Previous Thread
Next Thread
Print Thread
#201109 12-28-2021 06:00 PM
Joined: Dec 2021
Posts: 4
PLFC Offline OP
Member
OP Offline
Member

Joined: Dec 2021
Posts: 4
Hello- I’m so happy to have found this group! I was recently diagnosed with tongue cancer. Had tumor removed on 11/18 and neck dissection in 12/14. 20 lymph nodes removed one had cancer, so now classified as stage 3. Starting radiation in mid-January. I’m so overwhelmed with the potential side effects of radiation (going to have 30 sessions). My doctors have set me up with a team of others from pain management, to feeding tube, to hydration, etc. Do most patients have all of these issues? I am also very curious about dental clearance. I’ve seen everything from extract any tooth that could be a problem in the future to just get everything fixed like you normally would. I’m just so nervous about it all and recovery time. Any insight is greatly appreciated.


PLFC
PLFC #201110 12-28-2021 09:14 PM
Joined: Mar 2002
Posts: 4,853
Likes: 24
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,853
Likes: 24
Welcome to OCF. What you are describing sounds like the normal course of events to most of us here, though I'm sure others will chime in after me with their insights to help you out because everyone is a little different. First, it sounds like you are in a good place if they have put all of this in motion right from the get go. Let us know where you are being treated.

So, the dental issues question. After you have had radiation treatments, the bone surrounding any teeth that were in the field of radiation is altered. Basically it has compromised blood supply or vascularization. The micro blood vessels within it get destroyed by the radiation to some extent. That in of itself is not the problem, healing of that radiated bone if you have to have an extraction or other bone related trauma, like in an accident where you jaw gets broken is a problem. The bone is less likely to heal properly after being exposed to radiation. So any teeth that have issues that are repairable, you should get taken care of before radiation treatments start, any that are way beyond repair and might fail after your treatments are potential problems, and they need to be extracted. If your soft tissues (gums) around your teeth have periodontal disease that can be a problem if advanced, most other things can be repaired without extractions. But the goal is post treatment not to have a dental problem that cascades into something more. Regular dental work after treatment is no different than before, fillings, crowns, root canals all can be done without issues as the years go by. It's the surrounding bone that must not be disturbed. And, you will work hard for a very long time (forever) to keep your teeth in top shape because not doing so opens you up to really bad things. I won't detail those here since that's an issue for if something goes wrong. But you need to take care of your teeth like never before. Before and after treatments. Visit your general dentist have everything looked at, fix everything that is fixable. If something is periodontally compromised and is a future failure waiting to happen, it should come out and heal before radiation treatment for the cancer. Time is of the essence here, you do not want to delay treatments waiting on dental issues.

Not every one that goes through treatment needs a feeding tube, and you will hear from other poster with their experience. I had to have one though I didn't want it. MDACC doctors said if I lost 15% of my body weight I would have to have one, and that was that. Midstream I had one put in. It kept me from losing a ton of weight during treatment and it was the right thing for me. I had it removed about three months after treatment ended, and for a couple decades I ate normally. Today that has changed, but that is not relevant to your question. If they are going to put one in ultimately some time mid treatment because you can't tolerate eating or are losing too much weight, please check back with me or others, and we can help you deal with that. But it's not an issue yet. Some institutions decide to put one in prophylactically, so it is there if you need it. Personally I disagree with that. It's a simple 20 minute procedure to put one in, and it can be done at any time. It's no harder to put one in around treatment 20 than it is at the beginning. Not everyone needs one. It's just important to be honest with where you are nutritionally and weight wise. Just remember that weight loss and poor nutrition slow down your healing from the damage the treatments are going to inflict. So eat a couple thousand calories of GOOD nutrition each day (not junk food) and perhaps you might avoid this. It is not a good idea to "tough it out" and lose weight and strength just because you don't want the feeding tube and are not eating well. Robbing your body of the proper nutrition that will aid healing is a mistake. It is no big deal for a few months to have one. Again, when that issue comes up, lots of us can help you with they types of them, and things you might ask your doctors to consider when choosing one design for you, and how to use it. Keep in mind that it is a temporary thing.

You will need some pain meds during treatment to keep that from becoming an issue. Even though they are opioid pain meds for the most part, you will wean off of them at the end of treatment, and done properly it is no big deal to quit them. If you are disciplined about staying hydrated either by mouth or your PEG tube, dehydration shouldn't be an issue that they have to deal with. Many people get lethargic and sleep a lot during treatments, and between that, the narcotic pain meds, and not keeping good notes on what you have eaten, your water consumption, etc. it can be easy to forget to drink, or even eat. You won't desire to, food will start to taste not the way you remember, or even unpleasant, and many people don't stay on top of it. Getting through this is a job. Keep a medication and nutrition diary each day, since it's easy to become forgetful during this process, and not take what you need, or take too much of something is a good idea. Your daily log of notes will keep you on track and in in the groove. On that note, take a note book to all your appointments. Make notes about what the docs say, and a list of questions that you have for them which will be plenty, and you won’t leave with unanswered questions in your mind. If they ask you about your eating, drinking, or meds, you will have records if it all to speak with clarity about what you have done.

Everyones recovery time is a little different. Lots of things factor into that. Your health before treatment; are you a couch potato or a gym rat or something in between? Are you 25 or 65 years old. Are you keeping your nutrition and some activity level up to par or not. Any one of these things will make the time that it takes to recover different. Some of this is controllable, lots of it is not. Don’t think about this, what's going to happen is going to happen. Your job is just to get through the treatments and out the other side of them with no evidence of disease. (NED). The rate at which your life returns to some semblance of normal is not totally in your control at this point. Just take it one day at a time. The future will take care of itself.

I'm sure others will chime in here with their experiences so you get the sense that this is a path well travelled by many. There are no dumb questions, so just ask whats on your mind. While your doctors should explain everything to you, often times they are rushed and do not, and you may not get the answers that you need. We are here to help fill in the gaps, or at least tell you what you should be asking them to get their best answers.

You will notice that many posters have a signature under their posts that shows what they have had done and more. When you get into the process, create one for yourself and it will make answering your questions easier if we know more about what place in all this you are in. You can edit it, an add to it at any time.

One day all this will be in your rearview mirror. When it is perhaps you will come back to help those behind you on the path with your new experience based wisdom. We all wish you a quick and complication free journey through this. Brian


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #201112 12-29-2021 07:38 AM
Joined: Dec 2021
Posts: 4
PLFC Offline OP
Member
OP Offline
Member

Joined: Dec 2021
Posts: 4
Brian, Thank you for your informative response.

I am being treat in NJ at Summit Health. I am with you on the feeding tube. If I need it I will get it but don’t necessarily want to just do it now if easy enough when needed. I just ordered a new planner yesterday to keep all of my appointments squared away will def keep journal of food/weight as well.

Thank you for starting this group. I know it is going to be so helpful. I will figure out the signature too.


PLFC
PLFC #201116 01-04-2022 12:43 PM
Joined: Aug 2020
Posts: 93
Likes: 14
Assistant Administrator
Supporting Member (50+ posts)
Offline
Assistant Administrator
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 93
Likes: 14
Hello PLFC. Welcome to the group. I went through a very similar process as you. I echo what Brian states above. I kept a journal for everything. I eventually made a daily spreadsheet and scored everything from medicine, to eating, to exercise, to meditation/yoga, to frequent contact with loved ones, faith building, etc. On days I scored a 90+, I gave myself a special treat (favorite meal, trip to favorite hike, favorite movie, buy myself something small, etc).

It was not easy to keep 2000+ calories a day but i did it. And, I was able to make it through radiation losing around 10-12 lbs without a feeding tube. I am 5'11" and started at around 157 lbs so not much to lose but still battled to keep my weight up.

We are here for you. Any questions. etc. Hang in there.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Nels #201123 01-08-2022 01:40 PM
Joined: Dec 2021
Posts: 4
PLFC Offline OP
Member
OP Offline
Member

Joined: Dec 2021
Posts: 4
Hi Nels,

Thank you for your note. You had me at spread sheet.

I am gearing up for radiation to begin. I’ve had consults with a bunch of drs from pain to speech/swallow to gastro for the feeding tube. I’m going to go ahead and get the PEG put in just in case.

I’m in the midst of dental clearance. I have to get two wisdom teeth out of all things but everything else was just redoing old fillings so overall not too bad. My dentist (a new one I found that has been AMAZING) has recommended using a mouthwash called Healios which seems to give some people relief from sores. Have you ever heard of it?

I’m probably starting radiation around 2/8 and am feeling better since the surgeries so hopefully I’ll be going in stronger. I’m temporarily back to work too so that’s been good for my brain.

I’m very interested about how long your recovery took after radiation to be able to get back to some normalcy (like back to work, travel, etc.). I KNOW everyone is different but just curious about experiences.

I have my journal and calendar for all the appointments so now we wait. Any other advice or insights are greatly appreciated.

Peggy


PLFC
PLFC #201125 01-08-2022 04:56 PM
Joined: Mar 2002
Posts: 4,853
Likes: 24
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,853
Likes: 24
It sounds like you have a very positive and optimistic attitude going into all this. That is going to serve you well, though there may be periods that test it. And you seem organized in your approach to things. You would be surprised at how that attitude will impact your journey through everything. We can’t change much about what is happening to us, but we can control how we respond to it. Stay organized, and keep dealing with things one day, one challenge at a time. Before you know it you will come to the end of this journey and be stronger as a person for having dealt with it.

Life is often a series of unexpected turns and curves, each one needing to be understood, dealt with, and gone though. Once people have done this, they often comment that further challenges seem smaller, less difficult to deal with, and their newfound internal strength keeps things in the future from being viewed as potential life derailing issues. Brian


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
PLFC #201126 01-10-2022 12:52 PM
Joined: Aug 2020
Posts: 93
Likes: 14
Assistant Administrator
Supporting Member (50+ posts)
Offline
Assistant Administrator
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 93
Likes: 14
Peggy

Your preparations will definitely help! Good to hear dental work is getting done. I ended up with a lot of dental work my first year or so after radiation (crowns, root canals, etc) and it continues today. I believe if I had some of that fixed before radiaiton, it would have made it easier. I have not heard of Healios but if it works, use it.

Good job on temp back to work. I think following my previous life and habits as close as I could, albeit usually somewhat reduced levels, really helped my mindset and recovery. I worked part time through my treatment. I did a few hours every day. I went 2-3x per week to the shop. My employer was extremely supportive and flexible and I am blessed to have a job that can support this approach. I exercised daily in varying levels from surf, to jogging, to yoga, etc. The 2 weeks following my last treatment were the toughest. I am sure you have been advised of that.

I was able to return to full time work about a month after my last treatment. And, I would say maybe a month or so after that I felt physically strong again (90%+). Food was the slowest to recover for me. I can now eat most anything except spicy. But, I can now consume the blander Mexican and Indian foods. That took about a year. Alcohol still tastes terrible but I don't really miss it. It's almost always water for me now.

Except for Covid, I would have been comfortable with travel all except the last few weeks of radiation and the two-four weeks following it.

The best thing you can do right now is eat. Gain weight before Feb 8 and during those first few weeks of treatment. Most people feel fine for the first 2-3 weeks of treatment. Keep pounding the calories. I gained about 7-8 pounds between surgery and radiation treatment. I was trying and felt bloated most of the time but it helped for sure.

Some foods I recall that I was able to eat all the way through - eggs, avocados, green beans, bananas (except last few weeks), french toast, pancakes, protein shakes, ensure (vanilla and chocolate), pudding, jello, simple soups, pot pies. Get yourself a Vitamix or similar machine. I used to dump avocados into many of the smoothies and shakes I made.

Keep us up to date. We are all pulling for you. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,853
Newest Members
Gulana94, MLowery, Josie, marywendy, Teri
12,943 Registered Users
Forum Statistics
Forums23
Topics18,080
Posts196,436
Members12,943
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5