Finding the right cancer care team
Hello,
I will be going to my 2nd visit with the hematologist/oncologist I was referred to by my PCP. My question is how did other people find their specialist. I am confident that it does make a difference to connect with a specialized care team for CLL.
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Thank you! I will research MPN specialists.
If you would like to get a second opinion from Mayo Clinic experts, you can self-refer. To submit a request, start here: http://mayocl.in/1mtmR63
I agree that care is not equal at all facilities. Here’s more information about chronic lymphocytic leukemia care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/care-at-mayo-clinic/mac-20352437
In my opinion, what stands out about care at Mayo is the multidisciplinary team of specialists. See more here:
- CLL: Mayo Clinic's approach to diagnosis
https://connect.mayoclinic.org/blog/hematology/newsfeed-post/cll-mayo-clinics-approach-to-diagnosis/
CLL
Suggest you do an online search for the MPN Research Foundation. These docs are much more likely to be up on the current research and treatment options.
I was fortunate in that I was referred to an MPN specialist by my functional medicine primary. Don’t let anyone stop you from seeking the right professional 🙂
Thanks for responding. I hope Mayo cancer patients participate in clinical trials to help ALL patients, wherever they live, achieve a cure. It is my only hope.
Your concerns are very valid. So much in medicine is left to profit. It's unfair to have anyone direct you to a care provider based on what is best for the hospitals in your area. I am convinced having a good caring care team does make a difference. I hope you will continue to advocate for yourself and continue to push for the care team you deserve as I am certain you have always done in the past for your patients.
I am extremely disappointed in my care. I have an onc/ heme who refuses to work with a cll specialist. I can tell, from discussing treatment options, he is not up- to-date with treatments. He does not answer my questions. I need a cll specialist and a trustworthy onc/ heme. There are no cll specialists here.
To allow me to be seen by Mayo, I changed my insurance...Only to be told Mayo won't see me because I come from an area where hospitals are closing or being bought out....
I feel completely thrown away and at the mercy of people who see me as a mere income rather than a valuable life. I was an oncology nurse, so I do not make this statement lightly.
I agree empowers as I met one lady in the department at COH who I contacted to see if they are paying the $6.000.00 bill I received from Anthem. She told me to not pay and do not worry. She has been in this department for 30 years and knows how to work with insurance companies. She told me to take care of me.
Wow I thought. How many smaller hospitals, not like Mayo, COH and other cancer hospitals do not have that help.
I try to advocate to others, that they keep calling and asking till they find the person to get them help.
Hello,
I have Polycythemia Vera and see a local Oncologist and an MPN Specialist at the University of Michigan. I don’t know what your specific diagnosis is but I encourage you to see a specialist that is trained and treats specifically within your diagnosed condition. My local hematologist/Oncologist is good but not specifically trained and studied in MPN’s. I feel confident that by working both with my MPN Specialist and local doctor is the best method of treatment for me as I live about an hour from UofM. They work in conjunction to be sure I’m getting all bases covered.
Katgob, the insurance companies are brutal. I know so much about fighting them now vs when I got sick. Sounds like the City of Hope stepped in for you just like Mayo did for me. It’s a shame that people have to deal with being sick and fighting, begging and pleading with the insurance companies too.
Mepowers,
That is great news . I found the department at City of Hope and the Doctors to be masterful at getting my treatments what is called "Medically necessary". I was denied a procedure after my mastectomy to expander surgery, so my plastics Dr called the insurance doctor. It was approved. Now I need to contact them about the cost of my future bone marrow transplant.