Hey all, my name is Angie and I was recently diagnosed with stage 3 cancer on the back and base of the tongue (left side) and enlarged lymphnodes (also on left side). Everything has been happening rather quickly. I was diagnosed 3/23/16 and am now scheduled 4/14/16 for a partial glossectomy along with surgery on the neck to remove the lympnodes. Needless to say, I am petrified, I get nervous everyday, but this is the road to being cured so I must stay strong. I plan on being strong throughout recovery as I hope to have a normal life as possible. I want to have kids one day and hope to watch them grow! I am relying on the strength and positivity of my family and friends and hope to expand my support system by joining this forum. I in turn wish to provide the same positive energy to others, and after recovery I want to do more with my life and find a way to really help others through help and support programs in my area. Come be my friend! I could really use them!

Welcome Angie, you've come to the right place. When I was diagnosed just over a year ago I was nearly frantic to learn more. The folks here have been through it and can give you all the support and guidance you need. A year later I find myself clear after 3 post-treatment checkups, and there are days that I don't even *think* about my cancer experience ;o)....

Christine will be along in a little bit here to start the ball rolling with information from people a lot more knowledgeable than me. But know that you have my support and that of all the other members here. It's a nice place.

Welcome to OCF, Ang! You definitely found the very best place to have lots of support and also the benefit of getting correct medical info too We will help you get thru your treatments and recovery.

Have you gotten a second opinion? Since you are in FL, you have a CCC, Moffitt located in Tampa. What about a PET scan to get staged? How about seen your dentist? If doing rads you should have fluoride trays made and any questionable teeth removed now. Any talk about needing additional treatment like radiation with or without chemo?

I hope I havent overwhelmed you by throwing so many questions at you right off the bat. Just remember surgeons always say surgery is the way to go, same for radiologists and medical oncologists say chemo is necessary. Also remember once its been removed you cant put it back to its original functionality (even with skin graphs). This is why I was asking about a second opinion, hopefully at a Comprehensive Cancer Center (CCC). At a CCC a team based approach is used so all the specialists work together to make the treatment plan. Its called a tumor board where the doctors get together and discuss each individual case, the patient is able to attend as well.

You probably will want to begin focusing on your intake. Eat all your favorites now, desserts too Dont worry about gaining a couple pounds, you will probably be like most of us and lose weight during your treatments. When a person has cancer they burn up calories at an increased rate. During treatments and recovery you will want to boost your intake. If doing rads you will need a minimum of 2500 calories and 48-64 oz of water daily. You may not be able to eat very well right after surgery so have all your favorites now.

Hopefully your treatment facility has a speech pathologist on hand to help you right after surgery. By getting one involved early, they can help you relearn how to eat and work on your enunciation. This is very important to OC patients who have their tongue affected.

If you havent already done blood tests, make certain they are testing your thyroid levels now too. If doing rads, you may have problems years down the road with your thyroid. A blood test now ensures you will know what your regular baseline thyroid levels should be. Taking a pill a day to manage your thyroid isnt a big deal, but getting the baseline level is.

Line up friends and relatives to stay with you as much as possible while you are in the hospital. Anyone who offers to help tell them when the time comes you will let them know what they can do. Write down everyones info so you can get someone to reach out for help when necessary. Its easiest if you have only one point of contact so everyone who wants updates will ask this one person. When you arent feeling the best you probably wont want to be bothered by a million texts, posts and emails. Take a dry erase board to the hospital with you and a little bell so you can easily get someones attention if you need help. This is also why someone should stay with you as much as possible. In the hospital a million people will be in and out of your room, most wont know you arent able to talk and will expect you to speak to them. Also ask your doc for a possey muir valve trach. If you are able to talk this is the type that will enable you to speak.

I could go on and on with tiny little tips. But Ive probably already overwhelmed you and that is definitely not my intention. I want you to avoid the pitfalls that many patients run into. Best wishes with everything!!!

Hi Angie, I too want to say hello. This is absolutely the best support Forum there is. Come here often to ask questions and seek support. There will always be someone who can guide and support you.
I want you to know that You will get through this. Yes, it can be a hard road, but you will get through this. Surround yourself with loving and supportive Family and Friends. They will help with the daily logistics of getting to treatments and helping you manage everyday life as well as the so important lifting of your spirits. We here will understand what you are going through and give you advice on many many things. Coping with the trach, secretions, speech, chemo , diet etc.
Re read Christine's advice above.
Always stay positive, come here to vent if you need. We get it.
Thinking of you,
Tammy

Hi Ang,
I too,am recently diagnosed and going through this journey. It is very scary, but I think a positive attitude and confidence in your care team is essential. This is a great site with lots of information and experiences of those who have been there and done this! And survived! It will be a tough road, but we will get through it. My surgery is April 21. I look foreword to hearing about your recovery and sharing our experiences!
Sending positive thoughts your way!
Ange

I hope your surgery goes well. I am a year out just about and luckily did not require chemo or radiation. I remember the 2 week wait I had for my surgery date to arrive once it had been set. It was tough. But I will tell you that it honestly was no where near as bad as I had anticipated. Sure, there is some soreness but nothing that wasn't do able. I laid on the sofa for the initial days afterwards, ate cheesecake without the crust and watched movies. Oh, yeah...and took oxycontin. That made the movies a bit more interesting and the cheesecake a bit more yummy. Good luck to you and I will say a prayer for you. Denise

Thank you so much for your greeting! It is so motivating to hear that you are cancer free! Thats the goal!! Surgery is in 2 days so wish me luck! Staying positive!

Hi christine! And Thank you! I am currentlyrics being treated by the Sylvester cancer research center in the University of Miami. I am told they are one of the best. Everything has happened so fast. I was literally diagnosed a month ago. Everything is moving so fast. Two ontariologists are performing my surgery. I did not get a second opinion because of the speed in which we are going. I was told surgery is the best option followed by 30 sessions of radiation and possibly chemo. The university if miami offers all that I will need including speech therapy and at home nurses who will come and check on me post op. I'm expected to be in the hospital for about a week and recovery is projected at 3-4 months. The doctors are very straight forward. They said I would be on my trach for about 6 days or so...a feeding tube for a couple of weeks though after the first week I shoukd be trying to swallow...then speech therapy. They also said that I will be feeling better for a while and that radiation will make me feel bad again and then I will recover. I haven't seen a dentist or any other type of doctor besides the 3 ENT's....my family and friends have all been supportive and have kept me going throughout this waiting period before my surgery. They did a pet scan and said the cancer is stage 3 because my lymphnodes are painfully swollen. They are going to cut along my neck as well to remove said lymphnodes and now I feel like my lip may be infected as well as some sores on my gums. Hopefully, they will take care of everything during surgery, and I hope I don't have to do chemo! Thanks for your support!

Good luck with your surgery! I would love to stay in touch! Everything has been so overwhelming. My surgery is in 3 days. Needless to say I get nervous but my support team has been so aesome. I am so grateful for my family and friends and to have met all you folks here on this support page!

Also denise, what have you been doing about your diet? Any hollistic remedies? I was told about alkalining my body and going super green. I plan on being super healthy after all this...

Also, did you experience any soreness in the lips? I have a scar in the middle of my lip but right next to it, there is a tender bump that is bothering me. And ever since my biopsy, my lips have been peeling everyday! Is this normal?! I'm going to call the doctors office to voice my concern. Hopefully it hasn't traveled to my lip! I do see sores on my gums. They've never been there before. I feel like the closer I am to surgery, the more pain I feel! Everyone's recovery is such a motivation to me! I will try my best to check back soon before my surgery thursday!

Also, I went to the gastrointestinal doctor because there was blood in my stool. He said it was a result of painkillers and not to worry about it. He did blood tests to see if I was anemic and I'm not, he also did a blood test for my thyroid and said it looks slightly mildly hyperactive, but he said not to worry about it and to come see him after I'm healed from this big surgery.

Please talk to your physicians about needing to see a dentist for flouride trays. Since the physicians you are seeing arent radiation oncologists, they might not be aware of the importance of flouride trays.

Stress can wreck havoc on the body. Im sure you must be under considerable stress counting down the days until the surgery. This could be a major factor in the mouth sores that you suddenly have. I doubt it would be cancerous tumors but without a biopsy its not possible to be sure.

Waiting 3-4 months for your recovery to begin radiation does not sound right. When determining a treatment plan, doctors will use a flow chart and should go by the NCCN Guidelines. Of course everyone is different and all kinds of other factors can get added to the mix. This is why a second opinion is so important. All you or any patient can do is to seek out the very best medical care they can and go with it.

NCCN Guidelines for head and neck cancers



PS.... Please take a few minutes to review the link I sent you thru a private message (PM). It will teach you all the little ins and outs of the forum. There is a section on how to edit posts so its not necessary to write post after post.

Good luck with your surgery! I will be thinking of you and sending healing and positive thoughts your way! I would like to hear about your recovery and journey.

Hey Ang, how's it goin? Anyway, as far as diet goes, initially I just wanted to get some calories in. I am trying at this time to eat healthfully, something that I have done to various degrees throughout my life.
At this time, I am following some good advice I got from a friend who never gets sick, is healthy and in shape. She keeps it real simple. She walks a lot (she is tour guide in NYC). But the thing I am trying to do now,which she does, is eat "clean." I don't eat meat, other than occasional fish or a small piece of chicken.Lots of beans and various rices. Lots of fruits, nuts and vegetables, organic at times but not always. I stay away from processed stuff. With that said, I do have some sweets at times, it's about a balance. If this ends up taking me down, it won't be because I ate some pastry.
As far as holistic remedies, I can't say I am too familiar with those. I am sure some of those things have some validity, possibly to help with side effects of chemo, etc. It is so hard to find information that can be verified as reliable when you check into those things though. So I am sticking with the tried and true on this one. The stakes are just too high. I have also been a nurse for a long time within the mainstream medical world so I have some trust on that, my doctors have been real straight with me from the onset. I was on medications a couple of times for depression. I didn't like the effects, so I do go for accupunture treatments about once a month and I get a therapeutic massage about once a month too. None of those type meds for over 2 years, so it did help somehow, even if only a "placebo effect." They really help the stress factor and I think that is something too often overlooked.
I will say a prayer for you. In a few days, the surgery part will be over. Take care. Denise

Hi Angie,
welcome to OCF. I hope the surgery went well and you are on the mend. Take care of yourself and make sure to get enough liquids to not get dehydrated. Keep the pain under control - there is no reason to suffer unnecessarily. Good luck, don

I hope your surgery went well! Thinking of you and sending good vibes! Denise

Thank you! I am still recovering from surgery. It's been 3 weeks since the operation! Pathology tests came out clear except for microscopic intermediate risKS of cancer cells? I'm not sure. I'm still confused by it all. Anyways, I chemotherapy doctor in 5 days, and the radiation oncologist in 10....my two primary surgeons who removed a part of my tongue and removed the tumor say I definitely need radiation and that chemo is recommended but not mandatory. They offered me a clinical trial. I'm still thinking about it. Thabks for the positive vibes!

Thank you for your respond! It's been 3 weeks since my surgery! The doctors say I'll need radiation and chemo isn't necessary but recommended. They also offered a clinical trial with a lower toxic form of chemo but it's randomized so I'm not quite sure what to choose. I still have my feeding tube in. They want to keep it in until radiation is over just so I can get nutrition. All this is overwhelming. I hope all is well.

Hi! Glad to hear the surgery part is now over with! Boy was I glad to get home after the surgery and sit around on the sofa thinking how I had a giant part of the whole treatment behind me. How is the recovery coming along? I was so happy when the stitches melted. It took longer than I thought it would. I hope you are now able to eat some and build up for the next portion of your treatment!! I will send more good vibes and keep you in my prayers!! Denise. Keep us posted!

It's so great to hear your surgery went well and your recovery is progressing. And the news that chemo is optional makes me feel like you have a really good result here. Radiation ain't no picnic - - so I'll echo Neicy's hope that you can eat a lot and build yourself up for that. We'll be here to support you all the way!

Thank you! The chemo Dr. said no chemo! But I do have to do 30 rounds of radiation and I signed up for a clinical trial that is randomized for the addition of eurbitux to radiation. It's supposed to be a lighter form of chemo. We shall see! I pray for the best always! Thank you for you reach out!

The chemo you are getting is Erbitux or AKA cetuximab. Heres some more info that you may find interesting...

Targeted and Biological Therpies from main OCF site

If you havent already had a full blood panel including thyroid (men also need testosterone levels) you should have this done prior to starting rads. You also should see a dentist for a good check up, cleaning and to get flouride trays started.

If you havent already had enough things on your plate, this is also the best time to start making your intake your primary focus. Every single day you should take in a minimum of 2500 calories and 48-64 oz of water. If you can do more then that will only help you get thru it easier. A cancer patient burns thru calories much faster than a person without cancer. Taking in 3000 or even 3500 calories daily is not too much, especially if you are on the slim side. Losing weight for many is a welcome side effect but its also a dangerous signal that the patient isnt taking in enough and that they are headed for trouble. Older members have seen me nag and nag about intake for years. I know what Im talking about as I was a horrible patient and wouldnt listen, I preferred to stay in bed and sleep. This ended up landing me in the hospital a few times for malnutrition and dehydration. Please do better than I did and push yourself to eat and drink! Plus, your sense of taste will change, swallowing may become difficult during rads so eat your favorites now so you dont go into this with any cravings.

Wishing you all the very best with your continued recovery and your upcoming treatments. Dont be afraid to stop in often and lean on us, we are here to help make this easier for you.

Hi, Angie, I'm new here and was reading through this thread, and wondering how you're doing!

Winter, Angie has not been on the OCF forum since May 17th. At that time she was starting rads in 2 weeks. With most patients having an average of 6 wks rads, she should be about a month into her recovery right about now. Hopefully no news is good news and Angie is doing well.