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Husband is a Hodgkin survivor - now has tonsil mass

pinsandneedles
pinsandneedles Member Posts: 8
Hello All...
I have been all over this internet, every day for 5 months now. My husband had Hodgkin's Lymphoma 10 years ago - found in Stage 3B. Tumors in his right lymphnodes and in his chest. He had a year of chemo/rad. 6 years ago he came home from travel with a lump on his neck. He was seen by his PCP who then referred him to the Oncologist and he was in surgery the next day. They said if we'd waited a week or so, he could have been full-blown again. A few years later, he develops a cyst behind his ear and we take him to the Oncologist (no insurance-paid cash), and he made an appointment to have it removed. Surprisingly, it disappeared. So here we are with yet another growth. This time it's on his tonsil. He told me about it on Mother's Day of this year. However, he tells me that he's had it for around 6 months. Yes, I know... why did he wait so long? Anyhow, I get him an appointment but they say his PCP is too booked to see him so they send him the nurse practitioner. I called and made sure they knew the seriousness of this matter with my husband's past. She looks at the mass and says, "oh yes, that needs to come out". But, gives him anti-biotics. She refers him to the ENT and he says the same thing. So he decides to do the surgery but says he needs to do a sleep study to obtain a breathing machine needed for after the surgery. My husband does that, and a breathing machine is approved by our insurance in August. After a few inquiry calls.... it never shows.

So here it is now 4 months after his initial ENT visit and he's barely having surgery in days. Almost a year with this growth cannot be good. I'm so scared. We are in our mid-thirties with 3 kids and not knowing is killing me. I don't know why I seem to be the only one worried. I've become expert on the possibilities of the actual diagnosis but am trying to keep some glimmer of hope alive. Anyone else gone through something like this..... Hodgkins, tonsil mass?? I can take it! Thanks for reading.

Comments

  • winthefight
    winthefight Member Posts: 162
    New Driver
    Hello,

    It sounds like your hubby should see his Oncologist immediately. Do not let the PCP take the lead on this. Your Oncologist can order a scan to find out what is really going on. Since your hubby is a survivor, there should be no lag in time on finding out what is going on here.

    If your Oncologist doesn't move forward on this, it sounds like you could use a second opinion. Some of the medical pros drag their feet a little to much. So, take control of the situation by demanding the best service with a greater turn around. 4 months is too long to wait and see. Talk with your Oncologist about your concerns. Let the Oncologist take the lead....with your guiding the car.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    Go With The Oncologist
    I will agree with Winthefight in considering seeing the oncologist for this mass. Your husband could be dealing with late effects from his treatments, and the oncologists are more familiar with the types of follow-up areas to be followed more so than a PCP. This is not to say that the PCP should not be included.

    But if you feel the oncologist is not getting you where you need, then you should consider seeing a late effects clinic. Most are major facilities like Sloan Kettering, CHOP, Stanford, etc. but have doctors who have studied and researched late effects and are really familiar. Before any surgery is done, depending on the type of treatment your husband was exposed to, his cancer and treatment should be considered.

    Just my opinion and experience, not fact.

    Paul E. (Hodgkoid2003)
  • pinsandneedles
    pinsandneedles Member Posts: 8

    Go With The Oncologist
    I will agree with Winthefight in considering seeing the oncologist for this mass. Your husband could be dealing with late effects from his treatments, and the oncologists are more familiar with the types of follow-up areas to be followed more so than a PCP. This is not to say that the PCP should not be included.

    But if you feel the oncologist is not getting you where you need, then you should consider seeing a late effects clinic. Most are major facilities like Sloan Kettering, CHOP, Stanford, etc. but have doctors who have studied and researched late effects and are really familiar. Before any surgery is done, depending on the type of treatment your husband was exposed to, his cancer and treatment should be considered.

    Just my opinion and experience, not fact.

    Paul E. (Hodgkoid2003)

    He has cancer.
  • wendy04
    wendy04 Member Posts: 2
    Help
    My mom also has hodgkins and now has a mass in her tonsil. Please let me know how your husband is doing. Thank you!