ANYONE HAVE FEEDBACK REGARDING SURGICAL APPROACH

luv4lacrosse

Things are finally coming together. I met with my Doc yesterday and he formally staged me as T2 N2 BM0 P16+. Just what I wanted to hear regarding the HPV.

The Surgical approach for the Oral Cavity he call "Trans Oral Microscopic Laser Surgery." he says this approach will allow him to cut through the tumors and that he can visually see the difference in the way the laser burns through good and bad tissue allowing for more success with getting clean margins.

My neck scares me more than my mouth as there are tumors pressing firmly against my Jugular Vein and the Sternal Mastoid Muscle. The Doc is not worried about getting all of the cancer out, he hopes that the tumors are not imbedded and will simply pull away from the vein and muscle. Worst case, he might have to resect the vein and I may lose some of the muscle, but will not know until he is in there. Lastly there are a couple of nerves along my jaw that could suffer some stress that might cause a slight droop in my lip thus affecting a good smile.

Does anyone have any experience with any of what I just mentioned?

Surgery is Monday Morning, a Trach is not anticipated, but a nasal Feeding Tube will be in order for awhile.

A sicere thanks to all of you who have had a huge role in keeping me positive through this.

BEST!!

Mike

MarineE5

sternocleidomastoid muscle
Mike,

I am not able to help you with allot here except the sternocleidomastoid muscle (SCM).
I had this removed as part of my radical neck disection. I had 30 plus lymphnodes removed along with the SCM. It did cause me to have weaker right arm strength. I did not have any trouble with my smile or drooping of the mouth as you mentioned. After I completed the radiation treatments, I had lymphadema several months out and was sent to a Physical Therapist to build up my strength and learn the stretching and massage for my face and neck. The physical therapy helped.

My operation was almost 6 yrs ago and medicine is constantly changing and updating with new procedures, which is good. I had part of my tongue removed, Tracheodomy, Peg Tube,Radical neck disection and drain tubes when I left the hospital after 3 1/2 days.

My Best to You and Everyone Here

Greg53

MarineE5 said:

sternocleidomastoid muscle
Mike,

I am not able to help you with allot here except the sternocleidomastoid muscle (SCM).
I had this removed as part of my radical neck disection. I had 30 plus lymphnodes removed along with the SCM. It did cause me to have weaker right arm strength. I did not have any trouble with my smile or drooping of the mouth as you mentioned. After I completed the radiation treatments, I had lymphadema several months out and was sent to a Physical Therapist to build up my strength and learn the stretching and massage for my face and neck. The physical therapy helped.

My operation was almost 6 yrs ago and medicine is constantly changing and updating with new procedures, which is good. I had part of my tongue removed, Tracheodomy, Peg Tube,Radical neck disection and drain tubes when I left the hospital after 3 1/2 days.

My Best to You and Everyone Here

Same thing for me Mike
Mike,

Similar dx as you. I had SCC right tonsil along mets to lymph nodes on right and left side. The lymph nodes were adjacent to jugular on both left and right sides and also on the SCM on the right. During surgery he removed 63 nodes on right side (10 positive). The nodes were embedded in jugular and SCM so he had to remove both the SCM and jugular on right side along with nerve to face and nerve to shoulder. On left side the positive node was also embedded in jugular vein, therefore he elected to leave it versus chancing nicking other jugular during removal of lymph node. Went after remaining lymph node with R/C with option of second surgery if R/C did not get it. First post-treatment pet showed no action on left node, so (fingers crossed) no 2nd surgery at this time.

Results from surgery: no feeling in right side of face from cheekbone to collarbone (not a big deal, except when shaving); slight droop in shoulder initially along with reduced movement and loss of strength; no droopy smile. I have always worked out a LOT (can't tell from my current pic as I am a Skeeter-Butt, as my wife calls me now). So I started working out and stretching shoulder immediately. Shoulder droop has gone away and I have 95% range of motion of shoulder. I am 4 months post-treatment. I know by 1 year out I will have at least 99% range of motion back and no doubt will get all my strength back.

I know you have a great attitude and like to work out. I'm betting you do fine, just depends on how extensive the surgery is. Hey and your north county bro'....tough as nails!

So besides same HS and living within a mile of each other we have similar dx too. Musta been something in that water up north. I'll be thinking of you come Monday. Hang tough dude! Positive thoughts coming at ya!!

Greg

Skiffin16

Any Additional Treatment
I would just be curious if they have any additional treatment planned for you...radiation, chemo, both, etc....

I would be a little sketical if they only planned on the surgery approach. But that is only from my personal treatment plan, and the very many on here that have also had similar treatment plans.

best,
John

miccmill

Skiffin16 said:

Any Additional Treatment
I would just be curious if they have any additional treatment planned for you...radiation, chemo, both, etc....

I would be a little sketical if they only planned on the surgery approach. But that is only from my personal treatment plan, and the very many on here that have also had similar treatment plans.

best,
John

Similar
Glenn had a similar diagnosis except his primary tumor could not be located so he was T0N2bMo

The "N2b" part was two cystic lymph nodes that were fully encapsulated and did not involve the carotid or scm muscle. He did have shoulder pain and weakness as well as facial droop and both are still resolving. We were told that could take 6 months.

This surgery requires a lot of pulling on some very large muscles that support your jaw, shoulder and arm as well as pulling around an important cranial nerve that controls the facial droop. These muscles attach to the base of your skull and front of clavical so pain at those attachment points would not be unusual either. The resident loved explaining this to us in great detail.

He was prepared by the ENT surgeon for loss of the scm muscle altogether but it was not necessary.

His treatment plan included 30 radiation treatments and 3 chemo which he just completed on Tuesday.

Because of the unkonwn primary, his radiation covered a lot of ground.

Did your surgeon mention options for treatment after surgery? If not, you'll likely have an appointment after everything goes to the tumor board, after surgery.

luv4lacrosse

Skiffin16 said:

Any Additional Treatment
I would just be curious if they have any additional treatment planned for you...radiation, chemo, both, etc....

I would be a little sketical if they only planned on the surgery approach. But that is only from my personal treatment plan, and the very many on here that have also had similar treatment plans.

best,
John

additional treatment plan
Radiation 4-6 weeks after surgery and not 100% certian about chemo at this point.

Mike

luv4lacrosse

miccmill said:

Similar
Glenn had a similar diagnosis except his primary tumor could not be located so he was T0N2bMo

The "N2b" part was two cystic lymph nodes that were fully encapsulated and did not involve the carotid or scm muscle. He did have shoulder pain and weakness as well as facial droop and both are still resolving. We were told that could take 6 months.

This surgery requires a lot of pulling on some very large muscles that support your jaw, shoulder and arm as well as pulling around an important cranial nerve that controls the facial droop. These muscles attach to the base of your skull and front of clavical so pain at those attachment points would not be unusual either. The resident loved explaining this to us in great detail.

He was prepared by the ENT surgeon for loss of the scm muscle altogether but it was not necessary.

His treatment plan included 30 radiation treatments and 3 chemo which he just completed on Tuesday.

Because of the unkonwn primary, his radiation covered a lot of ground.

Did your surgeon mention options for treatment after surgery? If not, you'll likely have an appointment after everything goes to the tumor board, after surgery.

treatment
Yes, I must have left that part out on my thread.
Radiation is definite. My doc is not 100% certian about the chemo yet.

Your information was very helpfull.

Best!!

Mike

luv4lacrosse

Greg53 said:

Same thing for me Mike
Mike,

Similar dx as you. I had SCC right tonsil along mets to lymph nodes on right and left side. The lymph nodes were adjacent to jugular on both left and right sides and also on the SCM on the right. During surgery he removed 63 nodes on right side (10 positive). The nodes were embedded in jugular and SCM so he had to remove both the SCM and jugular on right side along with nerve to face and nerve to shoulder. On left side the positive node was also embedded in jugular vein, therefore he elected to leave it versus chancing nicking other jugular during removal of lymph node. Went after remaining lymph node with R/C with option of second surgery if R/C did not get it. First post-treatment pet showed no action on left node, so (fingers crossed) no 2nd surgery at this time.

Results from surgery: no feeling in right side of face from cheekbone to collarbone (not a big deal, except when shaving); slight droop in shoulder initially along with reduced movement and loss of strength; no droopy smile. I have always worked out a LOT (can't tell from my current pic as I am a Skeeter-Butt, as my wife calls me now). So I started working out and stretching shoulder immediately. Shoulder droop has gone away and I have 95% range of motion of shoulder. I am 4 months post-treatment. I know by 1 year out I will have at least 99% range of motion back and no doubt will get all my strength back.

I know you have a great attitude and like to work out. I'm betting you do fine, just depends on how extensive the surgery is. Hey and your north county bro'....tough as nails!

So besides same HS and living within a mile of each other we have similar dx too. Musta been something in that water up north. I'll be thinking of you come Monday. Hang tough dude! Positive thoughts coming at ya!!

Greg

SKEETER
Greg, the hockey player towering over me in my photo was nick named Skeeter since birth. He even has a pillow case my wife got him from Lands End with Skeeter embroidered on it. What the hell else might we also have in common. I thought you mentioned in one of your previous threads that you were an Engineer. My son is starting Architectural Engineering at Kansas State this year. My goal is to be well enough to make the car ride to Manhattan by 8-20. (keep my fingers crossed)

I am assuming the previous photo of you was before cancer?? You looked like you had more size on you in that photo. I am really glad to hear that you are training your way back into shape, and that things are coming back to normal. I have had 2 previous lumbar fusions done from my powerlifting days and have suffered some permanent numbness and loss of feeling to my Right Glute, Right Calf and Right Heel, so I am already well equipped in just living with chronic pain and making do what what was left after surgery.

Maybe in the not to distant future we can have a burger and a beer at Clancy's.

Mike

Greg53

luv4lacrosse said:

SKEETER
Greg, the hockey player towering over me in my photo was nick named Skeeter since birth. He even has a pillow case my wife got him from Lands End with Skeeter embroidered on it. What the hell else might we also have in common. I thought you mentioned in one of your previous threads that you were an Engineer. My son is starting Architectural Engineering at Kansas State this year. My goal is to be well enough to make the car ride to Manhattan by 8-20. (keep my fingers crossed)

I am assuming the previous photo of you was before cancer?? You looked like you had more size on you in that photo. I am really glad to hear that you are training your way back into shape, and that things are coming back to normal. I have had 2 previous lumbar fusions done from my powerlifting days and have suffered some permanent numbness and loss of feeling to my Right Glute, Right Calf and Right Heel, so I am already well equipped in just living with chronic pain and making do what what was left after surgery.

Maybe in the not to distant future we can have a burger and a beer at Clancy's.

Mike

Fingers Crossed
Mike,
I was fine 2 weeks after surgery. I bet you'll have no problems taking him to KSU. Fingers crossed for you though so you can drive him out there. Just an ol' MU engineer here, if you can't tell from the pic (Go Tigers). Yeah I went from 210 a couple years ago (200 right before surgery) to 150. Back to 162 now and can't gain a pound more as of yet. Hopefully it will get easier to gain when I can eat more. Still using peg 25% of time. Clancy's sound great!
Greg

kimmygarland

luv4lacrosse said:

additional treatment plan
Radiation 4-6 weeks after surgery and not 100% certian about chemo at this point.

Mike

Wishing you the Best
I hope you have an uneventful surgery, and speedy recovery.

luv4lacrosse

kimmygarland said:

Wishing you the Best
I hope you have an uneventful surgery, and speedy recovery.

THANK YOU
Thanks much for the kind thoughts.

luv4lacrosse

Greg53 said:

Fingers Crossed
Mike,
I was fine 2 weeks after surgery. I bet you'll have no problems taking him to KSU. Fingers crossed for you though so you can drive him out there. Just an ol' MU engineer here, if you can't tell from the pic (Go Tigers). Yeah I went from 210 a couple years ago (200 right before surgery) to 150. Back to 162 now and can't gain a pound more as of yet. Hopefully it will get easier to gain when I can eat more. Still using peg 25% of time. Clancy's sound great!
Greg

WEIGHT GAIN
I am 238 right now. If this dropped me to a final 200 LBS that would be good for me as I get older and the Weight Lifting will most likely be way less intense going forward.

Greg, have a great weekend and updates to follow shortly.

Mike

rush1958

Surgery
Mike,

I was a T1N3M0 for BOT and opted for the Trifecta (surgey - chemo - radiation). I had the surgery on Good Friday of this year. They used the laser in the oral cavity and also removed 41 lymph nodes at the same time.

Personally, I thought the surgery was the easiest portion of the entire process. I was up and walking over a mile within 48 hours of the surgery. I was home in four days and felt pretty well healed up at the two week mark.

I had the nasal feeding tube for about three days. I didn't care much for that. It felt like I was being water boarded every time they put something down it.

The surgery was followed up by 33 radiation treatments and three rounds of cisplatin on 21 day intervals. I was fortunate that I never really had the mucous build up so many experience, I never had sores in the mouth or throat and I could swallow without pain through the whole treatment.

My surgeon has a theroy about why that occurred. She thinks that the effects were lessened due to the removal of the cancer beforehand. They used a lower dose of therapy on a targeted area of tissues. Everyone is different, so it's hard to say.

All I can say is that it worked out well for me. I started the process being very overweight and I dropped 100 pounds that needed to come off. I didn't have many complications from the radiation and chemo. Within two weeks of ending treatment my taste started to improve. Five weeks out of treatment I had the PEG tube (that I never used) removed.

No regrets and no complications from surgery!

Rush