Neck dissection/radiation

Heather,
Where is your primary site? My primary cancer location was on the right side of my tongue which spread to lymph nodes in the right side of my neck. After surgery, radiation was applied to both mouth and neck. I don't know which radiation zapped by saliva glands. The mouth radiation caused burns on the left side of my tongue. It was a difficult process, but not unworkable. The doctors were honest with me concerning what I could expect. You can check anyone's story who has it posted to find individual cases. Keep in mind that all cases are unique and specifics may not be the same for you.
I wish you well in working through your treatments.
Mark

justwhatiwanted said:

Mark,

I have an unknown primary, so they will just be treating the left side of my neck.

Did you have a neck dissection also? If so, how is your range of motion in your neck now? Does it loosen up, or do you permanently favor that side?

Heather

Hi Heather,
Yes, I did have a neck dissection. The lymph nodes were removed. To replace the tissue my pectoral muscle was brought up to my neck; so I don't have normal use of that muscle anymore. My range of motion in my neck is probably about 95 percent of normal. Sometimes when I am pulling down with my arm, the pectoral muscle contracts and pulls down on my neck. For the most part though, I don't have problems in that area.
Mark

Hi Heather,

Before I was treated for my squamous cell carcinoma of the neck my radiologist and oncologist decided only to treat me with radiation as "there is no statistical evidence supporting an increased success rate using a combination of chemo and radiation vice radiation alone."

In retrospect, the radiation was pretty tough. I couldn't imagine doing both but I guess every case is different.

Jeff

justwhatiwanted said:

Jeff,

Yes, I have found the same information as you have given. The oncologist wants to do the chemotherapy, but when I asked what data he has to support his decision, he stated that he really doesn't have any. Basically he wants to do it almost as a "precautionary" measure. I am thinking about turning it down. I have six weeks to decide, though, so I'm open to input.

Heather

Hi Heather,
Although it was available, my oncologist did not recommend chemotherapy. He also said that survival rates were no better with chemo/radiation than with radiation. Radiation was a precautionary measure for me. My surgery margins were clear, but narrow.

You may want to try getting opinions from more oncologists. Also for your neck movement, have you been working with a physical therapist?

I am really sorry that you are having to go through all this. I was 34 during my ordeal. I remember thinking the night before surgery, "There must be some mistake. I've taken good care of myself with basically healthy habits. I cannot have cancer."

Take care, Heather and keep us posted.
Mark

Dear Heather,

My cancer was discovered in early October of 2002 and I had a malignant growt removed on January 16, 2003. Soon afterwards I started radiation treatments five days a week. I have completed 20 treatmens and still have 15 more to go. To date I have totally lost my sense of taste, very thick saliva and some difficulty swallowing. I find it very diffult to eat but force myself to do so. I supplement my diet with Ensure, Boost, etc. I am also experiencing a lot of heart burn. As far as I know I do not have to have any chemo. If you should like to talk you can reach me at pbower@cfl.rr.com. I also have a web page on the network. Pleas feel free to get in touch.

Hi Heather - I was biopsied in April 2002 after going through a couple of months with a sore throat that wouldn't go away. The biopsy revealed cancer (squamus cell) on the epiglotis. After 6 weeks in the hospital (due to complications in my health unrelated to the cancer) I went home, but had massive surgery in July 2002. I had my entire voicebox removed, along with much of my lymph node system in the neck. There was also some growth on the back corner of my tongue that had to be removed. 16 hours of surgery!
I tell you all this to give you hope, believe it or not! After some so-so recovery at home, I started both chemo and radiation therapy at the same time. I can't remember the name of the chemo cocktail, but rest assured that a good oncologist will explain why he's prescribing a specific medication. I had radiation mon thru Fri for 7 weeks. Like I said, I had chemo at the same time, though only on Weds, and always before radiation. I think that was more of a scheduling thing than a medical reason. At the end of THAt day I was whipped, let me tell you! But the radiation was a piece of cake. In my case, I layed there for 20-25 mins. The actual treatment is only about 7 or 8 mins, but it's getting on the table, getting positioned, and the repositioning of the radiation shooter as it rotated around my neck. It was not like an MRI, where it's real noisy and you're in a tube! This was relatively low noise machine. I used to listen to a CD player they had in the room!
As far as which is more effective... again, a good oncologist (one for each treatment) should explain the risks/benefits of each treatment. Ultimately, it was my decision, but I believed then (and I REALLY do now!) that both treatments were the key to my going into remission.
My treatments ended in late Oct, 2002. I know it hasn't been a long time since then, but I've had two follow-up visits (Jan and just yesterday) with my surgeon and the two oncologists. Both times my CT scans and bloodwork showed that there was nothing there! YES!
I probably bored you with all of this, so please excuse me. Today is the first time I got on this site, and you're the first person I replied to on here.
Take care, Heather, and good luck to you! FPCdeacon

deerbob said:

Hello Paul, Heather and everyone,
I'm new to this site. My name is Bob and I am now 4+ years out. My primary was discovered in the base of tongue with mets on posterior naso-pharynx and 1 lymph node. Treatment was neck dissection/radiation/chemo. All checks have been negative since initial treatment. I am beginning to feel like a survivor. I'd be happy to discuss my experiences and describe how life has changed since treatment. Normal is very different now but life is good. I would also welcome any information anyone may have on the long term effects of radiation therapy. Thanks.
deerbob48@hotmail.com

My husband is post treatment 6 weeks tomorrow. He had 6 chemos - cisplatin and 8 weeks radiation. He has terrible dry mouth, still has sores, and cannot eat. He has a feeding tube. What was your experience, how long before your mouth was no longer sore and when were you able to eat.
Thanks
Maureen