Not given much info

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• October 1, 2020 at 8:19 am #53082
  ellebeegrace

  Participant

  I don’t known if this is normal or if we should find another doctor.

  My husband has been seeing a hematologist for anemia for a few months now. They ran a bunch of tests and said his folic acid was slightly low. So they put him on folic acid for 3 months, then followup with the Dr. RBC, hemoglobin, hematocrit were all still low at followup so they scheduled a bone marrow biopsy.

  Got bone marrow biopsy done, was scheduled for followup with the doctor’s nurse practitioner. She said she and the Dr went over his results and he has MDS.

  She didn’t give us much info and we didn’t know what to ask. She told us it’s a type of cancer, but not leukemia. Said he would get shots every 3 weeks to increase his RBC. He got a shot that day. Retacrit Injection. They also want him on folic acid and B6 for the rest of his life.

  So that is about all we knew walking out of the office that day. I have since been reading up on it. And looked in his patient portal for more info — they don’t have an MDS subtype listed in his diagnosis. It says “Myelodysplastic syndrome, unspecified.” They didn’t tell us his risk level, but have figured out from his test results and the course of treatment that he is probably low risk.

  His next appt is not until Nov 3rd, aside from his next Retacrit Injection on Oct 13.

  Is it normal to be given so little info from the doctor? And is it normal for the doctor’s nurse practitioner to give the diagnosis instead of the doctor? His next appointment is with the nurse again instead of the doctor.

  Should we go to a Center of Excellence? Closest one is 3 hours away, but we’d be willing to make the trip. Or I know The West Clinic in Memphis is really good and is only 1 hour from us. My dad’s cancer was treated there, and other people I know have been treated there.

  It just does not feel right to me, how things are going so far with this doctor and nurse.

  Thanks for any insight y’all can give!

  October 1, 2020 at 9:10 am #53083
  Rita Knopick

  Participant

  I recently lost my husband to MDS that transitioned to AML. I strongly suggest you have your husband seen at a Center of Excellence as soon a possible. You can call the MDS Foundation and they will assist you with getting an appointment.

  Do not be reluctant to ask as many questions as you need to his hematologist and NP. The more informed that you are the better advocate you will be for your husband.

  Best wishes and prayers.

  October 1, 2020 at 9:43 am #53084
  Kevin Dugan

  Participant

  Before jumping ship, I would make sure doctor knows what you need. Get copies of all tests, Put your questions in written form so you won’t forget. Then insist that you speak with the dr. at your next appt. If they won’t answer your questions then look elsewhere.

  October 1, 2020 at 4:37 pm #53091
  Ava Rappaport

  Participant

  When I was diagnosed in December I too didn’t receive much information from the doctor and NP. Now I receiving answers. Give then a chance. The more you read and educate yourself, you will get answers.

  October 2, 2020 at 9:03 am #53098
  Michael

  Participant

  I was diagnosed in July 2016. Local hematologist gave me a brief overview and recommended Vidazza ASAP. When I went for first follow up, I was seen by PA, who couldn’t answer any of my questions. This caused me to pause and seek second opinion at a Ctr. of Excellence. Best move I’ve made. Vidazza was cancelled and I was put on watch and wait. The difference in BMB results from local hematologist and COE was dramatic. The COE is 3 hrs travel time each way. I go there at 6 month intervals. The COE dr. guides my treatment and performs annual BMB. I see local hematologist for monthly blood work. I am still on watch and wait.

  A COE visit and opinion is highly encouraged.

  October 3, 2020 at 2:13 pm #53101
  Dr. Lin

  Participant

  Agree with all. In addition, most centers offer televideo consults you can do it at home, as long as they have all your records.

  October 9, 2020 at 8:50 am #53157
  ellebeegrace

  Participant

  Thank you all for your responses, and I apologize for taking awhile to respond. This has all been a bit overwhelming, to say the least.

  My husband had an appointment with our PCP this week, whom we love and trust. She said my husband’s hematologist is good and is very thorough. She suggested rescheduling the next appointment and specifically asking for the hematologist and not his nurse. So we did that, even though we’ll have to wait an extra week to get in.

  Our PCP also told me to ask the hematologist for a copy of the pathology report and said if he tries to avoid giving me one, to insist on it. She said doctors here aren’t used to patients who study the test results and the disease like I do (I have a “rare” disease myself and have had to do my own research because my doctors don’t know enough about it).

  I agree with y’all about going to a Center of Excellence. Our PCP did too. So we are going to ask for a referral. Our PCP said the hematologist won’t be offended and that care will be coordinated with the local hematologist.

  So we feel a little better about it all. I think I just need to try to stop stressing over it all. My husband prefers knowing the bare minimum, and looks to me to tell him anything important, while I prefer to research and understand as much as I can. But I can stress myself out a lot if I don’t watch it. I don’t like unanswered questions.

  Thanks again to all of you. It is good to know we’re not alone in this.

  March 2, 2021 at 3:19 am #54099
  Michael Cassavaugh

  Participant

  We started with a local oncologist and ended up seeking a second opinion with Moffitt Cancer center- who actually found the p53 variant that made his case of MDS severe. Best thing we did. We also started emailing his doctor with questions and typically received answers with in a few days. We haven’t had an issue with results, they have printed them for us weekly so we could track progress- which was great when things were improving but not great on the decline. I question how much good having the results in hand every week was for him, he really felt good/bad based on what he read, not how he truly felt

  March 11, 2021 at 10:21 pm #54207
  Kathy Lynch

  Participant

  Hi, I agree with everyone…totally worth a trip to one of the centers of excellence. Be prepared for lots of more testing…theirs are much more in depth.
  I LOVE my oncologist but MDS is on the rare side and not many general oncologists are familiar with the complications of MDS.
  My doctor could not give me a complete diagnosis…so I went to Stanford. I was also diagnosed as a low risk and was put on a wait and see for a year, then put on Aranesp…it has been working for 6 months.
  One of the things I learned was low risk does not mean what one would think it does…it is just part of the rating system, it does not mean that is less serious diagnosis.
  Have you gotten the information packet from the foundation?
  Good Luck…your husband is lucky to have a wife who is willing to do the digging to figure out the best course! Hugs to you both

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