first visit with radiation oncology

arjenkins
arjenkins Member Posts: 36
edited March 2014 in Head and Neck Cancer #1
Dad met with the radiation oncologist yesterday. I feel very comfortable with her and the residents that also were there. He has a large tumor on the base of the tongue and a large tumor on the left lymph node. They are not going to do IMRT though...my understanding is she doesn't want to spare any area/tissue. Anyone else had radiation that wasn't IMRT? Dad has a PET scan next Tuesday as well as a fitting for the mask and we meet with Chemotherapy. As for radiation, it seems in line with most of you...7 weeks/5 days a week. He is having a dental check-up next week as well. The following week they plan to have the complete treatment plan devised and will insert the feeding tube, then soon after begin treatment. I am glad to get going with this...Dad is just bummed that Christmas and his 68th birthday will be during treatment. I am staying amazingly positve...I have prayed for Dad to be ok and for me to have strength to get us through.

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    No IMRT?
    Hi Andrea,

    It's my understanding that IMRT is pretty much state-of-the-art treatment these days. It allows the radiation beam to be focused most strongly on the areas most needing treatment. A PET-CT scan will very clearly indicate where the active cancerous areas are located. I question why your doctor is not proposing to limit the adverse effects of radiation in healthy tissue. An MRI, or a simple PET without the CT will not be as effective in identifying the extent of the active cancer as would the PET-CT.

    I would ask a couple of questions of your doctor - (1) is your Dad receving a PET-CT or just a PET? and (2) does the facility where your Dad is being treated offer the option of IMRT? If so, I would ask for that option.

    If the answer to one or both of these questions is "no", does your Dad's insurance allow for the option of a second opinion, or treatment at an alternative facility?

    Good luck with this journey. Keep the questions coming.

    Deb
  • kingcole42005
    kingcole42005 Member Posts: 178
    #3
    Hi, Sorry about your dad.
    Hi,

    Sorry about your dad. I just started radiation two days ago and I am also bummed about going through it during Christmas, but they said putting it off wasn't an option. I had a tumor under my tongue in the floor of my mouth, which they removed. I am have IMRT radition 33 treatments, 2 down 31 to go. I hope it goes easy for him.

    Take Care,
    Shelly
  • arjenkins
    arjenkins Member Posts: 36
    #4
    D Lewis said:

    No IMRT?
    Hi Andrea,

    It's my understanding that IMRT is pretty much state-of-the-art treatment these days. It allows the radiation beam to be focused most strongly on the areas most needing treatment. A PET-CT scan will very clearly indicate where the active cancerous areas are located. I question why your doctor is not proposing to limit the adverse effects of radiation in healthy tissue. An MRI, or a simple PET without the CT will not be as effective in identifying the extent of the active cancer as would the PET-CT.

    I would ask a couple of questions of your doctor - (1) is your Dad receving a PET-CT or just a PET? and (2) does the facility where your Dad is being treated offer the option of IMRT? If so, I would ask for that option.

    If the answer to one or both of these questions is "no", does your Dad's insurance allow for the option of a second opinion, or treatment at an alternative facility?

    Good luck with this journey. Keep the questions coming.

    Deb

    PET and CT
    Dad is having a PET-CT next week. They do offer IMRT but they said they want to radiate the entire area...maybe there is some info I am missing...but your response gives me additional questions to ask or get clarification on.

    Thanks so much

    Andrea
  • arjenkins
    arjenkins Member Posts: 36
    #5
    kingcole42005 said:

    Hi, Sorry about your dad.
    Hi,

    Sorry about your dad. I just started radiation two days ago and I am also bummed about going through it during Christmas, but they said putting it off wasn't an option. I had a tumor under my tongue in the floor of my mouth, which they removed. I am have IMRT radition 33 treatments, 2 down 31 to go. I hope it goes easy for him.

    Take Care,
    Shelly

    Thanks Shelly
    We'll be just a few weeks behind you in treatment. The tumor is not operable and radiation and chemo is what they said is the best treatment.

    I hope it continues to go well for you. I know Dad is a little nervous about the mask like you were, but they did say they would give him Attivan.
  • Pam M
    Pam M Member Posts: 2,196
    #6
    Trading Good Times
    Last year, my doc said "Thanksgiving is going to suck. As is Christmas. And New Year's. We plan on trading them for future holidays." Sorry your dad has to spend Christmas and his birthday in treatment, but glad he's got the chance to get paid back with future birthdays.
  • charles55
    charles55 Member Posts: 87
    #7
    arjenkins said:

    Thanks Shelly
    We'll be just a few weeks behind you in treatment. The tumor is not operable and radiation and chemo is what they said is the best treatment.

    I hope it continues to go well for you. I know Dad is a little nervous about the mask like you were, but they did say they would give him Attivan.

    not operable
    When you say it is not operable, that implies to me there are many lymph node involved with the cancer. Surgery would be harsh. That was my situation. With so many spots the fine beam of the IMRT was not the best choice. I needed the more general area radiation treatment to catch it all. That also means there might be more long term after effects from radiating a larger area (and there was). But I am now three plus years post treatment and am judged to be free of disease at this time. That doesn't mean you shouldn't question the physician's judgement. Make them explain to you their thinking processes.
  • ekdennie
    ekdennie Member Posts: 238 Member
    #8
    treatment during the holidays is rough
    I finished my treatment 1 1/2 weeks before thanksgiving. I had all these parties for my older two kids at their schools that involved all this great thanksgiving food, including a special lunch. I wasn't able to eat any of it. My oldest, who is almost 5, kept wanting mommy to try foods, but my mouth and tongue were so sore I could barely talk, let alone eat. Then when thanksgiving came, I was able to force down a bite of different foods, but they didn't taste the same. I was also in treatment during Halloween. we normally make a bunch of cookies and decorate them and then the kids and I would talk about our day while enjoying a bite or two of their candy. It was hard to have to pass on all of the traditions that I have been working so hard for. However, my radiation oncologist told me that although those two holidays would stink, I might be well enough to have a good meal at Christmas, and if not then, that I would by Easter. I have decided to just look at the positives...I am done...now I am healing from the treatments. If that means not enjoying some meals for awhile...then it is worth it to be here to watch my kids grow older and to hopefully be here to see them have their own babies...but they better wait until they are much, much, much older before I become a grandma (15-20 years would be nice, hehehe). they are only almost 5, 3, and 9 months now! :)
    oh, and an idea: celebrate your dad's birthday early with a special dinner now, while he can still enjoy it. If you do anything special for Christmas...do it now...not that he won't be around, but so that he can fully enjoy your efforts. he won't be able to eat much and it is very emotionally hard, I think more so for those who have the PEG tube (I didn't need one, so I don't know for sure). I kind of wished I had made an early thanksgiving dinner while I could still eat, so that I could have enjoyed the flavors ahead of time.
    best of luck to you both! you are in my prayers!
    elizabeth
  • JUDYV5
    JUDYV5 Member Posts: 392
    #9
    charles55 said:

    not operable
    When you say it is not operable, that implies to me there are many lymph node involved with the cancer. Surgery would be harsh. That was my situation. With so many spots the fine beam of the IMRT was not the best choice. I needed the more general area radiation treatment to catch it all. That also means there might be more long term after effects from radiating a larger area (and there was). But I am now three plus years post treatment and am judged to be free of disease at this time. That doesn't mean you shouldn't question the physician's judgement. Make them explain to you their thinking processes.

    not operable
    Two reasons why it might be not operable are size and location. Mine tumor was not operable because of location. The radiation and chemo did work and the tumor is no longer there.
  • arjenkins
    arjenkins Member Posts: 36
    #10
    charles55 said:

    not operable
    When you say it is not operable, that implies to me there are many lymph node involved with the cancer. Surgery would be harsh. That was my situation. With so many spots the fine beam of the IMRT was not the best choice. I needed the more general area radiation treatment to catch it all. That also means there might be more long term after effects from radiating a larger area (and there was). But I am now three plus years post treatment and am judged to be free of disease at this time. That doesn't mean you shouldn't question the physician's judgement. Make them explain to you their thinking processes.

    No IMRT
    It is not operable due to the size and location of the tumor on the base of the tongue. The lymph nodes are involved but seems to be more on the left side. The rad oncologist doesn't want to miss anything so that is my understAnding as to why no IMRT. They are also going to test for hpv as it seems that the community hospital where the original biopsy was done did not test.

    Thanks for all of the responses

    Andrea
  • JUDYV5
    JUDYV5 Member Posts: 392
    #11
    arjenkins said:

    No IMRT
    It is not operable due to the size and location of the tumor on the base of the tongue. The lymph nodes are involved but seems to be more on the left side. The rad oncologist doesn't want to miss anything so that is my understAnding as to why no IMRT. They are also going to test for hpv as it seems that the community hospital where the original biopsy was done did not test.

    Thanks for all of the responses

    Andrea

    HPV
    They never tested my biopsy for HPV either. When I asked why - they told me that it would not alter the treatment. My tumor was on the hypopharnyx.
  • greg from pa
    greg from pa Member Posts: 86
    #12
    Hi ,My name is Gre. I was
    Hi ,My name is Gre. I was diagnosed with stage IV head and neck c W/mets to more than 3 lymph nodes left side. The pet scan indicated the primary site was base of tounge. My chemo and radiation started in July and was finihed by the 3rd week of August. It was tough at times and I lost 45lbs. from not being able to swallow many foods,I made it thru. My doctor informed me today that I had a clear PET scan and I am very relieved. I had 35 rad sessions and 6 chemo sessions,but is was worth it. I hope this helps. Grerg
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    greg from pa said:

    Hi ,My name is Gre. I was
    Hi ,My name is Gre. I was diagnosed with stage IV head and neck c W/mets to more than 3 lymph nodes left side. The pet scan indicated the primary site was base of tounge. My chemo and radiation started in July and was finihed by the 3rd week of August. It was tough at times and I lost 45lbs. from not being able to swallow many foods,I made it thru. My doctor informed me today that I had a clear PET scan and I am very relieved. I had 35 rad sessions and 6 chemo sessions,but is was worth it. I hope this helps. Grerg

    Gre...ummm Grerg....
    LOL, from the spelling of your name, you must be celebrating that clear PET scan.....

    LOL, just teasing....and CONGRATS....

    I have to check my spelling a lot...my laptop keyboard cap for the letter D came off. So I only have a small stem to hit for it...and the pressure needs to be harder. So I end up with a lot of missing D's when I type...LOL.

    Best,
    John
  • CajunEagle
    CajunEagle Member Posts: 408
    #14
    Skiffin16 said:

    Gre...ummm Grerg....
    LOL, from the spelling of your name, you must be celebrating that clear PET scan.....

    LOL, just teasing....and CONGRATS....

    I have to check my spelling a lot...my laptop keyboard cap for the letter D came off. So I only have a small stem to hit for it...and the pressure needs to be harder. So I end up with a lot of missing D's when I type...LOL.

    Best,
    John

    Missing D's
    I follow a college football team that had that problem this season. That part of the team just never showed up.

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