Post-treatment follow-up question

olybee
olybee Member Posts: 85
in Head and Neck Cancer #1
My husband has SCC T4, had neck dissection in mid April, radiation through most June & July (seven weeks.) He's still "recovering," but here's my question:
He is followed only by ENT. The radiation Onc. released him to her, saying she could better follow his care, because she has equip. to scope throat, etc. Okay, that makes sense. On the other hand, he's had to go to ER twice, because he's become dehydrated, and ENT doesn't want to follow that, rad. onc. is "done" with him.
SO, when this was beginning, I felt I didn't know enough, didn't know about chemo, etc. He was halfway through radiation before I asked. The rad. onc. who saw us that day said, oh, there are various reasons you don't have chemo, like staging, etc. Then he saw he was stage 4. He just said, don't worry, the team met and decided on the best course for his care. I went with that, and I've tried to have faith that it is the right choice.
Now, here we are six months after diagnosis, and I'm still wondering, should he be seeing a med. oncologist? Is that even a possibility at this point to say, hey, I want him to be seen by one, see if that's who should be following up, etc.?
Please offer all opinions & suggestions!

Comments

  • George303
    George303 Member Posts: 11
    #2
    otolaryngologist
    were you ever given an opinion by a head and neck surgeon. his was my course of action. be glad to discuss..
    george
  • George303
    George303 Member Posts: 11
    #3
    George303 said:

    otolaryngologist
    were you ever given an opinion by a head and neck surgeon. his was my course of action. be glad to discuss..
    george

    my reply
    reply above was to olybee

    george
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #4
    ENT
    Same as John, my ENT is the lead on my med team. I had follow ups with the rad doc for the first 3-4 months, since then every follow up has been with the ENT doc.

    Never had a follow up with chemo doc, he explained he wouldn't need to see me unless any problems arose. I told him "don't take it personally, but I hope I never see you again". He just laughed.

    They explained they review all the cases together when the cancer board meets, same with the follow up results. Thus, even though I don't have follow ups with the rad and chemo docs directly, they are still involved in reviewing the latest scans etc. At least that's what they tell me. lol. Cheers.

    Jimbo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    ENT
    My ENT is and always has been the lead on my MD Team....

    He diagnosed me, took the tonsils out, staged me and chose the chemo and rads MDs.

    I'm 2 1/2 years out and he is still my main man.

    I saw him every 3 months the first year, evey four months the second year and now every six months.

    Chemo MD, every three months the first year, then every six months since. She's a Oncology-Hematology MD though, so she follows my blood work and thyroid progression.

    Rads MD at six months and one year the first year, cut loose after the first year.

    My GP is for everything not cancer related (physicals, minor medical, etc...)....

    Best,
    John
  • Greend
    Greend Member Posts: 678
    #6
    What I did
    I remember being told I had stage IV cancer, was a single dad and was scared/worried/terrified to death. The doctors immediately started making appointments for waht seemed like a thousand things while I was stillsimply trying to get a grasp on "CANCER". I finally just told everyone to stop for a day and I went to a GP I knew and trusted. I brought him all of my records and asked him his opinions, he reviewed them, told me why they were being done that way and then I was ready to proceed with peace-of-mind.

    I still insist, 15 years later that every record be provided to him and when we visit I'm able to get his opinion. I will say that on more than one occasion he has "highly recommended" that I consider either a different doctor or perhaps consider another treatment.

    In the early days this kept what little sanity I had within me.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    see all three
    Jim saw ENT first. He recommended the RAD doctor and medical oncologist. We saw the medical oncologist 6 weeks after last treatment, the ENT and rad doc one month after last RAD (he ordered the PET). The oncologist said will see every 6 months. Jim goes to a cancer institute taht has a coordinator who sets up all the appointments when getting started. All the doctors work together on treatment. This has worked well for us. The only doctor not in the group is our GP. We try to have all records sent to him so he can have the full perspective of health issues.

    Hope this helps.
    Debbie
  • buzz99
    buzz99 Member Posts: 404
    #8
    Which doc to see?
    Since your husband did not have chemo, I would not think he would need to see an oncologist for follow-up. You would have to ask. If you have a primary care doctor, he should be following him for everything other than the cancer diagnosis. The ENT can do all the follow-up related to the cancer. I don't know why she doesn't want to address the issue of the dehydration. My question is, why is your husband becoming dehydrated? We were told that 2200 ml (or about 73 oz) is essential. If he has a PEG give the fluid that way if he can't drink enough. Buzz had a medical oncologist and radiation oncologist managing his care. The RO is done with him now because after two series of radiation treatments (10 years apart) he is no longer eligible for any more radiation. For now he is followed by the medical oncologist and has occasionally seen the ENT. Hope this helps. Karen
  • olybee
    olybee Member Posts: 85
    #9
    George303 said:

    otolaryngologist
    were you ever given an opinion by a head and neck surgeon. his was my course of action. be glad to discuss..
    george

    opinion
    the ENT that follows him was his surgeon. I feel so stupid and lost. Is a head and neck surgeon different than an ENT surgeon?
    Also, he was VERY angry at his primary care dr. - dr. of internal medicine - because he complained for two years about this swollen, sore tonsil, not a normal sore tonsil. She actually told him on multiple occasions to ignore it, that it was just a chronic infection. The last time he saw her, she said she could reach back in his throat and squeeze it, probably "pop it" for him. That's when he decided he was going to go to a specialist. Next thing we know, we're on this rollercoaster ride through hell.
    My reason for telling all of that is that now he's got a new GP who really he has never seen before, and I'm sure she won't want to take on any cancer-related inquiries.
    she'll probably even be a little intimidated by this angry man who now doesn't have a lot of faith in drs.

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