Had a biopsy the day it was discovered when I went to get wisdom teeth checked for pre op... and back Benin so that was 18 months ago Today will be my third appointment check up. Been taking photos regularly, stopped smoking the day I was told which has been great for me and also made me stop smoking weed. The area has spread a bit , but will see today. Thanks for the reply. Means a lot 🙏
I just went thru surgery for SCC on my tongue (removed 50% and rebuilt it with forearm skin) and lymph nodes (removed 18) on 4/1/20. I also went thru 30 days of radiation treatment completed on 7/8/20. I experienced both a hairy tongue (my arms are hairy) and a weak shoulder. Being young and active will help his recovery. For reference, I am 52 and a lifelong active person.
Regarding the hairy tongue, I was told by the doctors that radiation will kill all the hair. Since I believed them, I enjoyed the novelty of it, freaked out my kids, and took a few pics for posterity. The doctors were right. I have not had a single hair since radiation. I also heard, if you don't get radiation, you can have it removed by laser or other techniques.
I was much more worried about losing shoulder function. They said for some, it's permanent, and really hard to predict. My current outdoor passion is surfing. My right shoulder (side of surgery) was quite weak after surgery and I had limited range (barely lift my arm to shoulder high). Even in the hospital, I started doing simple exercises. I learned to judge improvement in weeks not days. It took about 5 weeks before I got back in the water. That first session out after surgery was my worst-best of my life. I got my butt kicked, barely caught a few waves, but it never felt so good. And, every week, I got a little stronger.
As of today, I can not tell the difference. It has been about 5 months. Praying for successful surgery, clear margins, and a full recovery for your husband. BTW, we lived in SLC for 12 years, mostly in Sandy. Skied, rock climbed and mountain biked all around the Wasatch.
It is just over two weeks until I go back to have the questionable area re-examined. I am at this point just reviewing in my mind what I may possibly hear from my doctor which is rather unproductive. I have a persistent cough now and it is hard not to think, hmm is that like it was before my first diagnosis? I can hardly remember but I do know it could be a totally different experience from the first, so who knows. I am so in awe of the many participants here on these forums who maintain a positive outlook and are examples to so many of courage and persistence. It is what keeps me thinking it can turn out ok, even a second time around. Thank you for your willingness to share and to support. NonaChris
I didn't get any nerve pain. I was put on pregablin (part of the gabapantin group, so great for nerve pain) for a month before my surgery. I stayed on it for 4 months after surgery (a month after i finished rads). I was also encouraged to massage my scars as soon as the stitches were removed. I guess it all helped
A doctor at Dana Farber and Brigham Womans, Dr. Sook Bin Woo is an expert in diseases in this area and has published a paper on lichen planus. You may be able to ask your Moffit doctors to consult with her on your husband's case.
I believe she is one of the experts in what may be a rare field.
Welcome to the forum, but I’m so sorry that you have cause for joining us.
It’s tough to be alone at doctors’ appointments, to make sure you get most of the information down, I would suggest you write down all your questions prior and the make sure you ask the doctor for answers. I used to announce to the doctor that I had “x” number of questions asa soon as I got in. Then most doctors would ask, “Are there any more question?” before we finished. Seek out Pastoral Care or the Guidance Centre at your hospital so you get some supppoty that way. There are also volunteers in Waiting Rooms and they are helpful too. One time I was crying to in the Radiation Waiting Area while my husband was getting treatment, a volunteer saw me, sat down and spoke to me for a little while. Basically, all she said was, “trust the doctors, they know what they ar doing.” That, for me, was enough to get me through a rough patch — to know someone knew I was distressed and she comforted me.
You are welcome to post on the forum any time you want. This is a compassionate group who have a lot of experience among them. You may be able topick up some tips as you go along.
Holly, you’ve posted on a really old thread, so it’s unlikely anyone who posted there would respond.
I read your first post and you mentioned your dad had a really good dentist. What does he say about the trismus? Has he given your dad any recommendations on what exercises to do or if a therabite would help? Is the dentist someone you access through the cancer centre? If not, you can ask him to talk directly to the oncologist and see what course of action is recommended. Is there an SLP at the hospital you can access?
OC is the most effective weightloss programme I've ever been on, but it's the worst treatment. I lost 40kg (although learning to eat during lock-down has caused me to put on 4kg :D) I ended up giving away pretty much my entire wardrobe to friends and charity, then I hunted on eBay for new ones.
Please, if you can, keep us posted about the trial! I am very interested as to see which part you become involved in and what the results are in the long term. I know what I think, but I'm not a medical professional
Hi Andy! Congrats on being 6 months post rads!!! The worst of everything is well behind you already.
Recovery can seem to last forever!!! No patient can ever get better as quickly as what their own mental timeline says which can be very frustrating. The recovery phase is full of ups and downs with some setbacks here and there. Rads sure was NOT an easy process and those setbacks are like a kick to the butt to let you know you still are a bit fragile and have more recovering to do.
Im sorry you still have a ways to go before you are considered completely recovered. OC is a difficult cancer to get thru!!! A total recovery for OC takes 2 years, sometimes even a month or so past the 2 years post rads. Thats why intake of at least 2500 calories and 48-64 oz of water needs to be continued for at least another 6 months, preferably til you hit your 2 year post rads mark. Ask your doc about adding high protein whey powder to your milkshakes or diet to boost your protein intake which will help with healing. By the time most patients hit the 1 years or so mark they're doing great, almost back to their normal self. The dry mouth/lack of saliva and ability to taste will be the 2 things that take the longest to recover. Many patients struggle with their sense of taste. Foods lose flavor after taking only a bite or 2 but it will improve in time. After patients are 2 years post rads, they're almost completely recovered. Some patients will notice small improvements up thru around 22/24 months post rads with their sense of taste and dry mouth issues. Sense of smell fluctuates on and off thru around the same timetable (up to about 2 years post rads).
Just remember... "everybodys different!!!". Diz was one of the rare 10%-ers of super lucky speedy patients who bounce back very quickly. She also was excellent adhering to her daily intake calories and hydration minimums. Patients who can do that will almost always fare significantly better than the patients who get into the playing catch up game. If you can meet your daily minimums of 2500 calories and 48-64 oz of water every single day (NO skipping either!!!) you should notice recovery will become quicker and easier. If you lose weight on those daily minimums then you need to bump your intake up to 3000 or 3500 daily calories. You shouldnt have any concerns about gaining weight even with taking in higher than normal calories. During my recovery many days in a row I would take in 6-7000 calories by drinking a few of my favorite chocolate peanut butter shakes and never gained an ounce but it did stop my weight loss. With being so busy rebuilding itself, your body is burning up calories at a much higher than normal rate.
Hang in there!!! The worst is behind you. Best wishes with continued improvements with taste and dry mouth!!!