Decision Time

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lornal
lornal Member Posts: 428

I need to decide my next treatment step.  The surgery biopsies showed clear margins but closeand radiation should be considered.

Spoke with the radiation oncologist today. He said 50 precent overlap between radiation fields from 2007 and what I need now.  If I do radiation now, there could be lots of issues down the road like no more swallowing, wounds that won't heal,breakdown of my stoma. I've already experienced some breakdown because of prior radiation. 

We are leaning towards no radiation at this time. And then have regular CT scans the next few years. Any change from the baseline, regardless of how minor, we will do a PET scan. 

If itcomes back we should be able to catch quickly and radiate then. 

I think this is the best approach that will preserve quality of life and let me continue eating and maybe get rid of the PEG tube .

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    what to do?

    Lorna,

    Sounds like a good decision.  People are successful using surgery every day and you do have the rads to fall back on.  We all are familiar with the effects of rads on the body; to escape that validates your choice.

    Whatever your decision, you have my best wishes.

    Matt

  • donfoo
    donfoo Member Posts: 1,773 Member
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    get other input

    Has proton been considered? It seems to be able to target more precisely. The decision for no rads and no chemo is incredibly important. Please get at least one or two reviews from NCCI CCC. Good luck.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Sounds like a plan to me....

    having rads as a backup instead of jumping in with both feet right now would make me feel more comfortable.  You must be enjoying eating after such a long time....too! 

    p

  • HAWVET
    HAWVET Member Posts: 318
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    Sounds like a plan to me....

    having rads as a backup instead of jumping in with both feet right now would make me feel more comfortable.  You must be enjoying eating after such a long time....too! 

    p

    That is a tough decision.  My

    That is a tough decision.  My prayers are with you for a favorable outcome on the choice that is made.

    Years ago and on completion of radiation treatment, I too had a similar type decision to make.   It was whether I should continue on with chemo treatment.  Wishing you the very best.

  • Duggie88
    Duggie88 Member Posts: 760 Member
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    Lornal

    I like Don's thoughts a second opinion certainly won't hurt. I wish you luck and remember it is always good to have options.

          Jeff

  • Ladylacy
    Ladylacy Member Posts: 773 Member
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    Second Decision

    Before making your final decision, I agree that a second opinion should be gotten.  I know the side effects from radiation in basically the same spot.  But just remember everyone responds differently.  My husband was diagnosed with laryngeal cancer in 2010 he underwent 35 radiations of radiation and 3 of cisplatin.  Then after a PET/CT scan that showed clear, 2 months later after breathing difficulties a biopsy was done and trach inserted.  The cancer was back so he was referred to a H&N specialist who said the next step was surgery.  He had a complete laryngectomy, partial neck dissection and the back of his throat had to be reconstructed due to radiation damage -- all this age the age of 74.  He did great, no problems and was able to eat again.  I remember our surgeon saying he should be a poster "man" for this type of surgery and at his age.  Fast forward one year when he decided to have a TEP.  Couldn't be done due to a tumor at the cervical of his esophagus.  Radiation and chemo only thing offered.  The radiation would he hard because it was basically in the same spot as before (surgery was ruled out).  He decided to have the radiation and chemo after much discussions with his doctors.  We were told going in all that could happen with the second round of radiation in basically the same spot.  What worried us the most was the fact that his cartoid artery could burst and I had read of several that happened to.  They told us they would keep a close eye on that and that they had to keep the radiation away from his spine due to some damage from the first go of radiation.  He had 37 radiation treatments and 7 carboplatin.  He said the radiation wasn't too bad, although this time he did get burns on his neck due to the fact that he had a skin graft from the surgery but they gave him a cream to use and it really helped.  Yes his throat closed off again, but the specialist was able to open it without any problems.  Also he has not had any problems with his stoma in the 3 years since his surgery.  So like I previously said everyone is different in how they react to treatment.  Remember also all the changes that are coming to health insurance and getting the scans that you will need especially now and the side effects even the scans can cause.

    I wish I could say his outcome was good but it wasn't and he has declined all further treatments.

    Wishing you the best -- Sharon

  • hwt
    hwt Member Posts: 2,328 Member
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    Ladylacy said:

    Second Decision

    Before making your final decision, I agree that a second opinion should be gotten.  I know the side effects from radiation in basically the same spot.  But just remember everyone responds differently.  My husband was diagnosed with laryngeal cancer in 2010 he underwent 35 radiations of radiation and 3 of cisplatin.  Then after a PET/CT scan that showed clear, 2 months later after breathing difficulties a biopsy was done and trach inserted.  The cancer was back so he was referred to a H&N specialist who said the next step was surgery.  He had a complete laryngectomy, partial neck dissection and the back of his throat had to be reconstructed due to radiation damage -- all this age the age of 74.  He did great, no problems and was able to eat again.  I remember our surgeon saying he should be a poster "man" for this type of surgery and at his age.  Fast forward one year when he decided to have a TEP.  Couldn't be done due to a tumor at the cervical of his esophagus.  Radiation and chemo only thing offered.  The radiation would he hard because it was basically in the same spot as before (surgery was ruled out).  He decided to have the radiation and chemo after much discussions with his doctors.  We were told going in all that could happen with the second round of radiation in basically the same spot.  What worried us the most was the fact that his cartoid artery could burst and I had read of several that happened to.  They told us they would keep a close eye on that and that they had to keep the radiation away from his spine due to some damage from the first go of radiation.  He had 37 radiation treatments and 7 carboplatin.  He said the radiation wasn't too bad, although this time he did get burns on his neck due to the fact that he had a skin graft from the surgery but they gave him a cream to use and it really helped.  Yes his throat closed off again, but the specialist was able to open it without any problems.  Also he has not had any problems with his stoma in the 3 years since his surgery.  So like I previously said everyone is different in how they react to treatment.  Remember also all the changes that are coming to health insurance and getting the scans that you will need especially now and the side effects even the scans can cause.

    I wish I could say his outcome was good but it wasn't and he has declined all further treatments.

    Wishing you the best -- Sharon

    Lorna

    Based on your post, I think I would lean toward the same decision. With that being said, Barnes just opened their proton therapy machine last week. Now that we have one in town, it's certainly worth researching.

    Prayers fo the right decision

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    lornal, once my cancer came

    lornal, once my cancer came back i only had laryngectomy and neck dissection, no rad or chemo and yesterday was my 2 yr anniv of be'n cancer free.  a second opinion is always a good idea.  praying for guidance as you make your decision.  its a hard place to be.  let us know what you decide.

    God bless you, Lornal,

    dj

  • lornal
    lornal Member Posts: 428
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    hwt said:

    Lorna

    Based on your post, I think I would lean toward the same decision. With that being said, Barnes just opened their proton therapy machine last week. Now that we have one in town, it's certainly worth researching.

    Prayers fo the right decision

    Proton therapy

    What is that exactly?  Is it part Of radiation oncology?  The one thing that makes me lean towards no treatment now is the clearmargins. I will also be talking to the chemoalter although ther is no reason for it right noW. 

  • wmc
    wmc Member Posts: 1,804
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    Wish I could help...

    I wish I could help but I never had any radiation or chemo. I just had surgery and the laryngectomy, they got it all. I have never had any stoma problems and never had a lary tube. Just a open stoma and I wear a base plate and HME filter and had a TEP at the time of my surgery. I was offered Radiation if I wanted too but they [the tumor board] didn't think it was really necessary. Back at work full time in 10 weeks and talk all day on the phone or to my co-workers and walk two and a half to 4 miles a day at work. Best of luck with your dicission. 

    Bill

  • hwt
    hwt Member Posts: 2,328 Member
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    wmc said:

    Wish I could help...

    I wish I could help but I never had any radiation or chemo. I just had surgery and the laryngectomy, they got it all. I have never had any stoma problems and never had a lary tube. Just a open stoma and I wear a base plate and HME filter and had a TEP at the time of my surgery. I was offered Radiation if I wanted too but they [the tumor board] didn't think it was really necessary. Back at work full time in 10 weeks and talk all day on the phone or to my co-workers and walk two and a half to 4 miles a day at work. Best of luck with your dicission. 

    Bill

    Proton therapy

    It's a more targeted radiaiton. As I understand it, the beams hit the target then stop, resulting in much less residual damage to other areas. It is a 7 week tx like the IRMT. Since you have clear margins and no real target, it might not be an option. In 2012, I was told that I had clear margins and still did the suggested rads and chemo. Low and behold. still had microscopic cells from the original site crop up 15 months later. A person just doesn't know. Difficult choice, prayers your way.

  • jim and i
    jim and i Member Posts: 1,788 Member
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    Sounds like a sound decision.

    Sounds like a sound decision. Quality of life is very important.

    Debbie

  • Viilik70
    Viilik70 Member Posts: 73
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    lornal said:

    Proton therapy

    What is that exactly?  Is it part Of radiation oncology?  The one thing that makes me lean towards no treatment now is the clearmargins. I will also be talking to the chemoalter although ther is no reason for it right noW. 

    Proton Therapy

    I've had regular photon radiation and proton radiation the second go-round. It still has to enter the body from one or multiple angles so healthy tissue will still get damaged. They can give higher doses of radiation to the tumor because the can calculate were the energy will be released and this will be mostly in your tumor area. Make no mistake it is still radiation no matter how you look at it! I still had a ton of side effects just like the photon radiation! I can only literally choke down very soft foods, but that is better than nothing. I also had a peg that I eventually had pulled just so I could feel half way normal again. I would enjoy as normal as a life as long as you can! But that is my opinion. God bless...