Questionable statements by a Radiation Oncologist... my Radiation Oncologist...

D Lewis
D Lewis Member Posts: 1,581 Member
in Head and Neck Cancer #1
I'm about 15 months out from end of treatment for Stage 4 BOT with mets to multiple lymph nodes on both sides. Some of you here may recall my comments during treatment about my Radiation Oncologist... fondly referred to as "the mollusk" owing to her 'warm bedside manner' not. I believe I received the maximum allowable total dose of radiation. Nothing was spared.

The Mollusk's remarks during my 15-month follow up appointment today...

"Oh, are you STILL experiencing effects from the radiation? Such as?"
"Oh, you still have no saliva?"
"No, I don't think the permanent hair loss on your chin and upper lip has snything to do with the radiation. I think it was the cisplatin chemotherapy..."
"No, I've never heard of anyone else ever permanently losing all their nose hairs as a result of radiation... Maybe it was the chemo again? Maybe it will come back?"
"Have you thought about sucking on candies during the day to help you with saliva?"

I'm getting all my follow-up done at the Stanford Cancer Center, with the Chief of the Head/Neck Surgical Oncology Department. Now I'm wondering if the Stanford option might have been a better choice for the radiation treatment.

Ah well. Live and learn, I guess.

deb

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    wow
    So she doesn't want to take credit for the hair loss??? hmmm - not that upper lip and chin hair loss is bad. Don't believe I've ever heard anyone here on chemo only have permanent hair loss. But I will say, I've seen several who've had rads say their hair came back (my back of head hair did not come back). Oh - love "Oh, you still have no saliva?" ARGHHH. I do have saliva (I did part of the amifostine shots) - it's decreased, but I do have some - and my rad doc NEVER expressed surprise at the limited saliva - we discussed it up front, and recognized it later. Also, he let me know up front where I'd have hair loss AND that it would be permanent. And what a joke: "sucking on candies". Like you haven't tried EVERYTHING. I will say that for me, once I could chew gum again, it was GREAT. Have you tried prescription for saliva? Name escapes me, but my doc suggested one that starts with a "p". Sorry doc seems to not be interested in anything outside the rads themselves, it seems.
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #3
    You've been clean since
    You've been clean since rads. I had my surgery at Stanford but radiation in Merced. My rad dr. was trained at Stanford so I felt comfortable, still do. My situation is very rare, my c traveled from rt. upper lip to left neck this summer. I found out that rad was only on rt. side (could have fooled me by the burn and the blisters and. . .) Had a left neck dissection in July at Stanford and waiting for rads to left side. My doctor (Dr. Tan the Rad Man) is a hoot. He has a great personality and spelled things out frome the beginning. He was shocked that I had mets. but we will deal with it.

    Don't beat yourself up not driving for radiation, it worked locally even if you had a mollusk as a dr.
  • Dav1965
    Dav1965 Member Posts: 132
    #4
    KTeacher said:

    You've been clean since
    You've been clean since rads. I had my surgery at Stanford but radiation in Merced. My rad dr. was trained at Stanford so I felt comfortable, still do. My situation is very rare, my c traveled from rt. upper lip to left neck this summer. I found out that rad was only on rt. side (could have fooled me by the burn and the blisters and. . .) Had a left neck dissection in July at Stanford and waiting for rads to left side. My doctor (Dr. Tan the Rad Man) is a hoot. He has a great personality and spelled things out frome the beginning. He was shocked that I had mets. but we will deal with it.

    Don't beat yourself up not driving for radiation, it worked locally even if you had a mollusk as a dr.

    Mine told me
    I did not like what he told me but he was honest and right. I got the maximum rads possible and no salaviory glands very little facial hair. I had a beard since i got out of the military in 90. He told me it would never be back and he was right. I like my rads doctor. He was very good and honest. Good luck in the future.
  • Hal61
    Hal61 Member Posts: 655
    #5
    Doing the dance
    Hi Deb, sorry to hear about the lack of saliva. I couldn't take the amifostene--made me sick all night--but have gotten a decent amount of saliva back anyway. The "p" pill that Pam mentioned is probably pilocarpine (Salagen). I took it for quite a while, didn't help, and new medical onc said not to take it, didn't say why, and I didn't get into it with him since it wasn't doing anything. But, it's worked for others, so you might want to bring it up.
    They do like to dance around lingering symptoms. My neck is still numb and tight from the partial dissection a year ago. My ENT says, "Still sensitive there," when he sees me flinch as he aims the tube down my nose. One end of my scalpula on the left side still pokes above the collarbone there. My ENT finally admitted that it was a side effect of the surgery recently. I don't know why he decided to come clean. I had everything done down the road from you in Fresno. I'm wishing I'd had someone else on the neck job. Oh, my medical ONC expressed great doubt a few months back when I asked him if the dissection could cause the skeletal realignment.

    Pam: Love your pic, it reminds me off something I used to eat at the fair.


    Best to all, Hal
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Chemo MD - Rads MD...
    LOL, my rads md always blamed everything on the chemo....what a farce to me.... obviously he never had the rads like I (we) have.

    Rads had the most lasting side effects and even during treatment, it was worse than the chemo ever was.

    I did lose the majority of all body hair (and toe nails) during chemo (Cisplatin, Taxotere and 5FY, then Carboplatin)...most was loss during the 1st and 2nd chemo sessions. But it started coming back before I was finished with the 3rd...I don't think I lost any due to Carboplatin. But by them I was getting daily rads with the Amifostine Injections in the tummy each day..I made it through 31 - 32 (amifostine) before it started giving my high fever or fever swings.

    The only permanant hair loss is the back inch or so on my neck, though its coming back thin and fuzzy. Also most beard under the chin, and the rest is thinner than before...which I dont mind at all.

    Unfortunately I have all my nose and ear hair back, LOL....

    Best,
    John

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