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surgery is behind me and I'm back home

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Hi, everyone!  Thanks for all your information and advice after I was first diagnosed.  Last Friday I received trans-oral robotic surgery at the Mayo Clinic.  They removed lymph nodes on both sides of my neck, did biopsies of the tongue, tonsils and adenoids, and removed my right tonsil and part of my left all for the purpose of finding for the primary site of the cancer by testing the tissue that was removed. My squamous cell cancer had showed up in my lymph nodes through a PET scan and needle biopsy but they could not find the original source, which is why they recommended surgery.  The first night after surgery was awful. I did not sleep at all because of painful swallowing and a very dry mouth.  Things got better after that and I was discharged Monday afternoon after 3 nights in the hospital.

The news immediately after the surgery was good and bad.  The good news is the surgery went as planned and there were no complications and the lymph nodes were encapsulated so that the cancer had not spread to surrounding tissues.  The bad news is none of the initial pathology reports obtained during the surgery found the primary site of the cancer.  Fortunately, after further pathology work over the weekend on the biopsy samples, the pathologist reported yesterday that they had found a small amount of cancer in the back part of my tongue.  This is really great news because they can tailor the radiology treatments better because of this information and, therefore, the long-term complications are likely to be less severe and my recovery time a little shorter.

Lessons learned for others who may be getting oral surgery and tonsils removed:

1. Ask for a misting mask to dampen the throat.  I started using one in the middle of the first night and it diminished the discomfort a bit.  It was still awful, but you will get through it and feel better, so you just have to endure the hard part at first.

2. Get up and start walking as soon as you can after surgery.  All the doctors and nurses recommended this and said it would speed my recovery and make me feel better.  Sometimes when I just felt like sleeping or dozing, I would remember this and get up a make a lap around the hallways.  This made me more alert and I felt better than when I went longer periods of time without walking around. Someone will need to walk with you at first to make sure you don't fall.  Later you can use the IV stand for support since you will have an IV in most of the time in the hospital.

3. A feeding tube was place during my surgery (a tube down my nose into my stomach.)  Even though it was a little annoying, I highly recommend it.  This makes it possible to continue to get good nutrition at a time when it is very hard to take in food through the mouth.  Even liquids are hard to swallow.  They were also able to give me some of my pain medicines by grinding them up and giving them through the feeding tube instead of taking capsules by mouth, which would have been hard.

4. I learned that it is easier to swallow thicker liquids and soft foods than water and other thin liquids.  I learned this at the end of my second day.  I wish I had known this earlier.  I was trying to drink plenty of water and I could only take little sips and it usually took three swallows to get the sip down. I found that applesauce, yogurt, a milkshake and a frappucino from Starbucks all went down easier than water.  Tasted better too!

My next steps are to recover for a few weeks and then get fitted for the mask and start radiation therapy.  My Mayo Clinic surgeon recommends doing radiation only, without adding chemotherapy.  I am going to go to a different cancer center for radiation because the Mayo Clinic is too far for me to drive every day for my treatments, so I will see what my oncology radiologist recommends. 

That's my update for now.  Now I feel like I can start contributing my own experience and advice to the discussion board. to pay back all of the great support and information I received from all of you when I was a newbie.

Michael

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm so glad the surgery is behind you. You've listed some great advice to others getting ready for this adventure.
I hope you continue to heal rapidly so you can get started on the next phase.
That being said, make sure you don't do too much...allow yourself time to relax and heal.
Take care,
Billie

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Thanks, Billie

debbiejeanne's picture
debbiejeanne
Posts: 2400
Joined: Jan 2010

michael, i'm glad the surgery is behind you and all went well.  now you can recover to get ready for the next phase of trmnt.  i pray that will go well for you also.

God bless,

debbiejeanne

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

one phase done, with one to go....and no chemo!!  YEAH!!  Glad this part is over for you Michael, and you are here to tell your story.  Laughing  Rest, recover.....and stay hydrated for now. 

p

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Michael,

Good job! How fast we go from needing help to giving it on this site, but every struggle for one of us is a lesson learned for another. Rest, eat and keep fluids up like Phrannie said so you get to the next and final step with you all healthy, rads will take their own toll, so you need to be ready. Stay positive and the positive news will keep coming, like finding out you don't have to radiate everything!

God bless!

Rachel

CivilMatt's picture
CivilMatt
Posts: 2933
Joined: May 2012

Michael.

 

I am glad the surgery and recovery are going well.

 

Good luck in the next step.  Also, it is not to early to be laying in supplies (check the superthread for list)

 

Best,

 

Matt

katenorwood
Posts: 1821
Joined: May 2012

Michael,

I'm so glad to hear surgery went well.  Your list of things to exspect and do is well thought out.  Thank you.  It's amazing as our fellow warriors enter this trip, more positive information is being shared.  On to the rads....before you know it you'll be done with this part too !  Katie

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Michael,

Glad to hear surgery went well. I know the discomfort you're dealing with. Just stay ahead of the pain, eat what you can, when you can and you'll be all right.  Ohh yeah... colace, MoM to keep things regular ;)

Great news about the tumors! No chemo for you! (where's the soup nazi when you ned him?)  Definitely see what your RO thinks. If you're more comfortable with Mayo, look into the Cancer Society's Hope Lodge there. It enabled Marcia and I to stay in Baltimore during the week and seek all treatments at Johns Hopkins. 

Feel better! ositive thoughts and prayers.

"T"

 

hwt's picture
hwt
Posts: 1907
Joined: Jun 2012

You sound like you are doing remarkably well. Happy to hear and so thoughtful to already think of paying the advice and comfort forward. May the remainder of your journey be an easy one. 

luvofmylif
Posts: 344
Joined: Sep 2012

Good luck on your journey. You are on the way to good health. We are about 3 months out of treatment and my husband is doing very well...knock on wood.  Life is good

Joan

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