Pet Scan Completed!!!

Suez39

To all my H & N friends:

A quick update regarding my pet/ct scan. I took it today and got through it!! I'm so happy about it. The imaging facility was great. What a major difference than the last one I went to. The techs were extremely knowledgeable and they even had thier own doctors overseeing the tests. Results should be in a few days. I pray that I'm an NED (no evidence of disease). I have been trying so hard to beat this & listen to my doctors and taking care of myself. Like you all know it's the eating you want badly also. I'm still on a feeding tube & can only sip soups and take applesauce ice cream & cottage cheese. Esphoghas very narrow so trying to stretch it out. I'm alittle over 3 months post treatment. How long does it take to eat solid foods? I would like to hear how long it's been for you guys out there. Im so thankful for this site as people have helped me wirh thier insight and compassion. I'm an Italian and hope I can eat pasta and my homemade sauce again. Do you know whatta  i mean? What's da matter with a you? Lol Just some joking around. Hope I put some smiles on your faces. Have to go hook up my feeding try to sleep. Please keep me posted on your progress. I enjoy hearing from you. Hugs to you all!! 

Suez da piazzano!

 

wbcgaruss

Suez39-Wonderful News

I am so glad and thankful for you that you got through your scan and had wonderful techs and personnel to make you comfortable and everything to go smooth. If you need a scan again this experience will help you not be apprehensive. I am certainly praying for  NED (no evidence of disease) and am thankful you are past one more hurdle with this scan. For me to start getting anything through probably a couple months or maybe three months. My treatment ended in May and I could not swallow anything, not even water or any liquids. At the end of October or beginning of November, I turned my feeding pump back in and was able to eat enough to sustain my weight. But also, later on, I got turkey stuck in my throat and had to go to the ER and have it removed as it would not come out or go down no matter what I tried and following that, I had 4 throat dilations to open my throat a bit. Helped a great deal and can swallow most any pill now also. Keep in mind each person varies as to their case such as surgery, number and strength of rads, location, etc everyone's different. The fact that you can get some liquids and food through now and swallow some things now is a good sign and you will keep improving from here on out. You will be eating your beloved pasta soon and joking around tells me you feel well and are on the good side of this and everything is going pretty well. God Bless and Prayers your way. Russ

mehrdad357

I am glad it's 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

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.

mehrdad357

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,

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

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.

momall25ofu

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

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.

armana

Aware of false positives

you should be aware of false positive If this is the 1st Petscan post treatment. My 1st pet scan 4 months post treatment came back positive at the same spot where the cancer was found but lower uptake since the initial scan.  The follow up pet scan 6 months later was all clear.  

Good luck on Thursday.

Arman

 

 

 

wbcgaruss

Thank you momall25ofu

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.

Suez39

Mhrdad & Wbcgaruss

Thank you for your responses. Mhrdad I finished treatment 5/21/2018. So it has been about 3 1/2 months and still have difficulty swallowing & can't eat. I do go to a teaching hospital & also have a rad onco chemo onco and ENT. As far as feeding tube my rad onco told me I should have one put in and I'm still have the feeding tube. Do you have one? And how are you progressing with this terrible disease?

Wbcgaruss I appreciate your post back to me. You gave me clarity on alot of things. My throat still very painful but tomorrow I go see my ENT & he's going to scope me to tell me about the elevated tissue I have and hopefully answer my questions. Did your medical team keep telling you if you don't eat puddings etc. Your epigoltis will get hard and you will always have feeding tube? My nutrionist gets me upset cause every time I see her she tells me that. When I try asking my ENT about it he tells me to talk to her. So basically no help from him. Tomorrow I will push him for an answer. Last visit chemo nurse told me almost everyone by now has thier tube out and are eating. Said only me and 2 other people have tube still. She really made me feel bad. And unfortunately this is my team I have to work with. But I still have faith in God my rad onco and ent. Your right everyone is different and I didn't know it could take up to a year to recover. I think some of the nurses don't quite understand cause they are just going by thier trainING and never had it before. Again Russ thank you for your feedback and I hope to hear from you. If interested I will let you know about result from my ENT. And I wanted to know was your cancer on base of tongue too? 

Suez39

Thank you Arman

Atman thanks for letting me know about pet scan. I'm hoping it's a false positive since this was my first scan after treatments. Hopefully my doctor tomorrow will let me know if he's concerned about it. I'm so thankful for this forum and everyone's responses are sefinitely helping me. Think it's just as good as a support group.

patricke

Congratulations!

Hey Suez, huge congratulations on having a good PET/CT scan experience!  I am totally with you in wishing for NED results.   I encourage you to look at your recovery as a marathon and not a sprint, as my experience has taught me that patience, perseverance, creativity, and flexibility are some of the keys to resilient recovery.  I found that I sometimes had setbacks before springs forward, so I do recommend a one day, hour, minute, second, nanosecond at a time (whichever may be necessary at any given time) perspective.  I lived, worked, and played with a PEG tube for 12 years; and after much thought and experimentation, I finally figured out how to safely surf with it.  Keep It Mov'in Forward, and no matter what you may be faced with during your recovery and journey, remember:  You Can Do This!

Patrick    

wbcgaruss

Suez39 My Cancer

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

 

Suez39

Thank you Patrick & Russ

I had to cancel my appt thursday with my ENT. Throat was very painful. Need some time for it to ease up in order to get scoped. Patrick I give you a huge amount of credit living with a feeding tube for 12 years! It seemed like it never got you down and you remained in good spirits! And Russ your post did help put a better understanding on my situation. I sometimes feel left out with the knowledge about my cancer. My meducation team should tell me more. Your responses were greatly appreciated -- Susan