Freaking Out

OldiesBob
OldiesBob Member Posts: 6
in Head and Neck Cancer #1

Ok, I had a squamous cell tumor removed from my tongue in 2001 and neck dissection, radiation; and a recurrence on neck (other side, tumor removed, neck dissection, chemo and radiation) in 2003. This was supposed to be in my past.

Five months ago my dentist identified a new lesion, removed New Years Eve, brachy radiation to the affected area. Before that could even heal, I noticed a new tumor on the bottom of my tongue - had that biopsied and removed (all of the above at Loyola in Chicago). Since then I have had another tongue tumor biopsied as malignant/HPV+, one or two other suspicous bumps to be biopsided Tuesday, and two questionable neck lymph nodes spotted via PET scan. The good news (sic) is that I can honestly say that so far, my cancer is all in my head...but with its current level of activity, it's been described as "mean" (wonder if that's a generally accepted medical term).

I have "changed teams" to University of Chicago. My wife and I had lost confidence in the current gang at Loyola, and my original surgeon (Guy Petruzzelli, who is an excellent doctor and a real mensch) had relocated to GA. So far I like my doctors at UC who all seem to be trying to "think like the cancer" and how it's spreading, and plan the most effective countermeasures. We have spoken to chemo, radiation, and surgeons at Chicago, who have presented my case to their Tumor Board and recommended I begin with chemo (TBD 5/16), then if I really want to go for "survival" complete removal and reconstruction of the tongue, PEG tube nutrition, and "mop up" radiation and chemo. Even with all that, as they would say in The Hunger Games, they say the odds for "survival" like 2003 are not in my favor.

I am not quite 64, still working (put in for LOA beginning 5/16), expecting first grandchild in next two weeks. I am a believing follower of Christ, but in no hurry to say goodbye to my loved ones. What I'd hope from this community is some advice on how others have gotten their minds back under some kind of control when it spins to thoughts of "doom and gloom," what happens to my family if I don't beat this, how much to share with adult children and how best to do so. My wife (an RN) already questions quality of life issues with the tongue reconstruction and likely tracheotomy, vs. buying as much time as I can just with chemo - having said that, she is my angel who says all decisions are ultimately between me and my doctors.

I have always been a "planner" who at least thought my future was something I could plan for. I am intensely uncomfortable with "discovery" and living day-by-day...but I suspect I have no choice to adapt. Any thoughts on longer-term quality of life, and especially mental coping issues, would be most welome.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited May 2016 #2
    Welcome Bob....

    to our little club here at CSN.....not like anybody wants to join.  This is a wonderful group of people, and if it wasn't Mother's Day, you'd have heard from a few folks by now I'm sure. 

    We're similar in that both our cancers are in our heads....but mine was behind my nose the first time around in 2012, and in my lymph nodes only this last bout found in October 2015.  There are folks here who have had tongue reconstruction with flaps....I don't remember if anyone had a complete removal  and reconstruction, tho.

    There is a Head and Neck Cancer group on Facebook where there are a number who have faced what you are facing.  It's a secret group, and by invitation only....that's simply because people want their privacy and don't want what they say in the group to be posted to everyone they know.  Quality of life is kind of like beauty.....in the eye of the beholder....what's quality for some isn't for others. 

    If you do want to connect with others who have had complete removal and reconstruction....you have to befriend me on Facebook so I can get you into that group.  My name on FB is Jackie Larrick Stevens....I think I'm the only one of those :). 

    Being a planner is good....living one day at a time is more manageable....as with all things somewhere inbetween is probably the ideal....moderation....in the middle....etc.  I think hooking up with others who have gone through the same thing as yourself may be very helpful in thoughts and ideas for adapting and mental coping issues.

    p

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    Your Post

    Bob, 

    Your post brought back a lot of emotions today for me as I read your post as I visit our grandkids on Mothers Day. Like you, I had Base of Tongue cancer 2004, mine was SCC. No one can tell you which route to take, that decision is solely yours. 

    I found out that I had cancer roughly 3 months after our 1st grandson was born. Was history repeating itself in my family as my grandfather died 3 months after I was born. Being an old Marine, I took the fear/ uncertainty and changed it to fight mode. I was going to do whatever it took to be here for as long as possible with the help of the Doctors and my Supreme Commandant. 

    I had part of my tongue removed and was told I would have eating issues and speech problems. Some of this is true as I can eat soft foods and do not have the PEG Tube for the rest of my life as first told that I might. I do have problems with certain words when talking which I avoid and no saliva at all. You will know what your limits are and decide what is best for you. I know that my decision was the right one for me as I now can enjoy visiting our 3 grandkids now. 

    Like you, I've had to deal with other issues with cancer along my road. I take each one as they show up.

    Others will be along to answer your post.

    My Best to You and Everyone Here

  • wmc
    wmc Member Posts: 1,804
    #4
    Welcome to H&N group

    Welcome and sorry you need to be here,[ a long time ago] You have already been through this many times. I understand the worry and concerns and possibly losing your speech with a full glossectomy. There are some that still do have speech and it is hard work but can be done. It is very likely that you may have a tracheotomy to assist in breathing while you heal.

    I had cancer of the larynx just above my vocal cords, supraglottic stage 3 and bad lungs so they had to remove my larynx [vocal cords] and I have a stoma [permanent trach] and breathe through my neck and still have the ability to speak.

    I understand your concerns and why you switched hospitals. They did a neck dissection on both sides Level 2-5 just as a precaution and from what I have seen over the last few years I am glad they did. They took 86 total. I do realize they want to do as little surgery to someone so they won't have complications, but way to many are having it come back and now they have two or three surgeries.

    Have you given any thought to Northwestern Memorial Hospital as they are Nationally ranked and much higher?

    http://health.usnews.com/best-hospitals/rankings/cancer       This is a hospital National Ranking List.

    You might instead of a leave of absents you might want to go out on short term disability and it pays more if you have that. We do in California and it is for 6 months then you can go on long term for 24 months. The big advantage is you can keep insurance and only pay your part as you do now.

    As for the quality of life, that is something only you can answer, and I do understand that part as well. I will keep you in my prayers.

    Bill

     

  • swopoe
    swopoe Member Posts: 492
    edited May 2016 #5
    My 41 year old husband had

    My 41 year old husband had SCC of the tongue removed and a neck dissection in November 2015 and then chemo and rads finishing in January 2016. I am sorry to hear that you are going through this all again. You will be in my thoughts and prayers.

  • kdot2003
    kdot2003 Member Posts: 143
    #6
    Hi Bob

    Hi Bob, 

    I really dont know how to cope with all those multiple reoccurrances.  Those who remember me when I first posted on this board can say I wasnt coping very well with my first and so far only diagnosis.  I'm not a very religious person but I do believe in God.  When the worry and doom overcame me I did pray and it really really helped.  It was a feeling of peace.  It suprised me because my faith was weak.  I am so so sorry you are fighting this battle that seems never ending right now.  I'm a nurse and I feel for you wife too.  Bless you both.  

    Karen

  • rcaulder
    rcaulder Member Posts: 70
    edited May 2016 #7
    I am a believing follower of Christ

    "I am a believing follower of Christ", this is what caught my eye on your post other than you're amazing for handling this multiple times.  This is how I brushed off my doom and gloom thoughts. When I was first diagnosed with cancer last May,  horrible thoughts overwhelmed me. I started reading statistics then I really got depressed. Then a thought  popped into my head, God doesn't pay attention to statistics, neither should I. Gods word says hundreds of times in the Bible, "do not be afraid, do not worry" . I think He meant it. To follow Christ is to do what He ask's of us. That is not to worry. Also to have faith He has this covered. Your thoughts of doom and gloom come from the enemy, the liar, the devil. He wants you to feel that way.  The opposite to this is what God tells you, "do not be afraid, do not worry". This is how I combat gloom and doom. Hang onto Jesus's promises.  Matthew 11:28-30New International Version (NIV)28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”.   God has power over all flesh. Cancer is flesh.  Trusting Him, this is how I dealt with the gloom and doom.

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited May 2016 #8
    Hi Bob

     

    Welcome to CSN H&N, sorry to hear all the bad news, I am NPC and it came back on me 3 times before it finally gave-up. No matter what the doctors say keep your focus because you have a lot to live for, I now have 7 grandchildren and I am glad to be here with them and be a part of their life’s.

     

     

     

    Tim

     

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
    #9
    Ignore that...

    Anyone telling you about odds can go pound salt.  Don't ever think you are in one statistical pool or another.  You are you and your path is your own.  In the world of cancer, the stats of the masses mean nothing to the individual.  You will beat this.  You will recover.  Your life will go on.  There's no reason you can't.  Hang tough.

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #10
    Odds and Statistics

    They both stick out in my mind when I think back. 35% chance of this you have a 85% chance of that, the weatherman said there was a 30% chance of rain yesterday and guess what..............it didn't rain shot his percentage right in the butt. My theory on odds and statistics, they are based on other peoples experience and plain and simply, I ain't other people. 

    Sounds like you have a future grandchild to spoil. What's that saying...................Live Life to the Fullest............I'm doing that, just a bit abi-normal than before. I'm living today while looking forward to tomorrow.

          Jeff

  • wmc
    wmc Member Posts: 1,804
    #11
    Duggie88 said:

    Odds and Statistics

    They both stick out in my mind when I think back. 35% chance of this you have a 85% chance of that, the weatherman said there was a 30% chance of rain yesterday and guess what..............it didn't rain shot his percentage right in the butt. My theory on odds and statistics, they are based on other peoples experience and plain and simply, I ain't other people. 

    Sounds like you have a future grandchild to spoil. What's that saying...................Live Life to the Fullest............I'm doing that, just a bit abi-normal than before. I'm living today while looking forward to tomorrow.

          Jeff

    Love the weather forecast, except...

    Just an FYI
    When they say there is a 30% chance of rain that doesn't mean 70% it won't. What it really means is that 30% of the area they are broadcasting in will get rain. Really confusing and not really logical as they very seldom do explain it. While living in the LA Ares we had a weatherman who did explain it so it made since.

    Now about the odds for us, I do agree completely. There is so many factors to add to the situation like age, O/A Health and what else there is the person had going on. Where you get treated and how and in what order they do things, all would have to be plugged into everyone's to even get close to the true odds. Oh and don't forget if they give it 100% and really believe and fight and then the size and exact location of the tumor.

    I guess you can just say, take one day at a time and fight with 100% and believe in yourself and support and then you have very good odds.

    Bill

  • OldiesBob
    OldiesBob Member Posts: 6
    #12
    Thanks so much

    ...to everyone who welcomed me and shared their stories. I particularly appreciated the private messages, and also the perspective on statistics and "odds of survival." Yesterday was my first official day of leave from work, and also my appointment to learn about the details of my chemo treatments which begin Friday at University of Chicago. The two combined for a bad mental day. As I've mentioned I don't particularly care for journeys - I want to get to the destination, or know how the story ends - so I will likely continue to struggle with this until I resign and adapt to this new way of living.

    I know I need to do a better job celebrating the victories along the way. For example, I had five suspicious areas biopsied last week, including one on my vocal cords - the only one that came back positive for cancer was the one previously biopsied and identified at Loyola. I was walking on air Friday afternoon when I saw those results, but by Saturday evening I was back to having a panic attack listening to the sermon in church.

    Right now this journey is really dampening my experience to feel joy - case in point grandson Benjamin, born Friday, as beautiful and healthy as can be. Even with the constant stream of cellphone photos he just feels unreal at the moment. My wife and I found cheap flights to spend a few days with him and his parents this weekend, so I'm hoping that once I actually hold him some emotion will "break through."

    Again, thanks to all here. Now that I have a little more time I hope to be more of a caring presence who can share support with others. I know that's at least one of the keys to getting so much out of my own head...

  • wmc
    wmc Member Posts: 1,804
    #13
    Bob right there is the best reason to get attitude and fight.

    The journey can be rough, but you will get through it. Your Grandson is one of the best reasons to get the attitude you can take on anything that comes. You can have the best doctors and they can do everything for you, except fight. That part is all you. Will just thinking good thoughts make you well? No, but not thinking them will not help you at all. You have to believe in yourself and do whatever it takes and give 110%. Yes, it does work. My Great Aunt broke her upper leg when she was 80. Doctors and everyone told me she would never walk and I was just too young to know that, I was 12. Well, she wanted my jump rope to raise her leg that had a cast all the way to her foot, so when she got out it would work. I was the only one who believed in her and also the only one she let sign her cast. She drove her car until she was 86 and walked until she passed at almost 90. She believed and never gave in. My wife and I have similar stories. Only five people thought I get through mine and that is counting myself and doctor, and I am going great........... You have to give it your all, and most important, believe.  You can click on my name on the side and it will take you to my story, and then my expressions even has some photos of the surgery where I was cut from ear to ear [not too grose], and the doctors are no longer considering removing 30% from each lung, like I said I'm doing great.  Hope this can help.

    Bill 

  • Barbaraek
    Barbaraek Member Posts: 626
    edited May 2016 #14
    Welcome Bob

    I don't have much to add from the above posts...my husband's cancer was in the nasopharynx and not the tongue. But I do want you to know that we both felt much better after "taking care of business" - evaluating our financial status, wills, health care proxies and all that. Once that was out of the way we could focus on fighting the disease, celebrating each small victory and holding steady when times were tough. Our faith helped us a lot, and so did many friends...both real and especially the virtual ones here on this board. Today our catchphrase is "everyday is icing on the cake." I'll be keeping you in my prayers and keep us posted on how you are. We're here for the good, bad and ugly....it's a safe place to question, complain and celebrate.

    Barbara

  • MrsBD
    MrsBD Member Posts: 617 Member
    #15
    Hope

    Don't throw in the towel just yet! I just attended a series of presentations at the Medical College of Wisconsin about new innovations in cancer treatment. Since your first bout five years ago, there have been several new therapies developed. The discoveries can personalize your treatment with immunotherapy or block cancer development in other ways. There is a lot of hope now that wasn't there a few years ago. We will be here for you too with prayers and support.

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