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