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Thread: Lymphoma? (I read the sticky)

  1. #31
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    @po18guy — Thanks for your words of wisdom. I appreciate hearing from one who has been in the trenches, so to speak.

    @ghi5000 — I have no idea what to recommend, but maybe someone else here will. I am surprised they saw you at John Hopkins at all without a diagnosis. I wound up finding out that Moffitt will not even schedule me without a diagnosis first.

    I have read that there is such a thing as benign lymphoma. It is a lot rarer than the cancer, but it is a thing. Hopefully it’s what you have.

    Today, I got a call from our “Central Scheduling” saying that they are setting up an urgent PET scan for me. My immediate suspicion was that my CT scan results had come back and they didn’t look good. I called my oncologist’s office and they confirmed, but they said they couldn’t give me any details. I have to wait until the head nurse comes in and she reads the report to me.

    ETA: The head nurse called back and did her best to read the CT scan results to me. She said that the large lump I felt above my collar bone was actually two distinct masses (that had fused in some way???). They also found a third mass in my “medial paraspinal region” (where is this? In my back?). This third mass measured: 2.7x2.5x3.5cm. All the masses appear to have some kind of unspecified (at least by the nurse) abnormalities.

    She explained that my oncologist ordered the urgent PET scan to get more information so as to better pressure the ENT to move up my appointment (currently scheduled for July 31st).
    Last edited by Melisande; 07-18-2019 at 02:27 PM. Reason: More

  2. #32
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    Update:

    I received the written report from the radiologist today. Apparently, the nurse soft-pedaled the report on the phone. There was an additional “lesion” that the nurse failed to mention, for a total of 4 not 3 in the cervical region. One of these “lesions” was very close to my right vocal cord. The report said there was no evidence on the CT of paresis of the vocal cord, but that I should be monitored for this (for vocal changes). Not exactly what this singer wanted to hear. The report also said that: “The findings were most worrisome for metastatic adenopathy and/or lymphoma.” I love the “and/or” part as if I was somehow going to have both metastatic solid tumor cancer *and* lymphoma. (Dark humor alert.)

    My health insurance will not let me have the “urgent” PET scan the oncologist wants (or rather will not cover the PET scan) until they have the biopsy report in their hot little hands. So, it was back to the ENT/surgeon’s office to negotiate for an earlier appointment. I got them to move up the initial consultation up to this coming Thursday. But who knows when the biopsy itself will happen? If it is not scheduled to be performed soon, I will first look to see if I can get something set up with a younger, less experienced (but hopefully still perfectly competent) surgeon in the same practice. And if I still have no luck getting the biopsy scheduled with him in a decent timeframe, I will be starting the process at Moffitt.

    I am still feeling itchy, although this is waxing and waning. I am also feeling somewhat fatigued in spite of a solid 7 hours’ sleep. Last week, I got the results from the iron panel the oncologist ran. My iron saturation percentage came in a little under normal — at 18% where the lower bound of the reference range was 20%. The oncologist suggested I start with iron supplementation, which I have done.

    Other than mild fatigue and itchies, I’m feeling good!

  3. #33
    Super Moderator Top User po18guy's Avatar
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    PET scans are normally done to stage lymphomas - after biopsy. So, they are correct there. Neither the PET nor the CT will diagnose anything. The CT will guide biopsy and if a malignancy is ocnfirmed, ten the PET for staging purposes. The problem iwht PETs, other than cost and radiation, is that they can provide false positives. Infection, inflammation from a variety of conditions and the healing process , as well as others, all create elevated SUV numbers. If the surgery is too risky, you may simply have to wait until more grow, or they recede.

  4. #34
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    Interesting about the false positives on the PET scan.

    I have no reason at all to believe that they will have any problem accessing at least one of the suspect lymph nodes. It’s right above my collar bone and very prominent. The main reason why they haven’t done the biopsy yet is that I haven’t seen anyone yet. I got my initial consultation moved up to this Thursday. So less than 48 hours to go for that.


    What do you think is the best way of convincing my ENT/surgeon to get the biopsy done ASAP? My oncologist’s office already told them that my case was urgent, and I was not given a particularly early appointment. That I got myself when I called back and negotiated (I will not use the word “beg”).

    So, I have my oncologist’s opinion. I have the CT scan report was basically says: Red Alert!! I have a greatly increased risk of lymphoma — about 500% greater than average due to past immunosuppression. I don’t want them to dick around with antibiotics or if they agree to go straight to the biopsy put me off for another month or so.

    I suppose there is nothing else to do but be forceful, polite and direct. Other suggestions?

 

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