Hi,
I'm not sure I'm doing this right but thought I'd try anyway. My husband was diagnosed 6/05 SCC in lymph nodes. We just found the primary in the base of tongue. He had a modified radical neck dissection and removal of 30 lymph nodes. We are going to start radiation soon. I'm glad I found your forum. Thanks for the info.

Hi,

I also had SCC at base of tongue and two lymph nodes. I am 11 months out of diagnosis and 7 months out of dsurgery and treatment. Hopefully we can answer any questions you may have. I can also give you my number s we can discuss any questions you may have.

Good luck,

Steve

I had 30 IMRT treatments first, SCCin the Pharyngeal area and a lymphnode on the left side of the neck. The IMRT was not pleasant but the side effects were not quite as bad as the doctor warned. I have a neck dissection to look forward to now as the radiation did not get rid of the node on my neck. petscan next week to make sure the primary is dead. Keep your chin up and stay positive. Family is a great thing to have in these days. Don't let him be around negative people, you either. Iam 41 years old, diagnosed at 40,and my 3 children and my wife and extended family have done nothing but lift me up. It is a pain to go through but some good things have already come out of my experience.

Hello dj

Welcome to the site. Sounds like your husband is having very similar treatment to me. I am now 27 months out of treatment and looking and feeling well. Radiation seems to be a very high mountain on day 1, but push on and it will be worth it. For me, one day at a time was the way I handled it. Boy, did I count them off. I congratulated myself every day and found laughter wonderful although I sounded very peculiar I imagine. I tried to find something positive away from cancer every day.

People here have travelled your path and are here for you both, caregiver and patient.

Best wishes and love to you from Helen

Welcome to the Oral Cancer Foundation DJ. You have found the most informative site on oral cancer on the web.
What type of radiation is your husband going to receive? I had ssc on my right tonsil and a neck disection also. I am over two years out from treatment. The radiation can be the roughest part of the treatment. I was lucky and had no side effects from any of the treatment. I hope this will be true in your case. You can post any question you can think of and someone with similer treatment will respond.
You are now part of a huge international cyber family that all have something in common, oral cancer.

I hope his treatment goes well and you soon will be the one offering support to new members.

All my best, Danny Boy

Hi,
Thanks for all the replies. It's nice to know that you all are out there. I do have a couple of questions. We had gone for a 2nd opinion and the Doc said radiation and chemo together was the way to go. I'm hoping that radiation only will be ok. The oncologist and radiation/oncologist are talking it over. I know that there's alot of different ways to treat this and everyone is different, but how do you decide which is the best? Thanks so much for being out there.

dj - there are different kinds of chemo. The one they are likely referring to is to make the cancer cells more vulnerable to the radiation. This is different than the kinds of chemo they give you for distant mets. Chemo and radiation together have good outcomes in the published data. I'm a proponent of hitting it with everthing that is available. This disease is very unforgiving of half-measures, and you want to eliminate it completly the first time around. While others may disagree with me, I'm an advocate of the biggest hammer type of treamtment...if you can tolerate it, let them do it.

Hi,
My husband's modified radical neck dissection was two weeks ago today. He went through the operation very well and last week really didn't have much pain. This week is alittle different. He is having much more pain. He can move his arm and shoulder well. He has numbness on the left side of his face and behind his ear. The Doc said this is normal. My question is - is it normal to have more pain the second week after this operation? His work is very physical and he's trying to get back to it. The doctor said he could do whatever he wanted to. I agree with you Brian, get the big hammer, but I'm also afraid of what he'll have to go through. Thanks for your input.

Hi DJ, Yes it is normal to have more pain especially if he has been over-doing the work. The other feelings are also very normal. Numbness will be there for a while as will some tingling sensations. Headaches might come off and on too. He should practice gentle stretching and not try to do too much yet. Healing from surgery takes 6 weeks.

Hi DJ,
Is your husband getting PT for his shoulder and neck? If not, he should. You are not supposed to lift anything that weighs more than a lb for the first couple of weeks after the surgery. Sounds like your husbnd may have been over doing it and has now gotten his shoulder misaligned. You don't want to put any more drag on that side than necessary. I used to put a pillow under my arm when I sat on the sofa to lessen the drag. Likewise in bed to elevate it if I slept on my other side. If he sits at a desk, make certain the cahir has arms. I had no pain with either neck dissection other than what was caused by getting my shoulder misaligned (winged scapula) which resulted in severe back pain.

Have him take it easy for a few weeks and find a good PT.

Take care,
Eileen

Has he been taking pain meds? Sometimes people don't because they "don't need them". Typically, the pain is from increasing activity. I would encourage him to rest and take it easy. People tend to want to get back to "normal" and over do it.

Hi,
This forum is fantastic. It's so nice to know that we are not alone. We visited the chemo doc and the radiology/oncologist yesterday. We are investigating several options. One of them is brachytherapy (as I understand it they implant a radioactive seed directly into the cancer site) and then radition IMRT. Another alternative is cisplatin and IMRT radiation together. Has anyone had brachytheraphy? What are the side effects like from that? By the way, my husband did get some more pain meds and He's trying to take it easy. He's just not the type to not be working. We have our own business and it's very labor (his labor) intensive. He's not doing as much as usual, Thank God. We do have several employees but he also worked right along with them. I think that mentally it's harder for him, and I know that we are only at the beginning and it's going to get worse before it gets better. I am praying for all of you.

djbattle,

I had brachytherapy after I had finished my regular radiation treatments. By then, I was already experiencing some pretty severe effects (mouth sores, swallowing difficulties, etc.) and the incremental impact of brachytherapy wasn't particularly noticeable.

The procedure started with surgery to implant the tubes into my tongue (the surgery was fairly uneventful in the greater scheme of things), then they inserted the seeds into the tubes. When you have radiation in your body like that you have to be in an isolation room -- I was there for about a day and a half and my husband could only visit for about 10 minutes because of the radiation exposure risk. Aside from a certain level of boredom, due to the "solitary confinement", it really wasn't too bad overall. I remember being very apprehensive about it beforehand, and then thinking afterward that it was much less painful (and stressful) than I had imagined.

Cathy

Dj, to add to what Cathy said, brachytherapy is different than the IMRT because it utilizes a radioactive "seed" implanted at the tumor site. The other type of radiation therapy you mentioned (IMRT) is radiation developed in a machine. Once you have finished a daily treatment, there is no residual radiation.

Any treatment involving radiation will cause some similar side effects. I would consider any and all treatment options that offer the best long term results.

You haven't mentioned where he is being seen, We like to recommend second opinions at NCC hospitals, these are usually larger hospitals.

Hi,
We are going to NYC (Beth Israel)to be evaluated to see if my husband is a candidate for brachtherapy. Our radiologist does it but he doesn't do it for base of tongue. We are three weeks out from the neck dissection. (they removed 30 lymph nodes, non were positive) He's going for his simulation on Tuesday, I think that the IMRT radiation will start after we get back from NY. Originally, back in July we went to Fox/Chase Cancer Center in Phila., they basically told us the same thing that the docs around here are telling us. I have been in touch with the doctors alot and have been very pleased to see that they are working together as a team to treat my husband the best way with the least damage to him. Our oncologist/hemotolgist along with the radiologist was the one who suggested we look into brachtherapy as an alternative to chemo and radiation together. We will be going over the side effects of radiation with our doc on Tuesday but I was wondering what things can I buy and have on hand for when he needs them. What works best for radiation burns on the outside and the inside of your throat. I know that he will always need a bottle of water, but what about skin lotion, toothpaste, mouthwash. I've read that you don't want anything with alcohol, but what worked best for all of you? and what kinds of things can I get right now to have on hand? Thanks for your input and concern.

There was a member here that had the same treatment , brachtherapy, and they were from NYC. I have not seen them on here since the end of his treatment, but I'll look for their email address and, if they wil, have them contact you by PM. He may of had the implants during the neck dissection, but I just don't recall. In any event, they know about the treatment.

And even closer, a friend of mine who occasionally shows up here, lives in PA and I will ask her to contact you, as she had brachtytherapy in addiiton to rad.

Dj
Some of the things you are going to need.

Pure Aloe to swish in mouth daily.
Gail is the expert on this.

Biotene mouthwash and toothpaste.

Biafine for use on the outside of the neck, daily from the start of radiation. Prescription.

Magic Mouthwash,numbs the mouth long enough for him to eat. Prescription.

Guifesine to make the mouth gunk a bit more liquid.

I should tell you that these are items we needed when conventional radiation was done.
As you go along and the final decisions are made you will be able to get more advice from those who are familiar with your particular treatment protocol.

Take Care
Marica

Hi Dj--

Get the 100% pure aloe gel (it should come in a brown glass bottle to protect from sunlight) -- GNC sells it. Use in mouth (it can be swallowed) and on neck starting NOW to condition skin. Barry started about 10 days before radiation thanks to a head's up from nurse at Hopkins. For mouth use about a tablespoonful, swish around and let trickle down throat. On skin apply like a cream. When it dries, put on the Biafine and their instructions say to start using beforehand. Cover sides and back of neck, throat, cheeks etc. This is more for external radiation but the mouth stuff would probably also be good for the seeds. You should ask the nurses what they find are major mouth impacts and how they handle them.

Get a super-soft Biotene toothbrush and Ultrafloss (sort of fuzzy soft floss). You may need fluoride gel trays made for treating teeth which means a visit to a dental oncologist -- not sure if these are needed if you only get brachytherapy. (??)

Did they test your husband's tumor for human papilloma virus? This is apparently not uncommon in tonsillar and base-of-tongue tumors and gives a better prognosis, the cancers are biologically different from those from smoking. My husband's tonsil/b.o.t. tumor is HPV-16 positive.

Gail

Another poster: Sabrina, received brachytherapy as well. She has not posted recently, however you can private message her.

Sabrina Profile

Last time we heard from her she was doing quite well and in the middle of several chaotic life events not related to cancer. (including moving, changing jobs, weddings, etc.)

Just a small correction--everyone else has given most of the list I would have made otherwise--if you need trays for flouride gel, you can go to a regular dentist to get those made, it doesn't need to be a dental oncologist though it is great if you can get to see one. Otherwise, it would be desirbale to find a dentist who knows about the effects of radiation on the mouth anyway, because you will need to have all your teeth in really good shape when you start radiation.

I too have scc on the left side of my tounge and floor of mouth. I have been dealing with this for 9 years and many surgeries. The MD now says I should have a modified radical neck resection with placement of trach and feeding tube(temp. shold be) Did your husband have any of these and if so how long did it take to get off the tube?

Hi Ann,
My husband had a modified radical neck dissection. Actually what they did was remove 30 lymph nodes on the left side of his neck. At the time of the operation we didn't know where the primary cancer was. Our surgeon had suspected that it was in the base of his tongue on the left side, because of the lymph nodes that had tested positive. He did some more biospies while he was in there and he actually found it where he thought it was. It is my understanding that base of tongue is somewhat down your neck and it's not a good place to operate. Our doc said he would have to basically take my husband's neck apart to get to the cancer and the side effects of the operation are not something you want to have to deal with. I believe this is different from the tongue and the floor of the mouth. His operation went well and the pathology report showed no cancer in any of the nodes they removed. He did not have a trach or feeding tube. We are going to start radiation very soon and it's my understanding that he may have to have a feeding tube depending on how he handles the radiation. Did you have radaition before?

i hd the neck desection as well good to read all this here as i had shoulder blhas too they had me in time creep up a wall with my hand its 6 weeks today and is better i do cleaning for folks so is good i started bk after a month of off time since the surgery. for me they found only a pin head in node so they a had remmoved the tumor frm the toungue and was a border line. im now at this point not needing treatment but am seen every month and a pet scan done in dec. im relived of the no treatment but wonder times gosh am i any safer then if i did get it thanks for yur talks it sure gives me more insight. rd

Hi everyone,
I don't know if anyone will read this because I haven't posted for a while. We went to NYC to find out about brachytherapy. Pretty neat trip, we were there on 9/11, his appointment was early on 9/12. He is not a candidate so we started chemo (cisplatin) and radiation on the 16th. He is supposed to have 6 chemo treatments and 35 radiation treatments. The radiation is regular not the imrt. First week done so far so good. He's tired but he can still eat and taste etc. He's got a sore throat now so I'm wondering how bad it will be for him by the time the end of treatment rolls around. We got the peg tube in the day before radiation started. I'm really thankful that he agreed to do it because of everything I'm reading. Does anyone know where I can get the biotene toothbrush and toothpaste?

DJ
The products you mention are available at your Pharmacy.
He has away to go , try and get him to bulk up as much as possible while he can. Make sure he drinks A LOT, if he cannot take it by mouth put his fluids in his PEG.

Red Doggie, am I correct in assuming you have not been offered any chemo/radiation? You say your lymph node only had a pin head of cancer but you had a tumour removed from your tongue?
Maybe I am just not reading this correctly...does anyone else think this does not sound right?
I realise she may not be the best typist but I am concerned.

Marica

Not many stores stock the biotene toothbrush, but you can order on the Laclede website at www.laclede.com You may find it satisfactory to start out with the softest standard toothbrush for awhile and then switch to the ultra soft biotene brush when the mucocitis gets bad.

djbattle,

With general field radiation, such as the kind you say your husband is getting, it's possible to feel reasonably OK for 2-3 weeks, but please be prepared for it to get significantly worse at some point beyond that. Side effects such as dry mouth, thrush, mouth sores and skin irritation can appear rather suddenly, so it's best to be ready just in case. Your medical team should be watching for early warning signs of any problems and giving you the necessary medications to help cope with them. Nutrition and hydration are absolutely essential to enable him to get through this phase, so it's really important to track his intake each day.

Cathy