Surgery has been scheduled and I am freaking out!
Comments
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Hi Nita
We have all been afraid and terrified when we hear the words cancer and then we say who me. It is hard indeed to know what next to do as our thoughts run wild in our minds and we have no idea of what the future holds, so consider yourself normal. Go on with life and make it as best as you can, I love the song Jesus take the wheel. Because sometimes yes we become so overloaded with problems we don’t know what to do or where to go; it is then we just turn the Wheel over to Jesus. Put you trust in God, I been there three times and find he has never let me down yet.
You are in my prayers may God bless and keep you while in His Workshop.
Tim Hondo0 -
Hi NitaNita,Hondo said:Hi Nita
We have all been afraid and terrified when we hear the words cancer and then we say who me. It is hard indeed to know what next to do as our thoughts run wild in our minds and we have no idea of what the future holds, so consider yourself normal. Go on with life and make it as best as you can, I love the song Jesus take the wheel. Because sometimes yes we become so overloaded with problems we don’t know what to do or where to go; it is then we just turn the Wheel over to Jesus. Put you trust in God, I been there three times and find he has never let me down yet.
You are in my prayers may God bless and keep you while in His Workshop.
Tim Hondo
I also had
Hi NitaNita,
I also had tongue surgery and neck disection about a month ago. I know we go thru lot of emotions when we hear the C word butnad Hondo said there is nothing we could do about it, we have to trust god and as so many survirors will tell you ...journey is hard...but it will end and you will be almos normal again.
Enjoy the time till surgery, dont let this your moods down.
I was home in 4 days after the surgery and did not take any pain meds after i got home.
Sam0 -
Hi Nita.....
It's hard to learn to turn things over to God...the minute you do it, you grab it right back...the whole world of "cancer" is so out of our control...we have to put our lives into other people's hands, wooooo....scary scary thing to do. I too, have had anxiety problems all my life. I learned to turn my life over to the care of God, a long time ago...but I remember how I learned to do it. The second I felt the anxiety rising up, I turned it over again...over and over during the course of day...and pretty soon I found that the points where I was grabbing it back were becoming further and further apart. I made a very concious effort of giving it back to God.
Another thing that happened to me on this board...I made mention where I lived, and out of the blue another person on here said "I'm your neighbor" (and I live in Po-dunk, Montana). This person intruduced me to three other people in our town who have had treatment for HNC. All three of these people have been SO supportive in real life. Maybe say where you're located, and see if someone here is close to you...can meet with you, and support you face to face...this kind of contact really does help me. Seeing and hearing with my own eyes and ears, that they made it thru treatment just fine, that they're back to work, and living their lives is a confidence booster.
p0 -
surgery
Hi Nita,
I’ve been exactly were you are and felt just as you do, it is scary, the unknown. At least after the 19th you will know, you are being proactive having this done. As for anxiety, I discovered that feeling on my first PET scan. I felt hot and flushed and I felt like running outside like my hair was on fire. For prayer, every time I got scared or confused.
I hope the 19th goes smoothly for you.
Matt0 -
Thank youCivilMatt said:surgery
Hi Nita,
I’ve been exactly were you are and felt just as you do, it is scary, the unknown. At least after the 19th you will know, you are being proactive having this done. As for anxiety, I discovered that feeling on my first PET scan. I felt hot and flushed and I felt like running outside like my hair was on fire. For prayer, every time I got scared or confused.
I hope the 19th goes smoothly for you.
Matt
I really do thank you all for giving me some advice on how to let go of the fear and try and continue life. I know this is making me a stronger person and God is watching over me. I just have to keep reminding myself of this.0 -
Thank youCivilMatt said:surgery
Hi Nita,
I’ve been exactly were you are and felt just as you do, it is scary, the unknown. At least after the 19th you will know, you are being proactive having this done. As for anxiety, I discovered that feeling on my first PET scan. I felt hot and flushed and I felt like running outside like my hair was on fire. For prayer, every time I got scared or confused.
I hope the 19th goes smoothly for you.
Matt
I really do thank you all for giving me some advice on how to let go of the fear and try and continue life. I know this is making me a stronger person and God is watching over me. I just have to keep reminding myself of this.0 -
Keep Walking ForwardNitaNita said:Thank you
I really do thank you all for giving me some advice on how to let go of the fear and try and continue life. I know this is making me a stronger person and God is watching over me. I just have to keep reminding myself of this.
There really isn't a choice for you to not have the surgery so try hard to accept it. I had the same thing done and my worries didn't seem bad to me at the time but what happened was my blood pressure went sky high. That and I ended up cracking a back molar tooth due to clenching my jaw. We all handle stress differently. The blood pressure was so high I thought I might stroke out. The Dr. got me on a BP med right away.
Maybe try some meditation? I pray all will turn out great for you. Keep a positive attitude Nita, it is very important.
Tom0 -
tommyodaveytommyodavey said:Keep Walking Forward
There really isn't a choice for you to not have the surgery so try hard to accept it. I had the same thing done and my worries didn't seem bad to me at the time but what happened was my blood pressure went sky high. That and I ended up cracking a back molar tooth due to clenching my jaw. We all handle stress differently. The blood pressure was so high I thought I might stroke out. The Dr. got me on a BP med right away.
Maybe try some meditation? I pray all will turn out great for you. Keep a positive attitude Nita, it is very important.
Tom
Yeah I have been biting my tongue from being so tense all the time. I keep telling myself their isn't much I can do so need to relax and just live life. Sometimes easier said then done when your mind goes running with the "what if's" However thats when I have to reel myself back in and tell myself I am already been so blessed. Pet Scan says hasnt spread and caught early and IF not in the nodes then I will be done after surgery. God is taking care of me and will get me through this. Thanks for the prayers.0 -
NitaNitaNita said:Thank you
I really do thank you all for giving me some advice on how to let go of the fear and try and continue life. I know this is making me a stronger person and God is watching over me. I just have to keep reminding myself of this.
As Matt said, a lot of the anxiety is likely due to the Unknown- where this is gonna take you, mostly. We've all been there, Nita. And, yes, this is a big deal, because it is C you are dealing with. Thing is, Nita, this is 2012 and there's a wealth of medical history in regards to what you are about to go thru. True, I can't speak for your specific Dr's experience, but your type of Operation has been done many, many times over the years, and the Op, itself, is not life-threatening. And, remember, the hospital folks are there to not only make this a success, but also to make what you go thru acceptable to you. And they will make it so that it is nowhere close to what your anxiety is telling you it will be like. 2012, Nita. Everything with your physical condition will work out okay.
Believe
kcass
All Prayers are with you0 -
Hi Nita ....NitaNita said:Thank you
I really do thank you all for giving me some advice on how to let go of the fear and try and continue life. I know this is making me a stronger person and God is watching over me. I just have to keep reminding myself of this.
It's so normal to give it to the good Lord and take it back, give it, take it back. I do not hold myself out there to be any different (just ask longtermsurvivor who has given me some great support when I start "wondering off in freak out mode") ...
It reminds me of Peter who saw Jesus walking on the water in the middle of a storm (Matthew 14: 28-32) and asked if he could come, and Jesus said "come" ...Peter actually walked out on the boat and was walking on the water!!! One would think if you could do that (walk on water) then what could possibly make you doubt!!!! But Peter started looking around and saw all the waves and storm clouds and he did in fact get scared and doubt ..and began to sink. Peter cried out "save me Lord" and guess what...the good Lord did reach out his hand and save Peter ....so even when you "freak out" and try and give it to the Lord and take it back....it's okay? He knows right where you are at and He cares.
I truly believe the good Lord gives us people to help us on this earth as well as His Word. The people on this forum have helped me soooo much and you can just tell they care. There's that bond we all share now called cancer.
I have had you on my nightly prayer list since you first appeared on the forum....so know that I (and I am sure others) are praying for you. Also know that I too have days when I get scared and worry. I hope others are praying for me as well, I need them too.
You have some great things going for you; you are young (so your body is in prime fighting condition) you have some great reasons to fight (your family) and you obviously have faith and you are so far at stage I .....so many positives!!! You will do great!!
Best,
Tim0 -
ken and timTim6003 said:Hi Nita ....
It's so normal to give it to the good Lord and take it back, give it, take it back. I do not hold myself out there to be any different (just ask longtermsurvivor who has given me some great support when I start "wondering off in freak out mode") ...
It reminds me of Peter who saw Jesus walking on the water in the middle of a storm (Matthew 14: 28-32) and asked if he could come, and Jesus said "come" ...Peter actually walked out on the boat and was walking on the water!!! One would think if you could do that (walk on water) then what could possibly make you doubt!!!! But Peter started looking around and saw all the waves and storm clouds and he did in fact get scared and doubt ..and began to sink. Peter cried out "save me Lord" and guess what...the good Lord did reach out his hand and save Peter ....so even when you "freak out" and try and give it to the Lord and take it back....it's okay? He knows right where you are at and He cares.
I truly believe the good Lord gives us people to help us on this earth as well as His Word. The people on this forum have helped me soooo much and you can just tell they care. There's that bond we all share now called cancer.
I have had you on my nightly prayer list since you first appeared on the forum....so know that I (and I am sure others) are praying for you. Also know that I too have days when I get scared and worry. I hope others are praying for me as well, I need them too.
You have some great things going for you; you are young (so your body is in prime fighting condition) you have some great reasons to fight (your family) and you obviously have faith and you are so far at stage I .....so many positives!!! You will do great!!
Best,
Tim
Thank you! I know God led me to this site. I was scanning through the web looking at everything on there that can scare the heck out of you when you have cancer. Then I decided to join this site and pray that someone on here would even write me back. Every time I see your guys sweet words of inspiration it brings tears to my eyes. You all have helped me more then you will ever know. Guess Tim I am stage 2 now because of the size but I had been misdiagnosed twice before a differet Dr decided to do a biopsy.. so again God wathcing over me! You all are awesome and so strong! I hope I can help someone out too.0 -
Thoughts & Prayers...
Though I didn't have your specifics, I was STGIII SCC Tonsils and a lymphnode. The anxities and fears are with all that have been here, in one form or another.
And I'm pretty sure you will find someone on here that has gone through this and survived to give you answers to your questions.
Even with that being said, other than your specific Dx, most have gone through some portion of what you may encounter...between surgeries, chemo, radiation, or some mixture of the three.
Best,
John0 -
same surgery as youSkiffin16 said:Thoughts & Prayers...
Though I didn't have your specifics, I was STGIII SCC Tonsils and a lymphnode. The anxities and fears are with all that have been here, in one form or another.
And I'm pretty sure you will find someone on here that has gone through this and survived to give you answers to your questions.
Even with that being said, other than your specific Dx, most have gone through some portion of what you may encounter...between surgeries, chemo, radiation, or some mixture of the three.
Best,
John
Nita, I am sorry I am so late in responding. I am living proof that you can have the surgery and survive ! I lost 75% of my tongue (which is way more than you are facing), I had 40 lymph nodes removed via neck dissection, and had my tongue rebuilt with muscle, artery and skin from my forearm. It was not an easy ride by any means, but if they are saying that surgery may be the only treatment you need, go for it. In my case, Stage III, and the size (more than past the midline of the tongue), I also had 30 radiation treatments. Those were far far harder on me than the surgery. I was only in the hospital for 6 days, and when I came home, I could drink liquids and swallow. The recovery from the surgery was fairly quick. If you don't need radiation, you will bounce back even better than I did since you are so much younger. I am going to send you a private message with my telephone and email in case you want to talk. And YES, I can speak fairly well. People say they can understand me fine, it sounds worse to me. I also am now off of a feeding tube and can eat a lot of different things.
good luck to you.0 -
Hi NitaIngrid K said:same surgery as you
Nita, I am sorry I am so late in responding. I am living proof that you can have the surgery and survive ! I lost 75% of my tongue (which is way more than you are facing), I had 40 lymph nodes removed via neck dissection, and had my tongue rebuilt with muscle, artery and skin from my forearm. It was not an easy ride by any means, but if they are saying that surgery may be the only treatment you need, go for it. In my case, Stage III, and the size (more than past the midline of the tongue), I also had 30 radiation treatments. Those were far far harder on me than the surgery. I was only in the hospital for 6 days, and when I came home, I could drink liquids and swallow. The recovery from the surgery was fairly quick. If you don't need radiation, you will bounce back even better than I did since you are so much younger. I am going to send you a private message with my telephone and email in case you want to talk. And YES, I can speak fairly well. People say they can understand me fine, it sounds worse to me. I also am now off of a feeding tube and can eat a lot of different things.
good luck to you.
Firstly I wanted to say welcome, this is a wonderful place full of wonderful people who will give you great advice and support.
I wanted to post as I had a fairly similar (if anything slightly more extensive) surgery just over 4 weeks ago. I am currently in Dubai on holiday with my wife and the two little ones (18 months and 3 years) enjoying the (slightly too powerful) sun! Our bodies heal incredibly well - you will amaze yourself with your strength when it comes down to it, trust me you will.
I had selective left sided neck dissection levels I to V which was about 35 nodes in total. My situation was a bit different - I am 34 years old and have MEC (salivary gland c) which appeared in a node but with no sign of a primary if there is one. Because all my scans were clear they also removed a tonsil and a part of my tongue on the left side as those are 'active' places so could be hiding places from the PET scan.
I was in hospital for about a week, only because there was quite a lot of fatty fluid draining from my neck so they had to keep the drain in. My surgery lasted about 6 hours so I found for a couple of days I felt no real pain because of the large amounts of anaesthetic I'd had. After about 3 days the tonsil (you won't have to worry about that) became extremely painful but the meds would help and was fine about a week after the original surgery, then the tongue kicked in. It wasn't a constant pain, but if I sent the food down the wrong side of my mouth it felt like a shard of glass - very sore.
I love my grub though and was eating solids 2 days after the surgery so I was probably to blame for that! Cramming noodles and rice etc down the right side of my throat! The neck looks a bit scary early on with the staples - but it's astonishing how fast it heals. Pretty much all the swelling was gone from mine 3 weeks on and a bit of scar tissue remains but that's all. The scar is healing nicely and it's honestly not even that obvious already - unless you inspect closely the part on my throat looks like a wrinkle.
I was off painkillers within about 2 weeks (those make you feel bad) and 4 weeks on all I really feel is a bit of tightness and numbness, and some hard bits of scar tissue. Being honest, the best thing I can say is I feel pretty normal - 4-5 weeks on. I am eating and talking completely normally, exercising, working, having fun with the kids - the scar and a bit of loss of feeling are all that is left and that seems a good deal.
I suppose one of the scariest parts is the results - well not all results are bad. Everything they took out of me was completely free of cancer, and it's just 4 monthly scans for me for 12 months no rads or chemo required. I can't promise you the same good fortune but our minds tend to be drawn to the worst possible outcome. If you read these boards there are many more happy than sad stories. There is still some uncertainty of course but we all live with that after diagnosis. Just try to keep positive, believe that you are going to be ok.
Head and neck variety of cancers are hugely beatable in this day and age - the treatment can be tough but the outcome is usually worth it so you have every right to believe you will get through it. You have plenty of evidence to support that belief. As Ingrid said although we are too young for this which is tough luck, if we can beat it with surgery then that is the best outcome as we heal really well. If you can avoid rads then that would be fantastic.
All the very best of luck, and I hope and pray that you are sitting on a beach looking back on this surgery - and thinking that you surprised yourself with your strength and got through it like I am now. If I can help with any advice at all please let me know. Keep us posted on your progress.
All the best
Leo0 -
Hi Leo, happy to hear thatLeoS2323 said:Hi Nita
Firstly I wanted to say welcome, this is a wonderful place full of wonderful people who will give you great advice and support.
I wanted to post as I had a fairly similar (if anything slightly more extensive) surgery just over 4 weeks ago. I am currently in Dubai on holiday with my wife and the two little ones (18 months and 3 years) enjoying the (slightly too powerful) sun! Our bodies heal incredibly well - you will amaze yourself with your strength when it comes down to it, trust me you will.
I had selective left sided neck dissection levels I to V which was about 35 nodes in total. My situation was a bit different - I am 34 years old and have MEC (salivary gland c) which appeared in a node but with no sign of a primary if there is one. Because all my scans were clear they also removed a tonsil and a part of my tongue on the left side as those are 'active' places so could be hiding places from the PET scan.
I was in hospital for about a week, only because there was quite a lot of fatty fluid draining from my neck so they had to keep the drain in. My surgery lasted about 6 hours so I found for a couple of days I felt no real pain because of the large amounts of anaesthetic I'd had. After about 3 days the tonsil (you won't have to worry about that) became extremely painful but the meds would help and was fine about a week after the original surgery, then the tongue kicked in. It wasn't a constant pain, but if I sent the food down the wrong side of my mouth it felt like a shard of glass - very sore.
I love my grub though and was eating solids 2 days after the surgery so I was probably to blame for that! Cramming noodles and rice etc down the right side of my throat! The neck looks a bit scary early on with the staples - but it's astonishing how fast it heals. Pretty much all the swelling was gone from mine 3 weeks on and a bit of scar tissue remains but that's all. The scar is healing nicely and it's honestly not even that obvious already - unless you inspect closely the part on my throat looks like a wrinkle.
I was off painkillers within about 2 weeks (those make you feel bad) and 4 weeks on all I really feel is a bit of tightness and numbness, and some hard bits of scar tissue. Being honest, the best thing I can say is I feel pretty normal - 4-5 weeks on. I am eating and talking completely normally, exercising, working, having fun with the kids - the scar and a bit of loss of feeling are all that is left and that seems a good deal.
I suppose one of the scariest parts is the results - well not all results are bad. Everything they took out of me was completely free of cancer, and it's just 4 monthly scans for me for 12 months no rads or chemo required. I can't promise you the same good fortune but our minds tend to be drawn to the worst possible outcome. If you read these boards there are many more happy than sad stories. There is still some uncertainty of course but we all live with that after diagnosis. Just try to keep positive, believe that you are going to be ok.
Head and neck variety of cancers are hugely beatable in this day and age - the treatment can be tough but the outcome is usually worth it so you have every right to believe you will get through it. You have plenty of evidence to support that belief. As Ingrid said although we are too young for this which is tough luck, if we can beat it with surgery then that is the best outcome as we heal really well. If you can avoid rads then that would be fantastic.
All the very best of luck, and I hope and pray that you are sitting on a beach looking back on this surgery - and thinking that you surprised yourself with your strength and got through it like I am now. If I can help with any advice at all please let me know. Keep us posted on your progress.
All the best
Leo
Hi Leo, happy to hear that you're doing wonderfully!
NitaNita, one thing that really helps me when I have a not-so-good day is thinking that by the end of the July I'll feel perfectly normal. And so will you. Just hang in there.
Dre.0 -
Leo and Dreooo said:Hi Leo, happy to hear that
Hi Leo, happy to hear that you're doing wonderfully!
NitaNita, one thing that really helps me when I have a not-so-good day is thinking that by the end of the July I'll feel perfectly normal. And so will you. Just hang in there.
Dre.
LEO..Thanks for taking the time to write me about your surgery. I think at this time that's what is freaking me out the most. I try not to think about it possibly being in the nodes since it is a 10% chance..however the surgery being just a few weeks away has me scared. I hate the unknown just like most of us do so not knowing what to expect really sucks. It was good to hear you were able to eat after a few days just on the right side because I have became quite used to only eating on that side now or I feel like I am eating glass. I have wondered if they should take my tonsils out since the left side of my throat hurts all the time but they say it's just because of the lesion on my tongue. They did a pet scan and it only showed the tongue so I should stop thinking it could be in my throat or anywhere else for that matter but like I said I tend to worry about everything. DRE..Thanks..That is a good thought that by July I will be happy and over this road bump!! I have high hopes for that! 0 -
Question Dre..NitaNita said:Leo and Dre
LEO..Thanks for taking the time to write me about your surgery. I think at this time that's what is freaking me out the most. I try not to think about it possibly being in the nodes since it is a 10% chance..however the surgery being just a few weeks away has me scared. I hate the unknown just like most of us do so not knowing what to expect really sucks. It was good to hear you were able to eat after a few days just on the right side because I have became quite used to only eating on that side now or I feel like I am eating glass. I have wondered if they should take my tonsils out since the left side of my throat hurts all the time but they say it's just because of the lesion on my tongue. They did a pet scan and it only showed the tongue so I should stop thinking it could be in my throat or anywhere else for that matter but like I said I tend to worry about everything. DRE..Thanks..That is a good thought that by July I will be happy and over this road bump!! I have high hopes for that!
Did they remove all of the cancer from your tongue and your nodes were clear from cancer but they still want to do radiation? I was told if the nodes are clear then I just have to have check ups every month for the first year and that's it. Was just wondering if that's something I should be having done as well.0 -
NitaNita,NitaNita said:Question Dre..
Did they remove all of the cancer from your tongue and your nodes were clear from cancer but they still want to do radiation? I was told if the nodes are clear then I just have to have check ups every month for the first year and that's it. Was just wondering if that's something I should be having done as well.
During my surgery
NitaNita,
During my surgery I had 19 lymph nodes removed from the same side of the neck where the tumor was. All the lymph nodes were clear and the tumor in the tongue was removed with clear margins.
I'm doing radiation because, after surgery, the pathology report showed that the tumor was invading some nerves (the technical term is "perineural invasion"). Since it might happen that a few cancerous cells travel along the nerve far enough from the tumor and escape the scalpel, perineural invasion is a predictor of recurrence. After surgery I had the option of walking away and hope for the best, or having radiation.
Honestly, there's nothing to be gained in thinking about this stuff unless you have to. And in case you're wondering, radiation is very doable too, especially for us youngsters.
Please, please, please, do not worry. Don't make me feel bad for answering your questions.
A big hug to you and your family.0 -
Rads / Waitingooo said:NitaNita,
During my surgery
NitaNita,
During my surgery I had 19 lymph nodes removed from the same side of the neck where the tumor was. All the lymph nodes were clear and the tumor in the tongue was removed with clear margins.
I'm doing radiation because, after surgery, the pathology report showed that the tumor was invading some nerves (the technical term is "perineural invasion"). Since it might happen that a few cancerous cells travel along the nerve far enough from the tumor and escape the scalpel, perineural invasion is a predictor of recurrence. After surgery I had the option of walking away and hope for the best, or having radiation.
Honestly, there's nothing to be gained in thinking about this stuff unless you have to. And in case you're wondering, radiation is very doable too, especially for us youngsters.
Please, please, please, do not worry. Don't make me feel bad for answering your questions.
A big hug to you and your family.
Hi Nita / Dre
Dre thanks - it sounds like you are doing great as well! How are you finding the rads?
Nita - the waiting, I think most people on here will agree is the worst. When things start happening, tough though they are - you will feel better. At the end of the day you will have a needle in your arm, go to sleep then the next thing you will know the worst will be done, and you have taken the first steps to getting better. Between my diagnosis and operation I found doing plenty of exercise helped take my mind off things, and kept me in a good place.
After that, although we all share a similar affliction each individual set of circumstances is different and the treatment going forward has to be tailored to each one.
I had one node with cancer in it - they removed it thinking it was a cyst even when they looked at it as it came out (I still have my post op discharge sheet saying 'removal branchial left cyst'); my immune system had trapped it very cleanly in the node so it looked like a cyst - an oval shape with very clear walls which had not been penetrated.
In my case, after the pathology reports revealed MEC the onc said only 'low single figure chances' it had spread because of this and my scans. In my case the 'safety net' was the dissection - I had an MRI a week before my operation which suggested no further node involvement or any cancer at all. We could have left it there for now but we agreed to do the dissection both to make sure and for peace of mind. As it turned out they were all clean and my immune system had done a great job of catching the original one. I don't regret it one bit - better safe than sorry for sure with cancer.
If it had spread to any other nodes I would have been having rads to my neck - as it is my onc (who is an amazing guy, one of the best in the UK) said I simply don't need rads now with everything clean and no sign of a primary. In Dre's case the safety net was the rads - Dre I would have made the same choice, without a doubt.
Another factor was i have MEC which is a little more 'indolent' than SCC which is what many on here have, and is much more common; each case is a bit different. After the results of your surgery you will have a sit down and discuss the best way forward. If you trust your guy then take his advice, if you aren't so sure get a second opinion.
If your guy says they got it clean and you don't need rads then that would be a perfect outcome - I very much hope that's the case, but whatever comes along you will get through it.
All the best
Leo0 -
Surgery
Hi, I am in a similar position. I have finished my chemo and radiation and my left node is 12mm instead of 10mm. They are going to do a Pet Scan on June 21 and if it is not good or if it is inconclusive they are going to do a neck disection and take the left lymph nodes out. I am scared and trying to turn it over to God. Some days I do better than others. I have children still at home and would hate for them to go through anymore than they already have. Good luck with the surgery. I wish we did not have to wait!
Ann0
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