Hi All; Here I am asking questions that I hoped I would never have to. As you can see by my profile, there has been a recent change in the status of my cancer, and surgery is planned for sometime in the next 2 weeks.
What I am looking for is the great hints and tips that all you travellers of that particular road know will make my next challenge a little more tolerable.
Thanks for you input,
Cheers, Fran

Fran,

I'm so sorry to hear you have to confront this again -- I hope this time around is enough to beat it for good!

I had my neck dissection before having radiation, so I can't comment on what it's like to have surgery on an area that has been radiated (but I know others here have done that and hopefully can let you know). All in all, I found the surgery experience much easier to deal with than radiation. I had enough pain medication in the days right after surgery to be able to handle it, and I was able to talk on the phone and start eating soft foods within a few days (although my mouth and neck were still full of stitches). I also had a superb surgical team, including a doctor who was skilled in plastic surgery, who left me with a relatively unobtrusive neck scar. Even though it's almost 6 inches long, it has blended in so much over the years that people who have met me after it healed usually don't know it's there.

The surgeon in charge of my operation warned me in advance that they wouldn't know ahead of time the full extent of what would be necessary, and that I could end up with some permanent nerve damage in my left shoulder and arm (although that did not happen in my case). They removed a significant number of lymph nodes, none of which proved to be cancerous. Since I also had a partial glossectomy at the same time, I think the biggest adjustment for me was getting used to my lopsided tongue and its effect on my speech.

Where are you having your surgery done? Have they told you how long you will need to be in the hospital?

Cathy

Hello Fran
I just wanted you to know how sorry we are that you have to go through this again.
Please know that we are pulling for you and sending lots of positive vibes your way.
Take Care
Marica

Fran, sorry to hear you are up to bat again. I had my dissection May 4, 2004. My surgery came after the rad/chemo treatments and included removal of about 8 oz. of muscle, 35 or so lymph nodes, and 3.5 hours of work on the part of the doctor. He spent and extra 1.5 hours due to radiation to scrape off tissue surrounding the carotid artery and nerves in the shoulder. I ended up with some lost strength and some continuing pain, but nothing worth talking about. I don't even take tylenol anymore. The surgery was way easier than radiation. It was also easier than my tonsilectomy. So all in all, it was not too bad. I could also eat, so that helped. I didn't stay in the hospital after surgery, they put me in the recovery room overnight because my surgery was late in the day. I went home the next morning so was never admitted to the hospital. It worked out OK for me. Also, it was good news that the tissue all showed no cancer. Will pray for your successful and easy surgery.

Dear Fran

I am so sorry that you have a recurrence.

I had a rad neck dissection prior to radiation and have healed remarkably well. Parts of the scar cannot be seen unless you look for it. Swelling was reduced by two drains while I was in hospital, stapels (not stitches) were removed surprisingly (to me) quickly, so that when I left hospital I had ceased to look like a member of the Adams family.

May I ask how the recurrence presented itself? Did you notice swelling or pain, or was it routine scan?

I hope the operation goes well for you please let us know how you are progressing. I'll be thinking of you.

Love and light from Helen

Fran, I had the dissection pre-rad/chemo. I had very little pain, mostly because a lot of the nerves were damaged. I am very close to three years out and most of the nerves have regenerated. The scar is nothing. I wear my hair up and don't even think about it. For a several months my neck was numb, and the day it itched and I could feel when I scrathed was a red letter day. More even than post-rad, I think patience is the name of the game after the neck procedure. The swelling will quickly recede and if you have any shoulder stiffness, physical therapy will help tremendously. While no surgery is exactly a walk in the park, this one is not one of the bad ones. You will do just fine!

Fran,

You've received some good advice in previous posts. I want to emphasize the importance of physical therapy for any shoulder pain due to removal of a portion of the spinal accessory nerve. If this happens to you, be sure to start exercising as soon as possible.

Without therapy, the pain and the loss of function just keep getting worse. (Been there, done that.) PT was painful at first, but I got a LOT better in a month or so. Now I have almost full range of motion, so it was worth it.

Ken

Fran,
I know this must be hard for you to go thru. My husband had his neck dissection before chemo/rad. He then had to wait to get better from treatment before PT which was about 5 months. The good thing is you will heal quickly from the neck dissection and will be able to get physical therapy much sooner. Dan has more permanent damage from scar tissue because he had to wait so long for PT. Take care and prayers and thoughts are with you and your family.
Debbie

Thanks for all your responses; I will try to fill in some gaps in information.
For the PT fans, today I talked to the physio who is attached to the Cancer Center and she will see me within days of the OK from the surgeon. My closest buddy is a physio in private practice so I know she will be keeping a close eye on my neck and arm right from day one.
The surgery will be done here in Sudbury in an acute care hospital where I trained as a nurse and have a few friends. The hospital called today already with my "date" Feb 2/05, and I go for pre-op work-up tomorrow morning. They are getting this rolling pretty quickly I think.
One of the things I wondered about was the teeth stuff that all we post rad people have as part of our daily routine. The Onco.Dentist called and said I should be fine for the time that is involved over surgery...but I've worked so hard to keep these sweet choppers, I want to be more than fine! I'll probably have my husband slip in my fluoride trays asap. I will have a tracheotomy so that will make some things a little different for a while.
From Helen's question about the recurrence...it seems to me that this particular lump has been present from the beginning, it receeded (what I wouldn't give for a spell check now) during radiation but returned after a few months as a nagging ache. As the ache got worse the Docs cranked of the level of diagnostics until finally the MRI caught it last week.
The fact that it was resistive to rads is not in my favour.
With the wonderful feedback from caregivers, I will encourage my husband to at least lurk on the boards. This support is so precious.
Thanks for the heartfelt responses,
Blessings, Fran

Hi Fran
If you are having a tracheotomy, make sure you take a wipe board and a couple of whipe off marker pens, you'll be writtng to much for a note pad. Is the surgery the same side as your dominent hand? You'll be fine, as Minnie told me it's doable...
Sunshine... love and hugs
Helen

Sorry to hear about this recurrence. I've got a spot on my tongue and go in to the docs next week, so I'm concerned too about recurrence.

In October '03 I had a hemiglossectomy and a radical neck dissection (left side). I had a 10 day hospital stay, 1-2 days in ICU. I had a tracheotomy and did no talking for a week, then slowly learned to speak (saying only a few words)with the trach tube for a few days before having it removed. I used a clipboard and scrap paper to communicate - the wipe board also is a good idea. My husband brought in his laptop computer so I sent a few e-mails to family away from the area, which was nice to do.

I was not allowed to eat or drink any fluids while in the hospital, but I think that was because of the tongue surgery, not the neck dissection.

For me, the troubles associated with the loss of tongue, and later radiation, were worse than the neck dissection area. In the hospital I had enough pain meds so it didn't hurt, but there is loss of mobility for a while and the numbness from my ear to shoulder still exists but continues to diminish with time. I didn't drive a car for about a month after surgery because I couldn't move my neck well enough. Although not on my writing side I did not have any pain or movement trouble below the shoulder area; but I couldn't sleep on that side for a while.

You didn't say where the recuurence is - in lymph nodes/neck?

I'm cheering for you - have strength!
michelle

Hi Fran,

I've been trying to find my previous post on this subject with no success so I'll see what I can remember. I've had two neck dissections, 4 years apart. The second was done on eradiated skin but it had had 4 years to heal. You want the surgeon that is doing this to have done a zillion of them and be the best plastic surgeon about. All those little stiches underneath are what makes for a good result. You want stitches, not clamps in the neck. I told me surgeon that 'I didn't do scars' and my surgeon did a marvelous job. I used Biafine cream on the scar for healing and also massage. Your PT can help you with that.

Do not let them take your submandible saliva glands unless they feel it is absolutely necessary because they are cancerous. We don't need our mouths any drier than they already are.

After the surgery, usually the next day, they will have you up walking. Support you arm lightly with your other hand under the elbow so you do not produce any drag on the bad shoulder. It also needs support in bed depending on how you lie. I had a stuffed bear my niece gave me that goes through all my surguries and is just the right size for resting my arm on. Once home make certain you still have a pillow to rest arm on whne sitting on sofa or that the chair you are sitting in has arms. If you start feeling any drag on shoulder while walking, support the arm. These problems go away after a few weeks of PT and you start getting your strength back. And of course it depends just what muscle if any they have to cut. They didn't have to cut any on me.

You are not supposed to lift anythin heavier than 1 lb for several weeks and don't do it or you may do permanent damage. You need to get hubby and kids to carry in the groceries and get their own laundry to the laundry room.

Both of my operations were relatively pain free and was out of the hospital in 5 days. Operation is quite long so make certain you are in a comfortable position on operating table. While you will look like you have been through the guillotine when you come out of OR, most of us have very little in the way of scars.

That's all I can think of for now. Will be thinking of you on the 5th. Speedy recovery.

Take care,
Eileen

Hello Fran,

Of all the treatments I've had, Surgery, radiation and chemo the neck disection was the least painful after one or two days.

I also have experienced a reoccurance in June of 04. Thats when I started chemo. one day a week for three weeks followed by one week off. I had scans in Dec 04 and the cancer didn't show up in the lungs at all. This after scans in June 04 showed multiple areas of concern in the lungs. The cancer in the original area (tonsil) was termed stable. It's a new life after this experience. The biggest challange is adapting to it.

I hope your treatment is successful and you have a quick recovery. You can win this battle. Were all here pulling for you. Please keep us posted and good luck on the 5th.

Danny Boy

Fran,

Over last 14 years, I have experienced surgery for oral cancer, open heart surgery and again surgery for oral cancer. The 2nd round - the seriousness was definitley elevated. If there are any tips I would offer, it's choosing comprehensive cancer treatment and equally as important having a strong support system (family, friends, church) - whatever it takes- humor or otherwise to fulfill your needs and build your strength to support this pending surgery with as much optimism as you can muster through all the above avenues. Prior to my most recent surgery, I realized the seriousness of my situation, but with the support of family, friends, church, prayer, letters, cards, medals, oils - a never ending list of thoughtfulness - began to build my foundation of strength to remain a survivor and to once again say opening "I'm back."
I may have missed previous postings - but assume you're having your surgery at a comprehensive cancer treatment center. I owe a great deal to the medical staff that performed my surgery and plastic surgery - they literally saved my life.
Finally, if you do have pain, allow the medical arena to manage it - I was not an advocate of taking morphine - but my wife insisted I allow myself to take what was necessary to minimize the pain - it definitely helped my healing process - although my memory of the days immediately post surgery are relatively "dull."
Hopefully, I can introduce a tad of humor at this time. I have a confession - as was, is and always will be, my wife is the pillar of my life and world. I could have continued, but Wendy, my wife is now spewing water over the keyboard like the Niagara River - my confession - she participates a million percent in every aspect of my life including the typing of this reply as my typing skills "stink."
We both wish you the best and will keep you in our prayers.
Ron

You wonderful people talk like you expect FULL recovery from me! How perfectly uplifting that is.
They did all the pre-op stuff today, so I can kick up my heels until Wed the 2nd.
I really appreciate the hints re communicating and shoulder support plus hints for the plastic surgeon who always works alongside my ENT guy they tell me. My surgery is on the right side, but I'm left handed, that's a small bonus.
I am still concerned about mouth care. Did it pose a problem for anyone?
Sounds like this next challenge is doable...I think I can ..I think I can.
Chugging along here in the cold cold north.
Blessings, Fran

Fran,

I hear your concern with mouth care. My teeth are doing fine after 6 surgeries, 3 requiring hospitalization. It's OK if you miss a few days of fluoride, brushing and flossing... at least, I can say that I'm doing fine and I've missed more that a few days along the way. You might want to take a bottle of Biotene mouthwash into recovery. A swish or two might feel pretty good, and an antibacterial rinse couldn't hurt.

Ken

Thanks Ken, my husband will have a travelling pack of the mouthwash and the oral balance gel for my use post op as required.
Part of my prep for this surgery is obsessing about some small things...controlling what I can, turning the rest over to the creator.
Amen, and thanks for all the positive support.
Fran