Which oncologist to manage post treatment care

Nancy24
Nancy24 Member Posts: 72 Member
in Head and Neck Cancer #1

My husband has HPV+ oropharyngeal cancer. Primary tumor in left lingual tonsil with two lymph nodes in neck effected. We live in Utah but he is on his last week of proton therapy plus weekly Cisplatin at Scripps in San Diego. My question is who should be in charge of monitoring him when we return to Utah. This journey began with a surgical ENT oncologist in Utah who we really like and trust. He diagnosed my husband. We also met with both radiation and medical oncologists in Utah before deciding on getting proton therapy at Scripps. When we left Utah, our surgical oncologist said that he would be John's Doctor post treatment and would see him every two months the first year, then every three months, etc. He also explained he'd have a CT scan two months post treatment and a PET four months post treatment. He basically told us that he stays informed during treatment but takes over post treatment. 

When my husband met with his med onc today, he was very insistent that John continue to see both a rad and a med onc when we get home and NOT to have the surgical onc be his primary oncologist. His radiation onc at Scripps said he'd like to see John again and/or at a minimum stay in touch somehow. John will ask him tomorrow about who he thinks his primary onc should be. 

What did everyone else do?  Who "took charge" of you post-treatment?

Nancy

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited August 2016 #2
    doctors, appointments, time

    Nancy,

    Since mine was all local I saw my ENT, rad onc, chemo onc & general physician.  At 4+ years out I only see my ENT  & general physician.

    I’ve had 1 or 2 PET’s, 2 or 3 CT’s, 1 MRI and approximately 12 scopes & feels.

    I see my GP for my general health and my now defunked thyroid.

    I am very fond of my rad onc, but haven’t been required to see her for 2 years, but I still do because I always have  questions.  She is very positive about my treatment results. (cross fingers & knock on wood).

    I haven’t been required to and have not seen my chemo onc for 3 years.

    I still see my ENT every 6 months.  He passes visit information along to my rad onc.

    Pick who you like and stay in contact with everyone else.  Let’s hope you eradicated the crap and all future appointments are merely a formality.

    Matt

  • swopoe
    swopoe Member Posts: 492
    #3
    My husband is 7 months post

    My husband is 7 months post treatment. It is his ENT surgeon who is Going to be the main doctor who manages his care. This doc is a head and neck cancer specialist. He saw my husband one month after treatment, again at 3 months, at 5 months when my husband had an issue, and again at 6.5 months. He is the one who has ordered all the follow up scans. This doc has said he will follow my husband for at least 5 years. My husband has also seen his radiation onc for follow ups, but not as much- he saw him at 1 month, at 3 months, and will see him again next week. He has not seen the med onc since right after finishing chemo.

  • Barbaraek
    Barbaraek Member Posts: 626
    edited August 2016 #4
    Radiology oncologist and H&N surgeon

    We are followed by both the radiation oncologist - who orders our CT scans at regular intervals, and the Head & Neck surgeon who performs a scope to look at the nasopharyngeal area and throat all the way down to the larynx. 

    My husband's diagnosis was a nasopharygeal tumor HPV+16. He had no surgery because the location of the tumor precluded it. He is not followed by the chemo doctor at all. The general practitioner should follow him on a regular basis and monitor blood tests like those for thyroid functioning. Everyone will be different. Somewhere a while back I posted a list of questions and concerns your general practitioner should be aware of if you have had head and neck cancer. I'll try to find it and bump it up to a more recent post.

    Barbara

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    edited August 2016 #5
    More than 5 years post treatment

    Right after treatment, I spent equal time with my Chemo Oncologist, Radiation Oncologists, and ENT, as described by others above.  The Radiation Oncologist dropped out at the five year mark.  My Chemo/Primary Oncologist will continue to see me once a year into the future.  Same with my ENT. 

    Deb

  • Nancy24
    Nancy24 Member Posts: 72 Member
    edited August 2016 #6
    Thanks but why see so many oncs?

    Why do you need to see medical onc once chemo is completed?  And why can't ENT surgical onc be the only one to manage your care after completion of treatments?  Just trying to understand why so many oncs continue to be involved. Thanks. 

  • Barbaraek
    Barbaraek Member Posts: 626
    #7
    Nancy24 said:

    Thanks but why see so many oncs?

    Why do you need to see medical onc once chemo is completed?  And why can't ENT surgical onc be the only one to manage your care after completion of treatments?  Just trying to understand why so many oncs continue to be involved. Thanks. 

    Radiation oncologists...

    may have a better handle on the side effects and problems that creep up after radiation. Unfortunately radiation can be the gift that keeps on giving. There may be problems with lymphedema, jaw necrosis, dental problems, etc. Some surgeons may have a good handle on these, but the rad onc is the expert on radiation treatment and its effects.

    Barbara

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    Utah, Scripps

    Nancy,

    You can take charge.  You can see as many or as few as you wish.  Just pick a good one.

    Who knew that so many doctors want to keep seeing your husband (popular husband).

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    For the first few months

    of a year....it's good to see everybody.  ENT scopes the throat....Rad Onc knows and understands radiation side effects....Medical Oncologist knows and understands blood counts, and side effects of chemo.  I wouldn't drop any of them for a while.  My Rad Onc saw me twice after treatment, then set me up for an appointment a year down the road....ENT started at every month, then it was two, then it was three....same with the Med Onc.  They each have their expertise...and they worked as a team, using what they each know to get your hubby through this. 

    p

  • donfoo
    donfoo Member Posts: 1,773 Member
    #10
    everyone different

    I never saw the RO post treatment. The MO just told me there was not reason to schedule regular followups. Check in with him were pretty much just chat, not any poking or testing. The ENT/surgeon is my main doctor. Still getting scopes every 4 months. Will move to twice a year after next appt. (3.5 years post)

  • MichaelHill1
    MichaelHill1 Member Posts: 13
    edited August 2016 #11
    I want to see

    I want to go see all of the cute nurses.  Soo young though, they didn't even know what freebird was until I told them that it was the horrific guitar solo that was playing.  I told them it sucked as bad now as it did 30 years ago, and I could not radiate with that playing.  They changed it.  You may know them Nancy.  Yoo whoo I'm at Scripps too!!!

  • SylMarie
    SylMarie Member Posts: 91 Member
    edited September 2016 #12
    Nancy, I went out of state

    Nancy, I went out of state for surgery and I'm heading to the same place for rads and chemo at the end of next week. After surgery, my surgical onc. told me he would see me every 3 months for the first two years, then every 4-6 months for the next year, then every 6 months up to the 5-year mark. Something like that. For me, that means flying up there for all those follow-ups, but it's what we committed to do. So far, I haven't heard from my rad. onc. or my med. onc about their post-treatment plans for me. I am hoping I can just make post-treatment follow-up appointments with the three of them on the same days! There is no way I will be flying back and forth more than necessary.

    That being said, my family doc (gp) said I should have a local oncologist of some sort in case anything comes up between those follow-ups that I will have out-of-state. I have not found one and have no idea whether that should be a rad. onc. or a med. onc. If you figure out what you're going to do, can you share with us what you decided?  Thanks.

  • Nancy24
    Nancy24 Member Posts: 72 Member
    edited September 2016 #13
    Made a decision

    Thanks to everyone for your responses. After talking to radiation onc and chemo onc (again) it was decided that the ENT surgical onc in Salt Lake City who did the original diagnosis (but did not perform surgery) will be his primary onc going forward. The radiation onc at Scripps has asked that all documents and scan results be sent to him and that John stay in touch regarding how he's doing. 

    Michaelhill1 - my husband introduced his team to quite a variety of music, most of which they did not know. So I knew that they were young. Didn't know they were cute, too :)

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