Newly diagnosed, surgery soon

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

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.  

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. 

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  

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!     

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 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.

 

 

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!