Pet Scan Completed!!!

I suspect it wasn't half as scary as you thought. Is this right? I hope it is negative.  If you don't miind please let me know about results.

Suez39 said:

Mhrdad & Wbcgaruss

Hi to both of you. Thanks for your responses. Russell as far as my eating goes I'm having trouble with swallowing even baby food. My speech therapist pushing me real hard to eat one whole pudding container in one sitting. Sounds easy but isnt. Pudding sticks in my throat & have to sip water to get it down. I too finished my treatment last May but have a fear of aspiration when trying to eat soft food. So now I'm attempting to make milkshakes & sip them down. When you first attempted to eat what food did you get down? Was your epigoltis swollen from radiation?

Mhrdad I had cancer in my tonsil base of tongue and one lymph node. My pet scan showed cancer in tonsil and lymph node gone. But thier still is an elevated tissue on base of tongue where my tumor is. This is after my 35 treatments of radiation and 13 rounds of chemo. Very discouaged. So now I'm seeing my throat specialist this Thursday to check and see if he's going to biopsy that one spot on tongue or if he thinks it might not be cancer & scope me again in a few months. Two of my biggest fears now is don't know if cancer still on tongue or if it's scar tissue from radiation And will I Ever eat again or be on a feeding tube the rest of my life?? When you can't swallow & have trouble eating soft foods you have to be careful Not to choke to death. Your epigoltis protects your passage to your lungs. If that's swollen and does not work you have a high risk of food getting in your lungs!! Then you don't make it! In that case you rely on feeding tube with liquid. Horrible outcome. I miss working sooo bad. Not even retirement age yet. If you have to rely on disability for income good luck. My state gives you peanuts to live on. And wirh this type of cancer you can't work Unless you manage to get feeding tube out and eat. Big hurdle that is. How are you making iut? And Russ how long have you been cancer free and how long after treatment could you begin to eat soft foods? Have to try and sleep. Goodnight guys and God bless.

Good morning Suez39,

My response mabybe a bit disorgazized, because this posting of yours arose my concern for you in many areas. and I will number them.

1) Your 35 radiations were over a short time before 8/24/18? Is this more or less right? If yes then, it has been at most less than a month and perhaps even 3 weeks since your rad is over. I could not eat anything except things like soup with pieces of meat taken out and basically liquid diet for at leat 1.5 months after my 35 rads were over, I was never on a feeding tube during my treatment, but I think this is irrelevenat, to my not being able to eat anything except 100% liquid food for 1,5 months after my rad treatment. You should not be surprised/alamed that pudding sticks to your throat. Also did you choose feeding tube or did your Rad Oncologist suggested to put a feeding tube? It took me about 2.5 months to get to not so solifd solid food. the rads really do a job to your swallowking abilities, and keep in mind that in many cases (like mine), I know that my swalloing will NEVER get back to my normal (before rads). However after 7 or 8 months post rad, I was able to eat most solid foods.

2) With 35 rads (and 13 chemo), I was hoping that all of your cancer should have gone away. Please find a teaching Hospital, and continue your treatment there. The ya have a lot more resources and experts in a teaching hospital. It appears to me that your ENT played the roles of medical onco., rad onco, and ENT. In a teaching hospital you would have had 3 different docs.

3) Assume cancer intill Base of tongue is still present. You go to a teaching hospital and they'll get rid of it. And don't worry you don't have to be on a feeding tube for the rest of your life.  Did your ENT tell you washt was the stage of your cancr before you started treatment. If not please ask him on Thurs when you see him. Inital Stage of cancer is very important to know. one last thing: Are you on feeding tube at the present?

Take care,

Mehrdad

wbcgaruss said:

Suez39 WAIT

for your test results. If possible stick with the medical team you are with they know your case. Talk to them straightforward and let them know your concerns and ask any questions you have and if upset let them know that too. Call and make appointments as often as you need to till you feel comfortable. Suez I too had the same concerns you do. I finished treatment in May of 2013. I worried and wondered the same way you are "what if I'm on a feeding tube and can't get off it and have it the rest of my life?" I'm sure many on here were concerned with that. I trusted in God and his provisions and in my medical team and you can only take it day to day. I already had the treatment to get rid of the tumor and save my life that was number 1 so now that's done I figured I just have to deal with one thing at a time and take each thing as it comes. If I had to continue on a feeding tube I would cross that bridge when I came to it. Try not to think about a great number of things all at once and be wondering what if this or what if that just pray a lot, take care of yourself and deal with what you have to as it comes along. I remember going to my ENT every month after treatment and he would scope my throat and say "everything looks ok and as it should" considering the treatment you went through. But there was no change and healing and improvement until about the third or fourth visit as the swelling was going down and finally healing from the rads was finally going the other way. So this recovery is slow, and takes a pretty long time, and is in small increments and is measured in weeks and months, not days and weeks you need to be patient it will all work out for you. The nurse for my radiation Doctor when I started this sat down to talk with us and said straight out "You might as well know that this treatment and recovery will take a year of your life to get through". This is getting long and I hope I'm making sense and I am trying to say things to help you sorry if it is too long.

Your throat is still sort of raw, irritated, etc. yet you have to take your time. Let it heal to where it is all healed up-takes time.  Even now many years out my throat is not perfect nor will it ever be again. My ENT explained before rads you have a flexible throat and other parts in the area. Your tissue is soft and flexible.  After rads, it is sort of leathery but not really just imagine it is not as flexible and won't be as flexible again but will get better as you recover, because rads effect on the tissue  I think is a burning effect sort of that is why so many on here say you are still cooking for awhile after rads are done I guess.

Things are swollen from rads so your epiglottis may not seal quite right and things don't work as they once did so you have to wait till everything finds it's place again. As far as eating I don't remember when I could get any solid food down but I am pretty sure I was just thankful when I could finally swallow again and get something down anything down by swallowing again. And then you start with breakfast drinks and smoothies whatever rich liquid you can get down and advance to puddings, soups, soups with noodles or very buttered noodles, oatmeal and any soft food in small helpings and supplementing with the feeding tube till you can heal up from this devastating treatment and you will eventually be at what we call "Your New Normal" and you will be eating again. You will get through this and we are pulling and praying for you on this forum and sorry if this is so long. Sometimes long is good if it doesn't confuse. Hope this helped, any more questions let me know, God Bless and Good Luck.

Your posts help my husband and I a lot, Russ.   Hearing how other survivors deal with things, as well as their healing process, teaches and assures us.  Thank you to all who share their battle.

I try to help if I can and I remember this was the greatest support I had when I was going through treatment. A lot of if not most hospitals and cancer centers have support groups that meet every month or every other month but for me, this was my 24/7 seven day a week group.

Was throat cancer. Diagnosed in late November 2012 and I started treatment on January 1, 2013, My medical team never told me if you don't eat puddings etc. Your epiglottis will get hard and you will always have the the feeding tube. I'm not sure why they would tell you that because many people I've read on here lived on smoothie's and other soft food quite a while even years so what they eat can't be that dissimilar. I don't know why they are trying to push you to get off the feeding tube because others are off in a certain time period because everyone's different. Unless they sense you are afraid to make the step and be without it but you have to know that. I was told by my team that when I could eat enough for two weeks not using the feeding tube and maintain my weight they would consider taking it out. But they never urged me that was the answer I got after I asked: "when can I get this feeding tube out".Don't feel pushed and get it taken out till you're ready and can eat enough to maintain your weight. You may not need it 100% each day and can begin eating more and work you're way off dependence on it. Also, run all these questions you have by any doc you see like family doc till you get an answer to any questions you have. Maybe they think you can eat and should be off the tube but assure them you are doing your best and will be glad to have it out when you can sustain nourishment. Too bad your ENT isn't more help he should be scoping your throat and be knowledgeable on this area to give an authorized opinion not just say "oh go back and talk to her". As you are saying you are going to pressure him a little for some definite answers. You might just want to get a second opinion from another ENT and you may want to switch.  My ENT was the greatest through this. Very supportive, did not skirt any questions, compassionate and his secretary was involved concerned for me and making all the appointments I needed easy like with the cancer center, hospital, etc. 

And pay attention to what Patrick said that posted and check out his other posts in a search this guy has been through some tough times with this disease but you wouldn't know it. He is always upbeat, has great knowledge and expresses it well. Definitely one of CSN's veteran folks. And if you read this Patrick my hat's off to ya. Read your posts for years.

Well as usual I ended up typing more than I wanted and don't know if it all is coherent but hope you can make sense of it and it helps-Russ