Robotic surgery at Wilmot

phrannie51 said:

Well first....

let me welcome you to the best forum on the internet for information on Head and Neck cancer.  Many, MANY people here have had tonsil cancer and are here to help you through treatment.

You're about to enter into a whirl-wind of activity.....so my first advice is to get a calendar that you can put all you appointments on, or it'll be hard to keep track.  Also, start eating anything and everything you want....going into this with extra pounds is a big benefit! 

Read the Super Thread.....it will help you gather information on what is to come:

http://csn.cancer.org/node/261072 

You're going to be ok.....it's a rough gravel road, but you'll see from being here and reading other people's experiences, that many have gone before you and come out the other side and hit pavement again, and are living life to the fullest. 

p

 

Hi, recently had tonsil out and undergoing treatment. Let me know if I can help. Regards, G.

hi, just want to say welcome. you've come to a great place for info, encouragement and advice from people who have traveled the road you are about to go down.  we will be here to help you along your journey.  will you be having any tx other than surgery?  praying for surgery to go well and that that is the only tx you will need.  will be thinking of you Thursday.  please let us know how it went when you are able.

God bless you,

dj

But it was on BOT not tonsil.  I was T1N1M0.  Also had during the same operation a left neck dissection with 22 lymph nodes removed (one was positive).  Do not really know if it will be comparable to the robot surgery you will have, but it took me about 2 weeks to feel decent and I lost 20 lbs.  Was able to swallow and kept hydrated and used a swig of  magic mouthwash so I could swallow and drink and take medication for pain.  Had no appetite as it affected my taste buds.  My neck dissection surgery took much longer to heal from.  

Good luck,

PJ

Sounds like the treatment is going very well. Rads are tough but a cancer killer. If the docs suggest the treatment do give it serious consideration. Start reading up on it and you'll be ready to beat down any side effects.

Don

northern.ny.1268 said:

Update 6/13/2014

This is Tom's wife, Deb.  I can type way faster than him so I will give the update, but this site is for him for information and support from you all.  He had his surgery  on 5/28/14.  It took a lot longer than I was told it would, but his family was there with me to ease the stress.  When I finally saw him in recovery he looked WONDERFUL!! (As could be expected)  He had an apron incision and he had a feeding tube and a drainage tube.  His face looked unaffected!!  I have great difficulty with any kind of wounds, so I was so thankful that he looked great! 

He had a restless night, but my sister had arrived to spend the night with me, so we were able to help him thru it.  The next day was good, but the third day he had a difficult time.  By Sunday he was ready to be released.  He had speech therapy and nutrition consultation and training.

So, the tumor was 2.8 cm.  The margins tested were all clear except 1.  It is confusing but as of yesterday's follow-up he ALMOST didn't have to have even radiation and he definitely didn't need chemo.  The one questionable margin was .3cm - so radiation is an insurance policy.  They removed a huge amount of nodes and only 1 tested positive. 

We have chosen to have all treatments done at Wilmot for a couple reasons.  One is that everything is in the same place and we feel so secure there.  The second is that they are fantastic!  He has had his follow up appointment with  Dr. Van der Sloot and doesn't see him again until August.  He will have Dr. Singh for radiation and he has had his dental clearance.  He will have a peg tube inserted on 7/1 and begin radiation on 7/7/14.  His family lives near there and we can come home on weekends as long as he feels up to it.

I can't even believe this much of this horrible experience is behind us!  God is good and we are thankful for all the prayers and support.

 

 

deb, i'm so glad the surgery is behind tom and he can now move on to the next stage of tx.  for me, personally, the surgery was the worst for me.  i had 35 rads and even tho my neck was badly burned, the laryngectomy and neck dissection was the worst for me.  I'm so glad Tom is doing ok.  i also had a peg tube for months.  they aren't a big deal.  just a hassel....lol.  its wonderful that you are near family and they will be able to help you and tom thru this.  7/7 will be here and past before you know it.  please keep us posted on tom's progress and know we will be praying for him.

God bless you and tom,

dj

patricke said:

PEG

Hey Tom & Deb,

Juggling the treatment scheduling, travel, and dealing with the insurance hurdles is all very stressful and overwhelming, I remember it all too well.  Sending patients home with a PEG tube, but without proper education about the care and use of it happened to us too.  We had a home healthcare nurse who started coming to our home a couple of days out of the hospital, and she was our life saver.  If you do not have a home healthcare nurse set up, you might want to consider getting one to help you, and the service should be covered by your insurance.  In regard to nutrition,  Ensure and Boost are inadequate to provide complete balanced nutrition; I recommend that you look into getting Fiber Source HN, Jevity, or another similar product that will provide complete nutrition in two cartons per meal.  Keeping everything together is very challenging with some days being better than others, but taking it one day at a time will get you thru the treatment tunnel; keep your eye on the light at the exit.  Prayers being sent your way.  Keep it mov'in forward!

PATRICK

I'm sure Tom feels much more comfortable in his own bed each night. An hour each way is a long drive, I was very fortunate to only be a block away from a satellite location for Barnes/Siteman radiation and chemo tx. Even though Tom is on a PEG, it is very important that he continue to swallow daily. If you do not swallow you risk losing the ability to do so. It got pretty hard midway through but I always managed sips of room temp water or a smoothie. Do ask about home nursing so you have all the right tools to make this journey as easy as possible.

God bless!

Candi 

northern.ny.1268 said:

Radiation Treatment is finished!

Tom has completed 33 treatments.  He finished on his birthday, Sept. 4.  Having a very VERY hard time getting him to cooperate on using Magic Mouthwash, Salt & baking soda in water, and swallowing.  Threatened him with a public health nurse (I actually am calling on Monday). He is in pain, with very little relief from meds.  His Radiation Dr. upped the dose of nausea meds so the PEG is working good.  He is taking 4 cans per day.  Dr. warned him that he had a thick layer of dead tissue in the back of his throat which needs to go.  I have already been accused of trying to control him and of nagging.  Of course that was from someone 200 miles away who hasn't even called him ONE time since July 5 when we left there.  He isn't doing his mouth exercises either.  HELP - I really have not 'nagged' at all - until today when I told him I was getting a nurse.  Which, really, seems like a much better idea that having him angry at me.  Now lets hope his insurance will allow that. HELP HELP HELP

 

It gets better from here. Thankful tx is behind you. Some say they continue to cook from rads a few weeks but I saw continual slow improvement. By week 5 I had turned the corner and by week 6 was loaded with energy. Swallowing is a must!!!! They say if you rely soley on feeding tube you can lose the ability to swallow and that is exactly what happened to a friend of mine. He found it easier not to try and now is struggling. Maybe smoothies with straw will work. I tried the salt and baking soda and you probably could have heard me scream miles away. Give things a try but if they aren't doable try something else. I found allot of relief from MMW. I used it as a crutch for about 2 years. I was doing 6-8 cans of Ensure a day, four doesn't sound like enough. Check the calories Tom is taking in. Hydration and nutrition are the keys to recovery. If the pain meds aren't working ask for somthing different. Should not be in pain. Yes, emotions run high and the spouse/caregiver can get the brunt. It will seem hurtful but try to understand it is not intentional. The anger is with the situation, not with you. It is important to schedule some "Deb time". Oh yes, Tom, I regret not knowing about mouth exercises. Rads can cause the inability to open your mouth very wide,meaning never eating another sandwich without a knife or fork or worse. I encourage you to do everything you can to avoid that. Rubberband some tongue depressors together and put between teeth, just to point of feeling them but not being uncomfortable. Just stick them in there several times a day while watching tv or driving. Hindsight is 20/20 and this was one of my regrets.

Things will ge better!

God bless,

Candi