My story with SQUAMOUS CELL CARCINOMA, HYPOPHARYNX

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lightpulse
lightpulse Member Posts: 13
in Head and Neck Cancer #1

Hi my name is Tak,

It was the summer of 2016 while sitting in my patio smoking and drinking beer that I noticed a small but persistent lump in my throat around my vocal cords. I said to myself, "Boy, this lump has been there for several months". I wondered if this could be cancer. No way, I have a great lineage. My dad is 96 and smoked till he was my age and my mom is 88. Both are cancer free. Really no cancer in the family except my maternal aunt who died of stomach cancer. BTW, I'm 66, life time smoker and heavy drinker since my late teens. Needless to say I don't smoke or drink any more.

A little concerned so I made an appt. with my primary dr. and he referred me to an ENT. The ENT scoped me and scheduled a biopsy surgery. In Sept. 2016, ENT diagnosed me with SQUAMOUS CELL CARCINOMA, HYPOPHARYNX and set me up an appt. with my managing oncologist. Needless to say I was shocked. Like I heard a long time ago, I went through denial then fear. Well at least I don't have lung cancer. That would have closed the lid on my coffin. Treatment is going to be radiation and kemo. When the oncologist explained the process of these two treatments and possible side effects, my reaction was, "Oh, geez, how fun". But the actual process of radiation and kemo wasn't all that bad. The side effects of radiation was and is the worse of the two. Talk about a major negative impact on quality of life. The two worst things that came out of radiation were dry mouth and loss of taste. As far as dry mouth, if I eat anything that's dry or semi-dry foods like bread, pasta, grains, cakes, etc. they virtually turn into bread dough as I chew, sticks to my teeth and gums and cannot swallow unless I take a gulp of liquid with it. Most of my favorite foods I cannot eat any more. I'm basically confined to soups, stews and smoothies. And as far as taste is concerned, all foods taste like I'm eating hay, no taste. Moooo! Fortunately now in April of 2017, I feel like I have about 50% of my taste back but I still keep my salt and pepper shakers in my back pocket. Both my oncologist and dentist tell me my dry mouth is for life. And the dry mouth is having a havoc with my dental health. I must have about 8 dental problems in queue. It's going to cost me a fortune since I only have $1000 dental insurance per year. I'm looking forward into the future when it will cost me $2,500 per tooth for a dental implant.

Ooops, I better stop my diarrhea of the mouth for now and continue another day. Some of you must be snoozing away. Thanks you all for having your ears unfolded.

Tak...

 

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    WELCOME II

    Tak,

    Welcome to the H&N forum, sorry that you are here, but hopefully one of our non-cancerous brain H&N members can help you.

    There have been members who have made it through treatments for SCCH successfully.  The surgical side I am not very familiar with, but on the radiation side, lots of us can contribute to your knowledge base (as side effects are similar).

    Well you did get posted, I read it.  Now, we just have to wait to see if anyone meeting your criteria responds.  If you have general questions, almost any of us might be able to help.

    Matt

  • KeepingStrongForDad
    KeepingStrongForDad Member Posts: 2
    #3
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    Hi Tak

    Hi Tak

    Thank you for sharing your story

    My father has been diagnosed with the same cancer just recently. The Oncologist has ordered a Trachestomy to assist with his breathing prior to radio and chemo treatment in case the airways swell up and he cannot breath. 

    I am some what against this procedure as it seems very invasive. 

    Did you have this done? and did you have trouble breathing while undergoing radio and chemo therapy?

    Any advice would help

    Tony 

     

  • KeepingStrongForDad
    KeepingStrongForDad Member Posts: 2
    #4
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    CivilMatt said:

    WELCOME II

    Tak,

    Welcome to the H&N forum, sorry that you are here, but hopefully one of our non-cancerous brain H&N members can help you.

    There have been members who have made it through treatments for SCCH successfully.  The surgical side I am not very familiar with, but on the radiation side, lots of us can contribute to your knowledge base (as side effects are similar).

    Well you did get posted, I read it.  Now, we just have to wait to see if anyone meeting your criteria responds.  If you have general questions, almost any of us might be able to help.

    Matt

    SSCH

    Hi Matt,

     

    My dad has stage 4 SSCH. He is currently undergoing radio and chemo therapy however after 3 weeks the oncologist has said that the tumour has not reduced in size if anything it is slightly bigger. Is this normal? Should he stop treatment? we are trying to help decide what is best for him. 

    Tony Banh

  • wbcgaruss
    wbcgaruss Member Posts: 2,277 Member
    edited July 2018 #5
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    Hey Tak

    Just to cover a couple things. Many of us are left with the aftermath of dry mouth and loss of taste. Drink and swish around just before eating and get your mouth good and moistened ahead of time. I find salads with ample dressing is easy to eat whereas other things such as the pizza I just had needed a bit of water, soda, or whatever liquid you like added with each bite because of the crust. You just have to get used to your version of dry mouth and add liquid wise as per what you need to process whatever food you are eating. Plain water is a liquid but seems to take away from the food flavor a bit I like some kind of soda. You will have to experiment. And speaking of flavor I too had practically no flavor from food at first but it has come back like yours 50 to 60 percent it is really hard to gauge percent-wise and I agree extra salt helps give us better flavor. I am just thankful that my taste has come back enough that I can enjoy food again and am especially thankful I can eat and not on a feeding tube anymore. As far as dental I have been lucky I had 2 teeth with caps on and they broke off but I attribute that to the fact they were at least in 30 years and normal wear. I did have an eye tooth that seemed to break apart which may have been from cancer treatment. I now have a partial plate to replace those which you may want to consider as a possibility which may be more affordable than implants. Lastly, I floss once a day and use the plastic brush floss thing you get at the drug store with the brush that goes between your teeth after meals. And also recommended by our cancer support groups dental gal I brush twice a day with Squigle fluoride toothpaste and once at night before I go to bed withPrevident 5000 and don't rinse which is a higher fluoride and you need a prescription from your dentist and so far my last two dental visits were no cavities (knock on wood).

    This got a little long-sorry-hope some of it helps.

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,277 Member
    #6
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    Enlarging Tumors, Trachs etc.

    When I was diagnosed with a large tumor in my throat the docs were surprised at the size that I hadn't noticed anything till I got a sore throat that persisted. My cancer team worked up a treatment plan A which was 35 radiation treatments and chemotherapy in the beginning, middle, and at the end. This seems to be pretty standard. They then back tracked a bit. They were concerned the radiation would swell the tumor at first before shrinking it thereby possibly cutting my air off. So apparently when they radiate a tumor it can possibly enlarge before it shrinks. They discussed a trach but were not fond of the idea because it was another pathway for infection and I guess they take some maintenance don't know. So we went to plan B they came up with I spent 1 week in the hospital on a 24 hour a day chemo concoction for 5 days then had a respite of 3 weeks for my blood count to come back and did it all over again. Not much fun but the second week by Wednesday boy it was a bear I was really glad to get to Friday. I was scheduled to have 3 but my tumor shrunk dramatically more than they had ever seen. Docs were surprised. I attribute this to my prayers being answered as I prayed just that exactly that this treatment would have an amazing and great effect on the tumor, more than can be imagined. OK the tumor shrunk, no worry for breathing now back to plan A for the rest of my treatment. Hope this helps.

     

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #7
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    KeepingStrongForDad said:

    Hi Tak

    Hi Tak

    Thank you for sharing your story

    My father has been diagnosed with the same cancer just recently. The Oncologist has ordered a Trachestomy to assist with his breathing prior to radio and chemo treatment in case the airways swell up and he cannot breath. 

    I am some what against this procedure as it seems very invasive. 

    Did you have this done? and did you have trouble breathing while undergoing radio and chemo therapy?

    Any advice would help

    Tony 

     

    Lots of people get a trach...

    They prefer to be proactive and put it in while the airway is still ok....it's much harder and more dangerous when it has closed up and the patient actually can't breath.  If you trust your team then you should consider it.  They have a better idea of anyone how the patient will react to treatments.

     

    Also re: your other comment.  Don't stop treatment because the tumor hasn't shrunk yet.  It can take time...If your dad can keep going then you support him and encourage him to keep going!!!

    Good luck!

    Brandon

  • dalaitom
    dalaitom Member Posts: 27 Member
    #8
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    KeepingStrongForDad said:

    SSCH

    Hi Matt,

     

    My dad has stage 4 SSCH. He is currently undergoing radio and chemo therapy however after 3 weeks the oncologist has said that the tumour has not reduced in size if anything it is slightly bigger. Is this normal? Should he stop treatment? we are trying to help decide what is best for him. 

    Tony Banh

    My radiation oncologist

    My radiation oncologist explained that as the tumor walls begin to break down, it can cause the tumor to expand as it can no longer contain the fluids within. He said to not be surprised if the tumor gets larger before it begins to get smaller. In my case, I don't think this actually happened or if so, it was not a noticeable amount.

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