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@barbdk

I haven’t read thru this whole thread, but in case it hasn’t been mentioned, there is an online support group for you, called Smolder Bolder. The co-leaders are Jessie Daw, a patient in South Dakota, and Teresa Miceli, a Mayo myeloma nurse who is also on the IMF Nurse Leadership Board. You can see their webpage at https://www.myeloma.org/smm.
I just returned from the American Society of Hematology annual meeting where there were quite a few sessions on MUGUS. I encourage you to check out our blogs from the meeting https://ash2023blogs.myeloma.org/.

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Replies to "I haven’t read thru this whole thread, but in case it hasn’t been mentioned, there is..."

I feel this is medical gaslighting as I waited 2 days no call so I called oncologist and the person stated the oncologist told her “ she does not have cancer” then she said “ we are only seeing new patients and you have been here before” I was flabbergasted as the doctor obviously did not read thru the 43 pages my Radiation oncologist sent them all imaging , bone and marrow biopsies and reports that diagnosed C40.22 cancer Mets l lower limb and the incomplete bone biopsy 2020 that did not do flow cytometry to confirm what the findings: Atypical Lymphoid infiltrate suspicious B cell Non Hodgkin Lymphoma but suggest fresh biopsy w cytometry to confirm! Never called me,
I think the oncologist looked at the PET CT scan I had done 2 months ago which should of never been sent but it is a concern that he would not have looked thru every paper and ortho/onc should have dealt w this fibula !
I filed a complaint with patient experience but I feel that will not do me any good and after this insult to my character I do not care to see that hem/onc and ? If I can trust anyone at Mayo and like I stated I have always been nice friendly and open with these doctors but I can’t say that in how so many have judged me, even sent to shrink to rule out hypochondria!! And the shrink stated “ you are not a hypochondriac but you have a lot of medical stuff going on and the doctors are not listening to you !
Well I wonder why as my signs symptoms have been dismissed for years, bone scans misinterpreted as normal then changed to metastatic disease and I was happy to hear the truth behind those bone scans results as Dr Anderson told me “ they are often misread! “ it is no wonder cancer patients get diagnosed when they are metastatic and no treatment available!
Sick of this whole mess