upcomming PET Scan

backachedp
backachedp Member Posts: 132
edited March 2014 in Head and Neck Cancer #1
My Husband Bob is having his 5 month PET after being Cancer Free as of May 21...he seems very very anxious and is very scarred as I would imagine everyone is. He keeps saying I'm not out of the woods yet...he is talking about getting our things in order...has gotten the whole house inside painted our Son did most of it had a tree cut down...I am worried he is not telling me something. He also seems to be forgetting things slurring his words, not quite right..don't know if he is over medicating or if he is having problems. He has been to the Dr's and they all say everything looks great...he was scoped twice last week a student asked him if it was ok to ask the Dr if he could do it after the Dr had already Scoped him, I thought that was nice, as I am sure being scoped is not fun. He has put on some weight with the help of the Carnation CRV...? we have ordered 4 cases, but it really packs the Calories 560 or 540...thanks to whoever it was who recommeded it! Have any of you had these same symptoms...I know about the anxiety as I am worried too and will be everytime he will have a PET, but the other stuff is kind of worrysome...
Thanks for any and all input you are a great bunch of folks and God Bless all of you.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi backache

    It is hard to tell what is going on in your husband mind; he has a lot on the table. We all worry a lot before doing out PET scans, it is the “what if part” that is always there waiting. Just let him keep working as I find it to be the best way to keep my mind off my problems. As far as his voice I am not sure what his C was, my C was NPC and I get a lot of numbness to the side of my face when I work or stress a little. It affects my Voice and makes it had to understand what I am saying, he may have the same problem.

    Take care and let us know how his PET goes, I will keep you both in my prayers until then.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    Good morning, Backache!
    My husband has his first post-treatment PET scan this Friday. Jim is also "putting things in order" regarding finances, etc. While it can be unnerving, I remind myself it is something that can help occupy his mind and time, and, truthfully, Backache, I would do the same thing if I were even simply facing a general surgery. Dotting all those "i's" and crossing those "t's" can be very comforting.

    As far as the physical symptoms, do a search on slurred speech and memory problems on this site, as well on late occurring symptoms following treatment, and I'm sure you going to find these are common.

    However, doesn't mean you shouldn't keep an eye on his medications and check with his doctor. Anyone, cancer treatment patient or not, can have a mini-stroke that could cause those same symptoms. It all bears following up on.

    Hugs to you. I know this is not easy. Also, prayers will be lifted from many on this site for the upcoming PET.
  • JUDYV5
    JUDYV5 Member Posts: 392
    #4
    Me too !!
    I am 4 months past treatment. I had a clean diagnosis as of July 21st. The C does change you. I find myself wanting to get things done. We replaced furniture and appliances that we planned to replace eventually - but figured why wait. I will never just have a headache or a cold anymore without wondering what if ???? I truly wonder if the anxiety will lesson as time passes. Sometimes I search for the right word or have to really think about how to do something that I have done a lot in the past. Since I am experiencing the same things as your husband I am assuming it is normal.
  • friend of Bill
    friend of Bill Member Posts: 87
    #5
    Mortality
    I doubt someone can go through diagnosis, treatment and recovery without an heightened awareness of personal mortality. (Unless there are some darn good drugs out there I didn't have access to!). Although we are all different, when my body had been pretty much demolished, it would have been hard for me to think I had turned the corner at 5 months. There was just too much weird stuff going on in my body for me to think, "I'm back!") The slurring needs to be checked out to be on the safe side. LOTS of folks on this board have commented on significant memory problems, I certainly had my share even past a year but it improved. The possibility he's withholding information from you is tricky - it's possible. Why not just ask him? I didn't consciously withhold, but I didn't always share the frequency and intensity of my fears with my wife nor did she with me. However as far as the medical side, she was on the medical visits so she know everything and actually know it better b/c her brain was not scrambled like mine! It helped that she happens to be a nurse. Some post-treatment anxiety I think is not unusual, at least it was in my case, If it gets debilitating - then there are meds, counseling, etc available. You'll get through this!

    Vince
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    I do slur my words some times.
    I have "subcutaneous edema" according to my last PET-CT. My neck and throat area swell up, and it feels as though my tongue is swollen as well. Most mornings, I need a good neck massage, tongue exercises and a cup of lukewarm coffee before I can even think about speaking clearly. Always improves later in the day. Three-month PET-CT was clear.

    Deb
  • backachedp
    backachedp Member Posts: 132
    #7
    D Lewis said:

    I do slur my words some times.
    I have "subcutaneous edema" according to my last PET-CT. My neck and throat area swell up, and it feels as though my tongue is swollen as well. Most mornings, I need a good neck massage, tongue exercises and a cup of lukewarm coffee before I can even think about speaking clearly. Always improves later in the day. Three-month PET-CT was clear.

    Deb

    Thank you to all...
    I want to Thank all of you who have helped me understand what my Husband has been going thru. I am Disabled and have been on many message boards and never have I come accross such WONDERFUL CARING Folks! I am hoping the PET will go well and I am sure it will and if it does not..we go from there...Bob say's the Dr's all say he is doing wonderful..he does not want me to come to his Appt's because I say things he does not. Bob is a very quiet man who has always been afraid of Dr's...he would say his pain was at 2 when they could look in his mouth and see the sores and they knew he was fibbing. I would speak up and he decided he wanted to go alone. I don't want to force myself on him and everyone has thier own way of getting thru things and this is his way. I am thinking about calling his ENT and asking some questions as Bob did put down on all of his papers I could have access and info on him. It has been almost a year since he has been at work and if this PET goes well he will return to work as tollerated. He has worked for the same company for over 30 years and he was a Welder...they don't want him to Weld now..he will drive a Forklift when he goes back and we are very grateful they will take him back. Not alot of Companies will do that...but we will see for sure when the time comes. I wish everyone good day's and prayers to all who are going thru treatment now. Everyday is a blessing. I don't take anything for granted and have not for the last 11 years since I was injured and had to stop working, but I do work 12 hours a week at a Funeral Home/Cemetery...it is a good distraction to just be able to get out of the house for 3 hours a day 4 day's a week. I stayed home for 5 years and was depressed and thought I will prove the Dr's wrong I will work again. I am happy to have a job even if it is 12 hours I work with wonderful people who are very caring. Enjoying the sunshine here in Minnesota...beautiful weekend here...:))
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #8
    Just had second PET
    I'm 7 months post treatment and 4 months from my June 3rd scan. Had it done yesterday and I don't have an appt. to see rad/onco doc until the 28th. I'm a little anxious to get the results, but no news is good news at this point. I've been working out at a gym the past 2 months and feel physically sound & I go back to working part time in two weeks. I still have the new normal to deal with, phlegm, dry mouth & unable to eat most solids. My voice goes all over the place from weak in morning to ok midday and then croaky again at night. I've been on the 560 Carnation Instant Breakfast for the past 2 months and have gained 10 lbs. back, 15 more will be ideal. Try to remain positive and plan for a long future. It's time to create a bucket list or dust the old one off and get planning. It's Hawaii for me next July.........God willing.

    Positive thoughts your way,
    Ed
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Ed_PortOrange said:

    Just had second PET
    I'm 7 months post treatment and 4 months from my June 3rd scan. Had it done yesterday and I don't have an appt. to see rad/onco doc until the 28th. I'm a little anxious to get the results, but no news is good news at this point. I've been working out at a gym the past 2 months and feel physically sound & I go back to working part time in two weeks. I still have the new normal to deal with, phlegm, dry mouth & unable to eat most solids. My voice goes all over the place from weak in morning to ok midday and then croaky again at night. I've been on the 560 Carnation Instant Breakfast for the past 2 months and have gained 10 lbs. back, 15 more will be ideal. Try to remain positive and plan for a long future. It's time to create a bucket list or dust the old one off and get planning. It's Hawaii for me next July.........God willing.

    Positive thoughts your way,
    Ed

    G'day Ed
    Thanks for sharing, all the best to you on your PET results
  • meinken
    meinken Member Posts: 38
    #10
    D Lewis said:

    I do slur my words some times.
    I have "subcutaneous edema" according to my last PET-CT. My neck and throat area swell up, and it feels as though my tongue is swollen as well. Most mornings, I need a good neck massage, tongue exercises and a cup of lukewarm coffee before I can even think about speaking clearly. Always improves later in the day. Three-month PET-CT was clear.

    Deb

    For jaw swelling
    I also wake up each morning with a swollen jaw, also the area under my chin gets very hard and swollen. My ENT also called it Edema. He suggested and I bought a compression chin strap, kinda like the one here http://www.makemeheal.com/mmh/product.do?id=16223
    I wear it for about an hour(and look silly) and it flattens everything down and I stay that way for most of the day.
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #11
    meinken said:

    For jaw swelling
    I also wake up each morning with a swollen jaw, also the area under my chin gets very hard and swollen. My ENT also called it Edema. He suggested and I bought a compression chin strap, kinda like the one here http://www.makemeheal.com/mmh/product.do?id=16223
    I wear it for about an hour(and look silly) and it flattens everything down and I stay that way for most of the day.

    Facial Band Compression Garment
    Thanks for that link. I will be ordering one when I get back from a short trip to NC. I also have that hard ball under my chin and I especially like that it says it helps with dry mouth. I want to see if i can sleep with it on since this is the worst period for me.

    Thanks Again

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