I am new to this forum. In a nutshell, I had tongue cancer Squamous Cell Carcinoma. I am now 2yrs out. I see my doctor every three months but he has never done more than look at my tongue and rub his finger along the side where I had a small tumor removed.

How do you know if it has reoccured...other than seeing a spot or feeling a lump?

Thx!!

Welcome Lisa! Glad you have found our site to help you with your post OC questions.

It sounds like you have not been treated at a major Comprehensive Cancer Center (CCC) which would be going by The National Cancer Institute (NCI) guidelines. The guidelines for follow up are getting scanned every 3 - 6 months post treatment. At least thats how the majority of us are scheduled for follow ups. I suggest asking your doc about having a scan done. Many of us also get 'scoped' during our checkups. Did you have rads or just surgery?

As far as a recurrence goes, that is the biggest fear of all members. When I was new, I was so afraid of getting a recurrence I wouldnt even read anything in that section. A recurrence would likely present itself much in the same way the first OC did. Some OC patients get mets to the lungs which would show up on a scan.

Try your very best not to worry. I know its easier said than done. Cancer is a thief that will steal your precious time away from you. Instead of going out and enjoying life many patients become paralyzed with the "what if's" and worry constantly about being sick again. Worrying will never change any test results or make anything better all it will do is cause unneeded stress which has a negative impact on the patient. When you find yourself 'going there' try to limit the time you spend pondering things then move on to more positive things to think about. It takes lots of practice but its a skill that can be learned.

Best wishes!

NCCN has no standard for scans after your post treatment scan, usually around three months, minus any suspicions, and depends on the doctor and hospital in many cases. In fact, their guideline says only for T-3, T-4, in certain cancer like oral cancer.

A recent report, I posted here, says a physical, visual. palpable exam is just as good, although I read a report that PET/CT scan is better in detecting tumors, which can be detected as small as 5mm.

They do have standards for a physical exam the first year, 1-3 months, and spaces apart every year thereafter to five years. I get scanned every 6 months or sooner due to my risk of recurrence. The first two years has the highest risk of recurrence, and non HPV, the recurrence or failure rate levels off after two years. The oral cavity is more easily examined, as opposed to other HN cancers, and the best they say is the visual, palpable exam for this type cancer.

That's interesting Christine with NCI stamdard, I'll have to look at it, since it is a common topic, and I was going by NCCN guideline, but is just guideline. Thanks.

I hope this helps. and try to relax, Lisa.

Paul...I was sure there were after tx guidelines somewhere. I was probably thinking of the aftercare standards you mentioned. Sorry for any confusion! We can start a new thread for further discussion to keep this thread on subject of Lisa's concerns.

Current NCCN Follow Up Guidelines:

Printed by Ed Brown on 6/7/2013 10:25:43 AM. For personal use only. Not approved for distribution. Copyright � 2013 National Comprehensive Cancer Network, Inc., All Rights Reserved.
2 � H&P exam:
b Year 1, every 1-3 mo
b Year 2, every 2-6 mo
b Years 3-5, every 4-8 mo b >5 years, every 12 mo
NCCN Guidelines Version 2.2013 Head and Neck Cancers
NCCN Guidelines Index Head and Neck Table of Contents Discussion
FOLLOW-UP RECOMMENDATIONS1
(based on risk of relapse, second primaries, treatment sequelae, and toxicities)
� Post-treatment baseline imaging of primary (and neck, if treated) recommended within 6 mo of treatment3 (category 2B) b Further reimaging as indicated based on signs/symptoms; not routinely recommended for asymptomatic patients
� Chest imaging as clinically indicated for patients with smoking history (See NCCN Guidelines for Lung Cancer Screening)
� Thyroid-stimulating hormone (TSH) every 6-12 mo if neck irradiated
� Speech/hearing and swallowing evaluation4 and rehabilitation as clinically indicated
� Smoking cessation and alcohol counseling as clinically indicated
� Dental evaluation
b Recommended for oral cavity and sites exposed to significant intraoral radiation treatment
� Consider EBV monitoring for nasopharynx
1Most recurrences are reported by the patient.
2For mucosal melanoma, a physical exam should include endoscopic inspection for paranasal sinus disease.
3For cancer of the oropharynx, hypopharynx, glottic larynx, supraglottic larynx, and nasopharynx: imaging is recommended for T3-4 or N2-3 disease only. 4See Principles of Nutrition (NUTR-A).
Note: All recommendations are category 2A unless otherwise indicated.
Clinical Trials: NCCN believes that the best management of any cancer patient is in a clinical trial. Participation in clinical trials is especially encouraged.
Version 2.2013, 05/29/13 � National Comprehensive Cancer Network, Inc. 2013, All rights reserved. The NCCN Guidelines and this illustration may not be reproduced in any form without the express written permission of NCCN�.
�
FOLL-A

NCI Follow Up Guidelines:

"Following treatment, it is important to have careful head and neck examinations to look for recurrence. Check-ups will be done monthly in the first year, every 2 months in the second year, every 3 months in the third year, and every 6 months thereafter."

I didn't see anything about scans. This is the schedule for exams I followed when treated at the newest NCI member.

I am so sorry Christine. I didn't see your post while I was posting the guidelines. I was really trying diligently to stay on topic and I thought Lisa was asking about follow up guidelines. My apologies.

Ed

Thanks Ed! I will make a new thread with this info so it will be easily found in the future.

No problem....you ARE on topic! This is exactly what Lisa asked about. In the future, we probably would have trouble remembering which thread this was posted on so I made a new thread (under After Treatment) with your info. Now it will be very easy to find so we can help many others as well. No apology necessary! I appreciate you finding the info for me, thanks!


Now, back to Lisa's concerns.

Thanks Christine. I don't want to be saying the wrong thing.

Hi Lisa. Glad to hear you are two years out. Does your doctor do regular CT Scans as well as a visual examination? Were you treated with surgery only?

For me, I knew of the recurrence due to the pain in my tongue. The pain was excruciating well before there was a visible of palpable lump. The CT found it, but it took a couple of biopsies before it was confirmed by biopsy.

What recurrence symptoms are you having?

Donna

Lisa, I believe you fear of a recurrence. If that is the case let me tell you that we have people out there who are several years out of treatment and enjoying the life. If you are having any symptoms that you recognize from your prior experience, share with your Oncologist and get a scan done.

Do not let worry and fear steal your precious life that you got back after treatment.

All the best.

I very proudly told everyone who would listen that I was NOT going to be one of those people who think every little pain is the cancer coming back. I was mistaken...

I ended up with a clogged salivary gland that had me scared to death. After I found out what it was I knew I had to change. My cancer is probably not coming back but there is a very small chance it could. So I decided:
1) I will eat and drink healthier (in moderation). I'm not going crazy with my diet and still consume things I enjoy that may be frivolous BUT do it in moderation
2) I am going to do my best to stay in as good physical condition as I can manage. If it comes back I'm ready to fight. If it doesn't, hey I feel great!
3) I maintain scheduled check ups with my GP and the ENT that saved my life. Coming changes will discharge me from oncology follow ups soon but the more people who see you more frequently will help you not worry about aches and pains.

Do not let this stupid disease steal your peace!