Newly diagnosed, surgery soon

LiseA · January 2016

Hello, I was diagnosed wish Squamous cell carcinoma two months ago. I am having surgery on February 8th, and i am terrified!

We chose MD Anderson because that was the surgeon's recommendation, following my biopsy diagnosis.

the surgeon at MDA said there is a possibility of losing some jaw bone, and teeth as well. I have been frozen mentally since listening to the ty of surgery. It all sounds so horrible. They have prepared me for problems with speech, feeding and breathing tubes, and also needing to take bone from the leg, and skin and tissue from thigh and wrist area.

Initially, first instinct was NO TREATMENT. Let me live for now and die from Cancer :-(

Anyone else sought cancer treatment at MDA for the same type of cancer?

Any tips for preparing for surgery, and recovery?

Hope to share more as time goes on.

wmc · January 2016

Welcome to the H&N Group

Welcome to the group, but very sorry you need to be here. Yep, you are scared just like we all were as well. Let me answer your questions first, and have questions as well. MD Anderson is one of the best in the country. It is rated #1 in cancer, and #5 for ENT. There have been many that went there and some might still be going. Head and Neck cancer covers everything below the brain to the esophagus and thete is a lot in between. It sounds like it might be in the jaw? Some are base of tounge, tonsils, sliva glands, thyroid, laryngeal, lymph glands, and a few others. Mine was stage 3 SCC in the supraglottic [just above vocal cords] and I only had surgery, no chemo or radiation. They removed my larynx and did a neck dissection on both sides and removed 86 lymph glands.

My guess is surgery and chemo and radiation. Radiation will damage some teeth, and maybe some jaw bone. You need to remember this is beatable, so you do need to fight and it is going to be very rough. I am not trying to make it worse on you as I do know just how scared you must be. But you are going to want me to be honest and give you the truth and facts. If you can put on weight it will help. Drikk water everyday and many many times. You need to stay hydrated and keep swallowing. You can forget how to, really. You are going on a very rough ride and it has many ups and downs. Some get through it very easy and some have it rough. H&N Cancer is said to be the 2nd worst to go through. It does have very good survival rates. Did the say if it is HPV+? You might just record your voice so you will always have it That can help with speach recovery. Hey if I can speak and I have no vocial cords, you will do fine.

One thing to remember is you are going to the #1 place, and you are not alone in this. The people here have been through this or are the caregiver to one that has. You will need to get an attitude that you can beat anything. This is much easier to go through with the right attitude. Some have said it won't matter but it really do. It affects how you fight and recover. Having the wrong attitude can affect how well you recover or don't. Try to be at peace, you will, get through this.

When you talk to the doctors take someone with you always. Write down all your questions and leave room for the answers, then just hand it to the doctors. That way you get them all answered and you don't go blank and forget to ask something. Humor helps also but you will understand that when it is time to. If you get scared and just need to tell someone just how you do feel, you can't find a better place. We all have vented some here and it helps just knowing someone really does understand. We were already in your shoes.

I'm at 28 months since my surgery and I am doing great. I know some who are more than 20 years survivors. Now you just take one day at a time and for now, only today matters. You will be in my thoughts and prayers. Feb 8th is a good day. I celabrate it every year.

Bill Oct 2nd 2013

swopoe · January 2016

Welcome, and sorry you are

Welcome, and sorry you are here though. Do you live in Houston? We do and used both MDA and Memorial Hermann for my husband's tongue cancer. He just finished treatment last week and was diagnosed in October 2015. We have some of the very best hospitals here in Houston, so you are in good hands. Let me know if you need anything! And I wish you all the best.

Sonja.K · January 2016

Jaw bone

Hi Lisa, I had surgery that sounds similar to you. I had SCC, the tumor was under my tongue and spread to my jaw bone. They removed the tumor, half of my lower jaw, all my lower teeth but three, 146 lymph nodes (all above my collar bone), inserted a titanium jaw and I had tissue graft from my arm. I am trying the titanium jaw,with the option of the bone graft some day. I had the same possibilities as you but I am ok. No feeding tube or trach. I talk the same. My adult children laugh at how much food I can eat with only three teeth on the bottom. I had my surgery 8/11/14. There are adjustments, "the new normal ", but I am good. My best to you.

Hondo · January 2016

Hi Lisea

You sound normal to me, when going through this the first time we are all afraid just like you because we don’t know what to expect or what the outcome will be. One good thing you have going is MD Anderson, to me they are one of the best, I went to MDA in Houston TX and they amazed me with all the different treatments they do every day. The other thing I like about them they sit and talk to you and not over you, if you don’t understand something they will give it to you in laymen terms but you have to ask.

The other good thing you got going is being here with us on CSN H&N welcome to the family. Also if you are ok with it I will put you on my prayer list.

Tim

LiseA · January 2016

Hondo said:
Hi Lisea
You sound normal to me, when going through this the first time we are all afraid just like you because we don’t know what to expect or what the outcome will be. One good thing you have going is MD Anderson, to me they are one of the best, I went to MDA in Houston TX and they amazed me with all the different treatments they do every day. The other thing I like about them they sit and talk to you and not over you, if you don’t understand something they will give it to you in laymen terms but you have to ask.

The other good thing you got going is being here with us on CSN H&N welcome to the family. Also if you are ok with it I will put you on my prayer list.

Tim

Thank you, Tim. Prayers are

Thank you, Tim. Prayers are always welcome. It's really great to hear that MDA is a good place to be. It's very overwhelming first. So many doctors on the team, so much information to digest, and the size of the hospital!

I worry about the pain after surgery, and the length of surgery. Most surgeries I have had were under 3-4 hours including recovery.

LiseA · January 2016

LiseA said:
Thank you, Tim. Prayers are
Thank you, Tim. Prayers are always welcome. It's really great to hear that MDA is a good place to be. It's very overwhelming first. So many doctors on the team, so much information to digest, and the size of the hospital!

I worry about the pain after surgery, and the length of surgery. Most surgeries I have had were under 3-4 hours including recovery.

Sorry everyone. Posted before

Sorry everyone. Posted before I was done. Smart phones can be a pain.

All the responses have been very helpful. I am glad that I found this group.

At the moment, i am recovering from pneumonia, so not sure if we will stick to the February 8th or the following week for surgery. I wad actually glad to have some time to take in everything before the surgery. It's terrifying because of where the cancer is ...the mouth! Yes, other cancers are still scary, but this one you can't hide.

my mother died from Breast cancer. My cousin from lung cancer. My sister from ovarian cancer. They could hide their surgery site.

I the imagine th with time, I will adjust. Thank you for understanding how I feel now. My friends and family can empathize but they can't really get it, like I couldn't when my family had cancer. How does one speak without a voicebox?

You all sound like such strong, resilient people. Gives me hope.

Kent Cass · January 2016

LiseA said:
Thank you, Tim. Prayers are
Thank you, Tim. Prayers are always welcome. It's really great to hear that MDA is a good place to be. It's very overwhelming first. So many doctors on the team, so much information to digest, and the size of the hospital!

I worry about the pain after surgery, and the length of surgery. Most surgeries I have had were under 3-4 hours including recovery.

LiseA

Not sure why you would be concerned with how long the Op will be, due to the fact that it doesn't matter. My cousin's Op in Peoria took some 8 hours, and I've heard some last as long as 15 hours. So what? The results of the Op- that is the only thing that matters. The man I know who had the 15-hour Op at the U of Iowa is C-free, and going on 7+ years, now.

As for post-Op pain, odds are you have no need for concern on that, either. Meds will have you "out there." After my Op#22, back when I was a teen, they kept me sedated for some 24 hours, so all I did was sleep. Depends on how coherent they want you to be. This is a major Op. Best advice is to just let yourself go with the flow by accepting it as "the solution"- this is gonna take care of everything in regards to C, and that makes it a really good thing. Worry about anything is not going to help you in the least- worrying is, really, something that is contrary to the Positive mindset, and can work against you to the negative. Just let yourself go, LiseA. You're not the first to go thru an Op like this, and there are many people in this world a lot worse off than you will be after the Op, which is something you can think about to help with the anxiety. And, again, if you are having problems with this, upstairs, with such as anxiety- let your Drs know, and they will help.

And, know that all of our Prayers are with you. They really are.

kcass

LiseA · January 2016

Kent Cass said:
LiseA
Not sure why you would be concerned with how long the Op will be, due to the fact that it doesn't matter. My cousin's Op in Peoria took some 8 hours, and I've heard some last as long as 15 hours. So what? The results of the Op- that is the only thing that matters. The man I know who had the 15-hour Op at the U of Iowa is C-free, and going on 7+ years, now.

As for post-Op pain, odds are you have no need for concern on that, either. Meds will have you "out there." After my Op#22, back when I was a teen, they kept me sedated for some 24 hours, so all I did was sleep. Depends on how coherent they want you to be. This is a major Op. Best advice is to just let yourself go with the flow by accepting it as "the solution"- this is gonna take care of everything in regards to C, and that makes it a really good thing. Worry about anything is not going to help you in the least- worrying is, really, something that is contrary to the Positive mindset, and can work against you to the negative. Just let yourself go, LiseA. You're not the first to go thru an Op like this, and there are many people in this world a lot worse off than you will be after the Op, which is something you can think about to help with the anxiety. And, again, if you are having problems with this, upstairs, with such as anxiety- let your Drs know, and they will help.

And, know that all of our Prayers are with you. They really are.

kcass

The reason I'm so concerned

The reason I'm so concerned about the length of surgery is because of auto immune diseases. I know what you're saying, and makes sense. I'm on my second bout of pneumonia in six months, and tend to take much longer to recuperate from surgery, or even a colonoscopy. I just wonder if my body can handle This.

The doctors know my concern about recovery. All they said was that with so many auto immune problems, seems that my immune system is not in the best shape.

Thanks anyway. I'll try to get to a calm

place.

LiseA · January 2016

LiseA said:
The reason I'm so concerned
The reason I'm so concerned about the length of surgery is because of auto immune diseases. I know what you're saying, and makes sense. I'm on my second bout of pneumonia in six months, and tend to take much longer to recuperate from surgery, or even a colonoscopy. I just wonder if my body can handle This.

The doctors know my concern about recovery. All they said was that with so many auto immune problems, seems that my immune system is not in the best shape.

Thanks anyway. I'll try to get to a calm

place.

I have my moments, but there

I have my moments, but there are times when I visualize coming out if this "still standing"

as in Elton John's song. Remember, this is my first of everything. Now I feel to sing Like a Virgin, lol

wmc · January 2016

LiseA said:
Sorry everyone. Posted before
Sorry everyone. Posted before I was done. Smart phones can be a pain.

All the responses have been very helpful. I am glad that I found this group.

At the moment, i am recovering from pneumonia, so not sure if we will stick to the February 8th or the following week for surgery. I wad actually glad to have some time to take in everything before the surgery. It's terrifying because of where the cancer is ...the mouth! Yes, other cancers are still scary, but this one you can't hide.

my mother died from Breast cancer. My cousin from lung cancer. My sister from ovarian cancer. They could hide their surgery site.

I the imagine th with time, I will adjust. Thank you for understanding how I feel now. My friends and family can empathize but they can't really get it, like I couldn't when my family had cancer. How does one speak without a voicebox?

You all sound like such strong, resilient people. Gives me hope.

How does one speak without a voice box?

That is a good question. There is several ways, we can use an EL Electric Larynx which is what some put to the neck and push the button and it vibrats. Gives a robot sound or Darth Vader like. Some do ES speach, which is they swallow some air and when they bring it back it vibrats in the neck and they can speak. That is hard to learn. Like talking when you burp but is sounds very close to your voice just not very loud. The 3rd is what I do. I have a TEP Prosthests [TracheoEsophageal voice prosthesis] It is a small tube 7.5mm round [that is the largest] and where they seperated my throat and airway they punch a hole and place this in it. It has a oneway valve so air can go through it to my throat and the walls will vibrate. All my air goes in my neck and when I exhale and block the hole in my neck the air is forced into my throat and I can speak. It is my voice, and sounds like I am a little hoarse. Not everyone can have this as radiation can make the muscle to hard and it won't work. Now that that 7.5mm hole has an opening that is 6mm hole the air goes through and the throat will vibrate so you can speak. I will include a video I made for Stanford Medical. Just to let you know, the hole in my neck is covered with a filter so all my air is filtered and it helps the air stay warm and most. It also looks better covered.

https://i.ytimg.com/vi_webp/sL-ZuyhSMEM/mqdefault.webp

When they seperate my airway you no longer smell as air does not really go through the nose. The nose still works if you get air through it like a breeze, but for most of the time the nose just holds up my glasses. I do have to be very careful as I can't smell a gas leak or chlorine if spilled and it can over power you and you can dammage your lungs or collapse. It is just the New me. Also I can't talk if both hands have something in them.

Bill

LiseA · January 2016

First one began at age 15,

First one began at age 15, ulcerative colitis.

Then 35, Hashimoto's.

Celiac disease about 12 years ago.

Mastocytisis diagnosed 2 years ago. Food allergies, environmental allergies, chemical and food intolerances came on in 2011 before I knew I had Masto.

The thought of chemo or radiation scares the hell out of me because I react to so many things. Yes I understand that cancer could kill me, but if the treatment turns out to be worse for me, I have a big decision to make. And yes, MDA have prepared me the worse, but it could still be a great outcome in the sense that I won't need these treatments.

I contunue to pray and hope.

rlvalls · January 2016

Head/Neck base of tounge as primary- Squamous cell carcinoma

I am 7 weeks out of my last radiation treatment(35 total). Originaly diagnosed first week in August after routune physical. My doctor noticed lump(marble size) on left side of neck. Biopsy conducted on lymph node concluded squamous cell carcinoma base of tounge. Wow!!!! we, as wife and family in total shock. At first the primary was not found in scan, it was found only after ENT did surgery one week later and took out 7 lymph nodes and one tonsil (neck disection performed) .Cancer was not topical. I have never smoked or have family history of cancer. I'm 57 YOA and what I thought was in good health??? I must applaude my doctors for putting me on a fast track for surgery and treatment. ClearView Cancer Institute in Huntsville, Alabama were just great in how they treateted me and my care was top notch. I was also advised to get second opinion on my treatment after surgery which I did. We traveled to Vanderbilt and recieved some really good advice which is what Dr's here wanted to do. Treat only 1/2 of my neck was the plan and we went with it. Overtreatment has been a big issue in the past and Doctors are trying to minimize it!

It took me about one month to recover from surgery as it took time for the massive scar to heal. I was advised to proceed with radiation only with NO chemo. This was because my primary cancer was very micro in size. Believe in your doctors in what they say......It all came true! I was told to stack on weight before treatments and at the begining. I also opted out of getting feeding tube. I decided to tough it out. After 3 weeks of rad treatment my taste went south, a terrible metalic taste that hit me suddenly.Prepare for it as it will happen along with dry mouth. My new diet began with protien shakes, cream of wheat. I also tried Ensure and Boost which I could not tolerate.....I was referred to try Carnation Breakfast Protien Drink which was a lot better than the previous. It did and still does tast better. My radiation went well, I drove myself every day and felt tired the last two weeks. Also, I did come down with a pretty severe burn that eventually healed with cream doctor gave me. Suprisingly I never came down with a sore throat or trouble swallowing. I have one more scan to do in a month and hopefully all will be well. The side effects are awful! everyone is different in their recovery. I began to sense some taste last week as I tried some grilled fish and could taste it.....for now it goes and comes! I lost 34 pounds and feel great otherwise. I have been working out to gain back some strength. Doctors say I should be fine and make full recovery. Never give up and do as you are told....radiation is not fun! !! The worst part for me is of course not being able to eat like a normal person and the dry mouth. I always have a water bottle with me. It is just part of the process!

IAmStrong · January 2016

rlvalls said:
Head/Neck base of tounge as primary- Squamous cell carcinoma
I am 7 weeks out of my last radiation treatment(35 total). Originaly diagnosed first week in August after routune physical. My doctor noticed lump(marble size) on left side of neck. Biopsy conducted on lymph node concluded squamous cell carcinoma base of tounge. Wow!!!! we, as wife and family in total shock. At first the primary was not found in scan, it was found only after ENT did surgery one week later and took out 7 lymph nodes and one tonsil (neck disection performed) .Cancer was not topical. I have never smoked or have family history of cancer. I'm 57 YOA and what I thought was in good health??? I must applaude my doctors for putting me on a fast track for surgery and treatment. ClearView Cancer Institute in Huntsville, Alabama were just great in how they treateted me and my care was top notch. I was also advised to get second opinion on my treatment after surgery which I did. We traveled to Vanderbilt and recieved some really good advice which is what Dr's here wanted to do. Treat only 1/2 of my neck was the plan and we went with it. Overtreatment has been a big issue in the past and Doctors are trying to minimize it!

It took me about one month to recover from surgery as it took time for the massive scar to heal. I was advised to proceed with radiation only with NO chemo. This was because my primary cancer was very micro in size. Believe in your doctors in what they say......It all came true! I was told to stack on weight before treatments and at the begining. I also opted out of getting feeding tube. I decided to tough it out. After 3 weeks of rad treatment my taste went south, a terrible metalic taste that hit me suddenly.Prepare for it as it will happen along with dry mouth. My new diet began with protien shakes, cream of wheat. I also tried Ensure and Boost which I could not tolerate.....I was referred to try Carnation Breakfast Protien Drink which was a lot better than the previous. It did and still does tast better. My radiation went well, I drove myself every day and felt tired the last two weeks. Also, I did come down with a pretty severe burn that eventually healed with cream doctor gave me. Suprisingly I never came down with a sore throat or trouble swallowing. I have one more scan to do in a month and hopefully all will be well. The side effects are awful! everyone is different in their recovery. I began to sense some taste last week as I tried some grilled fish and could taste it.....for now it goes and comes! I lost 34 pounds and feel great otherwise. I have been working out to gain back some strength. Doctors say I should be fine and make full recovery. Never give up and do as you are told....radiation is not fun! !! The worst part for me is of course not being able to eat like a normal person and the dry mouth. I always have a water bottle with me. It is just part of the process!

Healing Thoughts:)

As already shared, we ALL went through the same over the top concerns and feelings. Before my surgery, I went in for a massage. I used essential oils to aid in calming effect and healing. Everyone loved coming in my room...and would pop in just because of hearing of how good it smelled...lol. A side effect I had no thoughts of. I used peppermint and eucalyptus oil on cotton balls. You can look up and try anything that makes YOU feel calmer and in a better place. Along with prayer... MD Anderson it top notch medically. I believe in alternative medicine to complement the treatment, as the Med Center I went to does offer it as well. You are in my Prayers!

LiseA · January 2016

IAmStrong said:
Healing Thoughts:)
As already shared, we ALL went through the same over the top concerns and feelings. Before my surgery, I went in for a massage. I used essential oils to aid in calming effect and healing. Everyone loved coming in my room...and would pop in just because of hearing of how good it smelled...lol. A side effect I had no thoughts of. I used peppermint and eucalyptus oil on cotton balls. You can look up and try anything that makes YOU feel calmer and in a better place. Along with prayer... MD Anderson it top notch medically. I believe in alternative medicine to complement the treatment, as the Med Center I went to does offer it as well. You are in my Prayers!

Thank you for the

Thank you for the prayers.

I found out today Cancer Treatment Center has a support group for all types of cancer, and they're very close to where I live, so I'm going to the meeting on Monday. I'm getting over the pneumonia, and hoping surgery will take place in a week or two. My local doctor is adamant that I wait to be clear first. I had pneumonia in July and it took six weeks of antibiotics to clear up. This time we caught it early. I am pleased that so many people respect MDA. I liked the approach of Cancer Treatment center with regard to a holistic approach...conventional and integrative medicine. MDA has integrative medicine and I plan to use massage and accupuncture as well.

I am big on all natural and stay away from processed foods, additives and preservatives. I too love essential oils. They are so soothing. Hadn't thought to take something pleasant smelling to the hospital! Thanks for that tip.

MrsBD · February 2016

LiseA said:
Thank you for the
Thank you for the prayers.

I found out today Cancer Treatment Center has a support group for all types of cancer, and they're very close to where I live, so I'm going to the meeting on Monday. I'm getting over the pneumonia, and hoping surgery will take place in a week or two. My local doctor is adamant that I wait to be clear first. I had pneumonia in July and it took six weeks of antibiotics to clear up. This time we caught it early. I am pleased that so many people respect MDA. I liked the approach of Cancer Treatment center with regard to a holistic approach...conventional and integrative medicine. MDA has integrative medicine and I plan to use massage and accupuncture as well.

I am big on all natural and stay away from processed foods, additives and preservatives. I too love essential oils. They are so soothing. Hadn't thought to take something pleasant smelling to the hospital! Thanks for that tip.

Acupuncture

I'm just catching up with the posts tonight and wanted to let you know you'll be in my prayers too. I had some autoimmune issues before being diagnosed and my brother has mastocytosis, so I understand your concerns. You are going to one of the best centers in the country, especially for someone with complex medical issues. As a non-smoker, non-drinker, non-HPV carrier, base of tongue cancer was never on my radar either. It was Stage 4 by the time the doctors figured out what was wrong. The treatment consisted of radiation and Erbitux, but no surgery. I also had acupuncture for 18 weeks. The acupuncturist used a protocol developed by MD Anderson. I credit that with preventing damage to my taste buds, getting all my hair back in the radiated areas and having minimal issues with dry mouth. The treatment was rough, but today I'm back to normal. The people on this site will be here for you with advice, support and prayers whenever you need it. You will get through this!

LiseA · February 2016

Thank you so much for your

Thank you so much for your post.

I'm recovering daily from my bout of pneumonia, but now dealing with sinus headaches. I was supposed to have surgery on the 8th, but my PCP wants me to be fully recovered before surgery, and I'm in agreement.

So...they told me either the 15th or 22nd. Turns out that plastics is booked up, and the only day and soonest he's available is the 29th.

Long time to wait, but at least I can get better and fortify myself for what's ahead. Now the scary part is me hoping these cells don't spread! Hope a month won't make much of a difference in the grand scheme Of things.

Kent Cass · April 2016

Kent Cass · April 2016

LiseA said:
The reason I'm so concerned
The reason I'm so concerned about the length of surgery is because of auto immune diseases. I know what you're saying, and makes sense. I'm on my second bout of pneumonia in six months, and tend to take much longer to recuperate from surgery, or even a colonoscopy. I just wonder if my body can handle This.

The doctors know my concern about recovery. All they said was that with so many auto immune problems, seems that my immune system is not in the best shape.

Thanks anyway. I'll try to get to a calm

place.

Newly diagnosed, surgery soon

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