Radiation treatment for Tonsil Cancer ,one side or both ?

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Hygienist97
Hygienist97 Member Posts: 13
edited January 2018 in Head and Neck Cancer #1

Hello , I'm new to this board and have found very good info reading through everyones posts it''s wonderful to read the positive outcomes. I'm a caregiver for my husband who was diaganosed with Squamos cell cancer. It presented as a swollen lymph node right side of neck level 2 nodes. Pet Scan and Ct scan were not clear as to the origin of the cancer. So ENT suspected it was in the right tonsil since it was not showing on scans or visible during scope he suggested surgery to find the primary. My husband opted to have Bilateral tonsilectomy on December 4, 2017 along with biopsys of tongue , retromolar trigone area and nasopharynx. A week later the pathology came back with a diagnoses of a 1cm tumor right tonsil margin HPV + no other cancer in other biopsies. The tumor margins were not clear , so on to the next week meetings with radiation and chemotherapy oncologists. Proposed treatment required removal of some teeth on the right side before starting.Which leads me to my question proposed treatment is for radiation to lymph nodes right side only no neck dissection at this time and tonsil area radiation to get what surgey left behind, no peg per the docs recommendation , 7 weeks cisplatin weekly and 35 rads about 7weeks total.Second opinion was about the same however the next doctor is recommending treating both sides of the neck with radiation as there is chance the lymph fluid  can cross over to the other side when nodes are  swollen, he says it's about a 5% chance it can happen. The first doctor is trying to deescalate treatment because of HPV + and trying to preserve salivary function. Other doctor states he can treat level 2 nodes without risking salivary damage on the other side but seems impossible to at least damage submandibular nodes. My question is what treatment others have had proposed and have done with a similiar diagnosis , treat both sides of neck now or just monitor on PET Scans after right side only treatment ? Thoughts and advice appreciated .

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  • ByeByeCancer
    ByeByeCancer Member Posts: 54 Member
    edited January 2018 #2
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    Hi my husband is almost 8

    Hi my husband is almost 8 weeks post treatment for HPV+ Base of Tongue SCC.  He had lymph node involvement (in 2 Level nodes) on the right side.  His radiation oncologist recommended 70gy radiation to the right side and 50gy radiation (i forget exactly what those numbers meant...but the left side was getting less radiation in an attempt to save saliva glands) to the other side just in case.  He had Erbitux (Cetuximab) as his chemo.  8 weekly infusions.  I know everyone reacts differently to the procedures, but I wanted to let you know that some of my husbands saliva glands are still functioning!  So,  for him...some of the saliva glands seemed to have been spared.   

  • soonermom
    soonermom Member Posts: 155
    edited January 2018 #3
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    Hard Call

    The treatment of HPV positive cancer is evolving.  I think to some extent we are all caught in a time when it is hard to know exactly what deescalation will be borne out over time to be equally as effective.  We were in a some what different situation as my husband had a Stage 4 BOT SCC.  Make the best decision you can and then try to not second guess yourself.  The truth is they can tell us the most common treatment repsonse outcomes but they can never tell you for sure how your husband will respond.  The treatment plan you described is what my husband had but no teeth were removed.  It is a hard road.  We opted for a PEG and that turned out to be a good decision for my husband.  For much of this journey you just have to decide, proceed and then adjust if needed.  Stay strong and know you can make it through even though the ride can get really bumpy from time to time.  

  • bebo12249
    bebo12249 Member Posts: 181 Member
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    Many recommend treating both

    Many recommend treating both sides but my very experienced surgeon recommended only the side with node involment. Can’t say that I remember all the logic but he is an active H&N cancer surgeon so i agreed. Part of the logic i think was that since we dont know if it’s needed, let save that tool in case we later find it is needed. My rad onc did not disagree, by the way. But others will recommend both sides. As soonermom said, the treatment is evolving.. bill

  • ratface
    ratface Member Posts: 1,337 Member
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    I'm Leaning towards both sides

    Hello Hygienist and welcome to the boards, I've been away for awhile but found your predicament interesting. For comparison sake I was stage 4, BOT, treatment was 39 rads, 3 regimes of cisplatin and a self imposed neck disection. This was in 2009. First things first, don't hesitate to remove any teeth as it gets to be major expensive intervention after treatment.

    My main concern is that typically there is a 5 yr. waiting period between radiating for a second time and even then they are reluctant to do so. I would get clarification on the protocol for radiation a second time if needed. That said I dont think a few passes on the opposing side is going to make any difference in the big scheme of things.  They are proposing diminished intensity at 50 greys. After 39 radiation treatments at the same 70 greys they are proposing for your husband my saliva is probably 85 percent of what it used to be and tolerable. I just don't lick envelopes anymore.

    They actually make a radiation treatment plan in a big binder with cool maps of the proposed trajectories. They will lay it on a table and explain it to you if you ask. My indiidual plan was structured so that the last week was a mop up operation in which they hit all suspect areas with a little bit of radiation, meaning he is going to get some on the other side anyway.

    This really isn't anything to stress about, the benefits outweigh the risks, I would lose a little saliva anyday to gain 5% survivability.

  • Curlyn
    Curlyn Member Posts: 189
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    Hi there, I had extensive

    Hi there, I had extensive surgery for nodes on Right side of neck, and surgery to remove the primary on base of tongue (very tiny lesion!). Technically, base of tongue is considered bilateral (but the primary was so close to the right tonsil, which they also scraped). So the radiation doc said both sides. However, knowing the deleterious and ongoing effects of radiation (the later side effects that can appear down the road), and the fact the primary was so far to the right, I spoke c my surgeon and he agreed that radiation to one side only would be what he would recommend (and the rest of the team were in agreement) and opt for if it were him. So I had radiation on one side c cisplatin regimen. We will monitor the other side. To be honest, with the things that I have had to deal with, from surgeries and chemorad I feel that I made the best decision for me. HPV is very responsive to radiation and thus highly curable but the field was broadened a bit for me as the margins weren't clear in my neck and I did not want to risk de-escalation of treatment. The process all began in summer and I am just now 8 wks from chemoradiation. Ask questions, write them down, do research. Ask yourself and them- do I have a choice if I want to be cured? (If it recurs they wont be looking to cure, at that point, but only to 'manage' the cancer). Good luck!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Both Sides

    Though a little lesser on the non-effected side.. BTW, I respopnded to your PM..

  • Hygienist97
    Hygienist97 Member Posts: 13
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    Radiation to both sides of neck or just one

    Hello, Just wanted to thank everyone for their respones! We have decided to treat both sides to be safe and hopefully cure the cancer.Should be starting January 15.

  • bill1426
    bill1426 Member Posts: 2
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    C & R

    Two days out good luck.  First time i only had surgery. This time surgery first, then C & R. They did my whole neck due to the fact it was my 2nd time.  I am 7 wks out from the end of C & R.  Waiting to get my PEG tube out.  Trying to build up my energy levels and blood cell counts. I feel like most of my saliva glands came thru ok. Keep your fluid intake up.  Before I got my tube, I went in daily for fluids. After that I put water in thru the tube.  In my opinion, that might have been something that helped.  Everybody responds differently.  Good Luck.

  • Chicklette
    Chicklette Member Posts: 225
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    Both

    my husband had unknown primary, so we had to treat both sides, however, I suspect it was in his left tonsil because the lymph nodes on the left were most affected.  Both tonsils were removed and he had BOT biopsy. The doctors spared the salivary gland on the right by aiming radiation under it.  He ended treatment in May and so far scans have been NED.  Good luck!