Neck dissection/radiation

justwhatiwanted · August 2002

I have recently had a neck dissection to treat a Merkel Cell Carcinoma which had spread to the lymph nodes in my neck. I am going to start radiation to the neck next week, and am wondering what to expect. Of course I have gotten the list of possible side effects from the doctors, but think that someone who has gone through it will have a much better way of explaining it. I do realize that it is different for everyone, however as I am looking through these messages, it seems that the side effects are worse than my doctor is letting on to. (Typical.) Is there anyone out there who didn't have many problems with the radiation?

Also, it has been recommended that I follow these radiation treatments with chemotherapy, and although I have not had the appointment with the medical oncologist yet and do not know what type of cocktail they plan to use, I am wondering if there is anyone out there who had the radiation followed by chemo and could compare the two? Which was worse?

Thank you in advance for any information.

Heather

msnorberg · August 2002

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 · August 2002

msnorberg said:
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

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

msnorberg · August 2002

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

justwhatiwanted · August 2002

msnorberg said:
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 Mark,

I guess that the surgery is different with every person (although it would be so much easier to prepare yourself if it wasn't!)...
my problems with my neck are mostly stiffness, but physiologically I should at some point still be able to move normally. I'm only about 3 weeks post-op right now, so maybe I'm jumping the gun a little expecting to be back to normal so fast. I guess it's just hard, being 26 and never having been sick or had surgery before... I just expect to bounce back overnight or something. Patience is a virtue that I just don't have...

Heather

str8andlvl · August 2002

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 · August 2002

str8andlvl said:
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

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

msnorberg · August 2002

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

jaylene19 · October 2002

Hi Heather. I am 23 and have salivary gland cancer. I was diagnosed 4 years ago and have had 4 surgeries (one recurrence last February) and radiation (finished in May). The raidation was to my head and neck. Everything they warned me about happened, but it was certainly manageable with the right attitude. My throat and mouth were extremely sensitive to spicy foods (stay away from anything with tomatoes in it!!) and was very dry (still is). I had a fairly bad skin reaction as well. My skin turned bright red, and was irritated toward the end. The burns on the inside of your mouth can be the worse, in my opinion. At one point a burn sore in my mouth became infected (little did I know) and I was in severe pain for a week. In hindsight it was all manageable and worth is for the peace of mind that any remaining microscopic disease was eliminated. You will be fine, and we are all praying for you. Please email me if you want to talk: jaylene19@hotmail.com

Paul70 · March 2003

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.

deerbob · April 2003

Paul70 said:
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.

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

FPCdeacon · April 2003

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

Franatic · May 2003

jaylene19 said:
Hi Heather. I am 23 and have salivary gland cancer. I was diagnosed 4 years ago and have had 4 surgeries (one recurrence last February) and radiation (finished in May). The raidation was to my head and neck. Everything they warned me about happened, but it was certainly manageable with the right attitude. My throat and mouth were extremely sensitive to spicy foods (stay away from anything with tomatoes in it!!) and was very dry (still is). I had a fairly bad skin reaction as well. My skin turned bright red, and was irritated toward the end. The burns on the inside of your mouth can be the worse, in my opinion. At one point a burn sore in my mouth became infected (little did I know) and I was in severe pain for a week. In hindsight it was all manageable and worth is for the peace of mind that any remaining microscopic disease was eliminated. You will be fine, and we are all praying for you. Please email me if you want to talk: jaylene19@hotmail.com

Hi my name is Devon Fuller and I am 20. Recently I was diagnosed with an adenoid systic carcinoma I believe is what its called. I had the surgery and my upper right jaw bone and teeth were removed. They put in a prosthetic and I had major reconstruction surgery. I also had a neck dissection and had 2 lymph nodes removed there. I was on a feeding tube for 3 weeks, but can now eat anyting I want and it has only been a month and a half. I had major swelling as can be expected, and was very weak for a long time due to the extreme pain killers I was on. But life gos on, and to sit and feel sorry for yourself is not the thing to do. My doctors tell me that in the end, I will look pretty normal, and if Im not, a follow up surgery can be done to correct whatever problem there is. I start radiation monday, and Im not really sure what to expect, but I figure the worst is already behind me. And to all of u out there that might be reading this and have a similar case, u have a tough road ahead of u. I wont say that recovery is easy. Its not. But u can deal with it and soon enough, its over and done with. But as I sit here now, I feel pretty good, my face is numb in places becasue they had to remove 2 sensory nerves, and my neck hurts just a little. But overall, Im no worse for the wear. I hope someone out there can read this and take heart, especially someone my age, because its so rare for young people to get this. But just know that someone else has been there and can honestly tell u, there is life after this. And its not as bad as u might think.

mosbutler · February 2004

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

trchase · February 2004

mosbutler said:
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

Hi Maureen-
My primary was on the base of tongue and secondary was in the lymph nodes on the left side of my neck. I had chemo and radiation treatment. My last treatment was the end of July 2003. I was unable to eat from about the middle of June until mid August. I started eating soup, jello and yogurt toward the end of August and did not use my feeding tube after early September. I did drop a lot of weight (almost 40 lbs) when I quit using the tube because it was hard to match the calorie intake I was getting with the Novasource (great stuff by the way!). I did drink Ensure+ to try and boost my calorie intake. My mouth and throat were very sore until about mid September.

I take Salegen to help with saliva (I am not sure how much it helps). My throat is still hyper sensitive to spices and anything with alcohol in it. A side effect of salagen is it makes me perspire profusely from my head if I eat anything that is spicy.

My radiologist said there is a chance I will get some saliva gland functionality but it could be as long as 4-5 years before it happens if it does at all. She also said it could be a year or more before my throat if fully healed. I have scar tissue in my throat that causes food to catch periodically and I usually have to drink fluids to get most food down.

Good luck!

Neck dissection/radiation

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