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

wbcgaruss

As stated in a previous post I had some neck soreness and stiffness and lt felt like a tight muscle on the left side of my neck. ENT was not alarmed but he set me up for a CAT scan OF THE NECK with dye on 8/13/19 just to be on the safe side.

OK-Hi Folks- so here is the update on scan-got my Cat Scan with dye on Tuesday. My ENT called Wednesday afternoon to give me the results. They are not on the positive side. Doc said these are not the kinda calls he likes to make. It turns I have cancer in my lymph node. Problem is he says it has an area that is not clear in a defined area as lymph nodes mostly are I guess it is sort of an aberration or distortion in one area of the node. I am not sure if I am describing this properly but he said what it means is it is possible it is beyond the lymph node in that area and possibly spreading into the tissue.

This situation he said calls for modified or maybe radical neck dissection.

That being said and taking my past treatment of being radiated in that area he has pretty much ruled out follow up rads for this after the neck dissection. Only chemo or I did mention immunotherapy to him and he seemed to have a positive take on that.

OK well, my ENT said he wants to send me to Philadelphia to a doctor there that really specializes in lymph operations because the cancer needs to be removed as sure as possible since my follow up-mop up options are limited as radiation can’t be used. This is a bit of a headache for me because I or my wife are not longer distance drivers but I can find someone to drive me. He said normally he would do it locally but since I had previous rads in that area he does not want to take chances thus the specialist.

So this is my third cancer-throat 2012-13 had chemo and 35 rads and all following PET scans were clear. Last year 2018 around April-May had a sore spot on my tongue and biopsy showed cancer again so I had tongue operated on and got clear margins and just before the operation I had a full PET scan and it showed the only cancer showing was on my tongue. Operated on in June 2018 so here we are a little over a year out and cancer rears it’s ugly head again.

So he is scheduling a needle biopsy to verify cancer and type. I will talk to him after that and decide what to do. Question is if I beat this will cancer show again in 6 months, a year, 2 years or will it not darken my door way again it is on my mind and the many decisions and the unknowns lying ahead.

I know many on here have had the modified and radical neck dissections are they difficult to go through and is the recovery difficult and what are the side affects of that situation?

So dealing with a cancer situation again-sorry to make this so long but was trying to explain it well for what I know up to this point-will update as I find out more-I wasn't necessarily in the mood to write this but trying to keep a positive attitude and forge ahead.-God Bless-Prayers are appreciated and I am thankful for this CSN-H&N family.

 

 

ProustLover

And this H & N Family is very thankful for you

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).  

caregiver wife

I'm sorry I have no answers to your questions.  Wishing you the very best,

Crystal

Sabrina23

Russ you have our full support and prayers

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. 

katlou

You are in my prayers

I am so sorry that you are going through this again.  As you might remember I also had a cancer removed from the underside of my tongue back in November 2017 with no neck dissection or radiation or chemo.  I am sorry that I can't give you answers to your questions but I wanted to offer you my support and prayers.  You are an inspiration and support to the people here. 

Bowing

I was so sorry to read that

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

 

 

 

wbcgaruss

Thank You

Thank you, thank you all for your support, prayers, well wishes, and knowledge. Thank you for the information from those of you that have the first-hand experience with neck dissection either you or your spouse. And thank you for just being there with a kind word when you don't have the answers. It means so much and here I am on the receiving end again. My first day with this scan result just trying to I guess you would say absorb it.

ERomanO

Very sorry to read this

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!

Pclark21st

We are not familiar with neck

We are not familiar with neck dissection as that was never an option.  But unfortunately we are familiar with recurrence.  Today we learned that cancer is spread throughout his chest and back at the original site.  So, all I can offer is to use the energy you have in the most efficient way by staying positive.  I know that's easier said then done, but negatively feeds negativity.  May the universe feed you the result you need. 

Logan51

Russ

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.

big G

Logan51 said:

Russ

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.

Neck dissection

Russ, sorry you are having to deal with this again. The neck dissection is not as bad as some of my radiation side effects.I have a little numbness on the left side but not bad. I was cut from ear to windpipe both sides and had 60 plus nodes removed. You will have drain tubes for 3-5 days then they will remove them. My scars have healed quite a bit where their not as noticeable as they were. You can do this we are with you and praying for you to rid yourself of this once and for all.

kgasmart

I had a modified radical neck dissection

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

big G said:

Neck dissection

Russ, sorry you are having to deal with this again. The neck dissection is not as bad as some of my radiation side effects.I have a little numbness on the left side but not bad. I was cut from ear to windpipe both sides and had 60 plus nodes removed. You will have drain tubes for 3-5 days then they will remove them. My scars have healed quite a bit where their not as noticeable as they were. You can do this we are with you and praying for you to rid yourself of this once and for all.

big G Thanks For Support And

It is good to hear from another H&N that went through dissection and was cut quite large as it sounds, on both sides, had so many nodes removed. Wow, 60 sounds like a lot. Like you say I can do this-so many others have and thanks for the details you've provided. Many times I have read now that people said the radiation was worse. Thanks for prayers and yes get rid of this cancer and no more.

wbcgaruss

kgasmart said:

I had a modified radical neck dissection

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?

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.

 

debbiel0

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 am very sorry to hear of

I am very sorry to hear of your struggles.  You have been such an inspiring source for so many of us with your words of wisdom and prayers.  Sometimes we forget to say thank you!  But I hope you know that for every prayer you have said for us is coming back to you tenfold!

kgasmart

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.

 

Good luck and best wishes to you

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.

wbcgaruss

Thank You debbiel0 & kgasmart

for your prayers and words of encouragement. debbl0 I am glad if I was a help to you in some way that is great if nothing more or less we are all CSN buddies the club we're in nobody joins willingly. As we help each other that's what God wants. I am certainly not looking forward to going through another cancer treatment but it is good to know the hospitals are so well rated, like, and admired. I am not sure yet if I am going to UPenn but you say they are all very good hospitals in that area. Again thank you both for your support and caring. I feel very blessed with the many responses I have received. God Bless

joannaw81

Hello Russ

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.

wbcgaruss

joannaw81 said:

Hello Russ

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.

Joanna You Are Right

There are many similarities. The fact that your mom has gone through these situations and overcome this disease is a testament for her and you helping out so much. Thanks for your support and hearing from you and so many others with positive stories are very encouraging. Thanks for responding and thanks for your story and support-God Bless

CivilMatt

wbcgaruss, we care about 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

 

whoisjohngalt

wbcgaruss....

You have been one of the best supporters of others on this site for as long as I can remember. I am considerably saddened by your recent news. Rest assured, you have many,many people on this board praying and pulling for you. I know your strong faith and the support of your wife will see you through the days ahead. Please keep us up to date on your progress, you can beat this!