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Steve1959
Steve1959 Member Posts: 28 Member
in Head and Neck Cancer #1

Hello, everyone.  First off, let me say that I have read every topic on head and neck cancer on this site.  Thank you so much for your insight and personal experiences with this form of cancer.  In July 2016 I was operated on for cancer in my neck (left side).  The SCC cancer was involved in my skin, large salivary gland, skeletal muscle and one lymph node.  The surgery was very extensive where they had to remove my left chest and use it to cover the hole in my neck that was the end result of the cancer operation.  Subsequently, I had 30 radiation therapy sessions directed at my neck, jaw, ear, and back of my head (left side).  I have a few questions with respect this cancer and where it was located in my body.  What is the survival rate?  My oncologist said it is anywhere from 0% to 80%.  He wouldn't be more specific as he indicated that my cancer was quite extensive that it would be difficult to give a more exact survival rate.  Also, what long term complications can I expect?  Thanks again for all the great information and personal experiences.

Steve

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2017 #2
    survival %, tough question, harder answers

    Hi Steve,

    Welcome to the H&N forum, if you read everything, we should be coming to you for advice.

    Your survival rate  to date is 100%, but going forward, one, two, ten years is handled better by my Vegas bookie.  Your onc 0% to 80% guesstimate sounds like he knows more or less about you specifically.

    You may have dry mouth, diminished taste and fatigue (to name a few) moving forward.

    Also, it sounds like you have had quite a trip, I hope things go your way from here on out.

    Matt

     

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    Moving Forward

    Hi Steve, 

    As Matt touched on the mixture of future issues that you may experience, along with a dash of humor, the one that we sometimes over look is the Thyroid as it gets hit with the radiation often times. You may want to have your Thyroid level (TSH) checked along with your Iron level for fatigue issues. 

    My RO told me that it wasn't a matter of IF my Thyroid would fail, but a matter of WHEN it would fail. Luckily, my thyroid lasted 5 years before I was put on Synthriod, which I take the generic Levothyroxine now.

    The Surgeons do the best they can and we get hit with the kitchen sink. I learned the only number that truly counted was the number 1, me/us. So I do what it takes to get thru each day so I can see tomorrow. Repeat daily. 

    My Best to You and Everyone Here

  • Steve1959
    Steve1959 Member Posts: 28 Member
    edited September 2017 #4
    YOUR ADVICE/COMMENTS ARE VERY MUCH APPRECIATED

    Thanks for your comments and advice.  This lets me know that there is a new normal for me with a future.  I am experiencing dry mouth and fatigue.  I have never been so tired in my life.  I take gabapentin for my discomfort and this adds to the fatigue.  Part of my new normal.  

    The Thyroid comment is interesting.  I will be seeing my Oncologist at the end of the month so this will definitely be a point of discussion.  And yes, I will definitely be taking care of number 1.  Humour is always in style.

     

    Steve

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #5
    RADIATION SIDE EFFECTS

    I guess my next concern is the side effects from the radiation.  My jaw still has a lot of discomfort after almost one year.  Has anyone had any experience with a sore jaw?  What is the likely hood of jaw and teeth complications?  How about hearing loss?  I did have 30 radiation therapy sessions directed (in part) at my left ear.  Again, thanks for your advice.  This is all new to me and I always have questions...

    Steve

  • SuzJ
    SuzJ Member Posts: 446 Member
    #6
    questions

    what was your TNM?

    Why no chemo?

    30 doesnt seem like much?

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #7
    Steve1959 said:

    RADIATION SIDE EFFECTS

    I guess my next concern is the side effects from the radiation.  My jaw still has a lot of discomfort after almost one year.  Has anyone had any experience with a sore jaw?  What is the likely hood of jaw and teeth complications?  How about hearing loss?  I did have 30 radiation therapy sessions directed (in part) at my left ear.  Again, thanks for your advice.  This is all new to me and I always have questions...

    Steve

    Laundry List of Effects

    Steve, 

    If you have looked at the Superthread which is the first post on the front page here and read only. You will see a laundry list of tips for all the different side effects we can inccur. We will each get our own list and deal with it as things pop up. 

    To answer your question about the discomfort with your jaw. I had some discomfort off and on for nearly 2 years. It had finally settled down and I don't even think about it.

    My treatment was similar to yours as I had 30 Radiation treatments and no Chemo. The Surgeon was sure he got everything and the Radiation was to clean up any stray cancer cells. Chemo was a backup in the event anything happened down the road. My surgery was in 2004 and I found this site while searching for answers to some of my own questions. 

    Hearing loss, some people have it and some have continued ringing in their ears, I have the ringing. It did not start right away, only the last couple of years, but I am 70 now so it could be the reason in my case.

    Teeth, this is a subject that is close to me as I had iffy teeth when I found my cancer. The cancer Dentist said it was my choice to remove all of what I had, or keep them. I chose to keep them, but I maintain my teeth daily with Flouride Treatments and brush after meals. I did have a couple crack on me due to me eating some hard candy and I learned my lesson there. I got them capped. Cavities are few and far between, generally very small if I do get them. I do not want to deal with the Hyperbaric Chamber to have them pulled so that is why I stay on top of them. 

    Ask as many questions as you need to, that is how we learn. 

    My Best to You and Everyone Here

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #8
    SuzJ said:

    questions

    what was your TNM?

    Why no chemo?

    30 doesnt seem like much?

    Hi SuzJ,

    Hi SuzJ,

     

    My TNM is pT2/pN1, poorly differentiated, stage 111.  The surgeon removed 37 lymph nodes and one was cancerous but was still encapsulated.  As such, he along with the radiorologist decided against chemo.  30 radiation treatments was a lot for me...

     

    Steve

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #9
    UPDATE ON MY H&N CANCER

    Hi everyone,

    A quick note to update you all on my medical condition. I just finished seeing my oncologist (May 04, 2018). With respect to the two lumps on my neck he indicated that there is no cancer associated with these lumps and that I shouldn't worry about them. However, the PET scan did indicate that there is a spot on my upper right lung and on the left side of my neck below my ear that requires further investigation. I will be scheduled for a CT scan in the very near future (approximately 4 weeks) to have a better look/understanding of these two spots. My oncologist can't provide any other feedback until the completion of the CT scans. I have to wait again for the results of my medical future. Very worrying!

    Take care.

    Steve

  • Billie67
    Billie67 Member Posts: 898
    #10
    Steve1959 said:

    UPDATE ON MY H&N CANCER

    Hi everyone,

    A quick note to update you all on my medical condition. I just finished seeing my oncologist (May 04, 2018). With respect to the two lumps on my neck he indicated that there is no cancer associated with these lumps and that I shouldn't worry about them. However, the PET scan did indicate that there is a spot on my upper right lung and on the left side of my neck below my ear that requires further investigation. I will be scheduled for a CT scan in the very near future (approximately 4 weeks) to have a better look/understanding of these two spots. My oncologist can't provide any other feedback until the completion of the CT scans. I have to wait again for the results of my medical future. Very worrying!

    Take care.

    Steve

    Steve, I’m sorry that you

    Steve, I’m sorry that you have to play the waiting game again. Please try not to worry, it will give you no answers and only make the wait longer. We have had many that have had spots light up on their Scans and prove to be nothing to worry about. I will think good thoughts for you that you can get in for your CT sooner than 4 weeks so you can put all of this waiting behind you.

    Breathe! 

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #11
    Billie67 said:

    Steve, I’m sorry that you

    Steve, I’m sorry that you have to play the waiting game again. Please try not to worry, it will give you no answers and only make the wait longer. We have had many that have had spots light up on their Scans and prove to be nothing to worry about. I will think good thoughts for you that you can get in for your CT sooner than 4 weeks so you can put all of this waiting behind you.

    Breathe! 

    Thanks Billie. I am now

    Thanks Billie. I am now beyond worrying. I haved accepted my new life and whatever uncertainties that it may entail. Camera up nose and down my throat (gag), PET scans, CT scans, etc is my new norm. How I live life inbetween these doctor visits/tests is what matters. It has been two years since my initial operation (July 18, 2016) so I am optimistic that my next CT scan will result in NED! Take care Billie.

    Steve

  • Billie67
    Billie67 Member Posts: 898
    #12
    Steve1959 said:

    Thanks Billie. I am now

    Thanks Billie. I am now beyond worrying. I haved accepted my new life and whatever uncertainties that it may entail. Camera up nose and down my throat (gag), PET scans, CT scans, etc is my new norm. How I live life inbetween these doctor visits/tests is what matters. It has been two years since my initial operation (July 18, 2016) so I am optimistic that my next CT scan will result in NED! Take care Billie.

    Steve

    Good for you Steve! That is

    Good for you Steve! That is an amazing way to look at things. 

    Have a good weekend and keep up the positive attitude 

    Take care,

    Billie

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #13
    Hoping For the Best

    This Friday I will undergo an "enhanced" CT scan directed at my left ear area and my upper right lung. Not too worried about the ear area as the PET/CT scans always indicated a "hot spot" in this area. The Oncologist always said it is from all the scaring in this area. Not too sure about my right lung. This is a new area that has shown a hot spot on my previous PET scan. Can only hope for the best. Right after my CT scan I pack up the U-Haul and move my daughters furniture and effects to Vancouver for her. She has a new job with a law firm there. She wants to practice environmental law or language rights law. Good for her. I shall definitely enjoy the ride through the Rockies and Beautiful British Columbia. The Oncologist usually calls me within 5 days with the results of the scan. I shall try not to think about what the results could be during my trip. Want to stay positive. 

    Steve

  • ProustLover
    ProustLover Member Posts: 121 Member
    #14
    Steve1959 said:

    Hoping For the Best

    This Friday I will undergo an "enhanced" CT scan directed at my left ear area and my upper right lung. Not too worried about the ear area as the PET/CT scans always indicated a "hot spot" in this area. The Oncologist always said it is from all the scaring in this area. Not too sure about my right lung. This is a new area that has shown a hot spot on my previous PET scan. Can only hope for the best. Right after my CT scan I pack up the U-Haul and move my daughters furniture and effects to Vancouver for her. She has a new job with a law firm there. She wants to practice environmental law or language rights law. Good for her. I shall definitely enjoy the ride through the Rockies and Beautiful British Columbia. The Oncologist usually calls me within 5 days with the results of the scan. I shall try not to think about what the results could be during my trip. Want to stay positive. 

    Steve

    Have a wonderful trip, and

    Have a wonderful trip, and try to stay in the moment.  I'll be thinking of you Friday  and will  

    send good vibes your way.  My husband will have his first follow-up scan on Monday, after neck dissection, radiation, and chemo for tongue cancer that metasticized to neck...we, too, will try to focus on the beautiful here and now...at least until there and then.   Happy driving!

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #15

     

    I had my (enhanced) CT scans of my neck and lungs on June 15, 2018. My Oncologist called me last night to inform me of the results. I definitely have to admire and appreciate our health care system here in Alberta. I have a CT scan and within 5 calendar days my Oncologist personally calls me to inform me of the results. Anyway, he indicated that he has no concerns with the spot on my neck. However, there is concern with the spot on my upper right lung. At this time the spot is too small to perform a biopsy (5mm) so both my Oncologist and the Radiologist want me to have another (enhanced) CT scan of my upper right lung by September 15, 2018. As you can imagine this is VERY worrisome for me at this time as my cancer spreading to my lungs is a very real possibility at this time. Not a good situation. I am not feeling very well at this time as this is all I can think about. I already have experienced a cancer that has spread all over the left side of my neck and had to live through the extensive operation and ensuing treatments. I don't want to go through all of this again. I now have no choice but to wait and see but I have to prepare myself mentally for the worse.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #16
    Steve-one spot

    Steve you have been through some of the worst and your going strong.

    Don't let it get you down.

    If it is that small they don't want to biopsy it it must be pretty small

    so it sounds to me like they are going to monitor it to see if it grows or stays the same.

    Be glad you are through some tough stuff and take comfort your team knows what's going on and watching it.

    My sister had a spot on her lung really small like yours and they checked it every year probably like 4 or 5 years

    or more and it started increasing in size so at that point I think they radiated it somehow I know she did not have an operation.

    Anyway it is gone now and it sounds like they are doing much the same with this spot.

    Steve hang in there you made it through before you can deal with this-take care

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #17
    wbcgaruss said:

    Steve-one spot

    Steve you have been through some of the worst and your going strong.

    Don't let it get you down.

    If it is that small they don't want to biopsy it it must be pretty small

    so it sounds to me like they are going to monitor it to see if it grows or stays the same.

    Be glad you are through some tough stuff and take comfort your team knows what's going on and watching it.

    My sister had a spot on her lung really small like yours and they checked it every year probably like 4 or 5 years

    or more and it started increasing in size so at that point I think they radiated it somehow I know she did not have an operation.

    Anyway it is gone now and it sounds like they are doing much the same with this spot.

    Steve hang in there you made it through before you can deal with this-take care

    Thanks wbcgaruss. The nodule

    Thanks wbcgaruss. The nodule is 5mm. Too small to perform a biopsy at this time. Hopefully, in September my next CT scan will show the the nodule to be the same size (or smaller). Can't seem to shake this cancer thing!

  • donfoo
    donfoo Member Posts: 1,773 Member
    #18
    Steve1959 said:

     

    I had my (enhanced) CT scans of my neck and lungs on June 15, 2018. My Oncologist called me last night to inform me of the results. I definitely have to admire and appreciate our health care system here in Alberta. I have a CT scan and within 5 calendar days my Oncologist personally calls me to inform me of the results. Anyway, he indicated that he has no concerns with the spot on my neck. However, there is concern with the spot on my upper right lung. At this time the spot is too small to perform a biopsy (5mm) so both my Oncologist and the Radiologist want me to have another (enhanced) CT scan of my upper right lung by September 15, 2018. As you can imagine this is VERY worrisome for me at this time as my cancer spreading to my lungs is a very real possibility at this time. Not a good situation. I am not feeling very well at this time as this is all I can think about. I already have experienced a cancer that has spread all over the left side of my neck and had to live through the extensive operation and ensuing treatments. I don't want to go through all of this again. I now have no choice but to wait and see but I have to prepare myself mentally for the worse.

    keep chanting

    You know the saying, "It ain't cancer until its proven". Still, hard to wait but stay positive and enjoy every day and moment.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #19
    Count your blessings

    You are still here.

    Do the recomended scans and tests to stay on top of your cancer situation.

    And like donfoo says enjoy and cherish every day and moment and live on.

    God Bless you.

  • Steve1959
    Steve1959 Member Posts: 28 Member
    #20
    Hi wbcgaruss,

    Hi wbcgaruss,

    I will definitely be following all of the oncologists advice including having the CT scan with contrast in September. Until then, and after, I shall definitely cherish and enjoy every day.

    Steve

  • Naizby
    Naizby Member Posts: 2
    edited June 2018 #21
    information on Infusiusio Germany

    Hello I am new to this group as of today.  I was diagnosed with stage 4 glotis cancer in March of 2016 treated with surgery and chemo and radition had several good scans then in December of 17 cancer mestatic to the lung reomved with surgery in Janaury of 18.  I know have two lymph nodes in my chest below helum and am exploring next treatment option.  I cam across the above place and they offer dendritic stem cell vaccine was wondering if anyone had experience with them or is knowledgable about them?  I jsut want to say that I hope if you are on this board you are able to find some happiness and enjoy the beauty  in each day, I try to but in honesty I struggle some days.  Finally sending everyone postive energy to help heal!

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