I had surgery for an invasive squamous cell cancer tumor in the back of my neck at the base of my skull earlier this year. Recently, a friend gave me a biography of George Harrison, which states that his cancer first presented as a tumor in the back of his neck etc. in 1997. Was his cancer oral cancer, or cancer of the neck, or or something else? I am still confused. Are there types of regular checkups that I should be having apart from dermatological? Many thanks.

This is all an issue of semantics. Oral cancers comprise more than 70% of all head and neck cancers. Broadly speaking, within oral cancers you have those in the anterior of the mouth called oral, those in the back of the mouth and the top of the throat and soft palate referred top as oropharyngeal cancers, those in the back of the mouth, soft palate and involving structures above the back of the throat as well are nasopharyngeal cancers, and those of the throat itself. Laryngeal cancer is usually referred to as a cancer unto itself, though the risk factors for it are the same as oral cancers. There are about 12,000 laryngeal cancers diagnosed each year, so if you added those to the categories already mentioned which have about 30,000 diagnoses, you would get about 42,000 per year. Then to further muddy the name-based issue, this cancer produces second primaries, as well as metastasis from the original primary cancer. Alan King was originally a maxillary oral cancer patient. When he died just a few months ago, 7 years out from his original oral cancer (which he had been declared disease free from) it was from lung cancer. However, this pulmonary cancer was a second primary from his oral cancer... so the question could be raised from which did he die? Semantics. To the best of my information Mr. Harrison originally had a tobacco induced oral cancer for which he was treated, and declared cancer free. It involved his throat like many of us as well as an oropharyngeal primary. Unfortunately he returned to smoking after his treatment, a testimony to the addiction of tobacco more than a weakness of the man, and developed a lung cancer, which then metastasized to a brain cancer. This would be considered a second primary even though the continued smoking was no doubt a factor. Oral cancers kill people not from the disease in their mouths, but from the metastasis of that disease to vital organs. Reporters have a poor understanding of this mechanism, so they will report that George Harrison died of a brain tumor, which is true but does not reflect the entire etiology of the process that created the disease.

Brian,

Great post. I was unaware that George had returned to smoking. That is a shame.

Thank for the info....
-rh

Brian,

You never cease to amaze me at your wealth of knowledge of this disease. I am honored to know you and am truly grateful that you are using your talents to serve others.

Lynn

Brian, Thank you for your very informative reply. I appreciate your knowledge of the subject and your ability to share it.

That was a great post, Brian. I have heard that Eddie Van Halen returned to smoking as well.

-Brett

Does anyone know exactly what type of cancer Eddie Van Halen had and treatment he was given? Just curious, don't mean to hi-jack...Thanks, Carol

Eddie had tongue cancer, SCC, and was treated at MDACC. He had a life long relationship with both tobacco and alcohol, which made him an ideal candidate for this cancer. He is another that reportedly has not given up smoking after all this.......... If he was treated at MDACC he had the conventional treatments recommended by all the comprehensive cancer centers.

Thanks Brian, have a great day!!!! Carol

Brian,

George Harrison is my second favorite musician, behind Eric Clapton. Thanks for the great posts and I am sure we share a lot of the same interests in music. Can't wait to meet you in person.

Ed

Carol and Brian,

I happened to see a little blurb in yesterday's entertainment pages of the Boston Globe about Eddie Van Halen. It mentioned that he was in town for some performances and stopped by the Ritz Carlton to do some impromptu playing in the hotel lounge, then stepped outside for a smoke. Sad!

Cathy

Oh my gosh! That is sooooo sad. Thanks, Cathy

I wonder whether anyone has an advice for me apropos the last part of my imitial post: "I am still confused. Are there types of regular checkups that I should be having apart from dermatological? Many thanks."

Penelope,

I would think you would follow all the same schedule as anyone with SCC. Have you not had any tests since surgery, i.e. PET/CT, CT with contrast, etc.?

Minimum, I think would be an annual chest x-ray and regular follow ups but I am not sure in the case of only a tumor in the base of your skull. Did you have radiation as well? The term "invasive" implies to me that you should have had quite a few diagnostic tests, comprehensive treatment and thorough follow up.

Ed

Hi Penelope,

I am embarrased because I have been following this thread of posts and missed the more important part: Your question! Ed might be exactly correct, however I would think that your staging might be an important indicator as far as future followup. Generally the more advanced stages of cancer would indicate closer followup. If I were you I would discuss this with a different doctor than you have presently. The reason is because it never hurts to get a second opinion.

This is confusing - I take it that you had skin cancer not oral cancer hence the dermatological examinations. In the case of oral cancer it makes no difference what staging it is. The practice guidelines for followup are:

visual and palpation exam every:

1-3 mos. year 1
2-4 mos. year 2
3-5 mos. year 3-5
6-12 mos. year 5>
Annual chest xray

For skin cancer the exam frequency is every 6-12 months for life.

You go to this link and find out the specific practice guidelines for skin cancer:
http://www.nccn.org/professionals/physician_gls/PDF/nmsc.pdf

George Harrison had oral cancer.

Oh, so none of us need PET or CT or MRI scans That ought to reduce the stress level a great deal.

Well they are not part of the NCCN recommended guidelines and my head & neck surgeon doesn't order them either. His position is that the palpation exam will pick up a recurrence faster and more accurately than scans. He was trained at UCSFCCC. We've had numerous discussions about this. I will test the waters again in September when I see the RO.

And I didn't write the guidelines - I just quote 'em. I am a little surprised that they don't recommend a PET/CT for distant mets, since this is a known risk. I did have 2 MRI's post Tx.

My oncologist has been routinely doing the visual/palpation exams and chest x-rays consistent with that schedule. The only time he orders CT's or MRI's is if I have specific symptoms he feels he needs to investigate further.

Cathy

Dare I say perhaps the "guidlines" are a clue to why recurrance survival statistics are so dismal?

Quoted statistics about the manual palpation is that 20 to 30% of the time it is not accurate. Yup I know we have been down this path before but I can't help but think that these "recurrances" are not recurrant at all! The cancer was there the whole time.

Advocacy is what this is all about and I think the guidelines are not considering technology improvements. Even the guidelines are rather "loose": 1 to 3 months, 2 to 4 ect. I believe that latitude is to allow for "CLOSER" followup as might be desirable in more advanced cases.

In my humble opinion, treatment (and followup) modalities based upon statistics of outcome will bring virtually no improvement in outcome. It also seem to me that the medical "industry" (which includes the insurers) are inclined to take a "this is the best we can do" position, when in fact there is much more that might be done.

Just as early detection is important in the origional diagnosis, Logic dictates it is important in "recurrant cases" as well.

Can someone define what "palpation" exam is?

I know for me, I'm thanking God that my ENT ordered a PET scan back for me in May. I went to see him on a whim back in late April (wasn't a scheduled appointment). He did a manual exam of my head and neck, and while I complained of some tenderness in some areas, he didn't feel anything abnormal (no lumps or enlargements).

I got a PET done at his insistence ("for your peace of mind"), and it lit up in one lymph node. He still didn't feel anything abnormal after the PET, though it was tender when he pressed in that area. Even a CT guided biopsy of the suspicious lymph node came back negative for cancer. It wasn't until my ENT went into my neck for an excision biopsy did he confirm all the suspicions that I had a recurrence... He said the tumor was the size of a quarter. Maybe it was too deep in my neck to feel?

So I guess, technically my docs manual exam is what triggered me discovering my recurrence (my complaints about tenderness in that area surely helped). But I think PETs, CTs and MRIs, while not always 100 percent accurate, are invaluable in the information gathering phase of fighting this disease... I can't see why the guidelines wouldn't be more stringent, especially as others have said, due to the risk of distant mets and second primaries...

If it weren't for my ENT's talking me into doing a PET, I would still be waiting for my regular six-month post-radiation followup with my oncologist (due in July) with a tumor still in my neck (and possibly on the move since it showed extra capsular spread when they took it out)... The guidelines should be as AGGRESSIVE as possible...

In late October my medical oncologist notes indicate a 1 cm mass in my neck and the otolaryngologist said it was just the carotid artery. The medical oncologist notes say a neck dissection looks eminant but the otolaryngologist said no. In December and in March, the PET showed no activity in that area. I was ready for rock, paper, scissors...or in Japanese, jon, kin, pon, . I beat them, by the way!

Ed

Mark,
I think that your statement about "...recurrance survival statistics are so dismal" as a result of the practice guidelines is speculative and a disservice to all of the people doing cancer research in this country.

The guidelines are published by a consortium of the top leading comprehensive cancer centers/research centers. They don't always agree either and that is usually noted. But at least there is a mimimum standard of care for cancer patients. Some have died here because they haven't even had access to the minimum standard.

New technology has to be validated for its efficacy before it can become a standard. In the case of prostate cancer the death rate actually increased with some new technology "advances" so they were dropped.

I should mention also it is usually the manufacturers of the high technology devices that are pushing them for expanded "indications for use", usually based on data from relatively small patient groups to prove safety. Efficacy is another issue and it takes many more studies with larger patient groups and demographics to validate that. It is a long and arduous process for something to become a "standard of care".

What about all of the clinical trials going on constantly throughout the country is this truly indicative of "this is the best we can do" position...?

There was an article just published that survival rates from all forms of cancer is up by 14% and the goal is a 70% overall survival rate. Obviously the standards are working for some peoples cancers.

In my case, my head & neck surgeon is going to follow me every 60 days for the next three years, exceeding the standards. It is ultimately left up to the health care practitioner to determine how intensive followup will be.

The insurance companies (as well as medicare) have their issues as well and this is part of the national debate on the balance between which types of tests are necessary and which are excessive. This is an extremely complicated advocacy issue. Do you spend millions on testing and treatment for someone who has a short time to live or is elderly? What does that do to the availability and costs of services to the rest of the population? Medical care is a limited resource -what is a fair and equitable way of allocating it.

IMHO the recurrence/survival statistics are bad because we fight a particularly insidious and aggressive form of cancer. To balance this out there are even worse forms of cancer, like pancreatic or liver. A person dies every minute from cancer in the United States. Once an hour a person dies from oral cancer.

I understand the need to lash out, I'm angry too, but instead of targeting the researchers why not spend the energy targeting environmental pollution, tobacco products, drug and alcohol use and other smoking guns. The researchers are like the Dutch boy trying to hold back the flood.

Penelope: My two cents, for what its worth, is I kind of agree with Mark. CT/PET scans are tools available to doctors to help find, diagnose, this very nasty disease. The technology exists and we should use it, especially with people who are already victims. The way the medical industry works in this country, and I think we have the best system in the world, though just because its the best doesn't mean it can't be improved, insurance companies make expenditures for expensive tests more difficult if it is not part of a "standard" medical procedure. In fact, they make it very difficult for doctors to collect fees by arbitrarily denying payment, reducing current payments for years old mistakes they say they made, etc. My wife is the insurance specialist at a doctors office and vents every night about the abuses of insurance companies. However, that is a different story. Bottom line, Penelope, is if your doctors aren't recommending scans periodically, you should at least ask why not and be ready, in my opinion, to insist that you get them at some regular interval. My first scan after surgery is in mid-August and will hopefully be negative. So I suggest you get a scan soon also.

Thanks very much, all. I'm taking my leave from the discussion now. I wish you all the best.

Gary,

It seems you want to

Hi Mark,
I think Penelope has already checked out of the thread.

I did want to point out a few facts, mainly for the benefit of the curious on how these "oncology practice guidelines" come about. There are about 20 member institutions (all comprehensive cancer centers) in a panel who, based on research, clinical trials and patient data, retrospective data, etc. analyze and amend continually the "oncology practice guidelines" for all forms of cancer.

Scans are useful components of the total diagnostic picture. They have limitations, the worst being that they are not capable of detecting a tumor smaller than 2 mm (1/8"). I AM speculating here but if you had an undetected tumor and it is a year until your next scan, it would probably be palpable, or at least create other symptoms, before the scan. This is the impression I get from several discussions with the head & neck surgeon that is the primary doing the surveillance. I have yet to meet the the Onc or RO and get their opinion since I am on a 6 month schedule with them. It was my RO that ordered the PET to begin with.

If you wish to "speculate" that PET, PET/CT or whatever will help you to avoid recurrence that's great- go for it. I felt that I had to point out, in balance, that the science hasn't caught up with that yet and that's why it isn't in the guidelines (yet?). And also it is still ultimately up to your practitioner what will actually be done in the way of post Tx surveillance.

I agree with you about going to any lengths to insure against recurrence and early detection, especially in the case of distant mets. In fact, I totally agree with almost all of your opinions. I am not always successful but I try to insert a "IMHO" in my posts when I don't have concrete facts.

As far as the "dismal survival statistics" before those of you reading this start heading for the fire exits. The average 5 year survival rate for all forms cancer is 62%. It is 53% for oral cancer. This is a complicated statistic to decipher. First off it is an "average" and persons with lower stages have signficantly higher survival rates. Secondly, many recurrences are brought about by people who refuse to give up smoking, chewing, drugging or heavy drinking.

Many of the state of the state-of-the-art treatment choices that we have today for oral cancer (such as IMRT and PBT) were initially developed for prostate cancer so there are links.

I never suggested that you or anyone "be considerate of the limits of medical care", I merely threw it on the table as my oncologist threw it my table when I told him I was a patient advocate. In fact the whole subject of triage, who gets care and who doesn't, what insurance companies pay for, how much money are they willing to shell out for a person with limited life expectancy, makes my brain melt down...

I wanted to add my thoughts on Gary's and Mark's discussion. I had a follow up mri on Dec 24th that was to be my baseline. I had no physical palpation of my neck after completing imrt radiation in early Nov. The next scan I had was in early Feb and I believe it was a combo pet/cat scan. If you remember I posted that pathlogy report word for word on the board. It suggested some areas of concern but being so close to end of treatment the logical step was to wait and do another scan in May.

As you all are aware this scan came back in a most negative form. The follow up scans in June comfirmed that indeed the cancer was back in the surgical bed and had also met to my lungs. I did not feel any different than right after treatment ended in early Nov.

Gary, The on'gist did a hands on feeling of my neck, under my arms, etc, today and told me with the surgery I had nothing on that side of my neck felt normal. I have no swelling or pain in either my chest or neck. Tha scan is what picked up the reoccurance. My point is I think everyone is different. I knew from the get-go I was in deep shit. The tone of the doctors, body language etc. Being a stage 4, very poor margins.
Still some left on the carthoid artery. In my case the guidelines didn't matter.

They also told me today that met to the lungs from oral cancer is uncureable! They may slow the process with the Taxol & Carboplatin but that would be it. I may live longer than they are planning on. I sure as hell intend to. I gained 1 lb. in one week. No side effects yet from the chemo. Hair should start to thin if it's going to in about 10 days.

I am planning on enjoying what is left of my life. I have no fear of dying, My faith is strong. My biggest concern is the grief my wife, kids and friends will feel. For that I am truly sorry. When my time comes I would sure love it if when you think of me do it with a smile on your face. I was always told I smiled easy and often.

Sorry to wander off but I had a long discussion with the on'gist today.

Your Friend, Danny Boy

Danny Boy,

I am always in awe of your posts. Actually invision you smiling and typing away.Do what ever you want. Those who know and love you will always have you with them [like ET ] I don't believe in statistics maybe that's why I didn't pass the stupid course.Live everyday and don't even count them.It aint over till the fat lady sings, so don't go to any fat lady shows. My apologies to all of us who may be calorically challenged . You go Babe as my 16 yo says.
Love
Diane

Wow Danny! Tough day for you and I am so sorry! But I shall be sorry with a smile on my face!
I am so eager to meet you and your family in Las Vegas come September. We shall have FUN!
Love you and God bless,
Judy

Danny Boy,

I hate to change the intensity of the thread as it has been quite the debate, but...

I feel your pain just as I feel your love! My life has been different because God chose our paths to cross, for whatever reason. I thank you for that, for sure. My biggest struggle the past year is eloquently conveyed by you...the grief of those left behind. My uncle dragged me to the Promise Keepers this past weekend. I mentioned that I, too, have accepted dying and know I am fully prepared when my time comes. When I mentioned the sorrow in leaving my family, a close friend of my uncle told me that I am doing right in praying regularly for total trust in Him to take care of those left behind. After all, who could we trust more than Him?

When it is time for you to look into the face of Jesus, I will certainly be smiling for you, celebrating your life here as I will be joyous in what is facing you after this life. Even though I have only known you a small piece of your life, I know you are a fine example of what Christ wants us to be. Your rewards will be great!

YBIC,

Ed

I had to reopen this topic to put one last post in here. If anyone wants to continue this, please start a new thread and reference this one. My position in all this is relatively unchanged. I find things to agree with in everyone