Your input is greatly appreciated

Neil51
Neil51 Member Posts: 4
edited February 2016 in Head and Neck Cancer #1

Recent diagnosis and surgery---your input and help appreciated.

It is now 2/22/16 and 14 days post robotic surgery. After approx eight months of mentioning a hard lump in my upper neck, I was finally advised by my Dr to have a CScan.I had no pain and was in good health for a  man of 63yrs old. I was diagnosed with Squamous cell carcinoma of orophayrnx. More specific' I had a 2-3 cm tumor on the base of my tongue . One tonsil on edge of my epiglotis. I also had a 3/4 tumor on a lymph node.

'My options were ' chemotherapy and radiation or surgery( 1providing that  I was a candidate)plus radiation

i did much research and decided early on that if I chose to go forward with treatment then I would not go through chemo. ;

Yes, my survival chances with this HPV form of cancer was 85% plus. I wasn't afraid of death. I was terrified about the treatment and life quality long term effects. I had had a good life with lots of love given and received, have a fairly empty bucket list and I didn't have the hope or courage that is needed to battle my cancer. What compounds my fears is that my only brother died from cancer that started in the exact spot at the base of his tongue. His cancer wasn't due to HPV but from the results of being radiated to shrink his tonsils when he was a young boy in the 1960's. My brother went through hell and back a few times. I have an crystal cleat vision of him during his second round of radiation.His pain was barbaric and he was a walking corpse. There were many days that I prayed that I could take some of his pain . He was very brave. Almost unbelievable that now almost five years later, I am diagnosed with a similar cancer. However, I don't have the courage that my brother did.

Due to the Grace of God and finally wanting to see many sunsets, I finally mustered up the courage to take the first step into my battle with cancer. i did tons of research and decided to travel a few thousand miles from my home town to be treated in a leading Hospital and be operated on by a highly respected  ENT surgeon.

My 3-5 days in the hospital grew into almost two weeks. I am now in a  nursing facility.

I have had much more pain than expected. Saliva and phlegm has been non stop. Still can not swallow after two failed swallow tests. I can't sleep because I'm coughing and feeling that I'm choking. Aspirating is a concern.

i drift off from exhaustion and my heart jumps because I see my brothers face I front of me. I know that I have a different body than my brother but I am worried that my slow healing is a sign of something  being wrong.Are there any cases when a cancer survivor never is able to swallow food again?

 

 

can someone please tell me how long it took you to start swallowing again and when did your secretions slow down?

The surgery removed twenty plus lymph nodes. Thankfully all nerves were spared.

Margins were found but I didn't meet the criteria to avoid radiation. originally I was suppose to start radiation two weeks from now but it feels way to soon. Your thoughts please?

My Doctor days that my radiation will be reduced because I had surgery. What does this really mean?

 

Is there any merit to look into Proton radiation? I would rather risk a chance of the cancer coming back by a few percentage points but not forfeit salivary glands, Taste buds, and getting painfully burnt.

i appreciate any input and words of encouragement.

thanks. I've been reading your posts to each other. It's very comforting to know that many of us have walked in similar shoes. There is so much information out there but I will pay more attention to people who have gone through similar challenges than getting info from regular web sites.

i welcome any and all input. Every drop of information will be of great help. Thanks much

Neil

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    Neil51,

    Welcome to the H&N forum, very sorry you are here, but you sound like you’ve traveled the same path of fear and the unknown which we all have traveled.

    With HPV you mentioned the survival rate of 85%, that is 85% with a whole course of treatments.  Treatments which may include surgery, chemo and radiation.

    To go on with life with no treatments to kill the cancer your future outlook may be quite dim. 

    Treatments have come a long way, with improvements to survival rate and post treatment side effects.

    I had stage IVa, scc, bot, 1 lymph node, hpv +(surgery, radiation and Erbitux).  It took me seven months post before I started eating normally again.  Today, at four years post I had the most delicious double cheeseburger and thank my lucky stars I had good treatment.

    These are all tough decisions, but the decisions you make set the course for your future.

    Good luck,

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    The "what if's"....

    I certainly went through all the possibilities of them before I started treatment....what if I can never taste again?  What if I never have saliva again?  What if I can't swallow again?  The list is endless.  My mom had SCC of the larnyx, and was never able to speak like you or I again....that went through my mind, also...what if it goes to my larnyx...ask anybody here, I could win a "what if" competition if there was one.

    To this day my what if's have not come to pass.  I lost saliva, but a lot of it returned....I lost my taste buds, and they are still coming back 3 years later....I can taste everything but sweet...which is good for my health. 

    If you've gone several thousand miles to get treatment, then your Dr.'s will know which type of radiation will work the best for your individual case.  Rads are tough, but in a big cancer center I'm sure they have the latest and greatest....which means every upgrade in the machines are less inclined to hurt good tissue.

    I had a recurrence this October....in some nodes just below the radiation line from my orginal treatment.  This time I had a neck dissection and they took nodes out.....then I had 25 rad treatments.....this time, I hardly got tan, let alone burned....got a little dry mouth, but that only lasted a week after rads were over....about the only side effect I had was fatigue.  In three years since my first treatment they had a new IMRT machine....and it was ever so much easier.

    You've had the surgery....they'll make sure you're healed before you start radiation....just plan on hunkering down for a few months...you're going to get to the end of this adventure....and go on to get those last few things off your bucket list.  Plan on it!

    p

  • the_wife
    the_wife Member Posts: 184
    #4
    Welcome to the site and I'm

    Welcome to the site and I'm sorry you find yourself here in need of advice. That being said, it's a great place to get firsthand information from other survivors.

    My hubby had stage 4 HPV+ tonsil cancer with 2 lymph nodes involved. He had 7 weeks of chemoradiation with cisplatin and lots of complications and severe side effects. At 5 months out he is still having problems eating and swallowing, but he IS able to swallow, however has some difficulty, which is not unusual as he is still recovering. He can eat normally, but he does not want to eat as there is no enjoyment. He has absolutely no hunger and his taste is messed up, which also is not unusual as I'm sure you've read here. But overall he is progressing as expected and the best news is that he is NED.

    If you are offered Proton Beam Therapy, I would go for it. It's only offered at a few clinics right now, but I've heard that it's a great alternative to IMRT, which is what my husband had. I wish it had been offered to us as I think he wouldn't have such debilitating side effects. We had no idea it would be like this. Some don't have as bad a time and a lot of it is attitude. Don't give up is the main thing.

    There is a clinical trial going on now with decreased doses of radiation and chemo that is showing some promise. My husband was offered to participate, but he declined. This is a hard road, but others have gone before you and come out the other side as survivors.

    Maybe your brother is appearing before you to tell you to hang on and fight. I had visions of my dead father and friend who passed away from cancer just before my diagnosis. I believe they were trying to help me and they did. It's because of those dreams that I discovered my cancer. I'm forever grateful to them. Do not fear the departed - they are angels on your side.

    I hope you have a ready, willing, and able caregiver to help support you on this journey. 

    Best of luck to you!

  • Grandmax4
    Grandmax4 Member Posts: 723
    #5
    You're not your brother ( bless his heart )

    November 2, 2016 will be 5 years since I had the devinci robotic surgery to remove a cancerous mass on my epiglottis~~~the surgery was long, I lost my epiglottis and lymph nodes. The side effects were awful, loss of taste, the mucus ( the worst) loss of the ability to swallow and speech was raspy and whispery. About 2 weeks after surgery, I got the awesome news that my lymph nodes were cancer free, no chemo or radiation needed. My team at the Wexner Center, Ohio State University, THE JAMES cancer clinic, started immediately with speech therepy. This not only strengthened my bent vocal cords, but, taught me to swallow a new way. For almost 6 months I was unable to eat, had a feeding tube. Finally, I was able to swallow pureed food and drink ensure and water. Not to go on too long about my struggles, today, I am declared cancer free, I eat and swallow any food, taste is back, and I'm living and enjoying my life.

    Trust me, your life is going to get better, trust your medical team to do what's best for you...best of luck, you are going to beat this...

  • MrsBD
    MrsBD Member Posts: 617 Member
    #6
    Welcome

    Welcome to the group where you don't need to have courage! We've been there and will offer as much support and advice as you need. Seventeen months ago I finished 33 sessions of IMRT and 8 infusions of Erbitux for Stage 4, HPV negative base of tongue cancer that had spread to a lymph node on each side of my neck.  I really feel pretty much back to normal now. My doctors believe in encouraging patients to continue eating if possible, so I did not have a PEG tube. I did the swallowing and neck exercises faithfully and, by God's grace, I made it, even though I lost 40 pounds. 

    Proton beam therapy seems to have fewer side effects, and the results are good, so I would definitely consider it. You might want to ask about some of the newer drugs , such as Erbitux, or see if you can get into a PD-1 trial. As much research as many of us have done, your doctors are the experts, and will guide your decisions.

    All of us were scared to death when we heard the cancer diagnosis. Like Phrannie said, all the 'what ifs' race through your mind. You couldn't ask for a more empathetic and supportive group than the people you've found here. You will be in my prayers. 

     

  • wmc
    wmc Member Posts: 1,804
    #7
    Welcome to H&N group

    Welcome and also sorry you need to be here. Prior to surgery I was T4;N2;M0, but as luck would have it I was T3;N0;M0 and the tumor was 3cm x 2.5 x2.5cm. In my supraglottic. My epiglottis did not function right and I had slient asperation an coughing up onces of blood. Bad lungs so I only had one option. Surgery to remove my lartnx and 86 lymph galnds and I breath out my neck, but never needed radiation or chemo. I think your odds might be just a little on the high side, but depending where you look you get different numbers. Amercian Cancer just reduced mine for a contained local and no spreading for supraglottic stage 3 is 53%, and was 63% two years ago. Doctor won't say, but mine should be maybe about 75%. Then we still have a 25% of returning and 90% if the person continues to smoke. It is true that HPV+ respondes much better to treatment, radiattion and chemo than no HPV. It also has a much better return rate as well. We have seen that here in the last several years. 

    All H&N cancer treatment is some of the worst you can go through. If you know you have to have surgery, it is better doing it before the skin and muscle has not been radiated. However many can just do radiation and chemo and get rid of the tumor and never have to have surgery. The chemo seems to clean up all the straggler cells and kinda just get rid of all the small ones. Both chemo and radiation have many side effects and the radiation seems to just keep on giving them. We hope the radiation goes well and because you had surgery to remove the tumor radiation is less as  it is just clean up and not having to shrink and distroy the tumor.  You arn't alone in your journey, and we always recomend to drink lots of water and keep swallowing. Yes, it is possiable to forget how and have to get retrained, and in my case to eat and speak as well.

    Bill

  • Neil51
    Neil51 Member Posts: 4
    #8
    thanks for all your kind words

    Can someone help answer a few questions and concerns of mine?

    its been three weeks since my robotic surgery. My excessive saliva has lessened but I still have way too much dark grey phleghm. The more I cough it up the longer it will take for my wound to heal. The constant hacking is keeping me up all night and I am very weak. The plan was to start six weeks of radiation by the second week of March. I have a second swallow test on this coming Tuesday. I hate be pessimistic but I really feel that I'm far from passing it. It's always important that I gain some strength back before I proceed with radiation. Will my health be compromised if I wait an additional month before I start radiation. It feels like a vicious cycle= needing to heal but also having this nasal feeding tube that is causing some stress and mucous.How long before the phlegm will lessen? Is it for sure that I'd need a feeding tube placed during the six weeks of radiation/

    does anyone know what the actual dialed back numbers are for a less intense radiation treatment.?

    has anyone had proton radiation instead of conventional radiation? Could the Jevity formulae that I am using through my tube be a cause of the thick phlegm? Perhaps a homemade formulae with less corn syrup and soy would be better? I prefer whey over soy. 1 would love to to try your favorite home recipes for tube feeding.

    thanks everyone and it's nice to meet all of you,a

    neil

     

     

     

     

     

     

     

     

     

     

     

  • the_wife
    the_wife Member Posts: 184
    #9
    Neil51 said:

    thanks for all your kind words

    Can someone help answer a few questions and concerns of mine?

    its been three weeks since my robotic surgery. My excessive saliva has lessened but I still have way too much dark grey phleghm. The more I cough it up the longer it will take for my wound to heal. The constant hacking is keeping me up all night and I am very weak. The plan was to start six weeks of radiation by the second week of March. I have a second swallow test on this coming Tuesday. I hate be pessimistic but I really feel that I'm far from passing it. It's always important that I gain some strength back before I proceed with radiation. Will my health be compromised if I wait an additional month before I start radiation. It feels like a vicious cycle= needing to heal but also having this nasal feeding tube that is causing some stress and mucous.How long before the phlegm will lessen? Is it for sure that I'd need a feeding tube placed during the six weeks of radiation/

    does anyone know what the actual dialed back numbers are for a less intense radiation treatment.?

    has anyone had proton radiation instead of conventional radiation? Could the Jevity formulae that I am using through my tube be a cause of the thick phlegm? Perhaps a homemade formulae with less corn syrup and soy would be better? I prefer whey over soy. 1 would love to to try your favorite home recipes for tube feeding.

    thanks everyone and it's nice to meet all of you,a

    neil

     

     

     

     

     

     

     

     

     

     

     

    My advice would be to check

    My advice would be to check with your medical team. They should be the ones to provide you with the best advice on your concerns about healing progress and treatment decisions. Not everyone qualifies for the clinical trial or proton beam therapy, so please check with your doctor. 

    My husband did not have surgery so his experience is different from yours. Although I will share that he had a PEG tube with the feeding end on the outside of the stomach. He resisted the idea of a feeding tube until he was halfway throught treatment, and when he was hospitalized with a fever he finally agreed to getting it. It was very necessary to keeping him nourished as he had severe mucositis that lasted for a long time after treatment. We used IsoSource for a long time before switching to Nutren, mainly due to shipping problems. I wasn't too concerned about the ingredients as I figured it was formulated for patients with his condition and it seemed to do the job. I think most people here have had the PEG instead of the nose tube - but again, your doctors are your best source of info with that. I'm not sure but I think there is a danger of the tube getting clogged with homemade mixtures and personally I wouldn't risk it. Are you working with a dietician?

     

  • MrsBD
    MrsBD Member Posts: 617 Member
    #10
    Neil51 said:

    thanks for all your kind words

    Can someone help answer a few questions and concerns of mine?

    its been three weeks since my robotic surgery. My excessive saliva has lessened but I still have way too much dark grey phleghm. The more I cough it up the longer it will take for my wound to heal. The constant hacking is keeping me up all night and I am very weak. The plan was to start six weeks of radiation by the second week of March. I have a second swallow test on this coming Tuesday. I hate be pessimistic but I really feel that I'm far from passing it. It's always important that I gain some strength back before I proceed with radiation. Will my health be compromised if I wait an additional month before I start radiation. It feels like a vicious cycle= needing to heal but also having this nasal feeding tube that is causing some stress and mucous.How long before the phlegm will lessen? Is it for sure that I'd need a feeding tube placed during the six weeks of radiation/

    does anyone know what the actual dialed back numbers are for a less intense radiation treatment.?

    has anyone had proton radiation instead of conventional radiation? Could the Jevity formulae that I am using through my tube be a cause of the thick phlegm? Perhaps a homemade formulae with less corn syrup and soy would be better? I prefer whey over soy. 1 would love to to try your favorite home recipes for tube feeding.

    thanks everyone and it's nice to meet all of you,a

    neil

     

     

     

     

     

     

     

     

     

     

     

    Mucus

    Two things that helped me with the thick mucus were Mucinex and drinking lots of water. Both help thin the mucus making it easier to cough out so you don't keep damaging everything. That stage lasted for several weeks, but it does eventually get better. 

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    Neil51 said:

    thanks for all your kind words

    Can someone help answer a few questions and concerns of mine?

    its been three weeks since my robotic surgery. My excessive saliva has lessened but I still have way too much dark grey phleghm. The more I cough it up the longer it will take for my wound to heal. The constant hacking is keeping me up all night and I am very weak. The plan was to start six weeks of radiation by the second week of March. I have a second swallow test on this coming Tuesday. I hate be pessimistic but I really feel that I'm far from passing it. It's always important that I gain some strength back before I proceed with radiation. Will my health be compromised if I wait an additional month before I start radiation. It feels like a vicious cycle= needing to heal but also having this nasal feeding tube that is causing some stress and mucous.How long before the phlegm will lessen? Is it for sure that I'd need a feeding tube placed during the six weeks of radiation/

    does anyone know what the actual dialed back numbers are for a less intense radiation treatment.?

    has anyone had proton radiation instead of conventional radiation? Could the Jevity formulae that I am using through my tube be a cause of the thick phlegm? Perhaps a homemade formulae with less corn syrup and soy would be better? I prefer whey over soy. 1 would love to to try your favorite home recipes for tube feeding.

    thanks everyone and it's nice to meet all of you,a

    neil

     

     

     

     

     

     

     

     

     

     

     

     

     

  • wmc
    wmc Member Posts: 1,804
    #12
    Kent Cass said:

     

     

       

       

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