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#38115 01-26-2005 04:48 AM
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Fran B. Offline OP
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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


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
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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


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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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


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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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.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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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


RHTonsil SCC Stage IV tx completed May 03
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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!

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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


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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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


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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Fran B. Offline OP
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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


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
Joined: Sep 2003
Posts: 1,244
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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


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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