Hello all.

Much has happened since I last posted. CT showed Stage two and "something" on my left vocal cord. Was scheduled to have all of my teeth pulled in prep for radiation until another doctor determined that surgery would be the best first action to take.

I have Radical Tonsillectomy & Neck Dissection scheduled for Oct 19th, will determine if my vocal cords are affected at the same time. I have no idea how many nodes will be removed as they will freeze biopsy as they go along. Won't know if radiation is to follow until after the surgery.

I'm told that it hasn't gotten too big and that surgery should remove everything. Even prior to this happening, I know that's not something to bank on. Having only had a CT, I'm not comfortable with the initial diagnosis as my throat really hurts much lower than the tonsil area. I'm not a doctor so I guess I'll have to wait and see what the biopsy's show as they get into it. It would appear the best approach would be to removed everything possible during the surgery and then follow up with a PET, schedule radiation to make sure everything was killed off. Again...I'm not a doctor.

I'm having this done at Stroger Hospital in Chicago which is a county hospital but a Level One Trauma Center with excellent resources. Which might be why a PET scan was not ordered, I don't know. I've read that PET scans are the best test for Neck and Head cancers. She told me they can take out the right tonsil at the same time, it wasn't necessary and would just cause more discomfort....is this a wise choice or should I just have it removed at the same time? Would make sense to me to just take that one out as well...it's not needed and just another place for something to appear. Am I wrong in thinking this? I'm going to be in pain anyway...so why not just have it done?

My biggest concern is that the ENT doing the surgery is a senior resident...I'm assuming under the guidance of an attending surgeon. Four years of medical college for the MD, and she's in her last year as a resident. I really wasn't prepared to hear the recommendation to have surgery, so as the meeting went, I didn't even think to ask how many of these she has done. The more I read about the procedure, the more I get worried that nerves and muscles will be damaged beyond recuperation or repair. I have to keep reminding myself that if she didn't know what she was doing, she wouldn't have gotten this far. There is a higher percentage of mortality with this surgery than many others.

On a lighter note, my affairs are all in order, so I guess it's better than having a heart attack, leaving my family to sort things out.

Again, I will find out more in the next week or so. Thanks for all the kind words and concern given me, I don't know any of you but you have helped me cope with this problem like no one else could possibly do.

Please feel free to private message me with any suggestions or just to converse. I don't yet feel as though I have anything to contribute, that's surely about to change. Sorry for rambling!

Thank You Sincerely.

Don

This is cancer you're dealing with - please if at all possible get to a good cancer center. If not at least see the top surgical oncologist at your hospital! The resident may be a big pile of awesomeness, and that's great - she can assist but really as I said - this is cancer not a regular tonsillectomy - have dealt with by someone who is experienced in head and neck cancer and a surgical oncologist. This is the best way to get an optimal outcome! Remove both tonsils if you can - if it was a kidney I would say think twice but you can live without it its not a major organ - get it out. It may never show up there but why give it a chance. PETs are good but they can pick up inflammation, and scar tissues, etc and post op? You may end up with false positives. My cancer hospital doesn't use them. The use CTs and MRIs. post op protocol here is ct prior to radiation. Usually at least a month after surgery to give everything a chance to calm down. I prefer the idea of gettin as much cancer as you can surgically then radiation and chemo after to clean up any left overs. It's not easy but it's good with a stage 2. Good luck! Please remember this is your life you're dealing with. If you have a child who is sick you would want the absute best care! Ask that for yourself! The neck dissection is not too bad but yes they need to be very good for all of that. Take care and good luck! I will sy a prayer for you on the 19th even I your not religious it can't hurt

Hello all,

I'm so sorry for not responding after having so many give me guidance and support. My surgery was Oct 19th, the scheduled procedure was for a Radical Tonsillectomy and Left Neck Dissection. Prior to the surgery, I informed the ENT that I thought the cancer had spread to my soft palate in the two weeks we had seen each other. I could physically feel the difference in the back of my soft palate. Upon waking up in a room, morphine pump in hand, I was told that I was indeed right and a partial soft palate resection was required. I can't say my post op recovery was as pleasant as it should have been, the medication directions after stopping the morphine was for Tylenol 3 as required for pain. I'm telling you from someone that has endured burns and breaks throughout life, Tylenol 3 is like taking an aspirin for a slight headache. The doctor had ordered 10mg Norco as needed...never reached the floor.

Getting home, was given a 5mg script for Norco which was filled free of charge at the hospital, and a script for 10mg Norco that I had to fill outside the hospital...they didn't fill 10mg due to the drug use at inner city hospitals.

Again, I'm not a wimp when it comes to pain but I was taking 15mg Norco every 4 hrs on the clock or I was woke up and in horrible pain. Two weeks out I started cutting back on the pain medication until it was actually as needed.

First I was told that I was to have Radiation and had scheduled all my teeth to be removed, another ENT said that I was a good case for surgery, as radiation could only be done on a specific area once. I agreed to the surgery but now wish I hadn't.

I feel bad even sharing this as I know so many of you had to endure so much more. The soft palate resection left me without the ability to pronounce words as the uvula and most of the palate was removed, I shoot thin liquids up and out my nose and aspirate small foods like ground beef every meal. I have stabbing pain in my left ear daily that doesn't respond to OTC medication, my left shoulder aches all the time in addition to weakness and the inability to pull back or rotate my shoulder.

I'm sorry for complaining as I know I am fortunate to have caught this a early as I have.

Was told that all the margins through freeze biopsy were clear and the neck dissection levels 2 to 4 showed no spread.

Still waiting to hear if they recommend radiation or chemo as a follow up. This since two weeks ago as the oncologist was out of town. I've called the ENT with concern as I feel the same texture at the edge of the soft palate resection as I felt prior to the surgery now 5 weeks out. My next appointment is Dec 1st and really concerned that they didn't remove all of it.

Were I able to do it all again, I would endure the radiation and then have the surgery as clean-up. I'm thinking now I was a great opportunity to provide practice to a resident ENT.

It's strange how just recently, I see commercial after commercial from local hospitals that specialize in Cancer treatment. I guess if you go through a drive through, don't expect prime rib on your sandwich. Drive through was all I could afford though. It is what it is I guess.

I'll let you know what happens next, if nothing more than to drive home the honest truth to go to the very best hospital or center that focuses on cancer.

Thanks for letting me ramble.

Don

Hi Don. Glad to see you came back to give an update. You may be experiencing the effects of healing and feeling the scar tissue forming. If your pain meds still arent strong enough, call your doctor.

Have you attempted to get a 2nd opinion? If not here is a list of cancer centers to try to make an appointment with. It cant hurt to get a team approach to discuss your case and see whats the next best step. You might want to see a speech pathologist to help you with speaking and eating.

Cancer Centers

Best wishes with your continued recovery.

Hi don, I agree don't wait for your appointment see if you can get the area looked at now. To me the time between biopsy to spread tells me it's fairly aggressive, despite how you feel surgery sounds like the best option. Get rid of all of it, first then clear up anything microscopic. It beats the maybe of - did they get it all? And the opportunity for it to spread further plus operating on radiated skin is hard and it doesnt heal as quickly or as well in some instances. (cant remember if you were HPV + - if so there is a good chance you may have not needed the surgery as HPV+ cancer responds well to rads and chemo... - if not surgery was likely a good choice). Once your palate heals things will be better. Just keep it clean there are a few here who have had similar surgeries they can help give advice. Re your shoulder and arm - it takes a while - do some physio with it now it will help return function in the long run. Good luck.

Hi Don, I know we chatted b4 your surgery and you were looking into getting to the VA hospital. Did you get anywhere with that ? If you can get in there you can get a second opinion. I know that many of the docs from Loyola are also on staff at the VA (next door). Good Luck.

It's difficult for me to write here now. Prior to having the surgery, I felt as if once it was over, I would feel better and live life until the next exam. Obviously, that was a naive viewpoint. I don't want anyone to feel the way I do, and also at the same time want to encourage those that have procedures to understand what to expect. Treatment options as well as recovery levels will vary, every procedure is different relative to the individual. The option I've had for treatment was not an option. I can now go to the VA but I'm post op with Stroger Hospital. I have a appointment this Thursday with my ENT, last week she called me to say that the cancer group didn't believe I should go through radiation or chemo just yet. I would be seen every month for a year then 3 months and 6 months.

I find it difficult at this point to believe the way I feel is just a coincidence. I am exhausted after doing the most simply things. I still can't open my mouth more than 3/4" to 1", my neck hurts, burns and feels like the muscle is shortened, my soft palate resection, appears to be spreading. My shoulder is in pain 24/7, though I've been told that the nerve was not affected...I can tell you that it was. I don't like pain meds but my shoulder pain makes that necessary. I feel like a drug addict asking the doctor to fill the Norco script. I could easily make connections for OC's or Dilaudid but I only want what I need to get by. It that wrong?

I'm so sorry for sharing this. Thank you for all the support given me, At some point I hope to be helpful as well.

Don

Yikes! Wow - maybe some of the fatigue is meds related? Your body has been through a lot. However the shoulder thing etc.. The only way to get past the shoulder arm neck thing is physio - seriously - frankly I didn't feel neck or arm pain perse - mostly numbness and stiffness - but physio helps a lot... It loosens up the scar tissue - helps return blood flow to the area - and range of motion and function. Also acupuncture breaks up the scarring as well. I'm almost 9 mos out of surgery 7 mos out of radiation (the 4th will be that mark for me) and I have full range of motion 80-90 % strength in my arm/shoulder... No pain, only some numbness and tightness which lessens daily! Push through it my friend and take a pain med if you need it. I'm like you - not a fan of pills, but if I needed a med I took it.

Also re the rads and chemo... If you are HPV + (cancer) you should probably have the chemo and rads as that is the primary treatment - plus it kills anything microscopic possibly left behind. I would definitely get a second opinion. The palate - I think it's normal for the tissue to recede - but I'm sure someone here will pipe up as there are a few members who've been through that surgery!!! Good luck, and hugs - you sound like you need one - heal well.

Don,

I'm sorry you are having a rough time of it my friend, I can relate as recovery was the hardest part of the experience for me.

Pain is the enemy in healing, it puts the body in distress and actually slows the healing process, especially surgical wounds that tend to be deeper tissue. Being in pain also affects us mentally and emotionally which not only slows the healing process but depression actually amplifies pain. The only pain that we "push" through is the kind of pain that we experience when we're exercising, not post surgical pain and neuropathy...we need to change the way you feel about your pain meds and in my opinion not only go to something stronger then just hydrocodone and tylenol, but if the neuropathy (nerve pain) is bad get on an anti-seizure med like Gabapentin (Neurontin) as opiates don't work well with nerve pain, anti-depressants help nerve pain too. You're NOT an addict if you need them.

Now I do agree with Cheryl when she suggests accupuncture and physical therapy(physical therapy only after your Dr says you're ready for it) as they will also help with the pain & fatigue. CRF (cancer related fatigue) is a real condition that many of us face after treatment and it's caused by a myriad of things. Pain, pain meds, post tramatic stress, malnutrition (common after surgery and while on medication due to the lack of desire to eat), anti-depressants, depression, and just healing. Your body is in a hypermetabolic state and burning through calories like crazy due to the healing process so you will experience fatigue, here are some things that can help.

Yoga, accupuncture, exercise, eating right, vitamins & supplements (B6, B12, Niacin(B3), Ginseng, Kola Nut(awesome!), CoQ10 to name but a few) all will help battle the fatigue. Get your thyroid, testosterone and adrenals checked as well as all are fatigue culprits and common post treatment.

I suffered from crippling fatigue post treatment so I can relate, it is treatable but this soon after surgery you should be focused on handling the post op pain and healing, fatigue secondary. Definitely bring your issues to your Dr's attention and get solutions...DON'T be afraid to up your pain meds.

Keep your chin up Don, you can get through this thing buddy. For many of us the hardest part to deal with was the aftermath post treatment which is why the support on these forums is crucial, we are here for you my friend.


Eric

Hi Don, I am sorry you are having a tough time. I can only imagine how you feel. Take what you need to keep the pain under control. It is not wrong...actually, it is smart. You need to manage the pain. Your physical comfort and your mental and emotional health depend on it.

You know...you are already helping. Your candid and unvarnished account about how you feel is informative and honest. It's what many people look for when they are starting out on this journey.

Keep healing.

Sandy