CSN Login
Members Online: 10

Base tongue and lymph gland op

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

I had a neck dissection 4 weeks ago to remove a tumour from the base of my tongue and removal of lymph glands between below right ear and jaw line. The surgeon gave me a choice of having a repair to the tongue with a section from my chest or the inside of my mouth. I chose inside of my mouth (he said he'd done 27 so far and only 2 failures) 

because  from my chest  it would affect my right arm. It would be stiff and painful. I watercolour and sew so didn't want to damage the nerves in my arm.  The op took 9 hours and I was in hospital for 2 weeks. I dont remember a lot the first week but can't remember anything too painful.  Once the drainage tube,  trache and feed tubes were removed I had a swallow test infront of an xray machine and I had a nearly perfect swallow. I cant eat anything too thick or chunky but manage homemade broths blitzed down to a thick soup, trifle, yogurts, ginger biscuits soaked in tea(yummy) and the general soft foods. So long as I keep my head tipped down I dont choke. The side of mouth where the 'flap' of skin with nerves and blood supply was a little sore and my jaw stiff. Doing mouth exercises I now can almost open my mouth as normal. I have a droop on the right side of my mouth but thats improving with excercise. I rub bio oil into my scar and its helping it to flatten at the ends.  This is only my 4th week after op and I feel 99% fit. I have an assessment later this month, I'm fingers crossed that all the cancer has been taken and I wont need further treatment. I had my treatment in the Churchill hospital in Oxford UK. They have trial treatment and are advanced in oral cancers. I've looked on the web and cant find any mention of the 'inside of cheek' anywhere, is this a neww 'discovery'

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

what a lot 2 go thru!  i can't believe u can eat already.  it's amazing that u feel so good already 2.  i wish everyone did as well as u.  keep up the great healing and u will b back to normal in the blink of an eye  Laughing  thanks for posting, stories like ur's r very encouraging.

dj   

jim and i's picture
jim and i
Posts: 1627
Joined: May 2011

Wow, so happy you had success. I pray you do not have to have further treatment.

God Bless Debbie

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

Sorry I had to say that.  Sounds like you've got a good recovery going.  This repair would suggest that the grafting they did to repair the surgical defect was fairly low volume.  This is what gave you the option of an in situ graft.  If more tissue had been required, a larger bulk would have been necessary.  This would have precluded the approach.  I had a similar situation a couple of years ago, to treat a cancer arising on the floor of my mouth, between tongue and teeth.  The volume necessary for repair required grafting of skin, several muscle groups, and radial artery  from my forearm.  Just too much to do any other way except for harvesting from chest wall, or leg.  Hoping this ends a successful treatment for you.  Radiation will be entertained, of course, depending on pathology report.

 

best to you

 

Pat

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Glad you found us here. Lots of experience with oral cancers. Since your surgery was 4 weeks ago, all reports should be complete and since you do not  mention any follow-on treatment, is that what has been communicated to you? Did they tell you they found clear margins on the tumor? Did they find any cancer in the nodes? What was the staging? Personally, I'd ring them up now rather than wait to know the status; if for nothing else, you can plan better if you need further treatments such as chem and rads. don

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

but you know, from UK.  Colour. Ginger biscuits.  National health service.  And interminable delays. 

 

Pat

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey Jack, it sounds like things are going swimmingly for you after a tremendously successful surgery, and now in a sweet rapid recovery.  I wish you the best for your continued recovery, and getting to a new normal.  Keep it movin forward!

PATRICK

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

hi Patricke, My op is successful but I still have to wait for my assessment with my surgeons on the 19th, I'm guessing by reading the posts on site that I'll probaly have to have 'mopping' up treatment but you've all come through it so will I...

 

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

6 weeks since my surgery ..neck dissection and tongue cancer removal, I find out today whether I need further treatmnt. I'm hoping not. My speech is OK, I can eat proper meals, My numbness is going away except for my ear. My scar is reducing and fading fast (using Bio oil). If I have to have radiation I'm afraid it will upset my swallowing, bring the stiffness to my neck back. At the moment I feel pretty well back to normal, even my crooked mouth is straightening. I will try Manuka honey UMH 20+ to sooth my mouth and hopefully keep ulcers away. I started to have a spoonful of cod liver oil and malt dont know if that will help it has vit E in. Any advice on how to keep radiation symptoms in check.

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I had a similar procedure but also had my epiglottis and uvula removed. They didn’t do any type of repair to the tongue so there was no tongue and cheek. I had to get that in there.  My surgeon told me about 3 or 4 weeks out that he wanted me to do 30 treatments of radiation just to make sure that he got it all. They certainly weren’t a walk in the park but I got through them without another trach and feeding tube. They talked about another feeding tube but I managed to stay hydrated and drank a lot of smoothies. That being said if they tell you they want you to also have radiation treatments to help assure you kicked some cancer ass, lace up the gloves and have at it. No big secret that the key will be staying hydrated and nourished. A bag of chips will not be on your menu and most all the soft stuff you’ll eat will not taste very good but in due time you'll look back and say F--ck cancer. I am all but 3 1/2 years out and I was just with my radiologist last Monday and he is impressed on how well I am doing and won’t have to see him for a year instead of 6 months. Life is good.

Good luck, keep us posted.

      Jeff

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

thanks Duggie reassuring from someone who's kicked it. I love success stories..I'm sure I will be one too . F..k cancer

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

Just got back from the hospital assessment clinic. My cancer had spread to more nodes than first thought. I had 3 cancerous ones the rest were clear. and the cancer on the tongue came very close to the 'clear' edges. So now dentist, hospital to put peg bag in and a mould made for my head for the radiation. 5 days a week for 6 weeks. Weekends and bank holiday free. They will help me through it with pain relief if I need it and ointments. Both sides of my neck will be targeted. I've just gone onto 'proper' food and enjoying eating again. I will eat as long as I can maybe that will be right through the treatment. I have a positive outlook in life so will do my damdest to keep the ulcers etc at bay. ^ weeks have gone by since my op and I've 4 weeks before treatment, the 6 weeks have gone by in a flash so I will keep that in mind. Sypmyons supposed to stat two weeks after the start of treatment so that leave only 4 weeks to finish plus recovery time. I shall do it........

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Glad to hear they have a plan and moving quite rapidly. Radiation is no fun. Most feel pretty good the first couple weeks then the side effects start in. There are MANY posts here about surviving radiation and the post treatment "glow" for some time after. Since they fitted you with a PEG you are all set to consume nutrition and hydration via the tube as most find it very difficult to do it orally about four weeks into treatment.

If you don't like being confined then let your doctor know now so they can prescribe some calming medication as the clamped mask experience gives nearly all at least some twinge of anxiety. Many pop a pill and all is good; others adapt and then get used to it while others slog through from day one unaided.

Good luck, don

CivilMatt's picture
CivilMatt
Posts: 2961
Joined: May 2012

Jackflash22,

We live by a timetable to start, measure our success with a timeline and never seem to have enough time.

We have lots of advice for what you are getting ready to go through, your time frame is close to correct, but you never know until you are in the thick of it.

It is no fun (or very little), but you do it to start with small steps, leading up to the difficult, but don’t let that scare you, you will do great and manage to make it through with amazed bewilderment.

Good luck, don’t forget the Lorazapam, the music, drinking lots of water , swallow, swallow, swallow, etc.

Matt

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

thanks Matt, I do like to hear from folk who have come through the other side...

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

Does everyone have a mask made to fit their face and fastened down so you cant move. It sounds scary. I go tomorrow to get my made I think its an open mesh like structure which I can easily breathe through but still don't like the idea of being fasten down. i'm claustraphobic in tight places or crowded transport but in a large theatre all to myself maybe that will be OK its only for about 15 mins. I've invested in Manuka honey 24+ to help if I get ulcers I have read so much about its healing properties almost a miracle cure for ulceration, burns, wounds, gingivitis etc. It was pricey but if it works it will be worth it has anyone tried it. I bought the genuine stuff from New Zealand. Apparently honey has been used for wounds since early Egptian time centuries ago.Probably goes along the theory that spiders webs stop wounds bleeding and mould from bread was used for pennicillin, many of the old wives remedies are coming back. Maggots eat out poison in ulcers, leeches being used again and the one I like is seeing people with their feet in a bowl of water and small fishes clearing off the dead skin.  I wonder what other old remedies are coming back perhaps our ancestors knew things we don't. Anyway back to my mask I shall feel like Hannibal Lecter in it. I have another appointment to visit my dental surgeon at the same hospital he was after my back teeth before I had the op but I said couldn't he wait and see I might not have to have further treatment so he let me off then. How many of you have had to have teeth out. I've always looked after mine and I dont smoke. I have a lot of back teeth with mercury fillings from the 'old' days. I'm also having a PEG tube but they said I may not need it just a precautionary. I'm glad I dont have to pay for my treatments this is where our NHS comes in everybody gets the same chance. I have a team of about 8 different specialists and they stay the same all through and the support of Mcmillon cancer nurses, and if I need I can get a grant for 'extras' like clothes if I lose weight, cold weather bill help etc. I'm a senior citizen so live only on my pension which just about pays my houshold bills. I also get free transport by car to the radiation app'ts. I expect some people think our NHS isn't that good but I have had 3 major ops in adult life and they have been wonderful. They keep you in hospital longer than other coutries but I guess thats a benefit too. 

 

CivilMatt's picture
CivilMatt
Posts: 2961
Joined: May 2012

Jackflash22,

You touched on many different subjects.

To begin with, you may want to start a new thread with your questions, especially your mask question.  That way you will get more responses.  Many people will simply gloss over this post and not know your distress.

I had to take a Lorazapam before  each radiation treatment.  I did not the day I had my mask made but wish I had.  It is really a fast and easy procedure.   It felt like a warm wash cloth on my face.  The techs will be close at hand to talk to you and let you know you are not alone.

If you really need meds you better call your doctor right now for tomorrow.

Matt

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

Thanks Matt I do ramble from one subject to the next. I have diazapan if I need to calm myself I try to only take one in dire circumstances.  My grandaughter will drive me there in case I get nervous in the waiting room. Do you suffer from 'the unknown' nerves and then wonder what you were worried about. One place I always have to take one is before I go to the dentis, I hate dentists although mines never hurt me yet, I think thats because i'm so relaxed with the diazapan I sit still and hardly notice what he's doing. I dont like the look of the hospital dental surgeon, he's probably  really nice and gentle but I get the feeling he cant wait to remove my teeth. I've always taken pride in my white teeth and kept them in good condition going to check ups regularly and dental hygeine. Oh well heres to the next stage..........

CivilMatt's picture
CivilMatt
Posts: 2961
Joined: May 2012

Jackflash22,

My mouth has 28 teeth (never had wisdom teeth) and the back teeth are full of fillings and 3 caps.  My teeth were deemed ok when I started so no additional dental work was required.  My rad onc even asked for a personal call from my dentist to assure her of my dental health before rads could even start.  Currently, I still have all my teeth and everything seems to be ship shape.

I generally do not have trouble with anxiety but cancer tried me out in ways I could not fathom.

Good  idea having someone else drive.  Remember just take this journey one step at a time.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

apprehensive over the mask.  Getting it made wasn't a big deal for me, it felt like a warm wet washcloth being put over my face.  They asked me if I was claustrophobic, and all I could tell them is that I wouldn't want someone laying on my face....I...like Matt...had Ativan (Lorazipam) everyday before rads, so tho I didn't like being clamped down, I generally dozed through the treatment.  The only drawback was my husband had to take me and bring me home.  I was too stoned to drive myself. 

I had Manuka honey as well, for mouth sores.  But when the Onc offered me a bottle of Mugard, I ended up using that instead....it's a preventative, and really worked in simply not getting any mouth sores in the first place. 

I also got a PEG tube before treatment started, because I was thin to start with.  I never used it one time during radiation....it only became necessary with the adjuvent chemo.....so you very well may make it through without ever needing the tube.

I had dentures before I started treatment, so didn't have to do all the dental stuff so many other have to do before getting started on treatment....

p

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi J Flash,

Just a note to say welcome and sorry you had to join us. I happened to name my cancer "Jack" after Jack Nicholson from the movie "The Shining" ;)
There's a lot of good info and support as you begin the journey and you've gotten some great advice and tips already. 

You didn't mention it but do you have someone there to act as caregiver? Either way, make a list of family and friends with phone numbers just in case you need assistance. I was blessed to have my partner in life Marcia throughout my journey. I know I couldn't have done it without her. 

Positive thoughts and prayers as you begin your journey.

"T"

 

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

I have a partner but he's nearly blind and has a phobia about illness and hospitals so couldn't get him to visit me the 2 weeks I was having the op and recovering, he lost his daughter to ovarian cancer last year and watched her going down hill rapidly. start to finish 3 months. I have a very supportive family and friends tho'. He was very emotional when I got home.

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

I called my neck lump Gerald after a friend with a lump on his neck, his was harmless but always fancinated me when I spoke to him.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Not a lot to say that hasn't been said already....

Welcome...

Thoughts & Prayers,

John

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

getting my mask fitted

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

WOW!  that mask is LONG!!!  mine only went below my chin.  i feel lucky...lol. 

dj

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

this went down my chest I couldn't move an inch, my granddaughter and I had a laugh, she said I can take it home after and decorate it for a wall hanging, I thought of King Tut'. They put a little tattoo on my chest too and I had a CT scon with blue dye and they did some marking and once they study the CT scan they can make a plan. My treatment starts 19th next month.

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

there was actually a post on here w/pics where people decorated their masks!!  so, tell your granddaughter, someone else on here thinks like her...lol.

dj

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Initially where I began prepping for treatment locally they made the mask and it barely touched my shoulders. They did the tattoo dot on the stomach right around the diaphram. After a 2nd opinion, I ended up choosing John Hopkins and had to go through the mask making process again. That mask covered my shoulders down to my chest. There was also a mouthpiece built in that held my jaw in position. When I went for the simulation run the day before rads started I was taken back by how tight it was. Like you, I couldn't move an inch!  It was a little unsettling but I managed. Music helped a lot. 3-4 songs and I was done. 

Between the mouthpiece and the swelling I found it difficult to breathe so I began using Afrin 30 minutes prior. It opened up my sinuses and helped a lot. I still have my mask. I need to find someone with a shotgun. I want to blow it to itty bitty pieces with a 12 gauge ;)

"T"

jackflash22's picture
jackflash22
Posts: 261
Joined: Aug 2013

That would be therapeutic we could line our masks up along a fence  then stick a face of the most disliked politician or whatever oand you could blast them. just lately some of our government are sucking the life out of us. 

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

...we've had many discussions on here on what to do with that mask once treatment is over.  Some people get arty, and make something with it....myself....I wanted to take mine home and run over it with my Jeep.  No matter what you want to do with it when treatment is over....it's going to be your little buddy for 6 weeks. 

Spooky looking, aren't they?

p

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Mine was like yours also..., came down to almost where the port was inserted..

JG

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network