Neck Dissection first part of my kill cancer protocol

nancytc

Hi!

I am a newbie here .

My cancer presented with a swollen lymph node under my jawbone below the ear.

My diagnosis was SCC Stage 4a with unknown primary. They are pretty certain it carries the HPV 16 marker and will have a definite on that soon.

Surgery with TORS is being scheduled soon for a search for the primary, plus primary tumor removal if they find it. And then another surgery during the same general anesthesia for a neck dissection. My earlier CAT scan showed two cervical lymph node tumors, one node was removed two weeks ago with a diagnostic lymph node surgery.

Can anyone share what their experience was with their neck dissection? I will also be facing 30 x radiation for sure and possible 3 x concurrent chemo.

Thanks for any sharing!!!

CivilMatt

welcome

nancytc,

Welcome to the H&N forum, mine was stage IVa, scc, bot, 1 lymph node hpv+ (suregery, rads & Erbitux).  Mine started with  a lump on the neck only, but cancer had its buddy in my tongue too.  I had a  jugular vein dissection & ulcerated section on my tongue removed, mine did not hurt and was just a little uncomfortable.

Erbitux had a few challenges, but rads is the band leader with throat, mouth and tongue discomfort and the loss of taste buds and saliva (plus others).

You may breeze through unscathed, but chances are you will be challenged.  Most likely anything you encounter has been dealt with , here before.

I wish you good (better) fortune.

Matt

bebo12249

Your situation is almost

Your situation is almost identical to mine except my primary was my left tonsil. I had a neck dissection at the time of tonsil removal. I had no long term problems from the dissection. Short term I lost some range of motion in my left arm but it returned within 6 months. I also experirnced occasional lymphedemea around my left jaw but it was mild and resolved also after about 6 months. The scar is not obvious. Let me know if other info is needed. Bill

nancytc

CivilMatt said:

welcome

nancytc,

Welcome to the H&N forum, mine was stage IVa, scc, bot, 1 lymph node hpv+ (suregery, rads & Erbitux).  Mine started with  a lump on the neck only, but cancer had its buddy in my tongue too.  I had a  jugular vein dissection & ulcerated section on my tongue removed, mine did not hurt and was just a little uncomfortable.

Erbitux had a few challenges, but rads is the band leader with throat, mouth and tongue discomfort and the loss of taste buds and saliva (plus others).

You may breeze through unscathed, but chances are you will be challenged.  Most likely anything you encounter has been dealt with , here before.

I wish you good (better) fortune.

Matt

Thank You Matt! My oncologist

Thank You Matt! My oncologist has mentioned

Cisplatin. What were the challenges with the Erbitux???

nancytc

bebo12249 said:

Your situation is almost

Your situation is almost identical to mine except my primary was my left tonsil. I had a neck dissection at the time of tonsil removal. I had no long term problems from the dissection. Short term I lost some range of motion in my left arm but it returned within 6 months. I also experirnced occasional lymphedemea around my left jaw but it was mild and resolved also after about 6 months. The scar is not obvious. Let me know if other info is needed. Bill

Hi Bill,

Hi Bill,

Did they know your primary before your neck dissection. My fear right now is the unknown primary which has a more severe protocol. The TORS used for a primary biopsy search, from studies I have read has a 70plus % chance of locating the primary cancer source.

 

yensid683

I had two!

Selective neck dissections that is.

Welcome to the place where no one wants to be, but has the greatest people I've ever encountered/

I had a similar issue as you, stage IVa SCC, HPV 16+ but I had a known primary, a 30 mm lesion on the left base of my tongue.  I had no symptoms until a lymph node popped up on the left side of my neck and was ultimately diagnosed with SCC.

My treatment was different though, no surgery at first.  Looking at the results of the first PET scan, I think it wasn't an option.  I had induction chemo, follwed by concurrent chemo and radiation.  33 radiation treatments and 8 weekly administrations of Erbitux.

A post treatment PET was done 3 months after the last radiation treatment, and a selective neck dissection was recommended.

It wasn't all that difficult either, surgery was on an outpatient basis, something I would not recommend as I developed an abscess some 4 weeks later that I feel was due to inadequate post operative anti-biotic therapy.

I had a 2nd PET in March of 13 and it found more issues,  was referred to a specialist who did a second selective dissection to remove more lymph nodes that fortunately tested negative.

I have an impressive scar down the left side of my neck, both incisions were made in the skin fold along the side of my neck, most people don't notice the scar unless I point it out, but it is there.

I will say that there are a couple of things you will deal with from the surgery.  The first is a condition called lymphadema, swelling in the neck due to the pooling/accumulation of lymph - the dissection takes the nodes and lymph veins out so it accumulates in the neck.  Have your team teach you about neck massage, it helps.  It is also a temporary issue, lymphatic drainage will reestablish itself.

The other is the impact to the various nerves in the area.  My surgeons didn't cut any nerves, but the did manipulate them and did some damage to peripheral nerves (unavoidable in this) so I had some numbness in my left earlobe and jaw area. 

It is slowly recovering some 3 years later, most of the numbness has faded but it is still there.

I hope I haven't frightened you, cancer is a scary diagnosis and treatment is challenging but you do get better, you acclimate to the changes it makes and you get on with your life.

It takes a long time, the process and response is unique to every patient but it does get better.

My Cancer Support Network family has always been there for me, just like we will be for you.

jakesaround

I had a very similar diagnosis...

Nancytc,

Sorry to hear about your recent troubles and so close to the holidays never makes for relaxing/enjoyable time. My situation was very similar to yours I first noticed an issue by finding a "lump", swollen lymph node, under my jaw/right ear as well. I went through a series of doctors only to have each one tell me there was a very small chance it was serious/cancer. I finally had a FNA which revealed there were cancer cells present in the swollen node. Then I was sent to see the H&N surgeons and oncologists about locating the primary and coming up with a plan of action. No one could find the primary but my Doc had been around long enough to know that it was most likely coming from the right tonsil that was on the same side as the swollen node. So we scheduled the surgery for a right neck dissection and tonsillectomy, both tonsils just to be safe. My doc also took random biopsies from my base of tounge and other pyriform sinus areas just to make sure nothing was missed. It turned out my primary was in my right tonsil and I had 2 out of 17 lymph nodes show cancer present from the neck dissection. The surgery was honestly a breeze other than not being able to eat solid foods from the tonsillectomy for 7-10 days and i felt great. I was fortunate no permanet damage was done to any of the nerves that control my arm or muscles surronding my right neck and back but i did have damage to the nerve that connects to my ear lobe and the lower righ side of my neck up to my jaw was numb from the neck dissection. I then was scheduled for 6 weeks radition and 6 weeks chemo. This all began back in August of 2015 and it had been just over a year since i finished with all my treatments. I have had two PET scans since then and everything has been all clear. I still see my H&N doctor regularly and my oncologists every quarter and all in all I am very grateful to be where i am and I do feel very much like my old self again. It seemed like a very slow process during the treatment and i wondered if it would ever end and if i would ever be able to enjoy my life again but once i got about 6-8 weeks past treatment i really began to see the light at the end of the tunnel. There is so much i could say about the whole experience but i think these things are handled the best one step/day at a time as for right now you are focusing on your surgery and that is good place to start. Once your surgery is over you will have a lot more answers and a lot more questions.

Stay positive and I will talk to you later.

Jake...     

bebo12249

nancytc said:

Hi Bill,

Hi Bill,

Did they know your primary before your neck dissection. My fear right now is the unknown primary which has a more severe protocol. The TORS used for a primary biopsy search, from studies I have read has a 70plus % chance of locating the primary cancer source.

 

Yes, after the swollen lymp

Yes, after the swollen lymp was found, they biospied the node and tonsil, both positive, SSC p16+. This was followed by pet scan and then by tonsillectomy and neck dissection. I'm not familiar with TORS but a pet scan will usually id the primary... from my limited knowledge of protocols, finding the primary will not likely change the protocol from what they are thinking today..you have a yet to be id'ed primary with node involment .. after id'ing the primary you'll have a known primary with node involvement. The "severity" of the protocol will not likely change..

nancytc

bebo12249 said:

Yes, after the swollen lymp

Yes, after the swollen lymp was found, they biospied the node and tonsil, both positive, SSC p16+. This was followed by pet scan and then by tonsillectomy and neck dissection. I'm not familiar with TORS but a pet scan will usually id the primary... from my limited knowledge of protocols, finding the primary will not likely change the protocol from what they are thinking today..you have a yet to be id'ed primary with node involment .. after id'ing the primary you'll have a known primary with node involvement. The "severity" of the protocol will not likely change..

Hi!

Hi!

I will keep you posted. Both oncologists have expressed that the protocol for CUP requires more radiation on more surfaces than if they have a primary site they can remove and radiate. I hope you are right! I meet with the TORS surgeon tomorrow and will know more. I have read that they find the primary 70% of the time during this biopsy search with the robot.

 

nancytc

yensid683 said:

I had two!

Selective neck dissections that is.

Welcome to the place where no one wants to be, but has the greatest people I've ever encountered/

I had a similar issue as you, stage IVa SCC, HPV 16+ but I had a known primary, a 30 mm lesion on the left base of my tongue.  I had no symptoms until a lymph node popped up on the left side of my neck and was ultimately diagnosed with SCC.

My treatment was different though, no surgery at first.  Looking at the results of the first PET scan, I think it wasn't an option.  I had induction chemo, follwed by concurrent chemo and radiation.  33 radiation treatments and 8 weekly administrations of Erbitux.

A post treatment PET was done 3 months after the last radiation treatment, and a selective neck dissection was recommended.

It wasn't all that difficult either, surgery was on an outpatient basis, something I would not recommend as I developed an abscess some 4 weeks later that I feel was due to inadequate post operative anti-biotic therapy.

I had a 2nd PET in March of 13 and it found more issues,  was referred to a specialist who did a second selective dissection to remove more lymph nodes that fortunately tested negative.

I have an impressive scar down the left side of my neck, both incisions were made in the skin fold along the side of my neck, most people don't notice the scar unless I point it out, but it is there.

I will say that there are a couple of things you will deal with from the surgery.  The first is a condition called lymphadema, swelling in the neck due to the pooling/accumulation of lymph - the dissection takes the nodes and lymph veins out so it accumulates in the neck.  Have your team teach you about neck massage, it helps.  It is also a temporary issue, lymphatic drainage will reestablish itself.

The other is the impact to the various nerves in the area.  My surgeons didn't cut any nerves, but the did manipulate them and did some damage to peripheral nerves (unavoidable in this) so I had some numbness in my left earlobe and jaw area. 

It is slowly recovering some 3 years later, most of the numbness has faded but it is still there.

I hope I haven't frightened you, cancer is a scary diagnosis and treatment is challenging but you do get better, you acclimate to the changes it makes and you get on with your life.

It takes a long time, the process and response is unique to every patient but it does get better.

My Cancer Support Network family has always been there for me, just like we will be for you.

I feel so blessed to have

I feel so blessed to have found this site, I am very information forward so knowledge does not scare me. I would rather be prepared for as much as I can beforehand. I am not sure why they are doing surgery first...I will ask my surgeon in the morning and update. My ENT oncologist explained a few days ago, that if they can find the primary with the TORS and after removing it, that if I would consent to a neck dissection they may be able to forgoe the chemotherapy. I got a second opinion and he said to definitely do the neck dissection.

I will update you tomorrow when I know more!!!

Nancy

nancytc

jakesaround said:

I had a very similar diagnosis...

Nancytc,

Sorry to hear about your recent troubles and so close to the holidays never makes for relaxing/enjoyable time. My situation was very similar to yours I first noticed an issue by finding a "lump", swollen lymph node, under my jaw/right ear as well. I went through a series of doctors only to have each one tell me there was a very small chance it was serious/cancer. I finally had a FNA which revealed there were cancer cells present in the swollen node. Then I was sent to see the H&N surgeons and oncologists about locating the primary and coming up with a plan of action. No one could find the primary but my Doc had been around long enough to know that it was most likely coming from the right tonsil that was on the same side as the swollen node. So we scheduled the surgery for a right neck dissection and tonsillectomy, both tonsils just to be safe. My doc also took random biopsies from my base of tounge and other pyriform sinus areas just to make sure nothing was missed. It turned out my primary was in my right tonsil and I had 2 out of 17 lymph nodes show cancer present from the neck dissection. The surgery was honestly a breeze other than not being able to eat solid foods from the tonsillectomy for 7-10 days and i felt great. I was fortunate no permanet damage was done to any of the nerves that control my arm or muscles surronding my right neck and back but i did have damage to the nerve that connects to my ear lobe and the lower righ side of my neck up to my jaw was numb from the neck dissection. I then was scheduled for 6 weeks radition and 6 weeks chemo. This all began back in August of 2015 and it had been just over a year since i finished with all my treatments. I have had two PET scans since then and everything has been all clear. I still see my H&N doctor regularly and my oncologists every quarter and all in all I am very grateful to be where i am and I do feel very much like my old self again. It seemed like a very slow process during the treatment and i wondered if it would ever end and if i would ever be able to enjoy my life again but once i got about 6-8 weeks past treatment i really began to see the light at the end of the tunnel. There is so much i could say about the whole experience but i think these things are handled the best one step/day at a time as for right now you are focusing on your surgery and that is good place to start. Once your surgery is over you will have a lot more answers and a lot more questions.

Stay positive and I will talk to you later.

Jake...     

Thank You for the detail.

Thank You for the detail. Very helpful . The docs also think they may find it in my tonsils due to the lymph node that was full of cancel and removed in the diagnostic biopsy. Both of my FNC's were inconclusive which led to them cutting out an intact node. My ENT said it was pressed by the cancer cyst into my neck muscle which they had to carve a bit of the muscle out. More to be revealed and I am grateful to have this support system for sure!!!

 

 

phrannie51

When looking for real life information

on neck dissections, you hit the jackpot on this forum .  I didn't have one the first go-round and thought I was lucky...ah, but it seems some of the cancer cells set up camp in a couple of nodes three years after my original treatment (the same treatment they are thinking of for you....3 chemo's concurrent with radiation).  They then did a neck dissection.  Amazingly, the dissection is pretty painless...the first two days were "sore" not painful....then after that it really didn't hurt.  It looked impressive tho....LOL.  I had staples from behind my ear to my collarbone.  Today, you can't even see it (and I don't have folds to hide it in, and it still doesn't show). 

The only lasting effects of the dissection is some stiffness in the muscle of my neck (probably due more to the rads)....and the skin is numb on my ear, back of my jaw....and because they went all the way down to my collarbone, the skin on my chest and shoulder is numb.  I got used to it very quickly.  I was just reading my last scan (I had it on Dec. 17th)....and that was first I realized they had done some carving on my neck muscle, too....took it out actually...but it sure can't be seen from the outside. 

You just hang close to this site....the people here held my hand from the day I was diagnosed till now (actually)....that's going on 5 years in March.  They have tricks up their sleeves to make rads and chemo more doable that even the Drs. haven't thought of.  Everytime I took an "idea" to my Dr. he'd say "yeah, that IS a good idea....try it"....

p

bebo12249

nancytc said:

Hi!

Hi!

I will keep you posted. Both oncologists have expressed that the protocol for CUP requires more radiation on more surfaces than if they have a primary site they can remove and radiate. I hope you are right! I meet with the TORS surgeon tomorrow and will know more. I have read that they find the primary 70% of the time during this biopsy search with the robot.

 

For my situation, i was told

For my situation, i was told that the recommended protocol was radiation and chemo if the primary was or was not removed. I elected removal, and was then told that they could reduce the radiation dose somewhat. So, yes there can be a difference but i elected removal not because of a treatment difference but because my surgeon (and friend) recommended it. By the way, it turned out that my kidneys didn't like the cisplatin so they had to give me a lower than usual dose. I'm really glad i had the primary removed for that reason.

armana

Greetings

Nancy, I am sorry that you have joined our club, but, this is a great place for support and information. I was diagnosed with stage 3 tonsil cancer positive for the HPV little over 2 years ago and finished 6 1/2 weeks of radiation in Nov 2014 and been cancer free since. I just want to make sure you take care of your teeth and the following web site has great information. https://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/OralComplicationsCancerOral.htm

good luck and keep us posted

Arman

Bart T

WISHING YOU THE BEST

I see you’re in for a neck dissection and let me add my thoughts and experiences to the group of responses. I don’t know if you are having a selective dissection (just a few select nodes) or a radical dissection (removal of all from one or both sides). I had tongue cancer and I had a radical neck dissection on the right side with forty odd nodes removed. I had that surgery at the same time as a hemiglossectomy (removal of one side of the tongue). Although it’s not fully possible to separate the peas from the pea soup, the neck dissection was without a doubt the easier part of the deal. I would say my level of pain from the dissection was minimal.

I did have a gross looking incision, but it was in one of my skin creases, and over time it has faded to the point where you wouldn’t know if unless I pointed it out. I was back to playing tennis within two or three weeks although for several months I felt some pain in my shoulder on my serve and overhead. There was a little nerve damage leaving me with a loss of sensitivity on my lower cheek and neck, but at worst that’s just a minor annoyance. One strange thing was that it disrupted the channels where Novocain goes during dental work, so I am unable to get numb enough for work on the very rear of my lower right side. So on the few occasions I had to have some dental work in that section of the mouth I needed general anesthesia.

A few people mentioned lymphadema, and that can be a problem. In my case, just a minor annoyance, although it never went away. It causes occasional and transient pain, similar to a muscle cramp in the neck. Again, massage works. YouTube has several good video showing self-massage. Here is a link to one of them: https://www.youtube.com/watch?v=QA-wi0d7-Ro

One step at a time. I, like many of the other members have also had radiation and some chemo, so when you’re ready to cross those bridges, you’re in the right place.

If you’re interested in the cosmetics of the incision, you can see mine at about one week and again at about 5 weeks in a couple of YouTube slide shows I posted. I assure you it looks way worse than it feels, and by the time my neck skin healed from the radiation, the scar was barely visible. Feel free to ignore the rest of the video and just look at the neck pictures.  https://www.youtube.com/watch?v=5-PVrJCK01s, https://www.youtube.com/watch?v=UYAQrAbAhUw.

I wish you all the best on your journey. Bottom line on treatment is that it’s not easy but is doable and has a lot of success stories. I’m sure years from now you’ll be one of them. I for one will be celebrating 5 years without cancer this summer, and many of us on the board are much longer-term survivors.

I wish you all the best. 

nancytc

Update

Hi All,

Yesterday I had a phone appointment with my  TORS surgeon. My team in Santa Clara have now decided that they will forgoe the neck dissection. They will do a extensive search for the primary with the Robot, and remove the tumor and possibly my tonsils as well with the Robot. This has a statistical success in finding the primary in more than 80% of this surgery. I will spend one night in the hospital if all goes according to plan, then meet with my oncologist a week later.

Their reasoning was that the pathologist was not able to give them a conclusive diagnosis on the condition of the lymph node.  It was pressed into my neck by the cyst. It was in two pieces when the pathologist got it from the surgeon, so the extracapsuler extension could not be identified. As its exterior was most likely sticky to embed in my neck muscle, they assume that it was somewhere around a  2-3 on the scale, but not definitive. So my surgeon said that they prefer not to put me through surgery, RADs, and Chemo. HPV16 responds really well to treatment they said. So they are emlimintating the neck dissection and going with a 6 week RADs and  3 X Chemo/Cisplatin.

nancytc

armana said:

Greetings

Nancy, I am sorry that you have joined our club, but, this is a great place for support and information. I was diagnosed with stage 3 tonsil cancer positive for the HPV little over 2 years ago and finished 6 1/2 weeks of radiation in Nov 2014 and been cancer free since. I just want to make sure you take care of your teeth and the following web site has great information. https://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/OralComplicationsCancerOral.htm

good luck and keep us posted

Arman

Hi Arman!

Hi Arman!

I have a lengthy protocol I have been given for my teeth. I had an extensive cleaning done yesterday,and next Wednesday I will get a thorough check up plus trays for daily flouride treatments. Thank You for caring!!!

Nancy

nancytc

phrannie51 said:

When looking for real life information

on neck dissections, you hit the jackpot on this forum .  I didn't have one the first go-round and thought I was lucky...ah, but it seems some of the cancer cells set up camp in a couple of nodes three years after my original treatment (the same treatment they are thinking of for you....3 chemo's concurrent with radiation).  They then did a neck dissection.  Amazingly, the dissection is pretty painless...the first two days were "sore" not painful....then after that it really didn't hurt.  It looked impressive tho....LOL.  I had staples from behind my ear to my collarbone.  Today, you can't even see it (and I don't have folds to hide it in, and it still doesn't show). 

The only lasting effects of the dissection is some stiffness in the muscle of my neck (probably due more to the rads)....and the skin is numb on my ear, back of my jaw....and because they went all the way down to my collarbone, the skin on my chest and shoulder is numb.  I got used to it very quickly.  I was just reading my last scan (I had it on Dec. 17th)....and that was first I realized they had done some carving on my neck muscle, too....took it out actually...but it sure can't be seen from the outside. 

You just hang close to this site....the people here held my hand from the day I was diagnosed till now (actually)....that's going on 5 years in March.  They have tricks up their sleeves to make rads and chemo more doable that even the Drs. haven't thought of.  Everytime I took an "idea" to my Dr. he'd say "yeah, that IS a good idea....try it"....

p

Thank You friend! I can tell

Thank You friend! I can tell that this site will be part of my survival plan!!!!!