I spent 14 days in hospital in early June following 17 hrs of surgery for a stage 3 SCC of my lower jaw. Jaw resection, fibula removed from left leg for donor bone, free flap from left forearm to rebuild my mouth, skin grafts from my thigh to fill in the hole in my arm. All nodes clear (56 total) margins good, but they're doing 33 treatments over 6 weeks as a precaution.
I suffered a great deal post surgery both physically and emotionally, and I really don't know how I will make it through the radiation. It scares me worse than the surgery did, and that's saying a lot.
I know a lot of it is fear of the unknown, but I don't know how much more of this I can handle emotionally
Wayne
Wayne,
when they gave me the surgical option (which they didn't really recommend) that scared the crap out of me - 14 hrs fileted like a fish in the OR) no thank you!
Radiation was no walk in the park but you can get through it one day at a time. I am not embarrased to admit that I took anti-anxiety meds all through treatment and they helped me a lot to cope with things. You won't feel a thing during the radation treatment itself. It's more of the after effects of the radiation that will cause the most problems, but you just deal with them as they come. You'll have everything from fair days to horrific ones so just roll with it and you'll be fine. The worst part will be over in about 2 months (and you should have about 2-3 weeks before that even starts). So figure on 1 1/2 months of the worst part then it gets better steadily from there. By time 6 months passes you'll be feeling a whole lot better (and cancer free). Keep your focus on the horizon and your new cancer free life.
Wayne,
You are so lucky to have found this site before you start radiation. Here you will be able to find information that will help you through it.
I did not find this forum until 2 1/2 months out of treatment. I felt real bad then, I did not think I could take anymore. I was never told what was going to take place after treatment. The information here helped me make it through.
I am now at 6 months and like Gary said starting to feel better. I had to learn to take one problem at a time. I had so many little problems I thought it would drive me crazy!
Thanks to everyone here I am doing better.
Take care and keep reading.
Diane
Thanks Gary & Diane. I just got the call a 1/2 hour ago. August 9th is "D" Day. Now I've got another 10 days to fret about it. The waiting is driving me out of my mind, I wish there was something, anything I could do to make it just be done with
Wayne
Hi Dragan,
It will be no fun. But you just have to go through it one treatmetn at a time. Some days will be better than others. About 3/4s of the way through, you will want to quit, but you must keep it up. Make sure your skin is well hydrated. Xclair and biofine helped me a lot. But really, there is nothing to be afraid of. It doesn't hurt, it's just uncomfortable in the mask. Yourskin will get burnt, but with pain meds and xclair or biofine, it will heal quickly.
Steve
Wayne, Are you eating [swallowing?] now? Have you talked about getting a peg just in case? The radiation is tough - usually starting about the 3rd week- but you have alot of people here to help you get through it. Do you have a support system at home? If you have answered the above previously, I apopogize. I dont remember reading them. Amy
I am here to tell you that you will make it through! My dad finished his 30 radiation treatments 5 weeks ago and he is doing so much better! Yes it was a rough go. It hit hard about week 3 and he wanted to quit. The main thing I can tell you is to get pain meds. Also the peg would be a good idea before radiation starts as a back up plan for nutrition and hydration. Also keep looking to the future because like I said my dad is doing a lot better now and I can see his strength improving every day. Try to put some extra weight on in the next 10 days and know that you can do it and you're not alone!
Amy, I am swallowing, and I've been working really hard at putting on some extra weight I've managed to put on 9 pounds in the past three weeks (no small feat for a guy who normally wieghs around 130)
My primary support is my wife ( a HUGE help) and my kids. My Mother and sisters have decided to choose this time to attack my wife for imagined slights over the years, so that part of the support network is gone, and the attendant stress has not helped at all.
I'm trying really hard to keep positive, it's just really getting to me this past week or so. Thanks for the encouragement!
Wayne
Hi Wayne, Im Linda and I too am fixing to start my radiation treatments on August 7th. All I can suggest is you read everything you can on it from here and let all these wonderful people help you get through this, and if you have a question, ask here, no matter what it is, someone will be able to answer you. I totally understand the waiting, thats how i am. I just want to start this so it will be over and life can go on. Good Luck and lets keep in touch, maybe we can learn from each other.
Wayne,
I had the same surgery as you, had half of my lower jaw replaced with a bone from my leg, a little over three years ago. I didn't have any skin grafts though as the tumor was contained in the jaw. I also did a full course of radiation and walked through it............even if I was dragging near the end! I wasn't aware how sick it was going to make me, I found this site after treatment ended, so it took me by surprise. BUT, I took it day by day and made myself focus on getting through radiation, nothing else. I would suggest a PEG tube since you are a smaller build, I had one and would have been in trouble without it. Nutrition is so important to the healing process and it takes months to heal.
Are you having standard radiation or IMRT radiation? That also makes a difference in the side effects and the long term effects.
Sorry to hear about your mom and sisters, certainly isn't the time for all that. Put it out of your head and focus on the treatments. The simulation can be scary as they make the mask that you will wear for each treatment, so if you don't like being confined ask for an anxiety med to take before the simulation. The first week of treatments had me leaving there with my knees shaking, being confined like that shook me up pretty badly. By the middle/end of treatments, I could have fallen asleep on the table. We adjust. Take it one week at a time. I put a calender up on my fridge and crossed off each day after I came home from treatment. Seemed to work for me and I still have that calender!
Keep us posted so we can help.
Minnie
Wayne,
what Steve said about keeping your skin hydrated is good advice but MAKE SURE that it is clean and dry just before actually having the radiation treatment. Many creams, lotions and such can act as a "bolus" and enhance the skin damage.
Many of us, like myself, had nothing more than a minor sunburn from the radiation. Even if you have a bad reaction to it - it will be the first area to heal. Ask the radiation nurses for some "Radiacare" to put on it. They usually have it. When you start to get late in treatment it will get itchy -DO NOT scratch it. My MO gave me a steroidal cream and it stopped the itching immediately - I only had to use it a few times.
Wayne, I've found the radiation MUCH easier than the PEG tube installation (2 of 'em) and the Chemo. Radiation goes quickly. Are you getting a face mask for radiation? If so, I found that it helps to ask them to cut holes out for your eyes so you can see the machine moving around. Makes the time go faster, and I just couldn't stand to have my eyes forced closed for the procedures.
I also decided (and got it approved) to use an OTC lower mouth guard to protect my tongue sides from squishing against my many fillings (because of the dumb bite stick they insist on using) and burning/blistering big time. Gauze pads just weren't cutting it. Both the doc and the techs are amazed at how that guard has cut way back on the damage. Check Long's Drugs by the toothpaste section, put out by Doctor's, it's a teeth-grinder night guard designed for upper, but you can use it on the lower just fine. Easy to self fit and worth the $25.99 in cost.
You might also try damp washcloths to put on the burned areas of your face/neck after radiation to calm some of the burn. I like Biafine-RE cream after a treatment and just before bed (deeply hydrates the skin to keep it from drying/blistering/infecting), but needs to be washed off and totally dried before each treatment. Says Rx only, but I ordered mine online with no Rx.
And I was told that the worse of the radiation side effects would ramp up until about week 4, then plateua, then taper off as you heal after treatments. Mine have never been bad enough to need the use of the PEG tube yet. Sometimes painful to swallow, so go for Barcus Solution (numbs, ask your doctor), soft cool foods like lukewarm cream soups, yogurt, frozen yogurt, and liquids like Ensure or Jevity or similar with protein powder.
I have tons of hope and increased emotional energy after having reached the halfway point in radiation. That's the easy treatment. Surgery is much worse, in my opinion, and chemo is no walk in the park.
You'll make it just fine!
Sharon
Sharon,
Are you getting IMRT radiation or some other form of gentler radiation? I have never heard anyone in my three years on this board talk about radiation as if it were "easy". Certainly not anyone saying it was easier then surgery or having a PEG tube installed???? I just want to make sure we don't mislead anyone. If you finish out your radiation treatment with the obviously minimal side effects you are having, you are one lucky woman and I'm thrilled for you! But, that is not the norm with radiation treatment.
Sharon,
Like Minnie, I did a double-take when I read your post about radiation being easier than surgery. I re-read a couple of your other posts, and it sounds as though you haven't had surgery (because it wasn't a realistic option in your case) and are only a little way past the halfway point in your radiation. The vast majority of us who have completed both surgery and radiation can tell you that surgery was indeed a walk in the park compared with radiation.
Wayne,
You've gotten good advice from some of the prior posts, so just try to take a day at a time and use the support that your wife can give you when you need it. (As far as the relatives who are making things more difficult -- if they're not part of the solution, they're part of the problem and I hope you can either avoid them for the time being or else get them onto this site where they can learn what they should be doing to help you.)
Cathy
Minnie, While I am very glad to hear that Sharon is doing so well with radiation, I agree that it could be misleading. That being said, I think I remember Danny Boy saying that the radiation wasn't too tough for him. Hope Sharon continues to do well. Amy
Hi Wayne,
It was tough for John to get through the radiation but, as others have said, the one day at a time approach worked for him. Also, in his case, he was not too bad for about a week and half and then his throat and mouth got very sore. We were so lucky that they had installed a PEG tube because when the swallowing became difficult he was still able to maintain his nutrition most days.
One thing I always try to point out is to remember to ask for laxatives/stool softeners if they began to give you heavy pain killers like codeine or morphine. John suffered unnecessarily from very painful constipation near the end of the second week.
It seemed like John got a lot relief from the seemingly small things like rinsing regularly with water and baking soda, applying warm compresses of lightly salted water to his red skin, and finding a comfortable place to sit when he was feeding through the peg tube.
Reaching the halfway mark was a big help emotionally. If you haven't already, it would be good to direct your wife to this site because there may be times that she can get some very good answers to questions- especially when you're in the thick of the treatment.
Mary
thank you all for your frankness and encouragement. I'm so close to being emotionally wrung out that I'm not sleeping despite the anti-anxiety meds. I've never suffered from depression before in my life, nor have I ever had anything more serious medically than a bad cold, so this whole ordeal has been completely devastating. I appreciate you all telling it like it is, not necessarily how I "want" it to be, but how it is.
Wayne
Welcome to the club Wayne! I didn't even have medical insurance when I started the great adventure (thank you Joanna). I was healthy and had quite all of my bad lifestyle choices many years earlier. I was really gambling then. For most of us this disease has come from out of nowhere so we can relate to how you feel. Sleeping is good and you will do a lot of it because of the natural cancer fatigue effect.
The most trying time is the post Dx pre Tx stage.
Wayne, perhaps you would feel better to break this down into small parts. Basically, to begin, you will have a mesh face mask made. This is to keep your head positioned securely and to mark for radiation aiming. Then you will have a simulation which will generally take longer than your daily treatments will. There will be no discomfort, other than the hard table, for the first couple of weeks. Then your taste will go. Some people have a harder time than others, but as many people have pointed out, taking it just one day at a time helps immensely. When I was getting near the end of rad, I would look at the other patients waiting for their turn and realize how lucky I was, compared to most of them. Never forget that having radiation is NOT the most terrible thing that could happen to you. I am a believer in self-fulfilling prophesy and decided, as Gary reminded me, that I would treat this as a Great Adventure. I approached each treatment with a positive attitude and I think that helped. You really don't have much to worry about now. Treatment has been decided and all you have to do is show up. Never forget that these few weeks are a very small part out of your life. You can do this, Wayne, and we will be here very step of the way to encourage you. Sure, this is a mountain to climb, but it is not the Alps!
Wayne,
I have 7 RAD treatments left of my 35. Like Sharon, I really have not found it to be that difficult. The treatments themselves are pretty much a non-event to me as soon as you get used to the feeling of the mask and the bite stick. I have actually fallen asleep several times on the table, so it really hasn't been hard for me.
The side effects of RAD differ for everyone. I have really thick saliva and a sore throat that can be managed with 600mg of Motrin. I do not have any other sores in my mouth and my neck is in great shape. Truthfully, I think chemo is 500 times worse than the RAD. It is not a fun time, but you will get through this!
Good luck!
Hi Senator,
What is IGRT?? Is it a new type of radiation? Happy to hear you are not suffering the mouth sores, that was my least favorite part.
Minnie
IGRT is Image Guided Radiation Therapy. If you "Google" on IGRT, you will find a number of web sites that talk about this way of guiding the IMRT daily with an image of the tumor.
I have to wonder if that was what they were doing every Monday during my Rad treatments. I would be on the table a little longer during my first treaments on Monday morning to re- target the tumors. From what I have read, IGRT is more automated than that, and in some applications is a dynamic retargeting to compensate for movement of internal structures. Pretty interesting stuff (but I always have been somewhat a geek :rolleyes: ) The technology for improvng treatment just keeps getting better.
Good Health,
Chuck
Yep, exactly what Chuck said. They took daily images of the tumor to guide the radiation. What I was told is that way it was always targeting the exact same spot as the day before.
He completed radiation yesterday - check out his post on the "General Board" topic.