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NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Good evening,

Hi, my husband of two years (although we are in our 50's) was just diagnosed with stage four tonsil cancer in October. He has had two surgeries in one day, one tonsil, one neck dissection and this coming week he.has his radiation planning session. The following week he begins 6.5 weeks of rad and chemos.

This is such a difficult disease. I have learned quite a bit from reading here in the last few weeks, that I wanted to introduce myself and say thank you.

~k

CivilMatt's picture
CivilMatt
Posts: 2918
Joined: May 2012

K,

Welcome to our Head & Neck of the woods. I am sorry you and your husband find yourselves here, but it is the place to be for comfortable talk about cancer, treatments and side effects. We have perspective from the caregivers and the patients (we are equal opportunists). Ask what ever you want and someone will try to help.

Best,

Matt

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

Welcome to our group however I'm sorry you find yourself needing us. Feel free to ask us anything and we will do our best to help you find answers.
You will find that this group of people are some of the kindest you will find. My first bit of advice is to ask here first before searching the Internet, that place can be quite scary with some of the info you can find.
Billie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Like the others - glad you found this group - sorry you had a reason to look.

Wow - tonsillectomy and dissection the same day? Ugh. But, if you know you need both, that'd be the best way, I'm sure. I had both, but they were over a year apart (my doc had hoped to avoid the dissection).

Keep us updated. Do well.

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

My husband and I are right behind you with what looks to be a very similar diagnosis. We get staging this week, then onto treatment (most likely surgery, rads, and chemo). It started in October, and after exploratory surgery we will know what we officially have. I am here for you. I won't have the wise advice that the others have, but emotionally I am sure we will experience similar feelings. I am motivated to beat this and determined to stay positive and I have to say that avoiding the internet and consulting this board is a big part of that.

Keep posting. Stay focused.

katenorwood
Posts: 1821
Joined: May 2012

K,
This board is full of excellant advice and a wonderful group of people. I have a different dx, ACC...which is still H/N. I'm sorry to hear of your husbands surgeries. Only the best wished for you both ! Katie

phrannie51's picture
phrannie51
Posts: 3676
Joined: Mar 2012

and join us. I'm glad that you've used this board in the last few weeks, tho...lots of good information, positive attitudes, and I'm sure you've had a few laughs (good for the soul).

Once radiation treatment begins, you'll find a great deal of support in all the folks here...just knowing you are on the bus with others really helps.

p

Mikemetz's picture
Mikemetz
Posts: 340
Joined: Nov 2011

K,

Sorry to hear about your husband's diagnosis and to see another "Posts: 1" pop up on the list. You might have noticed the number of recent posts reporting that someone got NED (No Evidence of Disease) on a scan, which is what you are working towards for your husband. It's a long, tough road to NED, but it can be done. The cure rate for HNC is high, and getting better all the time, so use that to boost your confidence. Also, check out the Superthread on this site. It has a lot of really good information and advice from patients, caretakers and SURVIVORS that you can't get anywhere else.

My own "best advice" is to sit down with your husband and come up with a plan for what you are about to experience. There are a lot of decisions to be made and many of them can be made now, before the treatments take their full effect. The more you and your husband agree on how to handle this--and stick with your plan--the less overall stress you'll have, and the more energy you'll have to fight the disease and get through the treatments.

Mike

Skiffin16's picture
Skiffin16
Posts: 8068
Joined: Sep 2009

It's about time you got in here to introduce yourself...we've been wondering when it would be...LOL.

I was another with STGIII Tonsils and a lyhmpnode, back in January 2009. All scans have been clean and clear since finishing treatment in June 2009.

Very minimal side effects during treatment, and not much for long term side effects either.

Like most, I did lose my taste and saliva during chemo, and rads caused a lodd of several months.

I also went through some of the same as your hubby.

No dissection, but tonsils out, and four types of chemo over sixteen weeks, seven of those concurrent with 35 daily rad sessions.

Tons of great people here willing to share their experiences..

Like mentioned, here's a link to the SuperThread with a lot of great information;

SuperThread

Best,
John

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

We all really do welcome you to this group. Everyone here is extraordinary and have been so helpful along this journey. It has become like family to me since I first logged on at the end of July. People answer your questions and give support when needed. They listen to you vent and can really empathize with what you are dealing with. So K welcome to the family.

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Wow! What a great welcome! Thank You! Nice to know we aren't the first, and glad to make your friendships along the way..

My husband "d" just asked if anyone here that might have had a neck dissection got much feeling back later on? We are aware everyone's mileage might vary, but guess it would be encouraging to hear others experience.

I told him to feel free to share the account, but he has to sign with his own initial! :)

~k

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

I remember waking up from surgery following my radical neck disection 14 years ago. I was amazed and alarmed at how numb I was. All the way up onto my ear. All the way down onto my chest. I said to my wife "there is no way I can put a telephone onto that side of my face any more." Now, I am not aware of any significant difference between that side of things, and the "normal" side. It feels normal. I don't sweat on that side of my chest or neck, however. It is amazing how your brain can reprogram itself to handle stuff like this.

CivilMatt's picture
CivilMatt
Posts: 2918
Joined: May 2012

K,

I had Jugular Vein dissection to remove one lymph node on the left side of my neck (in addition to base of tongue surgery). That was almost 1 year ago and I have most of the feeling back in my cheek and neck. It was very numb for a long time, but is much better,

Matt

MichelleLee71
Posts: 13
Joined: Nov 2012

Hello and welcome. This place is great. I'm fairly new here myself. I had a right neck dissection May 24 of this year and I still have numbness but it is getting better. I had 30 treatments of rad and 3 sessions of chemo after my surgery. Just have to take things one day at a time.

KJCorri
Posts: 14
Joined: Aug 2012

I am still new here too, but there is so much wisdom and experience! My best wishes to you guys as you tackle this difficult time, prayers have been said! Kylie

KJCorri
Posts: 14
Joined: Aug 2012

I am still new here too, but there is so much wisdom and experience! My best wishes to you guys as you tackle this difficult time, prayers have been said! Kylie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

My wife is originally from Morgan (officially: South Amboy). So I got to visit a couple of times. I found the NJ was infamous for placing road signs AFTER the fork in the road. The road signs were made just for me and always said: "This is not the way you wanted to go." And then the J-Turns? Never seen anything like them.

What does this have to do with cancer? Nothing, it is a distraction. We need distractions just like we need j-turns and round-a-bouts (circles). Rick.

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