Was Dx with SCC T2 NO 05/20/2013.
Tumor,2.5cm, Depth,8mm.
Surgery: 07/03/2013
Partial Glossectomy, and radical neck dissection.
Pathology: Clear margins, no CA in lymph glands.
Post Op:
Radiation Therapy to start 09/03/2013
Hi welcome Denise.... Are you still in treatment are have you finished?
Hi Chery Thank You. I am just beginning radiation on the 3rd of September. I had a real struggle with treatment options. I had the surgery 07/03 and still have some side effects from that but not real severe. I was ready to give up before I even began!
I am a manic depressant on medication but even with that the whole aspect of this is so scary and most of the outcomes are not very good. You have to wonder if going through all these treatments and surgery's are really worth it...I'm sorry, I am venting. No one seems to understand but the patients and survivors of this horrible cancer. The radiation oncologist told me I had to have the radiation or the cancer would be back in a year or two. After reading some of the posts, it looks like most cancer returns even with radiation within a year or two. Tell me more of side effects that you have had to go through.
Whatever anyone tells you about their Tx please remember that everyone can react differently.
So no chemo is planned?
Most likely with radiation:
You will loose most of your taste early on;
Your taste wioll mostly come back but may take all of 2 years post Tx;
You will develop swallowing difficulties and must depend upon a liquid diet for your calories;
You will secret a thick mucous towards the end of Tx that can last a few weeks but will stop;
You will develop dry mouth as your saliva glands suffer from the radiation damage;
Your dry mouth will improve but, like your taste issues, may take all of 2 years to recovery to their new level;
The few weeks POST Tx are usually the worst time we all have so just be prepared;
Your recovery can take all of 2 years with the first few months being the most challenging and the first year worst than the 2nd year.
That said there are a few things I would recommend:
Get with your dentist and make sure they know you are about to undergo radiation;
Get your TSH tested pre radiation and record that number in case your thyroid craps out post Tx;
Do start eating and eating and eating everything in sight especially your favorite foods;
Do try and consume 2500 cals and 48 oz of water each and every day starting NOW;
Do write down any question you think of and ask your docs and us;
Do keep a positive attitude as you will be able to finish this Tx and you will walk out of that tunnel and you will recover from this Tx.
Most of what David has said is correct. We all experience certain things but it is varying in degrees depending on you. If you have a high pain tolerance then it isn't as bad, but you still need to push yourself. Personally I relied on minimal pain meds... Only for a little over a week during the end of my treatment - I'm not typical - so plan for the worst hope for the best and make sure you have pain meds on hand. I know its daunting but you can an will get through it. Hopefully you have some support or care giver - it's not easy to go through alone. Try not to see the down side. I know reading here is scary it seems like there are a lot of recurrences, but truthfully we have just as many people who stay on through treatment and then move on. We have some regulars who stick around for support and of course we have recurrences it just seems like a lot because this is a forum for active cancers and cancer info.
hugs. It's a doable thing. - not fun but doable.
Hi Denise,
You've gotten some good advice above from David. I'll add another tip. Start now preparing your neck for radiation by applying a cream like "Special Care Cream" several times a day. Never use it prior to a rad treatment but apply liberally afterwards. You most likely will still deal with some sunburn like symptoms but they will be less if you start now.
As treatment progresses, you'll probably develop sores in your mouth and on your tongue. A solution made up of 16oz water, a tablespoon of baking soda, a tablespoon of salt and 5g of glutamine will help with the discomfort and pain. Use it several times a day. Ask your docs to prescribe "Magic Mouthwash". There are various recipes. You want one with lidocane to help numb your mouth when the sores get bad and your throat gets too sore to swallow. It will give you a short window (15 minutes or so) to get some nourishment down. Just make sure to take any pills prior and it numbs your tongue too!
Best wishes, positive thoughts and prayers
"T"
Thank You so much David for being positive and for the encouragement. Where you a stage 1 then it re-occurred at a stage 4?
Thank You so much. All these tips will help me I'm sure. This is a wonderful site. Thanks again
Appreciate your kindness and support. Wonderful site.
Thank You
Denise,
Start paying attention to the signature lines from posters on this board. Many are 5 year survivors and beyond just like my hubby who had a pretty dire diagnosis and is here today alive and doing great. We all just stick around to give encouragement and information to people like you.
None of us will tell you that treatment will be easy but we all agree that it was the right decision.
Hoping for the best for you,
Denise,
Fortunately I only had this crap once. When they discovered it I was already a Stage IV which is fairly typical of HPV+ SCC as a typical HPV+ patient usually presents them selves with an infected node or 2 and by current standards that's a minimum Staging of III.
Denise, welcome to OCF! Im glad you have found the forum. Its not always easy to understand exactly what patients go thru but we 'get you'. We have been there and gotten thru it.
One thing you may have misunderstood, most patients do NOT have recurrences. You may see many here with recurrences but that doesnt mean the majority of all OC patients will ever go thru it again. Just many who have had recurrences stick around and help others, while many who have been thru it once will go back to their pre-cancer lives and only stop back occasionally. Try not to worry about the statistics. Thats beyond your control and its just numbers.
Focus your energy on things you can control like good nutrition and hydration. Thats what will help you get thru this easier. Every single day take in a minimum of 2500 calories and 48 oz of water. If you are already suffering from anxiety, if you arent taking something for it please seek out someone to help. Many OC patients struggle with depression and take meds for the anxiety. Even some caregivers need a hand to get past this phase of their lives. Its better to get the help lined up than to ignore something that can make this whole thing more difficult.
Best wishes!