Another Chapter in my H&N Journey-Scan Follow UP

Not the update we were hoping for you.  Not at all.  But there is hope the neck dissection will remove what needs to be removed.  As you know, my husband went through the tongue cancer first, followed by cancer in lymph nodes about 1-1/2 years later.  (He's had a "new" tongue cancer since then, but that's another story).   In his case, aggressive chemo was done for the lymph nodes, followed by modified neck dissection.  He was in the hospital for 4-5 days for that.  He looked fairly gruesome hooked up to tubes, but was medicated and feeling no pain.  By the time he came home, I recall he was eating well.  He has an impressive scar which healed well and flattened out over time.  His appearance is asymetrical - the side with the operation is kind of like a facelift.  I'm jealous looking at that profile!  Unfortunately, nerves were damaged and that shoulder droops considerably.  He had physical therapy for, which did the trick improving strength and reducing pain.  I think those shoulder issues happen often, although the doctor minimized them beforehand.  After the neck dissection, they said he was cancer free, but they recommended radiation and more chemo to be safe.  He ended up with a "new" tongue cancer anyway.  It's natural to think/worry about the future.  But even the healthiest of us won't last forever...and it surely helps us appreciate what we do have, and who we do love.  I'm not religious, like you, but am sending all prayerful thoughts your way (and to your wife too).  

Russ,  We are going to Mass in the morning for feast of the Assumption and you will be in our prayers for a full recovery and free of cancer.  We are so very sorry to hear the news it is heartbreaking.  Please know you have our full support and love.  You are such an inspiration on this forum and you gave me so much strength and hope when I went thru my surgery and first visited the forum with all my questions and worries.  You are a guiding light! You are so strong and brave and please know you will be okay and not to worry with all things are possible with God.  You will be healed and free of this cancer once and for all.  Keep the faith and hold steadfast.  God Bless you Russ and your family. 

I was so sorry to read that you have yet another bout of cancer to contend with.  When I came onboard this forum a few months ago you were there with kind words of hope.

I had a neck dissection in late January for a tumour in my lymph node.  It went from under my chin to behind my ear with another 'cut' going down about 3 finger lengths about halfway from the major cut.  (Sorry, I am not very good at explaining).   The surgery went well and they took out about 21 lymph nodes and only found the one tumour. 

The incision healed very well and I am having no problems from that surgery.  (The problems I am having now relate to the radiation treatments I had after, the largest dose on my lip from my first surgery).   

I was out of the hospital in 3 days, had the staples (i stopped counting at 50) removed 2-3 weeks later.    There will be numbness on your neck, ear, and shoulder/upper back that my ENT said could last a long time or maybe forever. I do feel that some of that numbness is coming out in the area of my shoulder, inside the ear etc.  You may also feel a tightness or swelling above the cut line.  I have read a bit about that and apparently it will take the body awhile to find other routes to flush out the waste that usually gets flushed by the lymph nodes, but it will happen eventually. 

The only problem I had was not being able to raise my arm above my shoulder.  I started physio about 6 weeks ago and my range of motion is much much better.  I first started looking online for exercises and there are some that are much like the ones the physiotherapist has given me to do, so if money is an issue you may want to go that route. 

All in all the dissection was not as bad as I had feared.  I am no 'spring chicken' at 73 so I was pleased with the quick recovery after the operation.

I will be thinking of you and your family and sending good vibes to you.    Linda

Anytime i read about someone having a recurrence my heart sinks. Maybe in the grand scheme of life it'll just be another blip.  I hope that's the case and pray this will be the last time you have to deal with "C".

I was listening to first doc I saw talk about the possibility of doing a modified radical neck dissection and it didn't exactly gve me a warm and fuzzy feeling.  But after reading some posts here, and talking to a woman that had one done recently, it doesn't seem as bad as I originally thought, except for the possibility of nerve damge to (in my case) my right arm.  Being a guitarist, damzage to either arm would be kind of bad. The doc said physical therapy would help, and I'm sure it would, but I'm glad I didn't have to go there.

Keep us posted as you go and know that we are all rooting for you!

Over the 10 years I've been on or kept an eye on this Forum's happenings, the neck dissection of nodes up to 42(?) is not that uncommon. C spreads thru the lymph system, as I understand it, so getting rid of the potential repositories makes sense. Yo-yos who treated me never mentioned it, and it has always puzzled me why, being so close to the U of Iowa. Instead, the 2 enlarged nodes got Rad-zappings to the hilt, and part of why I got too much of the Rads. Multiple evidences confirm the Rad & Chemo Dr. made a number of stupid mistakes= why I call them Yo-yos.

If I were you- I would consider the trip to Philly a good thing. Your Dr.s are right-on about a second round of Rads if its to the same place. Look at my profile to see how much of the Rads I got, and as you know I just got put on a feeding tube for life because of the Rad damage. Hopefully this will ace the C and it coming back on you.

My Prayers are with you.

Same week I had surgery for BOT cancer, December 2017. "Unzipped" me from ear to ear (did the right/tumor side at the same time they did laser surgery to remove the tumor, on a Tuesday; on Friday did the other side). Took 57 lymph nodes, just 1 tested positive.

Had a drain inserted for a week or so, wasn't that big a deal. Significant scarring still there today - my neck looks like 7 miles of bad road. Stiffness, periodic discomfort, and I wound up with fairly significant lymphedema early on, that's one of the biggest consequences of having so many lymph nodes removed. But, I had decongestive therapy/massage, which really helped; and I do self-massage every morning, it's managable.

You're in Lancaster,  is that correct? I grew up in Lancaster, moved away and then back for 22 years. I assume you've had some work done at LGH/UPenn, are you going to UPenn in Philly?

wbcgaruss said:

kgasmart Sounds Like

You had pretty extensive surgery. This is amazing what you and others went through. It certainly gives me a positive feeling that my situation is doable. I know I can get through this. Drain tubes- That's what most are saying the drain tubes out in 3-5 days. I have dealt with lymphedema during my throat cancer I had 35 rads and chemo-did daily draining massage and some therapy from a therapist at the health campus.

That is correct I live very near Lancaster and have had all my treatments so far locally at LGH/UPenn. I am not sure yet where I am going for treatment in Phila. Just received the news of the CAT scan results yesterday and the ENT office called today and said my biopsy is 8/26/19 and I have an appointment with the ENT 9/4/19 but was told the ENT appointment may be sooner if they get the results sooner they will bump my appointment up. I am figuring at that appointment I will find out the Phila. dates and times and the facility. Thanks for your input and help it is appreciated as all the input and guidance from everyone is appreciated.

 

I know UPenn in Philly has a guy considered to be the best in the country at TORS (transoral robotic surgery), and I'd actually called his office/communicated with him via email thinking maybe I'd fly back up for my surgery (I now live in South Florida) as all my family is still in Lancaster, ultimately decided because having to come back for all the follow-ups, etc, would have been too big of a headache... but point being, I'm pretty sure UPenn has extensive experience dealing with head & neck cancer; but there are so many good hospitals in the Philly region, you're really lucky to be so close.

Hello Russ,

Your story is very similar to my mom's, only slightly different. Please read my profile, all her surgeries/treatments and recurrances are listed in my profile. She is now cancer free to 7.5 years. Like everyone said here, the neck dissection is not as bad, my mom recovered within few days after each that she had. You can beat this, I have no doubt about it. Best of luck for you.

Dear Russell,

You have additional Cancer in (and around) your lymph nodes, I would like to tell you that “this will not do”, but I know it is not that easy.  Maybe, your doctor will be able to sweeten your “treatment pot” and this chapter in the Book of Russell will just be a formality treatment.  Such as, treatment at 8am and home by noon. I know this is just hopeful thinking, but we can all use a little positive reinforcement sometime.

I do not know what your team will ultimately prescribe for your treatment, but if you turned out to be a candidate for immunotherapy that could be a very positive thing.  Some of the doctors can actually guarantee (privately) a specific outcome based on what they observe in the pre-treatment, testing phase.  It is very specialized and powerful treatment against some cancers (but not all, not yet). The opposite is also true; the analysis of the perspective candidate can show that they are NOT a candidate for immunotherapy.

Many on the H&N forum have had radical neck dissection (40 to 70) nodes is very successful and the surgery does get the cancer and they heal up well from the surgery.  Now, normally you would get some radiation to go after any of the straggler cancer cells outside of the lymph nodes, but you may not have that option, this time around.  But fear not, they do have other specialized anti-cancer potions to use on you (if needed).

I guess this will make your retirement from the H&N forum moot at this time. Oh well, you have got this forum figured out and we love to hear more from you.

One of your fans and buddy,

Matt