Radiate or not?

swopoe
swopoe Member Posts: 492
edited November 2015 in Head and Neck Cancer #1

We just talked to my husband's doctor about his pathology report. The tumor in the tongue was 1.2 cm at its greatest size and was removed with clean margins. All of the lymph nodes removed from the right side of the neck were not cancerous, which the doc said was huge. The only negative was that the tumor showed some peri neural invasion.

This leaves us in the gray area of deciding between whether to radiate or not. He said that if not for the peri neural invasion, the doctor would recommend a close monitoring approach. But this case Could go either way And he can see the positives and negatives to either choice. If we choose to radiate, it will be a 6 week course. If we don't, it will be a hyper vigilant monitoring with scans and oral exams every 2-3 months by our doc.

Our Doctor is going to have us try to meet with a head and neck radiation guy from MD Anderson (who our doctor said Is the best) on Thursday to review the case and go over the options and then we have a follow up visit with our doctor on Thursday too.

My question is if he gets radiated now and the cancer comes back, can he get radiated again? What if he really needs radiation in the future? We just don't know what to think.

What would you do? 

Comments

  • JM0377
    JM0377 Member Posts: 18
    #2
    Same Dilemma

    Swopoe,

    When I was diagnosed in January, I had the same dilemma of whether to radiate or not since I had positive margins and perinueral invasion. My surgeons wanted a "wait and see" approach because they were concerned the quality of life risks outweighed the benefits. The radiation oncologists felt that radiation was the right approach. I went back and forth about this between January and September. Personally, it was so stressful for me to feel like I had these cancer cells roaming around along my nerves and they were going to pop up somewhere else in my body. There may be a time that I may look back and think maybe radiation wasn't the right choice. However, I feel so much more at peace knowing I did all that I possibly could to fight my cancer.

    I wish you the best of luck as you find the best decision.

    Jennifer

  • swopoe
    swopoe Member Posts: 492
    #3
    JM0377 said:

    Same Dilemma

    Swopoe,

    When I was diagnosed in January, I had the same dilemma of whether to radiate or not since I had positive margins and perinueral invasion. My surgeons wanted a "wait and see" approach because they were concerned the quality of life risks outweighed the benefits. The radiation oncologists felt that radiation was the right approach. I went back and forth about this between January and September. Personally, it was so stressful for me to feel like I had these cancer cells roaming around along my nerves and they were going to pop up somewhere else in my body. There may be a time that I may look back and think maybe radiation wasn't the right choice. However, I feel so much more at peace knowing I did all that I possibly could to fight my cancer.

    I wish you the best of luck as you find the best decision.

    Jennifer

    Jennifer,
     
    I hear you loud

    Jennifer,

     

    I hear you loud and clear. So do positive margins in your case mean they got all the cancer out or not? I am still learning the terminology. And does peri neural invasion mean there are cancer cells still present? My husband's doctor said that if even 1 lymph node was involved, it would be a no brainer for radiation. And that while we are faced with a hard choice, the doctor said it is s good choice to have. 

    Thanks for your feedback. I am glad to know you are at peace with your choice.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    which way

     

    swopoe,

    If he gets radiated now the cancer most likely will not come back so the question of radiation again is moot.  If he got radiated and  the cancer did come back, then radiation would be on an individual basis (maybe yes).

    If he chooses to take a wait-and-see attitude, maybe he will never need radiation or maybe he will need radiation that’s what the close monitoring is for.

    If he chooses the wait-and-see that I can guarantee food will taste better for the time being and he won’t  have a dry mouth either.

    I chose surgery, radiation and Erbitux and the results have been good and the side effects are my new normal.

    Matt

     

  • wmc
    wmc Member Posts: 1,804
    #5
    Hard choice to make.

    I would ask the doctor what would he do. [Not the Rad Doctor they always want radiation] Mine was in my larynx and I never had to have radiation. My doctor said if I want he will set it up but he did not think I did. 

     In pathology, perineural invasion, abbreviated PNI, refers to cancer spreading to the space surrounding a nerve. It is common in head and neck cancer. I am not fond of having radiation because of all the side effects. With having PNI I just might concider it. If it did spread it could travel far. Then again, it might not go anywhere and they will keep a close eye on it. Because I didn't have radiation I had to be seen every two months to be checked for the first year. Now it is every six monthe for the next year. Which ever he decides, do not go back and second guess it. You have to know he made the best dission he could at the time. There is no crystal ball. I will keep you both in my thoughts and prayers. My best advice is to read what Matt wrote several times. He said it best.

    Bill

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #6
    Near any bone?

    I can't tell from your dscription if the tumor was near any bone.  I had some jawbone involvement and the need to use rads has led to some long and serious side effects.  You might ask how close the rads will be to any bone tissue, and if so, how much might the bone get exposed to the radiation.  Other than that, I agree that you should get more than one opinion.

    Mike

     

  • swopoe
    swopoe Member Posts: 492
    #7
    Thank you

    for all your feedback. I am making a list of questions and this is all very helpful. So does PNI mean there are still cancer cells left? That is the big thing that I am trying to understand right now. I don't believe there is any bone involvement, as the doctor never mentioned any of that at all. But I will be sure to get clarification.

    Such a hard decision to make.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #8
    Radiate

    It sounds like you've been given some good, but confusing news. If you are near MD Anderson, definitely get a second opinion. As KentCass suggested, check with a medical oncologist about non-radiation options. There have been recent advances in immunotherapy and you could possibly benefit from one of those treatments. I had radiation because of lymph node involvement, but also received Erbitux,  a monoclonal antibody. Thirteen months later, it appears to have been successful. The side effects from Erbitux were very manageable, too. Whatever you decide, please know the people on this site will be there for you. 

  • JM0377
    JM0377 Member Posts: 18
    #9
    swopoe said:

    Jennifer,
     
    I hear you loud

    Jennifer,

     

    I hear you loud and clear. So do positive margins in your case mean they got all the cancer out or not? I am still learning the terminology. And does peri neural invasion mean there are cancer cells still present? My husband's doctor said that if even 1 lymph node was involved, it would be a no brainer for radiation. And that while we are faced with a hard choice, the doctor said it is s good choice to have. 

    Thanks for your feedback. I am glad to know you are at peace with your choice.

    PNI

    Swopoe,

     

    My particular cancer, adenoid cystic carcinoma, spreads via the nerves as opposed to the lymph nodes. Positive margins meant that I had present cancer cells to along the edges of the tumor/sample submitted to pathology. When removing cancerous tumors, they typically cut further out to acheive negative margins. I did not know I had cancer until AFTER we did surgery. Otherwise, they may have cut more tissue until we got negative margins. My understanding of PNI is that there is cancer cells found in the nerve pathways. It was really hard for me to wrap my head around the pathology part. I am a visual person, so I would have felt better if they had drawn me a diagram of what was removed and what is impacted with PNI.

     

    Jennifer

  • hwt
    hwt Member Posts: 2,328 Member
    #10
    MrsBD said:

    Radiate

    It sounds like you've been given some good, but confusing news. If you are near MD Anderson, definitely get a second opinion. As KentCass suggested, check with a medical oncologist about non-radiation options. There have been recent advances in immunotherapy and you could possibly benefit from one of those treatments. I had radiation because of lymph node involvement, but also received Erbitux,  a monoclonal antibody. Thirteen months later, it appears to have been successful. The side effects from Erbitux were very manageable, too. Whatever you decide, please know the people on this site will be there for you. 

    Opinion

    good to get MDA opinion. Personally, I would go to great lengths to avoid radiation if at all possible. You were very fortunate not to have lymph nodes involved. Count your blessings.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Swopoe

     

    To get radiation twice will depend on his body and how well he did the first time, that is how it was with me. Also don’t be afraid to talk with your doctors at MD Anderson, I had a great team there except for the ENT. But my main doctor was a really good doctor who would take the time to sit down and explain anything I needed to know. His name is Doctor Ehab Hanna he was chief of surgery back then.

     

    Tim

  • swopoe
    swopoe Member Posts: 492
    #12
    Hondo said:

    Hi Swopoe

     

    To get radiation twice will depend on his body and how well he did the first time, that is how it was with me. Also don’t be afraid to talk with your doctors at MD Anderson, I had a great team there except for the ENT. But my main doctor was a really good doctor who would take the time to sit down and explain anything I needed to know. His name is Doctor Ehab Hanna he was chief of surgery back then.

     

    Tim

    Thank you all

    very much looking forward to tomorrow. 

    What I want to know first and foremost is if NPI means cancer is still present or not. I can't seem to get a straight answer. Anyway, I plan to be my husband's advocate and ask lots of questions tomorrow. I am great at questions. Please wish us luck. I love my husband so much and I want him to be around with us for a very long time.

  • Barbaraek
    Barbaraek Member Posts: 626
    #13
    Wow what a tough decision

    I missed a few days on the board and I sure missed a lot. It soulnds like there are compelling reasons for both radiation and the careful monitoring options. On the one hand you have the uncertainty (real or perceived) that some cancer could be lurking somewhere in the nerves vs. the side effects (short and long term) of radiation.

    Take notes, listen to all the opinions, and spend time talking to one another to see what fits you best. Prayers that an answer becomes clear for you.

     

    Barbara

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
    CivilMatt said:

    which way

     

    swopoe,

    If he gets radiated now the cancer most likely will not come back so the question of radiation again is moot.  If he got radiated and  the cancer did come back, then radiation would be on an individual basis (maybe yes).

    If he chooses to take a wait-and-see attitude, maybe he will never need radiation or maybe he will need radiation that’s what the close monitoring is for.

    If he chooses the wait-and-see that I can guarantee food will taste better for the time being and he won’t  have a dry mouth either.

    I chose surgery, radiation and Erbitux and the results have been good and the side effects are my new normal.

    Matt

     

     

     

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