests. This would be a good starting point; however, optimal MPN diagnosis and care is optimally provided by a MPN Specialist.

Your PCP may not be able to help you go out of network. The PCP works for the HMO, not for you. That is not to say the doctor does not care, just that the doc answers to the HMO first. There may be limits and what that provider can and cannot do to help in this situation.

In many HMOs there is a process to access out of network care when the expertise you need is not available in network. You have to ask the right people the right questions to find out how to do this. There should be a customer service office you can contact. There will be staff, often called “Patient Navigators” who can help. Note, these staff also work for the HMO. You must ask the right questions. The question is not “can I” or “should I”. The question is “What is the process to access out of network care when the expertise I need is not available in network?” You may have to be persistent to get the question answered. You will certainly have to build the case that the expertise you need in not available. It will start with interviewing the hematologist you have been referred to. Start with “How many MPN patients have you treated?”

On this forum we have discussed how to define a MPN Specialist before. You will have to create your own list of what you expect. Here is my list.

MPN Specialist

1. Focus on MPNs as a primary/major focus of clinical practice.

a. Active member of a MPN Center/Clinic team

b. 100+ MPN Patients experience

2. Up to date on current and emerging MPN Treatments

a. Extensive experience with managing Interferons, JAK inhibitors, and other MPN treatment options.

b. Knowledgeable about clinical trials.

3. Values a collaborative relationship with patients. Respects the patient’s ability and right to make decisions.

4. Active participation in MPN research

5. Presents/attends MPN forums/trainings/conferences.

6. Knowledgeable regarding underlying mechanisms involved in MPNs.

a. molecular pathogenesis, kinase pathways, proteomics, genetics.

Wishing you all the best as you move forward.

[Labbymom]

Did you ever find out more about your situation? It’s very similar to mine.