Hello my name is Ed. Dx BOT stage 4 in July. I finished treatment mid October. 8 wks EBT & Chemo 1x wk.
After treatment my Dr read the CT and said he had wished he was going to tell me " I'll see you in three months" but he is still seeing tissue in the neck and under the jaw. Says there is a 60% chance it's only scar tissue. PET Scan set for mid January.
Never posted on ANY board in my life so I am a little nervous about screwing up. Just going a little nuts after hanging in Limbo for the last 2.5 months. Not looking forward to the next option (surgery) if the PET Scan comes back pos.

Welcome to OCF, Edward! Relax! You are among friends here! We are all connected thru one horrible disease. Im going to send you a link to help you navigating the forum a little easier. After a couple posts, you will be a pro. Dont worry about mistakes, we ALL make them and just about anything you do here can be fixed.

Im not sure what you mean by EBT? Radiation treatments?

Finishing treatment in Oct, you are still only a few months into your recovery. You may have swelling or scar tissue in the area of concern. If your doc has concerns about something a biopsy should be done. Cancer isnt something to fool around with, especially oral cancer. All it takes is for one microscopic cell to get missed (Im assuming you had rads?) for a recurrence to happen. I am NOT trying to worry you (worrying wont ever help so try to avoid do it) but I want you to be a strong advocate for yourself. A biopsy is easier than a PET! The doc can do a fine needle or punch biopsy and find out a week later the results instead of waiting weeks to see if one is needed. A biopsy tells you what something is instead of something lighting up on the PET scan which could be an inflammation or cancer, the PET doesnt differentiate.

Best wishes with your continued recovery!


PS... Happy new Year

Thanks for the reply. I was trying to say radiation treatments. My surgeon can't see the tumors anymore (sticking that scope up my nose and down my throat) and says they are gone. Radiologist cannot feel anything along my throat or lymph node. They are just picking up that shadow with the CT. I am scheduled for the PET in 2 weeks ( insurance was a problem getting things approved). Dealing with Edema, anxiety, dry mouth, weight loss and depression. Reading what you and others have gone through I should consider myself lucky to this point and stop whining. Thanks again 🙂

You are NOT whining! Around here we call it venting But I dont even think you are venting. Asking questions is a good thing, it helps you to become a strong advocate for yourself. I dont know of a single OC patient/survivor who went thru this without having some issue or side effect. Even the lucky ones who seem to sail right thru treatment and recovery have had their problems with treatment and recovery.

Its very common for OC patients/survivors to become depressed. Make sure you discuss this with your doctor next time you see them. You could need something to help you to move on. Its nothing to be ashamed of, many OC patients need this type of help, even some caregivers take anxiety meds.

Try your best to focus on what you have within your control, your intake. Every single day take in at least 2500 calories and 48064 oz of water. This will help to flush everything out of your body. Losing weight during and after treatment is NOT a good thing! If you can push yourself to take in 3500 calories daily that should help you avoid any further weight loss. When losing weight you are also losing muscle which may never return.

Stay busy to help pass the time and hang in there!

Welcome Edward, and congratulations on completing treatment!

I know you meant EBRT, an acronym for External Beam Radiation Treatment, such as IMRT that most everyone has, which is radiation delivered outside the body. Radiation continues to work in the body for weeks after treatment, and was once told by my RO, Radiation Oncologist, it continues to work for six weeks, just about as long as you had treatment, and another RO said for 2 weeks they know, and past that it's theoretical.

PET scans are usually done minimum 11 weeks after radiation treatment completion to avoid false positives like seen on the CT scan, but they can have them too due to it being highly sensitive showing any "uptake" from inflammation, fibrosis, infection, called SUV, Standardized Uptake Value, so proper patient preparation, it's delivery, and an experienced radiologist reading them are important.

As mentioned, no scanning can prove cancer 100%, only a biopsy can, and that is subject to error too. Even FNAB can show mixed morphology after treatment, indicating cancer, but further analys shows it's not.

I suggest everyone get a copy of any scan report from their doctor, and a CD copy of the scan right after its done at the radiology center, which takes 10 minutes, for your records, and future reference. I take them to all my doctor visits right after any testing, but only my ENT or Radiation oncologist look at the disc, which require specialized training. Other doctors look at the interpretation report, and copy it for their files, if their not in the same hospital system, and most were glad I brought them.

Radiation has acute toxicities, which gradually subsides after several months, and then there are long term toxicities sometimes lasting for months, even years, and can take up to two years to fully recover, but it's hard to give any timing as everyone is different with the location of their cancer, type of radiation, the dosage amount, Frequency, where radiated, Bilaterally. if with chemo or not, and other cormorbidities.

All the things you mention, edema, anxiety, dry mouth, weight loss, and depression are common, and can be treated or impact lessened. We can go over any you have difficulty with further, and Christine has suggested a few things. I think I'm a champ with weight loss lol, lost over 110lbs just from chemo, and gained 50lbs back. Christine has a high calorie protein shake that can help too.

One of the biggest prognostic factors is being HPV positive or not. At this time, I believe testing is required or suggested for all oropharyngeal cancers, such as base of tongue, and tonsil cancer. You can inquire about this with your doctor, and if not, they can still test the biopsy sample.

Waiting is the worst! Try to occupy your time with any hobbies, light exercise such as walking does wonders, even posting here to vent or ask any question.

All the best!

Thanks for your kind words. Will take your advice and kick up the calorie intake. Sometimes you just get frustrated with it all and say "screw it". Good advice and thanks. Ed

Hi Edward, glad you found us. The people on this site are very helpful and knowledgeable as you can tell by the replies you have already received. As Christine stated, your nutrition and water intake is super important right now. By keeping up your nutrition you are investing in a lot better heath outcomes down the road.

Do you still have the feeding tube and port ? I have both and thank goodness as I lost over 50 pounds and had serious problems with not keeping my water intake up.

It sounds as though you are doing well with all that you have been through but now the waiting is so very hard. Keep busy, enjoy the beauty of the day and don't drive yourself crazy with worry.

Please keep us informed and check in here anytime ! Happy New Year to you !

Jo

Thanks for the response Paul. Greatly appreciated. The doctors explained I needed 2.5 to 3 months waiting period for the PET scan so the radiated areas no longer show up as "hot" similar to cancer activity. Pretty much just as you said. The insurance company has pushed it out to 3 months.

I had a specialist do a biopsy on the lump in my neck (lymph node) prior to my diagnosis and I believe I heard him say something about squamous cells when he finally called me back with the results and punted me to a surgeon. He certainly didn't use the word CANCER. I am real estate appraiser and had no idea what the heck squamous cell meant. You can imagine my reaction when I went to see the surgeon and he was in a cancer center. I was under the impression I had a benign bronchial cleft cyst.

I did pretty good with my weight during treatment but have slowly been losing ground. I am 5'10 and was 190. I am just under 165 now. You are definitely the champ at 110 lbs!! I look forward to eating like I look forward to doing my taxes. It's a chore and there is nothing enjoyable about it. I do have the 530 calorie drinks that I would use in my feeding tube left over but have only been taking 1 or 2 a day. In talking to you and Christine I am starting to realize that I may be acting in a self destructive way with the eating. I am just tired of being sick. In 2013 I was diagnosed with Hep C and spent 11 months on the interferon treatments. That was a year of feeling like hell and now I am back in the soup again.

My radiologist tested me for HPV at the onset and tests came back negative. Funny thing, the doctor said he would tend to disagree with the test results. I know the odds are a lot better with an HPV diagnosis.

Thanks for info and giving me the opportunity to rant. My wife of 40 years is my caretaker and she is a saint. I am painfully aware of how this impacts her and don't want to unload on her. Speaking with all of you has been real helpful.

Thanks

Ed

Thank you Jo and Happy New Year to you!!

They took the feeding tube out a couple of weeks after treatment. I never really lost the ability to eat as the pain in my mouth and throat never got to the point where I couldn't swallow. I loved the feeding tube. Especially for water intake. I was aspirating so I had to use thickener or drink in small sips with my chin tucked down. What a pain in the butt when they wanted you to drink a small swimming pool everyday. With the tube you just pour away!

The waiting is the hardest. I think we all tend to think of the worst at times. Sadly, the worst, with this disease, can be gruesomely frightening.

One of my hobbies is cooking. It is challenging at best when you have maybe 50% of your taste buds on vacation. I did make a porcini mushroom soup tonight that according to my guests was delicious. Could of fooled me. But it was good to get back into the kitchen again. Thanks for that advice.

Ed

Hello Ed, it is still early days with the healing process for you.
My Husband also had an MRI scan report post rads and chemo that said that there was something that may represent residual tumour. He was sent for a PET at 3 months which showed no tumour activity. So, take a deep breath and try to relax. Waiting is definitely the hardest part I do know this.
Hope all goes well,
Tammy.

Thanks Tammy! That's a very encouraging story. I am just going to take a breath and stop getting all twisted. Happy to hear your husband is still cancer free!!

Hi Ed,

Yes, Squamous Cell Carcinoma, SCC, is a very common type of cancer cell effecting cancers in the head and neck 90% of the time, and so was mine. Back then I didn't even know who an oncologist was so no worries there.

I was going to mention watching the food channel to help with your appetite, but see you like to cook like myself. I think cooking or the idea of cooking helped me recover during my many treatments. I got a big kick when I was once "foodie of the week" on QVC's In the Kitchen with David with a picture of me on TV making a pizza pie. I have also used coffee, marinol, steroids, fat/sugar, wine in later years, exercise and others to help increase my appetite, and gain weight.

Sometimes I say the heck with it too, probably worse words lol, but dust off, and continue to carry on to the next day. It's a normal feeling, and just as long as it doesn't interfere with other aspects of life, treatment, recovery, it's not a bad thing.

It's interesting that you mentioned having had Hepatitus C. Last spring there was a report of an increased risk, 2.6 fold increase above average, for head and neck cancer with hepatitis C, so maybe now doctors can monitor this area with future patients having had this condition.

Good luck with the PET/CT. The facility should give you preperation instructions if you never had this scan before.

Thanks Paul. I have had the PET scan before. It gets a little uncomfortable at the end because you have to pee like a race horse.

That's pretty cool you were on the cooking show! My wife and I do watch a lot of cooking shows. I had to google marinol and got a real good laugh as I thought I knew every name for it.

The Hep C connection is interesting. I kind of thought I was just having a run of bad luck 😄😄.

It does get frustrating sometimes. You don't know what you have till you don't have it anymore. A little thing like saliva and swallowing a mouthful is an epic adventure. I have found that I have full taste for a toasted English muffin with a ton of melted butter on it. Seems to be the one thing that I get the same pleasure from as before. Maybe I'll try some lobster with butter this weekend. That would be glorious if I could taste that!!!

Thanks for the feedback!

Ed Kane

Got some great news today. PET scan results show no sign of cancer. I feel like a huge weight has been lifted off of me. These last 6 months have been a nightmare. I am so grateful to all of my doctors and medical science for the advances they have made.

I realize that it ain't over till it's over but I am elated at having a second chance.

Thanks to all of you on this site for your positive support. Hopefully I can contribute back to this community.

Ed

Oh my, this is beautiful news ! Sure made my day here and I can only imagine how relieved you are right now. Do your "happy " dance, you earned it !

Congrats Ed!!!! I bet you feel so much better!!! Please stick around our site. We love having survivors to share their experiences with others who are just starting out. We're one big extended family

Congratulations! The best news possible!

Great News, Ed! Hope you have that lobster soon too!

That is wonderful news Ed. Hope you and your wife are celebrating.
Tammy

Thanks everyone. Went out to dinner Friday night for the first time in a long time. People were looking at me like I was some kind of nut because I kept taking swigs of my pink magic right out of the prescription bottle. And yes Paul, I had my lobster! Later that night I just started crying. Out of the blue. I have a 19 month old granddaughter who means the world to me. Now I can watch her grow up. What can I say?

I will be sticking around this site. You are wonderful people.

I love happy updates

Im very glad you will stick around!!! Ive made many life long friends thru this site. Im sure you will too. OC patients/survivors and their caregivers share a common bond. We're like one huge extended family

OCF has oral cancer events all over the country. Our Director of Events, Susan Lauria hosts the Andover NJ event. Sadly, Susan lost her brother to OC after a long hard battle. I always try to attend this event. There are at least 20 survivors who go every year. Maybe you would like to attend too?

Thanks Christine. I googled it and I see it's on September 23, 2017. So sorry for Susan's loss.

Thanks for the heads up. I would love to attend.