Need advice quickly. Recurrence to chest area... looking for similar

Pclark21st
Pclark21st Member Posts: 126
edited February 2019 in Head and Neck Cancer #1

Life partner went in for 9 mos post treatment scan, found mass in chest, did PET...lit up, surgical biopsy confirmed same as original...Stage Iii SCC HPV+ tonsil cancer.  He was 2/3 days away from death when found, had teach, feeding tube and went through hell, but came out with all tubes and trach removed, went back to work and felt great.  In 6 mos this tumor grew to 4 x 2 x 1. Located right behind the sternum. If not in bone, right up to it.  Just completed several 2nd opinions with MO, RO and thoracic surgeon at Dana Farber.  Due to the location, to dangerous for surgery.  MO thought 10 sessions of SBRT, but RO feels that also to dangerous as he thinks he could burn a hole in bone and possibly damage a vein/artery and he would bleed out.  So the end suggestion is that because the new mass begins exactly where the original radiation field ended, this is a downward growth of the original rather than a metastasis.  Since the original tumor reacted positively to the original treatment he suggests 6 weeks rad and 6 Cisplatin.  My question is for those who have had repeat treatment,  was it worse than the first round?  Our biggest fear is the area that will overlap the first radiation field. Since no treatment is a death sentence of less than a year,  we have no choice but to be aggressive and to transfer our care to Dana Farber.  We live by Cape Cod so we are relatively close.  Thoughts anyone on how body reacts 2nd time around to rad and chemo.  The last 10 days have been an emotional rollercoaster.  Cancer sucks.

Comments

  • Pclark21st
    Pclark21st Member Posts: 126
    #2
    49 times this was read and

    49 times this was read and not a single person had a recurrence?

  • Pclark21st
    Pclark21st Member Posts: 126
    #3
    49 times this was read and

    49 times this was read and not a single person had a recurrence?

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    I’ve had my share of recurrences.... and rads

    I’m confused as to how the tumor is being considered a recurrence, when it was first in the tonsil, and is now in the chest....that would be a met in the lungs?  Like I said, I’m confused. I’ve never had chemo AND rads again, only a repeat of radiation. The second time was way easier than the first time. No mention of immunology?  One thing, tho....you two are at Dana Farber.....and so in very good hands. 

    All I can offer is if it were me....I’d try the chemo and rads....grit my teeth, one day at a time....and do my damnedest to get through this **** again. Going to tuck your partner into my pocket....it’s held a lot of tough folks. 

    p

  • Pclark21st
    Pclark21st Member Posts: 126
    #5
    phrannie51 said:

    I’ve had my share of recurrences.... and rads

    I’m confused as to how the tumor is being considered a recurrence, when it was first in the tonsil, and is now in the chest....that would be a met in the lungs?  Like I said, I’m confused. I’ve never had chemo AND rads again, only a repeat of radiation. The second time was way easier than the first time. No mention of immunology?  One thing, tho....you two are at Dana Farber.....and so in very good hands. 

    All I can offer is if it were me....I’d try the chemo and rads....grit my teeth, one day at a time....and do my damnedest to get through this **** again. Going to tuck your partner into my pocket....it’s held a lot of tough folks. 

    p

    Hi Phrannie.  I was hoping to

    Hi Phrannie.  I was hoping to hear from you.  I know you are in DF.  We have Dr Hanna as MO and Dr Mak as RO.  Originally our present team and Dr Hanna believed it was met to chest.  But when Dr Mak lined up the new tumor to the old tumors radiation field, this tumor is exactly on that line.  Tom's orig tumor started in right tonsil and went down to top of chest.  Dr Mak believes strongly that some cells from the 1st go around was right under that rad field and was missed and continued to grow down further to its present stage

      Because the original treatment of rad and chemo worked so well up top, he feels that's the way to go again.   Their hope is this mass was formed by cells from the original but were to small to be detected rather than getting in blood and met to this space.   Dr Hanna is keeping immunotherapy for next option if this doesn't work.  

     

    Glad to hear 2nd round was easier for radiation.  Im thinking I need to find a short term rental for him up there as I need to continue to work and traveling back and forth each day won't help that cause. 

     

    Im just concerned what 2nd round of chemo will be like. 1st time wasn't to bad, but now were doubling dose.

     

    Thanks for the reply. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Ok....now I get it!

    The same kind of thing is what happened to me....recurrence number 1. A node by my collarbone was found on a regular 6 month scan....it was determined to be exactly the same cancer. That’s when I had the repeat rads.....radiation to the neck is bad....all the nerves in the area make it so painful. Having rads below the neck was way easier.....there aren’t nearly as many nerves in the chest area. It didn’t even turn red!

    p

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