ENT visit did not go well

Pumakitty
Pumakitty Member Posts: 652
edited March 2014 in Head and Neck Cancer #1
Hey everyone!

My dad's visit with the ENT did not go well. Like before he talked only to the nurse and nothing to my dad. He looked in his mouth and felt the area around his neck. Then told him that he wanted him to go for a PET scan in 4 weeks. I questioned him about the chance of false positives showing up and it was not hard to tell that he was angry at me for questioning him. He told me he needed to do that to see if he needed to do the neck surgery. But did not address the false positive other then to say that the PET or not accurate any way.

I had to ask if the treatment did anything to remove or kill any of the cancer. He did say that the main ulcer/cancer on his tongue is gone, however his tongue is still swollen in that area and that is giving him concern. I thought his tongue would be swollen from the rads (he is only 2 weeks out of treatment)at this point. Then I had to ask about his lymph nodes and he told me he felt a little something in one of them. He would most likely need to schedule his surgery anyway as long as it was not still in the tongue.

I was so upset when we left. What do you guys think of what he told us? Do you think it is to early to know anything yet and could his tongue still be swollen from the rads.

Also, when I asked how serious was the operation, his response was "well, it is not open heart surgery". Is it me or was this guy beinging a total a....? He did not any know who he referred him to or when he started his treatment. I mean the least he could do was look in the file.

Sorry to be so long

Kathy

Comments

  • thegirlfriend
    thegirlfriend Member Posts: 142
    #2
    very uncomfortable
    Im not a cancer patient, but Im not comfortable with his treatment of your questions, or the answers he provided based on what you write. Nothing wrong with a second opinion is there?

    kathy
  • SASH
    SASH Member Posts: 421 Member
    #3
    Surgery
    From the time I finished Rads and Chemo to the time the surgeon talked about surgery was about 2 weeks after the last chemo and about 10 weeks after the last radiation. The only way of knowing what was going on was to do some deep tissue biopsies and at that point he thought he was going to be removing between 85% and 90% of my tongue replacing it with muscle from another part of my body.

    In surgery from the 6 biopsies they did all they found was dead cancer cells. They also took some lymph nodes and found nothing in them.

    Any surgery is serious but you have to trust your doctors. If you aren't comfortable with the way the surgeon is talking or acting towards you, get another opinion. Make sure the surgeon specializes in oral cancer surgery as you don't want a general surgeon or even just an ENT that does some surgery doing the work. If they have to do a flap, take muscle and replace part of the tongue, they need to do micro vascular work to get the blood vessels connected, and you want someone that knows that they are doing in that area also. This might be another surgeon all together.
  • Kimba1505
    Kimba1505 Member Posts: 557
    #4
    thegirlfriend said:

    very uncomfortable
    Im not a cancer patient, but Im not comfortable with his treatment of your questions, or the answers he provided based on what you write. Nothing wrong with a second opinion is there?

    kathy

    On board with the girlfriend.
    I don't like how that doctor talks to you either. It seems like a perfect time for a second opinion. Are there any National Cancer Institutes (NCI) hospitals near you?
    Kim
  • Hal61
    Hal61 Member Posts: 655
    #5
    He's an A.
    Hi Kathy, I hadn't read this when I answered you on my post treatmemt surgery thread--it wasn't here. Now I know your day is post radiation and chemo, and so we are in a similar boat. First, yes, the doc is an A. It's part of his job to answer questions graciously.

    His advice falls roughly in line with what I've heard from my medical oncologist. He and the ENT wanted to do surgery even before the other treatment. Two weeks is too early to say much, and another scan about 6 weeks out is what I had. My primary was gone and showed no activity then, only a minimal amout in the originally affected lymph gland, attibuted likely to treatment risidual stress. So, I waited for the three month scan, on the advice of my rad oncologist--it was a tossup and I told her i was tired of making life and death decisions, how about her making one for me. But, originally, the plan was surgery first. After surgery, my medical onc wanted to schedule surgery regardless of scans, as a matter of routine, and it sounds like that's what you're hearing. Ask the rad oncologist what they think, and see what the 6 week scan says.

    Changing oncologists is tough, but putting up with a prima donna is tougher.

    best, Hal
  • miccmill
    miccmill Member Posts: 248
    #6
    Hal61 said:

    He's an A.
    Hi Kathy, I hadn't read this when I answered you on my post treatmemt surgery thread--it wasn't here. Now I know your day is post radiation and chemo, and so we are in a similar boat. First, yes, the doc is an A. It's part of his job to answer questions graciously.

    His advice falls roughly in line with what I've heard from my medical oncologist. He and the ENT wanted to do surgery even before the other treatment. Two weeks is too early to say much, and another scan about 6 weeks out is what I had. My primary was gone and showed no activity then, only a minimal amout in the originally affected lymph gland, attibuted likely to treatment risidual stress. So, I waited for the three month scan, on the advice of my rad oncologist--it was a tossup and I told her i was tired of making life and death decisions, how about her making one for me. But, originally, the plan was surgery first. After surgery, my medical onc wanted to schedule surgery regardless of scans, as a matter of routine, and it sounds like that's what you're hearing. Ask the rad oncologist what they think, and see what the 6 week scan says.

    Changing oncologists is tough, but putting up with a prima donna is tougher.

    best, Hal

    Kathy
    Your Father (and all those present on his behalf) have the right to have all your questions answered to your satisfaction with patience and respect. If you get anything less or feel anything less, it's perfectly reasonable to seek out a different team.

    Your ENT should be part of a team which includes your dad's radiation oncologist and medical oncologist (if he got Chemo). They should all be able to come together in one room and sit down to propose a treatment plan and answer questions about anything else you want to know. Anything less than this is them not doing their job and believe me, they are being paid well to do this job.

    It's not unusual to have the surgery after radiation and chemo so that part is probably on target but you're not being respected here and that has to end.

    Best of luck to you and your father. I know there are practitioners out there who want to help you and make you feel cared for. You'll find them.
  • lawchk
    lawchk Member Posts: 12
    #7
    Also on board with thegirlfriend
    Don't feel bad for asking questions or second-guessing the doctor, especially when he has not been helpful and has not given you forthright answers. A good doctor will talk to you, answer your questions and help relieve the anxiety you are facing. They should look at you as a person and not just see you as another patient with another diagnosis. People are different and are affected by cancer very differently.

    A tumor of my size had always been removed through a craniotomy followed by radiation & possibly chemo. It had never been removed purely endoscopically. I sat down with different surgeons & the oncologist at Baylor in Dallas, TX. Every one of them walked me through my diagnosis, scans, procedure and post treatment. I can't tell you how much better it made me feel. It really helped me cope with everything that I was going through.

    I agree with thegirlfriend & think that you a second opinion might help ease your worries, whether you find a better doctor or find confirmation that your doc is on the right path.

    Best of luck!

    Lindsey
    www.ENBfacts.com
  • zmoosdeen
    zmoosdeen Member Posts: 4
    #8
    Trust and confidence are key
    Fortunately, my wife's team was completely the opposite of your experience -- I sympathize.

    It is very important that you approach your treatment with confidence and determination. It is YOUR body, YOUR disease, and it is YOU who have to go through what will likely be a very debilitating course of treatment. You need to be an active participant in that process with a feeling of being informed and in control. That will be very difficult with the 'bedside manner' you're experiencing.

    One reason to switch Drs is that he sounds like the type who just focuses on treating the primary disease. In fact, how the side effects are managed will greatly influence how your put up with them. As you may have seen many others state, the side effects can be miserable -- but only for a time, then they dissipate and the cancer will be gone, too.

    See if you can find a cancer support group (in addition to the great people here). They'll tell you the stuff you need to know that your Dr. doesn't think is important, and give you hugs to boot ! And go find a Dr. who cares about all of you, body AND mind -- not just the cancer cells. (Oh.. and one with a good nurse, too)

    Good luck, Kathy. Eat lots, drink lots, stay positive regardless, focus on the positive outcome you will certainly have. Keep us posted, eh?
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    Kathy, I am so sorry for the
    Kathy, I am so sorry for the less than professional way that d... doctor treated you. If it were me personally, I WOULD FIND ANOTHER doctor. Most doctors want you to ask questions and if questions bother him, then he does NOT deserve your patronage. Thank goodness that all docs aren't like that.
    Kathy, I think it is definitely time for a 2nd opinion. I will keep you both in my prayers and I'll be praying for God to bless you with a good doc as well. Hang in there and please let us know what you decide and how things are with your dad.
    God bless you friend,
    debbie

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