Waiting for an appointment in oncology: What else can we do?

Posted by mnmimi @mnmimi, Jun 17 4:27pm

My sister has been cleared by insurance to go to Rochester Mayo, has a patient number, and they have received records for review. She is in extreme pain and trying to get an appointment ASAP. Presumptive diagnosis is metastatic bone cancer. She is in Nevada, the local oncologist has prescribed morphine and Percocet, which hasn’t touched the pain. She is frustrated by the fragmentation of services here so is pursuing Mayo for a more integrated system. She calls them daily but can’t be given a guarantee that she will be seen or how soon, even though they say they expedite urgent cases. She is weaker and in greater pain by the day. Any feedback feedback on other steps you could take?

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Hi @mnmimi, it sounds like your sister is taking all the right steps to seek an appointment at Mayo Clinic. I encourage her to continue to stay in touch with the schedulers as she is doing. It can take some time for the team of Mayo physician experts to review her records and for an appointment with the right clinical team to be scheduled. I know that time is of the essence and this is hard news to swallow heading into the weekend. Being a patient doesn't mean one can actually be patient, right?

Has she been able to make an account on the patient portal, Patient Online Services? I wonder if that might be possible at this stage and if it would help facilitate communication.

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Just to keep progress going, were I you or your sister, I'd also check out M.D.Anderson in Texas and/or Sloan Kettering in NYC, the two premier cancer treatment facilities in the U.S. to see if she can get an appointment any sooner. Being in pain means time is of the essence and I'm the kind of person who likes lots of options "just in case" one falls through for any reason. There are also some excellent oncologists in Los Angeles in case she wants a second opinion in the meantime while waiting to see when she can get a Mayo appointment. Wishing your sister all the best…

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@colleenyoung

Hi @mnmimi, it sounds like your sister is taking all the right steps to seek an appointment at Mayo Clinic. I encourage her to continue to stay in touch with the schedulers as she is doing. It can take some time for the team of Mayo physician experts to review her records and for an appointment with the right clinical team to be scheduled. I know that time is of the essence and this is hard news to swallow heading into the weekend. Being a patient doesn't mean one can actually be patient, right?

Has she been able to make an account on the patient portal, Patient Online Services? I wonder if that might be possible at this stage and if it would help facilitate communication.

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She has Patient ID number and login for the portal but because she has not been assigned a care team cannot leave a message in the portal

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@mnmimi

She has Patient ID number and login for the portal but because she has not been assigned a care team cannot leave a message in the portal

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Is there a scenario where Mayo would say they will not schedule her at all?

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My wife, like your sister, had bone pain medications could not relieve. She received low dose radiation for both legs and both arms and has not had pain in over six months. Have her oncologist refer her for low dose radiation treatment.
https://www.mayoclinic.org/diseases-conditions/bone-metastasis/diagnosis-treatment/drc-20370196

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@onamission

My wife, like your sister, had bone pain medications could not relieve. She received low dose radiation for both legs and both arms and has not had pain in over six months. Have her oncologist refer her for low dose radiation treatment.
https://www.mayoclinic.org/diseases-conditions/bone-metastasis/diagnosis-treatment/drc-20370196

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Thank you for responding. To give more specifics about her situation,
my sister has a tumor in her hip, detected in an MRI with contrast. The MRI was done because her primary thought she had a torn labrum. So it was at that time the dx of metastatic bone cancer was made based on the MRI. She also had a PET scan and been waiting for a biopsy of the tumor to determine the source of the cancer, tentatively uterine per PET but that is inconclusive. So her local oncologist has not ordered ANY treatment, pending the biopsy which took forever to get scheduled, but now will be this week. The oncologist also referred her to both a gyno and orthopedic oncologist, neither who have seen her yet. She even had a friend drive her to the Gyno office to schedule an appointment and was told they would call her, 3 weeks ago! Still no call. Thus the extreme frustration…and relentless pain. Which is why she wants Mayo for care that is integrated with drs communicating and v working together.

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@mnmimi, it won't hurt to ask if your sister can receive low dose radiation while she is waiting. My wife still has cancer in her marrow but is no longer in agony. This link is about a form of vitamin E called annatto tocotrienol that may help keep the tumor from mesastizing while she is waiting to be seen. Always consult with the health care professional before using any supplement.
https://www.dougcookrd.com/annatto/

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@onamission

@mnmimi, it won't hurt to ask if your sister can receive low dose radiation while she is waiting. My wife still has cancer in her marrow but is no longer in agony. This link is about a form of vitamin E called annatto tocotrienol that may help keep the tumor from mesastizing while she is waiting to be seen. Always consult with the health care professional before using any supplement.
https://www.dougcookrd.com/annatto/

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Still waiting. Almost 2 weeks since requested Mayo appointment. Calling scheduling daily. Dr @Mayo has reviewed records per conversation with scheduling department. Excruciating to sit here without treatment as local doctors won’t do anything until get results of tumor biopsy (done yesterday 6/21)

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Only wish to say , keep going , things WILL get better , once it starts ! I was waiting , in pain , told 6 biopsies were "benign" . My lymph nodes were swollen and painful , and I had to scream and yell also , then 2 mths later it was confirmed stage 4 , MBC for lymph nodes , in lungs , and pleural area , and bones, skull, spine . Took forever to get treatment in place and its constantly a hassle but working on kicking the cancers' butt. HANG ON , PUSH HARD dont take no for an answer , know we are ALL pulling for you , You're not alone . Don't give up .

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I think it was somewhere in this site that I saw a script for a guided imagery about pain, using a “ball of healing like “to move through your body. I can’t seem to locate that script again. Help?

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@mnmimi

I think it was somewhere in this site that I saw a script for a guided imagery about pain, using a “ball of healing like “to move through your body. I can’t seem to locate that script again. Help?

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Correction: “ball of healing light “

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