First let me tell you what a neck dissection is:
The neck dissection is a procedure for control of (SCC) cancer of the head and neck. The aim of the procedure is to remove lymph nodes from one side of the neck into which cancer cells may have migrated. Metastasis of squamous cell carcinoma into the lymph nodes of the neck reduce survival and is the most important factor in the spread of the disease.
Now let me tell you how its done:
The procedure is performed under general anesthesia through an incision that runs along a skin crease in the neck. Radical and modified radical neck dissections often requires a vertical incision toward the collarbone in addition to the incision in the skin crease. These incisions heal well with minimal scarring and provide safe access to the structures in the neck. Beneath the skin, underlying fat, and a thin layer of muscle, the dissection proceeds to identify and remove the envelope of tissue containing the lymph nodes and surrounding tissues. Except for the sternocleidomastoid muscle, no major muscles are removed and there is no risk of long-term neck weakness.
Neck dissections take 2-4 hours to complete, depending on the type. The incision is usually closed with nylon sutures or skin staples that are removed 6-10 days after surgery. If radiation has been given to the neck previously, sutures remain longer than if no previous radiation has been used. Two drains are also placed which exit the skin of the neck. These are removed 2-6 days after surgery when drainage has ceased.
Now for the personal info:
Neck dissection does hurt. I hate to tell you that, but it does. Take the pain killers they give you. Also keep your wound clean. The neck is a terrible place to get an infection.
It will change the way you speak, for a while. The right side of my mouth wouldn’t work correctly for a few months. Basically, I looked and spoke as if I had suffered a stroke.
Other things to expect are: There will be a tight feeling in your neck. You can help it by doing neck exercises after you are completely healed. Depending on how many nodes they removed, there can also be a strange sensation when eating. After the surgery you may experience a strong pressure in your head and face when you eat. It is caused by fluids that your nodes used to process. My doctor says that these fluids are triggered when you eat. Over time, your body will find ways to disperse this fluid more quickly. I rarely feel the pressure when I eat now, almost two years since my surgery.
The side of your face will be numb. This could also include your ear. Your skin could also feel super-sensitive. You may touch one part of your cheek and have the weird sensation that you are touching a slightly different part of your face, say an inch or two away from the actual place you are touching.
Overall, you will get through it and have little side effects in the long run.
This blog is for those who are, or have loved ones who are facing a neck dissection. I wish I would have been told some of these things before my surgery. It’s a surprise to find out you can’t feel your ear anymore.
Please leave comments if you have gone through, or may be facing a neck dissection and be sure to check out my award winning, adventure novel The Devil’s Backbone
JAMES BABB 
Hi Babbs
Over the pond here in Liverpool,England…Just to clarify to others that neck dissection does hurt.I,ve recently been under the knife,the final operation to a gruelling 8 months for base of the tongue cancer.
Nearly forgot to say,im 45 and a non smoker..!!!
This last op was my forth,not forgetting the 3 hits of chemo and 35 sessions of radiotherapy..Visited hell a few times along the way…sounds like we have more in common–a fantastic partner,my rock,my best mate.
So,whilst i surfing the net,i stumbled upon your blogg via google.
I was looking for remedies to try and stop the pain post op.I,m 3 weeks now,and there,s times my neck could explode with the uncomfort.I persevere,because thats what you do is,nt it.After chemo/radio this is lightweight,but nonetheless bloody sore…
Oh,best news was after radical dissection….I GOT THE ALL CLEAR….take care all,any tips i,d be grateful,..cheers and thanks.
Graham,
Non-smoker here too! Got my cancer at 38. I feel cheated, don’t you? LOL We didn’t even get to enjoy smoking and still got cancer.
Oh well, the way I look at it…if we had been smokers, we would have probably gotten cancer much sooner.
I hope your pain has lessened. I had another surgery after this blog and I can remember the pain all to well. Hydrocodone worked well for me, but made me a little sick. I also soaked a hand towell with rubbing alcohol and wrapped it around my neck. The cooling sensation helped.
Just finished another check up and also received the ALL CLEAR!
So far away, but we have much in common. I wish you the best and hope your strugle with cancer is over… for good.
James
I/m in Manchester, very lucky to be near Christies and Wythenshawe Hospital. Both excellent places. i am about 6 weeks post op on my neck dissection. The surgery involved the removal of a tumour on my tonsil bed and lymph nodes on the left side. (the cancer re-appeared after 20 sessions of Radio but gave me a few monthe of respite) .Skin and vain taken from my inner forearm to fill in the space left after cutting out the tumour, that in turn was replaced by a skin graft from my stomach, abouy 10 hours on the table. Luckily i had an excellent team and i hope this works. like you say above, i sound and look like i’ve had a mild stroke and can do a great impression of Kenneth Williams( don’t know why). I have trouble eating but my Wife cooks me tinned mince and soft mash, i enjoy Ready Brek and have a monthly supply of Stage 2 Fresubin, its got the consistancy of Yoghurt but is pretty tasty, wild strawb and vanilla at the mo, also plenty of Fortisip.Shaving is strange on the left side and it feels like i’ve been ten rounds on that part of the neck, its gradually getting less painful. I hope you both have a great future and it is nice to share the experience. Good Luck. Regards
Vince Ross, Wythenshawe, Manchester.
Thanks for sharing, Vince.
It’s great to hear your story, even if it’s filled with tough times.
People like us, those who keep going and vow to beat it, show others it can be done.
I wish you well, stop in and give an update soon.
james
I’m facing the choice of neck disection surgery for occult primary squamous cell in my right lymph nodes. Do I have surgery or radiation/chemo????? Has anyone done the radiation/chemo and NOT the surgery??? Bev
I’m sorry to hear what you are going through.
Although I’m sure things will be okay. Please read my post on “Can Cancer Be Beaten?”
I went the ‘disection’ route, so I hope someone else will post here and let you know their experience with doing radiation/chemo and NOT dissection.
You should probably(if you haven’t already) discuss your options with your doctor and the pros and cons of each route.
Some conservative doctors may choose to try treatments first, if the cancer is not too active.
Thanks for posting, and keep us updated.
I’m a Beverly too….with Squamous Cell, right lymph nodes, occult primary, diagnosed July 18.2011. I’m not sure why, but I only got a post recently and I haven’t checked this site in eons.
I would love to hear how you are getting along Bev. Sorry I didn’t check this earlier to tell you my story.
As for me…this is what I did, just in case this helps anyone….I’m now over 2 years with clear check ups.
When I was first diagnosed I was told by the ENT to see a surgeon, who like many of you said, just wants to do a radical neck dissection because, well, that is what they do…operate. I decided to see a radiation oncologist, also in Phoenix, AZ. and they suggested radiation…go figure. I ended up going to MDAnderson Cancer Center in Houston, TX. and that was the best decision that I made. Their team of 60 doctors decided that I should have radiation and no chemo and certainly no surgery. My team leaders comment (regarding chemo) was, “why should we poison your whole body when there is only a 15% chance this cancer started below your shoulders.” By the way, with 2 different doctors going down my throat just KNOWING they would be able to find the primary, they did not. So they radiated everything between the lower part of the nose to the top of my shoulder blades all around my head and neck, with extra emphasis on the right lymph nodes. My only lasting side effect has been a lack of saliva and I take medication for that. And honestly, I’ve learned to live with the lack of saliva and it’s not all that bad. I feel, for ME, it was better than a radical neck dissection. Now not everyone can take the Pilocarpine,(my spit pill I call it) but it works for me. I can’t eat everything that I did before and everything has to be moist, but believe me there is plenty of stuff in the world to eat, so I just pass on the dried out chicken breast!! LOL A little gravy or undiluted mushroom soup goes a long way to bring moisture to meat.
I now do my follow up visits at the Banner/MDAnderson facility in Phoenix…just a little more than a mile from my house, and I couldn’t be happier with the facility. They are in constant contact with the Houston main facility and their many doctors and they have all of my medical records.
I absolutely don’t expect to have any further issues with cancer and refuse to say that I am in remission. I’m CURED. In fact, the reason I don’t check this blog much is that I have simply moved on in life from my cancer. But since I got an email saying there was an update I decided to check in and it feels fine to be among friends and folks who have experienced the same thing.
God speed and good health to all of you. Bev
Thanks for telling your story, Bev! I love MDAnderson. They’ve been great to me.
It really helps others to hear stories like yours.
Thanks again!
I’m sorry to hear what you are going through.
Although I’m sure things will be okay. Please read my post on “Can Cancer Be Beaten?”
I went the ‘disection’ route, so I hope someone else will post here and let you know their experience with doing radiation/chemo and NOT dissection.
You should probably(if you haven’t already) discuss your options with your doctor and the pros and cons of each route.
Some conservative doctors may choose to try treatments first, if the cancer is not too active.
Thanks for posting, and keep us updated.
James
Thank you for your encourging words and also your blog. I was leaning toward surgery until I read this. Now I’m planning to see a cancer specialist and a radiologist first. The doctor who suggested surgery is a surgeon…go figure. I wonder if they might lean to their own speciality. In other words the radiologist will think THAT is the best treatment, hence I want to see a cancer doctor.
That sounds like a very wise decision.
Thanks for stopping in.
Keep us updated.
Hi James – Steve here from Newport Pagnell in the UK. Gave up smoking on March 11 this year and in June, a lump appeared on the side of my neck before we went on holiday. When we returned, we went for all the tests – cell sampling, MRI, CT, PET and whilst there is cancer in the RHS lymph nodes of the neck, they cannot find the primary which is a little frustrating. My neck dissection is booked for this Wednesday 17th August with a well renowned surgeon at Northampton General Hospital and then six weeks of radiotherapy hitting most points below the nose and above the shoulders so I’ll keep you posted. Must admit, not looking forward to it at all – especially as I was so daft to Google images for “Neck Dissection!!”
Steve,
Great to hear from you.
The situation you are in is frustrating. It would be nice to get it all over with at the same time, but your primary can’t be found.
It sounds like your doctors are doing the righ thing though. Getting those nodes out should keep it from spreading through your system. Then, that will give them plenty of time to find the primary and take care of it.
Expect this with Sugery
They will want your face and neck shaved, and you already know about the whole no-food-after-midnight thing.
They will start an IV, and then you will be taken to the surgical room. There, the surgeon will mark the side of your neck that they will be operating on. He should ask you to verify the side.
Then, you will probably get some warm blankets, and they will administer the NICE sleepy medicine through the IV. Goodnight.
You will probably be given a catheter after you are asleep.
You will wake up feeling not-so-bad. But as the medicine wears off you will start to feel worse.
They should have removed your catheter while you were asleep.
Your neck will be very sore. Just stay on those pain killers for about a week.
You will have at least two clear plastic tubes coming out of your neck. These are drain tubes. The nurse will need to clear the tube often. This is a little painful. They will hold the tube with one hand and run the fingers of their other hand along it while squeezing.
They will want you to be able to go to the bathroom and walk around, before they will send you home.
Going to the bathroom after having sugery and a catheter can be hard. Don’t get discourged if you have trouble. It may take a few tries.
You will have one heck of a scar, but it will fade with time.
Best wishes to you.
Keep us updated and let me know if you need any more info.
Thanks
James
Hi Everyone – three months after surgery now and healing well. Have been using Bio-Oil on the scar which has really helped in clearing that up. Jeeeeeezuz!!! That catheter!!!!! Woke up after 6 hours surgery and I felt like I could pee for England! Didn’t help that one of the nurses didn’t realise that I still had this thing in when transferring me back to my bed and it felt like I’d been stretched to porn-star length – it must surely have shown in my poor little eyes!!! lol!! Well, next day I was up and about – to the papershop and touring the entire hospital. 6 nights I was in and incidentally James, I only had the 1 drain, but did that take a few days to drain off. They decided not to do the radiotherapy as due to the intensity, it would have wiped out every salivary gland in my neck causing xerostomia, not a nice situation, so I am being monitored on a 4 week basis by my consultant and touch wood, after 3 months, nothing has come back and the primary hasn’t shown. I am now up to month 8 without a single cigarette and I never will touch tobacco again. I don’t think I have ever had such a close brush with death before in my life and I hope I am never in this situation ever again. I’d really like to thank you for this website James, it certainly helped me ready myself for what was about to come. For some people, it could be a fear creator, but I am one of those that would prefer to know what’s coming in order to be able to plan ahead for it. For anyone who is about to encounter a major op such as this, please have faith in your consultant/surgeon. They don’t let amateurs do these operations, only well-established professionals. Trust them, and DON’T sit on your arse feeling sorry for yourself the next day – get up OFF your butt and get the blood flowing around your system – you’ll feel so much better for it, and just as importantly, so will the people around you 🙂
Steve
xx
Dear Steve,
I don’t know if this will be helpful, but here goes. My husband was in great shape, then felt a lump on the R side of his neck one day! The Dr. took blood tests, a CAT scan, and finally a PET scan! Also a scope before the scans! They finally found the source buried deep within his Right tonsil!!! Has your Dr. looked there?? They only found it on the PET scan!! Since then, John has had 3 rounds of chemo and 35 radiation treatments!! A couple of weeks after the treatments were all done, the Dr. felt a couple of rogue lymph nodes and scheduled a modified R neck dissection! My husband will have surgery in 6 days!! :(. Good luck to you; I hope this helps you find the source of your CANCER!! God help us all!!
Hi Kelly
They did find it eventually in my nasopharynx hence having 30 fractions of radio and two intense five day sessions of cisplatin and 5FU. Touch wood, to this day I am now tumour free and get checked at the Christie Hospital in Manchester every 3 months. Thyroid was damaged down to the radio which is quite normal so now I am on 75mg Thyroxine daily which does help.
I hope that the surgery goes well for your husband. Keep us posted on his progress!
Take care
Steve
Steve!
I’m so glad to hear things are looking good for you.
It’s a tough surgery to go through, but thanks for sharing the FUNNY catheter story!
Steve, you are absolutely right…
There is no doubt, Cancer can change a person’s life forever, but we should not feel sorry for ourselves. We were not put on this earth to wallow in our own pity. We were put here to inspire others and live by example.
Sounds like you are doing just that. Good job.
Thanks so much for the update.
I wish you the best.
James
Hi James
Unfortunately, things went a little pear shaped since my last post. In September 2015, I started getting headaches which stemmed from the back of the neck, radiating across the top and front RHS of my head. You know that lovely Sternocleidomastoid muscle? How I miss that little fella! Tried acupuncture, physio and to no avail – still on 6 x 30/500 cocodamol per day. The pain was almost uncontainable so they even tried me on amitriptyline – wow, felt like 10 pints of lager in a table when you wake up in the morning! Severe pain coming from the right cheek where the parotid gland is, but no infection. Oh dear, it’s trigeminal neuralgia for which I am now on Gabapentin 6x300mg per day but it doesn’t remove the pain, only about 30% I would say. Severe sleep apnoea diagnosis hasn’t helped (over 32 times per hour!), can’t have CPAP machine as radio has screwed up my oesophagus and my stomach empties through my mouth and nose at night. So, this has also lead to a severe drop in testosterone, which as any chap knows is the bodily drug that gives us our desires.
So all in all, radiotherapy screws up your life in far more ways that you’re ever advised before you embark on a course of it. OK, I’m still here but I have a lifetime of pain to not look forward to! Hope everyone else is OK and doing well including yourselves James
All the very best
Steve
Hey Steve!
It’s great to hear from you, but I hate these things are giving you problems. Stay strong! There are people who are inspired by you, friends, family, and probably people you don’t even know. Keep busy and active. I don’t believe you’re the type to let things get you down, but don’t let it get you down.
I’ll cross my fingers and say a prayer that they get your pain under control!
James
P.S.
I’m sad to report that we lost Bob awhile back. He really seemed like a great guy.
Ask to try long acting Tegretol for TGN!!!
Bless your Heart James ! I have a brother who just went through radical neck dissection a few days back and the near 7 hour surgery he seemed to get through so easily but the Post op stuff has not been so easy. I was discouraged today when i heard how painful was the tube removal from his neck and I just felt like i needed to know what is coming next. It really helps to know and your Blog is a blessing and we thank you so very much.. Information helps the family to be strong cause the NOT KNOWING is so painful. You don’t want to look surprised or frightened when you are with them being Strong for him is the simple part watching him hurt is hell.
you know the greatest CHRISTMAS ever is knowing he is gonna be around for a long time to come. Am trying hard to thanks God for even the hard stuff he has to endure cause its like little miracles even the rough stuff like if he is feeling pain that means the nerves weren’t damaged..small celebrations. Seeing you THRIVE here on this blog inspires me and Thank you for the candid and earnest look at surviving this surgery.
Thanks for being a guardian angel !
Warm Holiday Greetings !
Tracy
Thanks Tracy.
I hope your family has a wonderful Christmas.
You have already received a great present. Your brother is on a healing path.
Tell him to hang in there.
take the pain meds, and a clean, wet rag on the neck feels great.
God bless you! and thank you for liking my blog. God never gives us more than we can handle. I’m sure you are helping others get through this with your blog. Not trying to be a salesman here but I think you would enjoy my novel. It’s a great adventure and an escape from daily life. I will be praying for you.
Having just lost my wife to pancreatic cancer, I’m always heartened to see that cancer doesn’t win every time. I wish you all well, especially those of you still to have the treatment, and a long and happy life afterwards.
Hi James, I am scheduled to have a radical neck dissection on Aug 1. They thought the primary was in my left tonsil, after having it removed and biopsied, it isn’t. So the primary is considered occult. I am pretty anxious about the impending surgery but it and chemo and radiation seem to be in the cards. Thanks for posting your experiences.
Hey Bob.
I wish you the best. While there is no ‘good’ time to get cancer, I’d much rather have it now than twenty years ago. It’s amazing how far cancer research and treatments have come.
Attitude plays such an important role.
Stay positive.
Take your pain meds.
You may find it hurts less to sleep propped up on pillows.
And hang in there.
And a cool, wet rag on the neck can do wonders.
James
Hi Bob,
I haven’t looked at this post for well over a year, so pardon me if I’m out of the loop. I wanted to comment as I also had squamous cell of the right lymph glands (2) with an unknown primary. That means it could be anywhere above my shoulders!!! Of course the most likely sites were the tonsils, larynx, back of tongue, but 2 separate biopsy’s of all of those places were negative. I went to see the surgeon here in Phoenix when first diagnosed, but I didn’t want a radical neck dissection when the primary could have been anywhere. So instead I chose to travel to MDAnderson Hospital in Houston to see what they had to say. I ended up having 8 weeks of radiation, no chemo and my neck intact. I’m almost 2 years post treatment and I’m still clean. I have had CAT’s or PET’s or physical exams every 3 months with no problems. I have a PET next month…that is always the definitive test. Yes, my saliva was/is compromised and yes that can be a pain in the rump, but I have my neck and that is the trade off I was ok making. 18 months from the end of my treatment I’m stronger than ever, working out 3 days a week and playing golf as much as I want. Life is grand.
Beverly,
So happy to hear that they were able to treat you and of the great results. In my case it turned out they removed 28 lymph nodes (26 of which were cancerous and quite large) I am on the mend from the surgery and begin chemo and radiation in early September. Thanks for your input and I pray you continue to thrive in your recovery and I will keep you posted as to the rest of my treatment.
Well, I want to start with thanking everyone for their input. After the surgeon released me to proceed with the planned radiation and chemo I went to see the radiation oncologist. He had done a CT scan and instructed me to get to the dentist and lose some dental problems prior to beginning treatment. The dentist determined that my teeth all needed to come out as I had pretty severe gum degeneration and the few teeth he could save could be problematic after the radiation. So, We came up with the money for the dental work (with help from (of all places) my medical insurance company).It took a few months to have my mouth heal to the extent that the radiation guy was willing to start.
Upon arrival for mapping , etc. he evidently finally reviewed the CT scan from months earlier and strongly recommended against radiation as the cancer had spread to my maxistinum(spelling?) and he was convinced that the original plan would leave me on a feeding and possibly breathing tube for the rest of my (short, in his opinion) life!
So he sent me to the oncologist that day with the idea that no matter what I had less than a year to live and probably 6 months! Meanwhile I HAD NO TEETH!
The oncologist started me on a triple chemo regimen and did CT’s every 3 weeks. The last 2 of which show zero detectable cancer. All traces ( including large tumors that the surgeon was forced to leave because of their location (carodid, etc.) were undetectable. So, we’re currently riding the horse that got us here. And, if nothing else, it would seem the chemo regimen has bought me some time and possibly some different options.
I HATE THE DENTURES. But, I’m gradually adapting. I mean, what are the choices?
I am so gald to have the ability to see the humor in this whole cluster…..And I am very fortunate to have my wife and others around me to keep my spirits up. And I pray that everyone on this site wins their battle. Just keep laughing!
Bob, that’s a tough road you’ve been on! I’m proud of you and I’m sure all of your family and friends are too.
It sounds like you are going to beat it. Stay on track, keep on laughing! and stay strong buddy.
I’m praying for you.
Hi James
Steve Bradley here again! Forgot about this blog, apologies! Got to April 2012 and they discovered another lymph node – returned to the op room for that to be removed. Then they discovered another one in the October. This time, my consultant said the node was sat very close to the hypoglossal nerve – one of the cranial nerves that controls one side of the tongue. Therefore, they would have to go back to the radiotherapy blunderbussing they discussed earlier. Well, previously, I had emailed a guy called Professor Chris Nutting at the Royal Marsden Hospital in London as I had some questions about the radiotherapy called IMRT – Intensity Modulated Radiotherapy where the beams can be shaped more to the shape of the tumour, thus preserving the parotid salivary glands as the submandibular and sublingual glands are pretty much destroyed by radiotherapy. We decided to get a referral to the RMH. Met Chris and his ENT guy, Peter Rhys Evans and within a week, I was booked in for more biopsies. Turns out that this “lymph node” doesn’t actually have any lymphatic fluid present and therefore is the primary cancer that couldn’t be found!! Wahey!! So 2 x 5 day sessions of Cisplatin and Fluorouracil chemotherapy followed by 30 fractions of H&N radiotherapy incorporating two more sessions of carboplatin and here I am several months later after having gained the all clear after my last PET scan! The RMH didn’t recommend the feeding tube that the last radiotherapy department said was vital. Just took the painkillers for the throat every 6 hours. Life was terrible and I had to have steroids to give me an appetite 3 1/2 months after radio ended as I had lost 3 stone due to having no appetite whatsoever. Long route to go down but now after almost 2 years since diagnosis, I am thankfully free of cancer and being constantly monitored!
Just a message to everyone also – if you’re not happy with what you hear from your consultant, get a second opinion – it is your right and entitlement. If I hadn’t gotten one, I would have been a lot worse off right now!!
Best regards
Steve
Hi Steve,
Great to hear from you again.
Terrible situation, but Awesome News!
I’m so glad for you.
Thanks for updating. It looks like many people are checking back here and it really helps for them to get updates.
Hi James,
What an inspirational blog! I found it just in time when my uncle is to be operated soon. He would be meeting the surgeon tomorrow.
He has had SCC of the tongue since Nov 2011 and has undergone 2 surgeries. Thankfully no lymph nodes were involved then. Unfortunately, SCC recurred in the sublingual space of the mouth some months ago without any lymph nodes involved, and surgery was suggested. But he was scared to death. So he went the homeopathy way. With little to no success there, he has reverted to surgical path again. And this time, the cancer is touching one of the nodes on his left side. In medical terms, Level 1 and 2 cervical, on the left side. I am not sure if this would come under neck dissection.
Can you help me understand if this would be a neck dissection?
Thank you!
P.S Some deep tissues of his left tongue is involved too. Will he has speech prob? I must say his family isn’t helping him stay motivated and that breaks my heart. I am the only one keeping his spirits high but somewhere down deep, I am frightened too, but sure that he will be fine in the end 🙂
Hi, Neha. I’m sorry to hear about your uncle.
You have the correct attitude and the rest of the family should adopt it too.
Cancer is a battle, a fight, with the main goal – to win against it.
When a professional boxer is getting ready for a fight, the support staff in his corner makes sure he feels supported and knows they are behind him 100%.
A fight with cancer is soo much more important than any boxing event could ever be, but you get my point.
I’ve said this before. There is no ‘good’ time to get cancer, but right now is better than at any other time in our past. The advances in medicine and treatments are amazing.
I’m no doctor, but I would suspect a neck dissection may be required. It will help keep it from spreading if it’s to that point.
Please give us an update in the future. Updates really help others who are going through the same thing.
If you haven’t done so, read my other post on cancer.
I wish you and your family the best. Stay in touch.
James
Thank you for the encouraging words, James.
He met the doctor today and yes, as expected, surgery is advised with MND (Manual Nodal Dissection). There is 1% chance he will go through with it tomorrow or on September 9th.
His wife just called. She was crying over the phone, saying half of his tongue would be cut. I don’t understand why his immediate family is creating such toxic environment around him..
If half of his tongue is gone, does that mean he won’t be able to speak properly?
I am going crazy here… and praying, of course.
Thank God for your blog!
He will not speak correctly for a while, but it will get better and with a little time it will become almost normal. I had about 40% removed during my second sugery. The tongue is amazing. While it will not re-grow, it does fill back in to a point. I’ve had five operations on mine and can still talk and eat normally. A few words give me problems once in a while, but nothing major.
He will have the most problems in the month after sugery. Parts of his face will be numb and he will probably speak like he has had a stroke. This will slowly go away.
Print off the blog post and some of the comments for him. It always made me feel better when I knew what to expect. I’m not good with suprises.
Prayer can help, but no amount of worry can fix this. I try to use my trials in life as examples of how a Christian can endure and be a good example to others.
I wish I could be there to encourage you all.
James
Dear James,
I really wish you were here. I can’t thank you enough for being a pillar of support for so many around the world. We desperately need more strong people like you 🙂
Uncle felt a lot more confident after hearing your words. I am sure he notices my efforts to keep him upbeat 🙂 Now, my next task is, to print your blog and take it to him tomorrow 🙂
Thank you so much!
Neha
Hi James, just wanted to say a big thank you to you for your blog. I was very very nervious before my surgery and radiation and your blog helped me a lot. I am over three operations, radiation and chymo and doing very well. Thank you again
Anne
Hi, Anne!
It’s great to hear from you. I’m glad you are doing very well. Those operations are always tough for us, but they make us tougher!
If you find time to post again, please do so. People who are facing cancer like to hear all the details of what each person has been through. They love to see that there are different options and places to go for second opinions. Most of all, everyone enjoys tips and things to look out for when going through surgery or treatments.
Thanks for stopping by, Anne. I hope you continue to do well.
HI in Gary from LIverpool England. Got possible neck dissection next Monday depending on what they find when they open me up. FNA indicates either brachial cyst or malignant SCC. Do you know how long before I can run or cycle after a neck dissection?
Hello, Gary.
I’m sorry to hear what you are going through. Let’s hope things work out well and no dissection is needed.
As you know, everyone is different and doctors give varying advice. You should do what your doctor says.
Here’s what I experienced. My doctor said I would be in the hospital four or five days but they made the mistake of telling me I could go home when I was able to walk the halls and use the bathroom. I was more than ready to go home, so I was up and walking the day after the operation and trying to get everything working in the bathroom again. I was sent home the following day (48hrs after the operation).
It was a terrible drive, about three days. Once I was home, I took it easy for about a week. After that, I was out doing things I probably shouldn’t have been doing which included building six wooden bookshelves.
I have a feeling you’re one tough fellow and could be back on your feet in no time, but try to take it slow and let things heal for at least a week or two. You don’t want any infections getting started.
Good luck and keep us updated.
So…… we stopped the original chemo regimen at 30 weeks. Still getting clear CTs. 2 weeks later we did follow up scans and a couple of lymph nodes on my mediastinem were growing pretty rapidly so we decided to try radiotherapy again after just 4 days there was a large cluster of tumors on my mediastinum and several in my left neck area where the surgery had pretty much gutted me. So the new radiation oncologist sent me back to my oncologist to try to get things back under control with more chemo. He elected to try Taxatere. After 3 weeks the tumors had grown in size and number and my cbc numbers were quite low wbc 1.8. So the Taxatere was out. Back to the radiologist and we decided to do a blanket bombing of the left neck to try to get some control back. They are considering running Erbitux (which seemed to be highly effective during the original chemo run). They map tomorrow and begin radiation on Monday. We are holding off on the mediastinum area until an absolute last resort as it will most likely leave me without a lot of important stuff in there!
Thinking of all of you. Continue the good fight.
PS: James, I enjoyed the book immensely. Very, very well done.
Bob,
It’s great to hear back from you. Hang in there buddy. I’m praying for you.
Thanks for the update. Lots of people are keeping up with your progress.
You’re one tough fellow. Keep it up.
Thanks!
James
Wishing you a total knock out of this cancer. BE GONE!!! I applaud your grit and determination!! Keep up the good work and know that we are praying for you. B
Thanks James.
I’m a nasopharyngeal cancer survivor that just found out he has a few enlarged lymph nodes in the left side of his neck, exactly 1 year post chemo/rads. Unfortunately it looks like my only option is to under modified radical neck dissection (left side). Not looking forward to the experience, but the knowledge you share is some of the best i’ve seen on the internet. Always best to hear first hand, rather than try to read some of the medical journal stuff.
In regards to the stitches/staples, how long till yours were removed? I have a vacation scheduled for 10 days post op, and my dr said i could still go. But i’m just trying to get a feel for stitches, swelling, etc. I prefer not to scare all the kids on vacation if possible. But i guess the way i see it, there is no better place to relax and heal than on vacation. Also, in regards to your swelling, what type of timeframe did you have for the swelling to subside? i’ve had lymphs removed previously, but it was minor compared to this and the swelling subsided quickly. Did you, or do you, do anything to cover your neck from the sun? I remember this being somewhat of a warning that was given after my previous ops.
Thanks again. You’ve done a great job keeping up with your blog and helping others. God bless!
ada
Ada Lo,
It’s great to hear from you. Thanks for joining the conversation and sharing your experience. You asked about stitches…Mine were the type that absorb and don’t have to be removed. I feel pretty certain you will have the same kind. They were clear, almost like fishing line, and couldn’t be seen because of the swelling. My swelling was minimal and was gone within a week and a half. The swollen area disappeared from the upper scar area first, behind the ear, and then continued down. The spot across my throat was the last place to have any swelling.
You are absolutely right about the sun! I’m surprised I haven’t thought to post something on this. All of that skin will be stretched and very tender. When the sun hits it, it hurts. It feels the same as going back into the hot sun after already having a sunburn or burn from a fire. For a few days I kept a bandage over it. It looked strange but allowed me to go outside without any pain. After it had started to heal, I used a damp cloth and it helped tremendously.
I don’t know how you handle pain medication, but it makes me a bit sick to my stomach. If you are traveling for your vacation, I would be sure to stock up with some type of motion sickness pills.
Be sure to let me know how everything goes and send a vacation photo!
James
Hey James and gang, Hope all is well. Well, they had me in for a pet scan after 8 wks break and the cancer had gotten into my lungs and was back in force in my neck and mediastinum. They basicly put an expiration date on me (6 mo’s=/-)! I had a follow up with the med onc. and we decided that I enjoyed the fight and waiting to die wasn’t my cup of tea. So we are waiting for approval from the ins co for more chemo. I handled the the first couple go-rounds pretty well so I can go until I decide that we are too adversely affecting my Q of L.. You are all in my prayers and I know the same is true from you.
Hi Bob
Absolutely gutted to hear that but you are a warrior my friend and you can tell them to take that expiration date and shove it. You’ll fight it and you are going to get past this. I’m now only up the road from you near Moston and I go to the Christie for my bimonthly check up. I see a guy called Professor Nick Slevin. Hopefully, we’ll bump into each other one day and this scary shit will be something of the past!
Praying for you Bob!
Steve
I’m praying for you buddy. I wish you the best. Hang in there and don’t forget that Attitude is everything. Stay strong and keep us updated.
I see nothing here for over a year??
Just thought I would add my 2 cents 🙂
I am in Australia, and when diagnosed with Squamous cell carcinoma in the base of tongue(5 months ago) the lump on my neck was so large (3 inches) the doctor’s here didn’t want to open me up. I had previously had the lump drained as part of a biopsy(which of course showed nothing). I tried to talk them into draining it again before starting radiation and chemo. They didn’t want to take the chance of any fluids leaking into the surrounding tissue.
In the end though, the 35 radio treatments plus 7 weeks of chemo made the lump physically disappear!
The radiation was quite a deal. Not during, but at the very end and for 3-4 weeks after. Using a PEG tube to feed got more than a little depressing! By New Years Eve though I was able to eat Pizza and drink a few Beers!
My doctors previously claimed the radiation and chemo would hopefully shrink the lymph to an operable size (dissection). At this point all looks good on the outside and inside with a scope.
Just waiting on the PET scan in 2 1/2 weeks to see if it’s really all clear.
If not, I will be up against the radical or modified dissection.
I sure appreciate the info others have posted and the level of details given.
It does sound rough, but I feel like I made it this far and a few more scars won’t be the death of me.
Keep fighting the good fight!
Cheers
Mike
Good luck to you Mike. I haven’t been on this site in more than a year, and it looks like most folks are that way….but it’s nice to know it is here if we are searching for answers.
I am in my 5th year of remission (although I prefer to use the positive term cured) and I’m doing well. My saliva has never come back and I still take my “spit pills”, but you really do get used to your new reality. If you are facing radiation however, it is something to be aware of. I’ve never regained the 10lbs. that I lost during treatment, but hey….that’s not a big deal either. As they warn you with radiation to your neck, your thyroid will crap out one day and mine did, roughly 4 years after treatment.
All in all, I’m happy with my condition, post cancer treatment, despite a few of the leftovers of radiation. Life is grand, I’m enjoying our granddaughter (another on the way), playing golf and happy to be alive!!! There is life after cancer.
James, next week my 77 year old husband is going to have a neck dissection on the left side of his neck to remove lymph node that is still shining up in the PET scan. He is a chemo and radiation patient so I imagine they are going to leave in the staples/stiches for some time. How long did the pain last after surgery?
Hi Mary. At 77, I’m sure he’s tough as nails but he will be in a lot of pain for a few days. I took my pain killers, they worked well and made me think I didn’t need them anymore so I would stop and then be back into pain in a couple hours. So make sure he takes his meds like he’s supposed to. Within a week, I was out in the workshop building bookshelves. God bless you. Let me know if you need any more info.
Hello, new here and have been on the cancer journey since 2/2017
Found a lump on right neck, sent for ultrasound n CT scan. Afterwards to am ENT for a biopsy then pet scan.
Scc of 1 lymph in left neck. Base of tongue also biopsied but no primary ever found.
Had 2 of 3 chemos, damaged my kidneys and 35 radiations.
After all that a small nodule was left over. ENT felt it was nothing more than scar tissue but removed it while stretching my esophagus.
Surprise, although didn’t light up on pet , it was more scc but wasn’t doing anything.
Now sent to UAB in Alabama and Thursday scheduled for a dissection to remove left lymph nodes
Hi Ada!
I pray your dissection goes well. Hopefully you have read through all the comments and know what to expect. Do they think the inactive scc was your primary at some point?
If you find time, drop back in for an update. I’d love to know how it goes.
Thanks
Thx 🙂
No, they are concerned that it was new however, I feel it was left over.
Yes, I read all the posts and found them helpful
Thank you
Hi, I don’t know if anyone is still posting here, Was just diagnosed with squameous cell carcinoma of my tongue and have to get a selective neck dissection along with removal of the caner on my tongue. I am petrified since I also have Lupus and Idiopathic Thrombocytompenia (immune system killing my platelets), and a on a lot of immune suppressant and toxic drugs for that. Since the dissection is on one side, will your face and neck be uneven? Like wobble neck on one side and tight neck on the other? How do you deal with swelling/lymph edema? Has that been permanent for anyone?
Hi Maria, I remember that petrified feeling. Some dissections can hardly be noticed. If they are calling yours, ‘selective’, I would feel better about it. We are all our own worst critics, so while you will notice a difference, new people you meet will not. I had swelling in one side of my face for a year. It would come and go and get worse when I ate. It was nothing major and did go away. Here’s some other things to expect (in case you didn’t see them in other comments). Wishing you the best.
They will want your face and neck free of any makeup, moisturizer, or perfume, and you already know about the whole no-food-after-midnight thing.
They will start an IV, and then you will be taken to the surgical room. There, the surgeon will mark the side of your neck that they will be operating on. He should ask you to verify the side.
Then, you will probably get some warm blankets, and they will administer the NICE sleepy medicine through the IV. Goodnight.
You will probably be given a catheter after you are asleep.
You will wake up feeling not-so-bad. But as the medicine wears off you will start to feel worse.
They should have removed your catheter while you were asleep.
Your neck will be very sore. Just stay on those pain killers for about a week.
You will have at least one clear plastic tube coming out of your neck. These are drain tubes. The nurse will need to clear the tube often. This is a little painful. They will hold the tube with one hand and run the fingers of their other hand along it while squeezing.
They will want you to be able to go to the bathroom and walk around, before they will send you home.
Going to the bathroom after having surgery and a catheter can be hard. Don’t get discouraged if you have trouble. It may take a few tries.
You will have a scar, but it will fade with time. (See my before after scar pictures)
You will not speak correctly for a while, but it will get better and with a little time it will become almost normal. I had about 40% removed during my second surgery. The tongue is amazing. While it will not re-grow, it does fill back in to a point. I’ve had five operations on mine and can still talk and eat normally. A few words give me problems once in a while, but nothing major.
You will have the most problems in the month after surgery. Parts of your face could be numb and you might speak like you’ve had a stroke. This will slowly go away.
I also soaked a hand towel with rubbing alcohol and wrapped it around my neck. The cooling sensation helped.
I happened accross your page and find it both informative and helpful by reading about other people’s experiences.
I have had multiple bouts with cancer. The first being discovered about 5 years ago on the base of my tongue, after chasing an issue with food getting stuck in my throat for about 2 years. I was treated with photon radiation with accompaning chemo before the Drs concluded “we got it”. The treatments caused a major loss of salova production and almost full loss of taste. I was on a complete liquid diet (researched and developed by my loving wife & evaluated by my dietician as a near perfect diet) through a Peg tube for approximately 3 years.
The 2nd was prostrate cancer discovered at a very early stage treated with 45 treatments of proton radiation theropy. The follow-up showed my PSA levels dropped form 7.0 before to an exceptional .05 after the treatments.
I have a hard time wrapping me head arounfd the third bout. More accurately, how we got to where we ar with the 3rd bout. I had so many follow ups with my ENT; with 1 time a month for the first year, once every 2 months for the 2nd year, every 3 months for the 3rd year and was on an every six month for the 4th year when my bubble busted. The whole idea (as defined by my ENT) of the follow up schedule was so if there were any indications of cancer returning we would know it early and adress it immediately. Well, about 2 years out from the treatments I started complaining about pain and pulling in my neck, A small nodule (about the size of a pea) had also started to develope in the neck. I was told each visit (as the growth continued to grow in size) that it was not uncommon so I was pretty comfortable with that answer until now (about a month ago) when all of a sudden my ENT was sayng he thought the cancer was back and that it was at stage 4. WHAT ?? How the hell did that happen ?? How did we go from “not uncommon” to “cancer back at stage 4 requiring radical neck surgery” as soon as possible? All of a sudden he was calling one of the best surgeons for that surgery and supplyng us his personal cell phone # with the invitation to call him personally anytime if the was anything we needed, etc, etc.
On the good side it expedited the process and a radical neck disection was scheduled the following week. The redical turned into an extended radical neck disection once they got in there but, the surgery apparently went well. We are now waiting on a consult with the onnocology to see if I am a candidate for low dose radiation since I have been radiated before.
The recovery pains from the headaches to the numb ear and cramping in the neck muscles are all there and hopefuly will lessen in a rasi=onable short period. the physical healing of the incisions seem to be healing well but, my team at the Mayo Clinic (who are pretty incredible) are taking a consrvative stance as to the timeframe to remove the sutures (because of the previous radiation treatments.
I guess this is to not only share and incourage others facing the cancer but. it also let me vent and encourage others to quest canned answers such as “not uncommon” etc. I should have been asking what was being done to evaluate the indications of possible complications. That may have led to the discovery of the new cancer much sooner and alowed for more/different treatment options.
I wish the best to anyone going through this.
Dear Darrel,
First of all, let me say how very, very sorry that you have gone through so much!! You don’t EVEN want to hear that, other than saliva loss, I’m really having no issues with my (former) cancer. Yes, sometimes I have an issue with swallowing, mostly dry food. My cancer was in 2011 and I did the same follow-up as you described, on a gradually declining basis. I had my initial treatment (radiation-no chemo) at MDAnderson in Houston, TX.
I will send many prayers your way, Darrel. ps: God bless your wife for going on this journey with you….I had a great husband who helped me.
Bev
Thank you for the encouragement. After several follow up surgeries it seems I am finally on a forward path. LOst the use of my right arm due to nerve damage but, they are working on that now. Swallowing has not gotten any better but, doing physical therapy for that now.
Hello again Bev,
I am still on the mend and having some real issues but, addressing them in priority order. I have read several posts about the “spit” pill and how it helps with saliva. I do not however, recall the actual name of the medication. Any help would be appreciated.
Darrel
Hi Darrel, Glad to hear you are on the mend….continued God Speed! The name of the medication I use is called Pilocarpine 7.5 mg. I’m supposed to take it 4 times a day, but usually take it just one time, in the morning.
Thank you so very much.