enlarged spleen all of a sudden. Need advice talking to MPN specialist Monday

[Pounds11]

freaking out here because all of a sudden I’m feeling pressure right where my spleen is. On HU since last May, five days a week one pill. Talking to Stanford doc Monday. What do I ask and what do I expect. Had blood work two weeks ago and everything in range, platelets 461. Not tired, no night sweats, no bleeding. Felt great until I started feeling this. Haven’t lost weight. I’m always intimidated by this doc. My problem so I want to be prepared. Thank you so much for any advice. You all help so much.

[hunter5582]

I always go with a written agenda to appointments. It helps me to be organized and clear in what i want to accomplish. I give the doctor a copy and have my own for reference. This is the basic format. You may have seen this before.

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.

No matter how you approach the appointment, do so with confidence in seeking answers. Your doctor is your partner in a shared decision making process. The doctor has medical expertise. You are the expert in what is going on in your body and what your treatment priorities are. By combining each of your expertise, you can make good decisions together.

Wishing you all the best as you move forward.

[saltmarsh]

I think Hunter's advice is spot on. Organize your thoughts and communicate effectively. Prepare as if you were presenting at an important meeting. Because you are.

Meanwhile try to focus on the positive - you're feeling well and numbers are good. Wishing you the best.

[ts75]

How can you know it's your spleen? Isn't it more likely digestion issues? The colon is also right there... Just saying...

[Pounds11 in reply to ts75]

thank you for that. I think I pulled a muscle. Sometimes I just look for things to worry about.

[ts75 in reply to Pounds11]

know the feeling!

[3cance]

I’m not as organized as some others. I wish I was. Having said that, I do take time before my appointment (a day or more is best) to write down what concerns I want to tell my doctor. I also make note of anything I have read that I want to discuss with him. My list isn’t fancy but it is legible with enough information that I won’t forget what I want to talk about. I review my list while I’m waiting to see him so it’s fresh in my mind. When the doctor comes I have my list out ready to use and visible to be seen by him.

I record my visit with my doctor. He is ok with that. I use my iPhone to record. Later I can review the recording so I can hear again what we discussed.

Good luck. Remember you are there for you and so is your doctor.

[Meatloaf9]

Good luck at you upcoming appointment. I also have a recently enlarged spleen, it is now palpable - never was before. Please let us know what your specialist thinks about your spleen becoming enlarged. Best