Tumor #1 killed, Recurrence tumor killed, can we be done now


12/15/17 learned bf had Stage 3/4 hpv+ tonsil cancer.  Tumor went from right ear to top of chest.  Had emergency trach and feeding tube.  Ended treatment of 40 rads and 3 heavy Cisplatin in March, 2018.  July scan clean.  They were able to remove trach and feeding tube.  Wanted 2nd scan at 3 mos, but they sd 6.  January 2019 scan showed new  tumor at the mediastinum.  They thought was met initially and gave us ominous future.  Went to Dana Farber for 2nd opinion and they determined that this was NOT met and instead a local continued recurrence of original tumor that grew down (uncommon but not unheard of).  Apparently a couple of cancer cells hid below the rad field and decided to have a party and multiplied.  Before we could begin treatment they found pleural effusion, drained 2200 mls and placed a drain tube.  We had to drain each morning before radiation.  Went through 30 rads (some overlapping original area) and 6 weekly cisplatins.  Poor guy has gone through hell and back, but 6 week PET/CT scan showed tumor gone.  Did have a couple of hotspots on top of each lung, but both Rad Oncol and Med oncol and PET report indicate inflammation.  Med Oncol also ENT so he gets scoped almost everytime he sees him.  He also has written papers on recurrence of H&N.  We're very lucky to have found him.  All good.  He was showing weak voice and increased coughing.  Some swelling of the epiglottis but vicsl cords all good so they gave him steroid pack to help.  They will scan every 6 weeks for a little while to monitor closely. This outcome could be way worse if he didnt put in the work.  He will forever have to do neck and jaw exercises.  He will forever have to do swallow exercises.  He will forever have to treat his teeth with flouride.  He will forever have to chose foods that are easier to swallow and he will forever take a long time to eat.  But, a small sacrifice to be able to go back to work...to be able to still pay softball...to be able to go fishing...to be able to live.  We are hoping that we do not have to go through anymore treatments.  I say we because he may have the cancer inside him and he may have to do all the work, but caregivers suffer right along, but in a different way.  I write this because when you are initially given the news you think OMG...but do the work and live in the moment. Dont worry until they say to worry.  Participate in how great your life can be.  Hugs to all.


  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    You have it right!!


    It is evident (to me) that you have read and studied the H&N cancer play book.  It is a difficult read, but sometimes handy to have gleaned some important knowledge.

    I am in your corner cheering you on to having gotten-every-bit-of-it.

    There are some burdens many of us MUST endure, moving forward.  Always have your water bottle or something to drink handy.  I have gotten very good at asking others for something to drink, where ever I might be. Most people are very accommodating.

    At 7+ years post, I still taste improvements to what I eat.  Foods ae very different now (TASTE), but it is not all bad. I can and do enjoy a good hamburger and I love ice cream. There you go a “Perfect Marriage”.

    Always remember,  H&N patients are a care giver’s biggest fan.  I know I love mine dearly.

    Now, it is time to go outside and finish up my project.

    Forecast for today in the Willamette Valley, cloudy and 73 degrees, not bad.