Recurrence and treatment options

tonyanddenise
tonyanddenise Member Posts: 70
in Head and Neck Cancer #1
Tony's cancer is back after 8 months post treatment. Original diagnosis was Stage 4 tonsil cancer that had spread to 11 nodes on the left side of his neck. He had radical neck dissection, chemo, and radiation treatments. And it's back already again in the nodes on the left side of his neck... has anybody been through something similar? I believe radiation is not an option again. Is chemo? Is another surgery? Any thoughts would be appreciated!

Comments

  • luv2cut1
    luv2cut1 Member Posts: 288
    #2
    Hi Denise,

    So sorry to hear about Tony's recurrence. Our situation is not quite the same as yours, but Pat had a recurrence in the neck 7 mos post treatment. He had only had chemo/radiation the first time - no surgery. Recurrence was treated with radical neck dissection and chemo reirradiation. After 20 months post second treatment, he is doing well.

    Get a lot of opinions. In our case, some were reluctant to try surgery after the previous radiation and some refused to do reirradiation. Others scared us to death with the potential side effects of reirradiation. Luckily, we found good doctors that we were comfortable with that were willing to go the distance with us. I don't know where you are being treated now, but please make sure you are treated by specialists in this area. The experience Pat's doctors had with reirradiation we believe made all of the difference.

    Good luck and lots of hugs and prayers,

    Myka
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
    luv2cut1 said:

    Hi Denise,

    So sorry to hear about Tony's recurrence. Our situation is not quite the same as yours, but Pat had a recurrence in the neck 7 mos post treatment. He had only had chemo/radiation the first time - no surgery. Recurrence was treated with radical neck dissection and chemo reirradiation. After 20 months post second treatment, he is doing well.

    Get a lot of opinions. In our case, some were reluctant to try surgery after the previous radiation and some refused to do reirradiation. Others scared us to death with the potential side effects of reirradiation. Luckily, we found good doctors that we were comfortable with that were willing to go the distance with us. I don't know where you are being treated now, but please make sure you are treated by specialists in this area. The experience Pat's doctors had with reirradiation we believe made all of the difference.

    Good luck and lots of hugs and prayers,

    Myka

    Yes
    It would seem that a recurrence is definitely cause for the next treatment to be handled at a leading H&N C center.

    Also my understanding that getting reradiation is very problematic, due to further nerve damage, along with potential permanent tissue damage. Most of us live with acceptable nerve damage already. I was under the impression from others that surgery is typical of recurrence, though the specifics of this C likely will determine that. Seems the body could deal with another round of chemo, though, but his only being less than a year out might be a factor in this, due to kidney and liver concerns.

    Of note was a lady over a year ago whose husband had a recurrence in the LA area. Cedar Mnt. Sinai out there was giving him few options, but they found a rad Dr. willing to rad the new C, which was close to the jugular, with smaller rad levels twice/day. Unfortunately, I seem to remember they were too late to get even that started, and all was lost. Still, such an approach of smaller rad levels, highly targeted, and twice/day, might be something for you to inquire about.

    You know we are all greatly saddened by this news of Tony, just as we are grateful for your sharing it with us. Recurrence is what we all fear, but a topic we must each keep a keen eye on. Hondo is one with great experience in these regards of the physical and mental, and you may benefit from PM communication with him. Hope you'll keep us updated on how things go, Denise. 26-months since my last rad, it will be Tony's story in the future which may interest me more than any other's, here.

    God be with you, as you are in my Prayers. And,

    Believe

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Kent Cass said:

    Yes
    It would seem that a recurrence is definitely cause for the next treatment to be handled at a leading H&N C center.

    Also my understanding that getting reradiation is very problematic, due to further nerve damage, along with potential permanent tissue damage. Most of us live with acceptable nerve damage already. I was under the impression from others that surgery is typical of recurrence, though the specifics of this C likely will determine that. Seems the body could deal with another round of chemo, though, but his only being less than a year out might be a factor in this, due to kidney and liver concerns.

    Of note was a lady over a year ago whose husband had a recurrence in the LA area. Cedar Mnt. Sinai out there was giving him few options, but they found a rad Dr. willing to rad the new C, which was close to the jugular, with smaller rad levels twice/day. Unfortunately, I seem to remember they were too late to get even that started, and all was lost. Still, such an approach of smaller rad levels, highly targeted, and twice/day, might be something for you to inquire about.

    You know we are all greatly saddened by this news of Tony, just as we are grateful for your sharing it with us. Recurrence is what we all fear, but a topic we must each keep a keen eye on. Hondo is one with great experience in these regards of the physical and mental, and you may benefit from PM communication with him. Hope you'll keep us updated on how things go, Denise. 26-months since my last rad, it will be Tony's story in the future which may interest me more than any other's, here.

    God be with you, as you are in my Prayers. And,

    Believe

    kcass

    Hi tony

    I too am saddened by the new; I was radiated twice to the face for NPC cancer. IT is not easy but yes it can be done depending on the damage he got from the first treatment. Whatever you do don’t try treating him at a small town hospital for this; go to one of the major cancer institution.

    Wishing you the best and keeping you both in prayer
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    So sorry for that news....it almost leads me to question if they got everything on the first dissection. Doesn't really matter as it is what it is for now.

    Hoping you find a facility that gives you the cure...

    Thoughts and Prayers,
    John
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #6
    I am sorry to hear of your re occurrance. We must be just about at the same post treatment. I am 7 1/2 mos. out and have two big scans and exams next week. Take the time to get as many opinions and options as you feel comfortable with, and then decide on how to treat.

    I too fear a re occurrance, but have read so many stories of others that have a re occurrance and they are doing quite well.

    Hang in there, I am thinking of you.

    Positive thoughts headed your way.

    Best!!

    Mike
  • buzz99
    buzz99 Member Posts: 404
    #7
    So sorry to hear of Tony's recurrence so soon. Buzz was reirradiated 9 years after the first radiation so I know it can be done. IMRT radiation is the method of choice even for first irradiation. The not knowing what course to take can be awful. My best to you and Tony.

Discussion Boards