newly diagnosed Laryngeal Cancer

StJin
StJin Member Posts: 4
edited December 2016 in Head and Neck Cancer #1

Hello all,

I am 51 years old and the father of a very active 5 year old girl. I am also scared to death. 

I was recently diagnosed with invasive squamous cell carncinoma (early Nov2016). The biopsy was taken from the supra-glottis, right side, false cord. The disease was in all three glottic areas. The doctor, here in France, wanted to resect my epiglottis in order to reach the disease in the subglottis, and the options for keeping my cords was entirely up in the air.

I flew to Boston two weeks ago to have surgery with a world class laryngeal surgeon who cleared the lesion in my subglottic area, my left cord, and a large portion of my supra-glottic area (about 85% of the disease in total).  The subsequent plan was to have 7 weeks of radiation here in France aiming at the right cord and the entire neck area as a preventative measure. Prior to leaving for Boston,  I had two separate CT scans showing no nodal involvement. Unfortunatey, upon my return I received a translated copy of a PET scan also done earlier and it indicates an elevated SUV in the two adjacent lymph nodes - bilaterally. I emailed the report off to Boston and have subsequently heard back from the radiation oncologist I met there. The PET scan was done two weeks post biopsy here in France during which time I had acquired an infection in the larynx. The oncologist suggested it might be due to this infection, no way to know for sure, so another PET scan will need to be done.

Tomorrow I will be meeting with the radiation oncologist who will be helping me here. I fear the new information from the PET scan will change the course I had set my mind on - I felt like I had a path forward - and now everything is back in dissarray.

One more thing - I have read quite a few posts here lately - all very informational, some heartbreaking and quite a few inspiring. I just want to say thank you to everyone who has taken the time to post your experiences. They have all been helpful.

 

thanks,

james

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Weclome James....

    to our little club that nobody wants to join.  I'm so happy you found us....this forum gave me so much when I was diagnosed....hope, ideas for how to make this trip, and much laughter.  Being scared is so normal....you've just been plunged into a world you didn't know existed....new customs, new language....but it won't be long before you pick up on all the new things.

    I honestly don't think your treatment will be in as much disarray as you might think.  If those lymph nodes do light up in the PET scan, they will simply change the mappig of your radiation to zap them when you're under the mask.  Or....you may have the PET scan, and find out the SUV was caused by the infection, and everything will be right on track.

    Just stick close to this board....so many ideas I picked up on how to get through this came from here, not my Drs.  All questions are answered....nothing is out of range.

    p

  • StJin
    StJin Member Posts: 4
    #3
    Many thanks for the warm

    Many thanks for the warm welcome Phrannie  Laughing 

    Yes, I have already learned quite a bit from reading past posts. I will try to write about my experiences as well. I think the dissemination of ideas from the patients viewpoint is extremely helpful. Doctors can not know everything!

    -james

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    Welcome

    StJin,

    Welcome to the H&N forum, sorry that you are here and being “scared to death” is normally short term as you learn more and move forward.

    Everything is not in disarray, wherever you have cancer, they need to go after it.  It is most likely as P51 said, they adjust your rads.  Furthermore, the onc mentioned it might be infection.

    Right now there is a lot going on, once you begin treatment things will move right along.  With any luck you will be celebrating Valentine’s Day with a very active 5 year old and treatments may be over.

    Matt

  • swopoe
    swopoe Member Posts: 492
    #5
    Welcome, James. As the others

    Welcome, James. As the others have said, you came to the right place. When my husband was diagnosed last year, he was the dad to an active 11, 9, and 6 year old. And you know what? He still is. And you will be too. You will get through this. Fight for her and for yourself. We will be here with you every step of the way.

  • jjboychicago
    jjboychicago Member Posts: 2
    edited December 2016 #6
    Just joined

    Hey read your post; I am 47 now and have a 10, 9, 6, and 2 year old at home.  In 2013 my ENT removed a polyp off my right vocal cord which ended up growing back.  Had a 4.5 hour surgery that removed the entire lower portion of my right vocal cord; squamous cell carcinoma, T1N0 thank God.  He caught it extremely early but i have to tell you the surgery is the easy part; the radiation blows.  They targeted my entire throat and I'm telling you up and until the very last day I was still very active with the kids but by that Saturday I was out for the count.  The recovery time post radiation is grueling and you are so tired not to mention you can barley speak.  The good news is the cords do grow back albeit you won't be able to sing and it takes a good year before they are strong engough.  I'm still cancer free THANK GOD.  I would advise you that post radiaition wait about six months until the skin is healed then go and see an audiologist that specializes in vocal strengthening.  I am a Hospital COO and obviously have to do a bit of talking and it really helped; the exercises, and massage techniques worked well.  So can it be overcome; Yes.  Will you sound the same; NOPE.  The critical piece is the follow up to make sure they got it all and hopefully they got clean margins when they did your surgery; they did mine and the pathologist was doing the frozen sections during my procedure which is why it took so long.  Be well

  • StJin
    StJin Member Posts: 4
    edited December 2016 #7
    Hi everyone, 

    Hi everyone, 

    Again, many many thanks for the kind words and warm welcome and of course, your stories.

    I received quite a detailed pathology and post-op report from my doctor in Boston. Sobering to say the least. The bottom line, should this help a future, or current club member is that this is HPV16 related.

    Today I met with a radiation oncologist who not only is young (a little younger than me) but is considered rather 'gifted' in his field. He has written numerous articles on the subject of radiation oncology utilizing new methods of targeting with advanced machines...yada yada ya. His compassion for his patients is what really shines through. I'll need that.

    He looked at the elevated SUV values in the cervical lymph nodes and felt that they were "aspecific", not high enough to give us a high degree of certainty that they are involved, but not low enough to dismiss. Aspecific.

    That said, he likes his margins...he did not want to approach this with radiation only and suggests a low dose of chemo + radiation will be the way to go forward. This will all get presented and reviewed by the oncologic team on Monday.

    He said something interesting regarding the HPV16. It mainly present in the oral-pharyngeal area. When it does involve the lymph nodes the cancer tends to be "indolent". Usually easily cleared there. Being a man of science he then gave me the caveat, of course we are not sure regarding the laryngeal lymph nodes~ bah humbug.

    In between now and next Wednesday, I will have two CT scans and be fitted for my mask. Finally next Wednesday they will insert a deep vein catheter in preparation for the chemo. Then, according to him, the physicists and people smarter than him will work out all the details of dosage, duration, angles, etc.

    I was told that they used to give three chemo sessions over six weeks. Now apparently, they halve the amount of chemo and spread it more evenly over that period to mitigate effects on the liver, etc. Joy.

    Regardless...I would walk into a volcano for my little girl. Six weeks of 'torture' by the docs is no problem. I say that now...but watch me cry like a little girl at the end of February.  CryCryCry

    -james

  • Douglas11658
    Douglas11658 Member Posts: 5
    #8
    tears are good for the soul .

    tears are good for the soul . I did my share its better then keeping it in let all out my friend

  • nevaehdaum
    nevaehdaum Member Posts: 4
    #9
    Post tonsillectomy 10 wks after + PET, also PNS and LEMS

    I've posted my history in a section that list LEMS as included in paragraphs and then noticed (duh) this am that they are all from 2014 and behind.  Can anyone tell me how to move that info to this forum?  What with the throat lesions and tongue lesions and +PET on larynx I think I may get more updated replies from all you folks in this room.  ???

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #10
    nevaehdaum said:

    Post tonsillectomy 10 wks after + PET, also PNS and LEMS

    I've posted my history in a section that list LEMS as included in paragraphs and then noticed (duh) this am that they are all from 2014 and behind.  Can anyone tell me how to move that info to this forum?  What with the throat lesions and tongue lesions and +PET on larynx I think I may get more updated replies from all you folks in this room.  ???

     

    welcome

    nevaedaum,

    Welcome to the H&N forum, sorry that you are here.

    I see where you posted in the lung cancer forum (in the older thread).  The easy way I would move it and have maximum control is I would copy your 3 threads into word, edit them to say what you want and paste into a new thread in this forum.   When you go to paste into a new thread use the Paste From Word (square box with W).

    You are right to start a new thread, the older ones tend to get less traction.

    Your condition sounds different then our normal posts, but may generate some hits.

    Good luck,

    Matt

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