Just signed up and first time on board. My husband was diagnosed with Stage II/III SCC mobile tongue in late July. One week later he had 1/3 mobile tongue removed, lymph node dissection both sides (clear), trach, feeding tube, etc. He is 48 and we have never been very sick or hospitalized. He is doing fairly well and back to work already. He has an extremely dry mouth and neck cuts hurt and pull. I am the basket case, very fearful, crying alot. He now has another "spot" on his tongue further back from the surgery. They will scope and look closer next week. I just wanted some advice on how to cope with each new possible "problem". I am a Christian and have God in my life and good friends. But I feel so alone in this life/death health issue. My husband (Dan) and I talk about the cancer, sometimes laugh (to get through), but I think about it all day and night. People tell me they knew someone with this who died and I don't think they mean it, but it's really the last thing you need to hear just 2 months post surgery. Just wanted some advice.
Thanks,
Debbie/Caregiver
Columbia, MD

Welcome, Debbie, from a fellow caregiver, 5 years now. I feel totally alone with the life/death issue also, even though my spirituality has gotten through 6 surgerys and now a tumor in the sinus. Personally, I have never gotton over the fear and anxiety, every little symptom scares me...........So, you aren`t alone in all this, there`s a whole bunch of us here who just try to take one day, or one hour at a time. You`ll get a lot of support here.........Dee

Thank you, Dee, for your reply. It's so hard to know how to cope. I started reading this site just yesterday and it is good to know that there are many people out there struggling with my same issues. It does help make it through the day. You know, I come to work everyday as before, but I feel like I am in a world by myself since no one is going thru this here. Anyway, thanks so much!

While this response does not address your coping question, since refurrence is relatively common in oral cancers I thought I would add these points. It is important that all possible diagnostic work ups have been done, this includes not only head and neck scans, but ct scans of the lungs as well. Approximately 30% of those that have stage one and two oral cancers have occult metastasis of the cancer ot surronding tisssues that can not be picked up by conventional scanning techniques. That is why combined thereapies such as surgery and readiation are frequently the most successful long term treatments. I would have a conversation with your doctors about these issues when you go in for your next visit. Recurreences are frequentyly these micro-mets that were there all along from the original cancer, and are not actually a recurrence. Sometimes surgically oriented doctors have a perspective that needs to be balanced by oncologists from other specialties like radiation, or chemotherapy.

Brian,
Thanks for the info. Dan (hubby) had no cancer show in the lymph node dissection, so they did not do radiation. He had the 1/3 mobile tongue removed (side), and a graph from his upper thigh attached to his tongue. A few things I read on this site talked about a PET scan. What exactly is that? Dan had a CT scan and a chest x-ray before surgery two months ago and that is all. He does have something else same side of tongue further back. The doc tried to check it but Dan kept gagging. Doc said to wait two weeks and they will scope him and check it out. I wanted him to scope Dan right away. I have trouble with waiting for anything...seems like it just gives it more time to grow. Anyway, wanted to know if there are any more tests we should be checking into next doc visit next week.
Thanks,
Debbie

Hi Debbie,
Just wanted to let you know that sometimes CT scans don't always give you an accurate account of the cancer. The CT scan on my husband didn't locate the base of tongue cancer. The MRI did. Also the PET scan showed that there were only cancer cells left in the tongue and not any new growths in the nodes. Better to catch any new growths at their earliest and the PET scan does just that. Keep up posted.
Take care,
Wendy

Hi Debbie:

Welcome to OCF and the virtual family of good people you will find here to help you through this experience. I am not sure there is a magic answer to your question about how to cope with new problems and/or the fear of them. I would say, at the risk of sounding trite, that time does help lessen the panicked frenzy of each new day when the time of diagnosis and treatment seems like utter chaos. I still become a wreck when my fiance, Dave (one year out from surgery and radiation for tonsil cancer) complains of anything or has a follow-up appointment. My way of coping sometimes is to acknowledge (with some humor and alot of truth)that "Kim has gone ballistic yet again" then breathing a huge sigh of relief when all is okay. The reality is that it is okay to be fearful but when fear rules your existence, it is time to give it a gentle nudge over to the side. It is okay to be vigilant and do regular follow-up and with that comes trepidation. For me, striking the balance between what is real and what is my crazy anxiety is the challenge. Keep also in mind that cancer is a great equalizer of previously young healthy people and you are also grappling with being thrown head first (no pun intended) into a huge vat of your husband's (and you rown) vulnerability and mortality. Keep breathing...we'll hold the paper bag today.

Kim

Thank you, Kim, for the feedback. I agree that it gets a little easier to deal until something "new" shows or time for the ole checkup. We took a little trip to New York over the weekend and it was hard at first to let go of the fear, but by the end I wasn't hardly thinking about it at all. I really appreciate your words of encouragement!
Deb

I was in New York City over the weekend. Did you notice any good looking British guys with cute neck scars with petite brunettes trying hard to stay calm while haggling with street vendors?

Hey kcdc-
Too bad we didn't meet in NY...you would think with 6 inch neck scars on both sides, we could have found each other!!! I'm sure you will agree, it does help to get away! Thanks for writing!
Deb/Caregiver/hubby DX 7/03 SCC mobile tongue, stage 2/3, tumor removed, lymph node dissection both sides 7/30/03.

I need some advice on my husband. First, he has been a rock for me and the kids through all this. A little background first, I had stage 4 squamous cell carcinoma in my left jaw, neck dissection with one node positive, and 32 radiation treatments to both sides. They did an operation on April 16th where they removed my lower jawbone and replaced it with the small bone in my left leg. It was quite an operation, very scary for my family. My issue now, 6 months later, is that my husband trys to act like this never happened. I don't feel he is doing it intentionally, but he is acting that way. The kids still need to talk about with me, be reassured, but if my husband is there he will say "let's not talk about this, your mom is better now". I talked to him and he said that he doesn't want it to become a part of our life. He doesn't understand that it will be a permanant part of our lives. I love my husband dearly, we have 7 children ages 9-23 and two beautiful grandchildren. We have had such an awesome marriage so far, are raising such an incredible family. I hear of marriages that fall apart after cancer comes into it. Any help would be greatly appreciated.

Hey Minniea,
Good to hear from you. I don't have much advice on this yet, as we are pretty new to it all. Hopefully, you will get more responses. I can say that my husband is reacting the same way. I probably would like to talk about what he has went through more, but he wants to just go on and not really discuss it now. We only talk about it some when there is another appointment or test. Maybe it's the male way of reacting? Or maybe just different personalities? Anyway, hang in there and I draw a lot of strength from God, and have found a few good friends that I can talk about it with. They are open to just hearing me discuss it and my fears about the future. With that big of family you might not have a lot of time, but get one or two good friends that are open to letting you just "talk" about the cancer and all you have went through, both physically and emotionally. It's a release for me!
Take care!

Hi Minnie,

Good to "see" you again!

My husband is the same, we are done with the cancer in his eyes. He can be very rational and has a counter point for any thing I say, when all I needed to do was express myself, vent a little.

I am lucky that my sister, and dearest friend next to my husband, lives not too far away. She comes in town for my every two months check, and we go to lunch and have some girl time. I also can vent to my friends at work, and I am fortunate that they have lots of surgical and oncology experience to draw from.

It is working well for me to get the different kinds of support I need from all over, this board included. My husband and family remind me that life goes on so keep on going with it.

Sincerely,
Lisa In Ks - Six months cancer free!

Hi Lisa,
I know exactly what you mean, it's as if my husband has rolled his sleeves back down and retired the boxing gloves.........the fight is over in his eyes. If I get anxious on a particular day and call him to talk, he will simply say that he won't allow anything to hurt me. I do worry that him keeping it bottled up will affect him eventually. I'm guessing it's all part of the process. Glad to hear all is well Lisa, I also just had my 6 month scan and it was negative. We start competitions this weekend so I'm excited. Take care,
Minnie

[quote=Debbie/Caregiver]Brian,
A few things I read on this site talked about a PET scan. What exactly is that? Anyway, wanted to know if there are any more tests we should be checking into next doc visit next week.
Thanks,
Debbie [/quote]

Without getting to technical a PET scan shows the difference between healthy and cancer cells metabolizing sugar. Cancer cells metabolze sugar faster than normal cells.
You fast for at least 12 hours. Then you get an intravenous radioactive sugar solution. The (hungry) cells draw in the sugar solution (remember cancer cells draw it in faster) and being radioactive, it lites up on the screen. It is very easy to get a false positive as any infections surgeries, and broken bones will also show up. Make sure that the techs know your complete history. I was thought to also have lung cancer till my RO realized I had broken ribs from an accident.
It isn't possible to get a false negative though. If there is any cancer, it will light up on the PET scan. It is a very good test. It saved me from having to do a neck resection as it determined that I had a tonsil primary.
Hang in there darlin'
Just said a prayer for you both.
Chris

This is a good answer to this question. But remember that there are over 100,000 conversations archived here on the message boards. Look at the date in the upper right hand corner. This conversation took place years ago.

I respectfully disagree that responding and opening up an 8 year old question as though it was current with an inaccurate answer is "good". I can personally attest that this statement about PETscans [quote]It isn't possible to get a false negative though. If there is any cancer, it will light up on the PET scan.[/quote] is overbroad and misleading.

In fact and the real world, not the advertising brochures of PETscan manufacturers, radiologists and oconologists know that a PETscan can miss a cancer tumor, especially a recurrence of a tumor, with it happening frequently for base of tongue cancers. I had railed against the disclaimers in my PETscan reports until my October 2008 Petscan showed extremely high SUV on the right side of my jaw and tongue with "normal" SUV on the left side where I had had a tumor.
Yet the January 2009 MRI/CT scan my ENT ordered after confirming with my ROs how sketchy PETscans are for BOT, clearly showed the tumor back on the left side right admist the normal "non-lit up" area of the PETscan. It also showed the right side light up was a false positive. Surgery in March 2009 confirmed the MRI/CT exactly as well as highlight the dual false negative and false positive of the PETscan.
Trust me, if it was a case of a radiologist botching the readings or some mistake, I would have sued but my CCC went out of its way to walk me thru the images, the technology and answer all my questions in a personal session with the Director. They were open and candid about the limitations of the PETscan, especially for BOT tumors.
It's much better for front of the mouth stuff but it most definitely NOT accurate to say [quote]a PET scan shows the difference between healthy and cancer cells metabolizing sugar.[/quote] All a Petscan does is measure how much sugar any cell is taking up. It's just extrapolation as to whether that sugar uptake is "normal", recovering tissue or cancer.
If you have or have had BOT cancer, don't rely just upon petSCANS.
Charm

With respect, Chris your statements in regards to the PET are so uninformed its painful. Please research this and understand the tests and its shortcomings.

Inflammation, infection, pneumonia will light up a PET among many other conditions . PETs have over a 30% false positive rate and have been the reason for misdiagnosis, unneeded surgeries etc...the ONLY way to identify cancer cells is a biopsy.

The only reason I'm driving this point home is that these forums purpose is to provide THE most accurate information available .

Eric

Although I don't think there is an 'Oral Cancer' specific NCCN Protocols for PET/CT scans (as there are for many cancers), there is a general NCCN Protocol released in 2007 that covers PET/CT use, testing, training and evaluation certification requirements.

In 2009 the NCCN released a PET/CT protocol supplement stated that based on reported survey data 80% of PET scanners in the US CCC's have been replaced with PET/CT scanners. It also found that the nearly all of these new scanners generate a diagnostic quality CT scan.

In the 2009 supplemental the NCCN mentions several studies from major CCC's that have found as a diagnostic tool the fused PET/CT scan was roughly 10% better than a PET scan plus a separate CT scan and roughly 20% better than a CT scan study alone, or a MRI (with contrast study) alone and that a significant percentage of physicians change their treatment plan after a PET/CT.

The current NCCN Head & Neck Cancer Guidelines (ver 2.2011) have increased recommendations for use of PET/CT scans particularly when staging is a III or IV, and state that post chemo/RT a PET/CT is considered 90% reliable in establishing a clinical finding (of course that is when the established protocol is properly followed).

Since 2007, many major CCC's have move from 18F-FDG tracer to 18F-FLT for post chemo/rt PET/CT scans. The 'FLT' tracer has a demonstrated ability to better differentiate cancer uptake from inflammation. Numerous other tracers are undergoing testing and some trials.

The quality of PET/CT scanners have significantly improved. In 2009 a NCCN survey found ~1800 in use in the US and stated that 100% of PET scanner manufactured and sold since 2007 are PET/CT scanners.

Like most everything, scans have limitations. PET/CT scanner, like many other things, seem to be getting better.

Don

Reading your post, it may not be apparent just how much better Petscans need to become for oral cancers. The current National Cancer Institute points out: [quote]However, PET scans are more accurate in detecting larger and more aggressive tumors than they are in locating tumors that are smaller than 8 mm and/or less aggressive.[/quote] That's a generality, like your statistics which I don't think are accurate when you focus on oral cancer. The numbers I have seen show a Petscan has a false positive rate ranging from 21% to 30% for base of tongue and almost 40% for tonsillar cancer. So for BOT and tonsil cancer, IMO, their success rates are only 60 to 70%. They seem to work great for tumors of the larynx but my CCC docs and Nuclear medicine guys all felt that for BOT, Petscans are not optimal to check for recurrence but very valuable in initial radiation planning to minimize radiation damage and mid TX evaluation.
Charm

[quote=EricS]With respect, Chris your statements in regards to the PET are so uninformed its painful. Please research this and understand the tests and its shortcomings.

Inflammation, infection, pneumonia will light up a PET among many other conditions . PETs have over a 30% false positive rate and have been the reason for misdiagnosis, unneeded surgeries etc...the ONLY way to identify cancer cells is a biopsy.

I agree that they have many false positives and said so.
I'm proof - we thought I also had lung cancer untill my RO figured out my broken ribs from a motorcycle accident is what was showing in the lung area.

What I said they don't have is false negatives. If there is cancer it WILL show.
Chris

Chris,

Read Charm's posts and realize that a PETs are great for picking up larger tumors...smaller tumors not so much. I've spent 3 years reading everything on my condition, my medications, any and all procedures I've had to have and pay for, which include multiple PETs. The more you read on it, the more you'll understand.

Here's a few excerpts from the American Society of Clinical Oncology's website you may wish to peruse.

"Surprisingly, in the 7 bronchoalveolar cancer cases, only one PET scan was positive with 6 false negative reports (n= 1/7, 14.2%). A bivariate analysis (chi-square with Yate�s correction for continuity) revealed that the PET scan false negatives are significantly higher (p < 0.0000007) for BAL when compared to other types of NSCLC cancers.
Conclusions: PET scanning does not appear to be sensitive in the stagging and detection of BAL lung cancer with sensitivity of 14%"

"Results: Three of 15 residual lesions showed increased SUV, while 12 lesions obtained negative SUV. Three lesions with positive SUV consisted of 2 true-positive and 1 false-positive lesions. Among twelve lesions were negative SUV, 11 lesions were true-negative, and 1 was false-negative. The sensitivity and specificity of FDG-PET in predicting the viability of residual lesions were 66% and 91%, respectively. A lesion of rhabdomyosarcoma which obtained negative SUV in FDG-PET histological showed viable cells. A lesion of another rhabdomyosarcoma which showed positive SUV was evaluated as inflammatory lesion. Conclusions: Although FDG-PET showed excellent sensitivity and fair specificity in predicting the viability of residual lesions in patients with pediatric solid tumors, possibility of false-negativity should give us a caution not to rely on FDG-PET to judge the termination of therapy."

"Results: The overall incidence of confirmed metastatic disease in this study population was 6.0%. Twenty-five (13.5%) of the staging PET scans had areas suspicious for a metastatic lesion(s). Twenty-two patients were further evaluated with subsequent confirmatory imaging and/or biopsy, revealing 10 (45.5%) true positives, and 12 (54.5%) false positives. Of the 157 negative PET scans there was 1(0.5%) false negative and 156 (98.7%) true negatives."

Please READ about the test and do not deal in absolutes. A PET can have a false negative. This site is about providing the "best" information to patients and caregivers. Myself, I try and check any information I post before I post it so I don't lead anyone astray. Respectfully, do the same.

Eric

I misspoke here. Too many late nights. Too many balls in the air. Since this is worth keeping alive, I or one of the monitors will prune off the "new" discussion from the old and start it as a net PET thread because the info is good.

Does everyone agree that we should lock threads that are over 18 months old? Perhaps 24 since that is the period for most recurrences to take place if someone is going to come back to add to their thread. Opinions?

All for it Brian, good idea.

Thank you, Brian. We are dealing with precisely this issue. If J indeed has cancer, the tumor is occult--either too small to show up on a PET scan or has resolved. Either of these scenarios are commonly known to happen. It doesn't mean J doesn't have cancer.

J's initial PET scan lit up bi-laterally for neck nodes. However, a bilateral neck biopsy was not performed. Since he had been very sick with throat infections and allergic reactions just prior to the PET, it was not reliable. Instead of BX'ing the sites that lit up, the RO based the TX protocol on the PET results. That was a dangerous and destructive assumption. J has a new ENT and he will review path reports and most likely order scans. I have also found him a new RO. Incidentally, last week J's MO mailed him an excerpt from his chart clearly stating that the level two node positivity was not diagnostic of malignancy. Hummmm..a CYA maneuver? I'm sure he wants nothing to do with a faulty TX protocol.

A scan shows where to look for cancer...a biopsy is the only definitive procedure to determine that something is or isn't cancer. And...just because we can't see it, doesn't mean it isn't there.

[quote=chrisclu]

What I said they don't have is false negatives. If there is cancer it WILL show.
Chris
[/quote]

Chris: Typing an incorrect statement in bold and capitals DOES NOT MAKE IT TRUE. We're all glad your RO was able to tell that the Petscan gave you a false positive on your ribs. But it's simply not true that a PETscan will always show cancer.
We can all have our opinions here on OCF about lots of things, but you can not make up your own facts. The fact is that Petscans only measure sugar intake, and if the sugar intake of the recovering cells or injuries is higher than the tumor's intake, then the tumor will not show up as cancer.
I'm a nag about this because your statement has enough truth in it that it's believable and will therefore misinform OCF readers.
I'm not going to go into a detailed discussion about tumor hypoxia being one of the main drivers of PETscan accuracy pre treatment but there are many contributing factors that render a Petscan less than optimal for detecting tumor recurrence.
A more accurate statement would be: if your cancer tumor has come back, a Petscan may not identify it especially when it is still small and you have had radiation or chemotherapy within the last year.
I wish Petscans were magical but they are not. I learned this the hard way and then did the "book learning" to find out why.
Charm

I personally know of 2 friends that have had cancer where the PET scan did not light up. One friend had oral cancer and the other one had breast cancer. Both were very early stage I.

I'm sorry. All I know is that I'm glad I had the PET before the lymph nodes were removed. It showed the source was tonsil and allowed me to start radiation rather than the neck disection.
My understanding was that any cancer cells would light up. I thought it was CTs that only showed larger tumors and not small ones.
Anyway. I won't be commenting on PETs anymore.

Chris