Genetic testing results questions

[artydutch]

Thank you to all who have replied to my post. I am still bewildered and in shock.

I will get results from genetic testing this week and have most likely MF

Is there a list of question I should ask regarding results, prognosis and treatment. Can you get copies of histology reports on the NHS?

Any advice on how to prepare for the consultation appreciated.

Thank you

[beetle]

Hello. It is all pretty bewildering to begin with isn’t it! Your best bet for reliable information is to visit mpnvoice.org.uk.As far as accessing histology reports go I have found in my case that my blood tests are requested by the hospital and therefore do not appear in my GP portal. However I am given a copy of the results when I visit the clinic - you might actually have to ask for these

As far as questions go I keep a little notebook to write down questions I think of between appointments and I take the notebook with me. No doctor has ever objected to that so far! I am sure you get better treatment when you demonstrate that you are very involved in the whole process. Good luck and remember that there are some very knowledgeable folk on this forum and everyone is helpful and friendly

Good luck

[hunter5582]

Your records certainly do exist and should be accessible. Others have indicated that various systems in the NHS do in fact have patient portals. They are not always well advertised apparently. These portals typically allow you direct access to your records. Otherwise, you have to contact your healthcare system(s) to access hard copies.

Regarding prep for appointment, suggest going with a written agenda. I go to all appointments with an agenda with these contents.

Treatment goals:

Define what your treatment goals will be. Include quality of life, extend/preserve life, and other priorities. Define what constitutes quality of life. Rank order your goals.

Treatment Approach

Define what you preferred treatment strategies will be. Do you want to include complementary health interventions? Do you want to consider clinical trials? What level of evidence do you wish to see? Include MPN-expert consultation on your care plan as mandatory. Require holistic care from all providers, including specialists.

Updates on Health Issues

List everything so docs are aware of all that is going on. Even when it is not “directly related.”

Issues/Questions

Specific Issues & Questions relevant to this appointment

Treatment Options/Recommendations

Review Risk/Benefit analysis of all options, not just the one recommended.

Do please let us know what you learn. All the best to you.

[SoledadBarcelona]

You must have the resukts of your health. According to a gene test you have to ask about the kind of panel. Here are a lot. They usually test only a few genes because it is cheaper. You need the whole mieloproliferative panel of genes and also your allelo burden. Related to this, they can think about a medication more personalized. This is the way. Good luck!

[Otterfield]

If you have MF I suggest that you ask for a bone marrow biopsy if you haven't already had one. This will tell you the grade of fibrosis and will help you/your doctor decide on the best treatment. Personally, I chose not to ask about the prognosis as I didn't want there to be an expectation in my mind.

Make sure that the doctor explains ALL the treatment options and if you are not seeing an MPN specialist, do asked to be referred.

Good luck.