Oncology doctors and experiences

Posted by suzjlance @suzjlance, Aug 24 11:42am

Hello, I had MGUS for 4 years. I was diagnosed with CLL in December 2025. This was through bloodwork and a bone biopsy. My oncologist at the time was very vague, and it was hard to communicate with him so I changed doctors. The second oncologist said I had CLL and LPL. I like this Doctor. He communicated well, but then he left the Oncology center and went somewhere else. My third Doctor, who I just went to, states I do not have CLL and that I have LPL. I am so confused! I have contacted my insurance to see if I can go to the cancer center here in San Diego, California. I’m waiting for approval. Has anyone else had this happen to them? Any advice?

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hun8ln2026 | @hun8ln2026 | Sep 8 10:34am

I've bn told by 2 doctors and 2 PA that I have ET which is not a blood cancer. My sister had CLL . I've bn on Hydroxyurea for 3 years, makes me sick, fatigue, bones hurt, trouble walking my dog now. Seeing a new doctor on September 15 th. Hoping this new doctor knows more than last ones and there is another medication that he can prescribe for me. Prayers to all that have this disease and other cancer disease 🙏

1995victoria | @1995victoria | Sep 9 7:42am

In reply to @hun8ln2026 "I've bn told by 2 doctors and 2 PA that I have ET which is not..." + (show)

@hun8ln2026 If you go to BloodCancerUnited website it will tell you all about ET, PV, MF, and CLL. They will send you information booklets, and they sponsor very good conferences with expert speakers

1995victoria | @1995victoria | Sep 10 9:55am

In reply to @hun8ln2026 "I've bn told by 2 doctors and 2 PA that I have ET which is not..." + (show)

@hun8ln2026 maybe your doctors and PAs are not familiar with Myeloproliferative Neoplasms which includes ET, PV, MF, CLL......

hun8ln2026 | @hun8ln2026 | Sep 10 12:40pm

In reply to @1995victoria "@hun8ln2026 If you go to BloodCancerUnited website it will tell you all about ET, PV, MF,..." + (show)

@1995victoria thank you, I will check out the Blood Cancer United website.

lorielLB | @lorieliebrock | Sep 16 12:45pm

In reply to @1pearl "Hi @suzjlance , What you are experiencing sounds very frustrating! I do live in San Diego..." + (show)

@1pearl
I was diagnosed the same, but not until I self referred to Mayo in Rochester. My experience here with my blood oncologist (Dr. Gangat) and stem cell transplant specialist (Dr. Hefazi) as well as all of the rest of the team has been outstanding. I am at day +70 after an allogeneic stem cell transplant and am looking forward to going home in about 35 days.

If you can come here, I highly recommend it. All the best,
Lorie

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