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#127397 01-06-2011 04:35 PM
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mrsM Offline OP
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I would like to know if anyone knows the main part of the body that tongue cancer will spread to? I heard neck and brain. Also, if you know what the life span is with this being spread? I know miracles do happen.

Thank you!

mrsM #127407 01-06-2011 07:41 PM
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Statistics are scary and I don't like them personally because they can give you false hope and false despair. I have chosen to listen closely to my surgeons because they have proven that I can trust them. That is just my opinion. Best wishes to you- some people have the tumor excised and then never have another bad day in their lives. Others- well..... maybe a few more bad days- but there are a lot of members of this forum, so that says that lots of people have a life span.


Lisa from Montana
40 years old
squamous cell-left lateral tongue & lymph with free flap skin graft and re-section,
PEG tube,
Total Glossectomy without Laryngotomy April 2011
Still mouthy as hell
plenty of war wounds
craving a cheeseburger

***10/14/11 UPDATE--Lisa has passed away
MTlisa #127427 01-07-2011 06:14 AM
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I was told that leaving the nodes this cancer would first visit the lungs and/or brain but we have seen posters here that had it show up elsewhere as well.

Most of those posters here in my 5 years that succumbed did so within a year, give or take a few months from Dx but obviously many factors can play into that but it does seem that once everyone says there's nothing that can be done, remaining time is measured in short months.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #127440 01-07-2011 08:26 AM
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Liver and kidneys are other places SCC can show up, as far as distant metastesis is concerned. Tumors send out thousands of cancer cells every day into the bloodstream. The bodys immune system typically takes them out (if you are immunocompromised, such as AIDS patients, you are in deep trouble). These cells need a place where they can "stick" and that is typically where transistions in the blood occur, kidneys, liver, lungs, etc. H&N tumors can also pass through the respiratory system so there is also a risk of esophogeal and lung cancer from that aspect as well. The brain is so close that metastesis there is also a possibility. Brain cancer is more problematical because of the "blood/brain barrier" which prevents chemo drugs from entering into the brain. Brain involvement would be classified as either a local or locoregional metastesis. Brain mets from OC are relatively rare.

Some here have refered to a nodal involement as a metastesis but more than likely a positive lymph node is a result of the primary (BOT or tonsil for example) and is actually secondary to it so it's technically not a metastesis. Nodal involvement always bumps the staging up to III or IV, incidentally. Cancer can also be spread through the lymphatic system (which is interconnected throughout the body) so that's why ND's are performed if lymph node involvement is suspected. Cancers can also spread through the spinal cord and that is the most dangerous condition. It's like the cancer is on the freeway and spreads everywhere. If a doctor suspcts that he will order a bone scan performed. Fortunately we do not see that much with H&N cancer

Distant metastesis is what makes me lose sleep at night (well, truth be told, I don't dwell on it that much anymore) - hardly anyone gets screened for that. At least the critical areas of the brain are included in a typical H&N MRI or CT scan. Distant mets may not show up for years after the primary has been treated - or you have have an entirely unrelated cancer so who knows? My mother had breast cancer, melenoma and cervical cancer and none of them were related.

As far as the lungs go, the NCCN guidelines recommend an annual chest x-ray. A spiral CT is the best lung scan but has a LOT more radiation, so I wouldn't recommend an annual one - even if the doctors would order one.

There are many other factors in this very complex topic - tumor type, differenation, time in place, etc.

This is really more of a academic discussion rather than directed to a specific situation. You can literally drive yourself crazy examining all of the technical possibilities (that may well never happen). My advice - take it one day at a time and stay in the "now". The future belongs to God.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #127449 01-07-2011 09:38 AM
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During treatment I recall my MO saying after the neck nodes it usually metastasized to lungs. I wasn't aware of the risk prevalence to the liver and kidneys.

Any info on the value of an annual MRI or simple chest X-ray instead of a PET/CT to cut the radiation exposure?

I mentioned this to one of my RO's, but got the feeling he didn't think the exposure level from the newer CT's was significant enough to statistically cause a problem within my remaining life-time.



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #127458 01-07-2011 12:15 PM
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Gary, thanks for all that good info. I note that you mention that nodal involvement always means stage III or IV... interesting. I was told that my cancer was stage II with unknown primary, but yet I had two infected nodes - the initial one that drove me to my doc, submandibular and the size of a walnut, and a second much smaller one that the surgeon found during my neck dissection.

Any thoughts? (I'll also be interested to read anything you might have to say about Don's MRI question!)

Many thanks.
David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #127466 01-07-2011 02:34 PM
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I looked it up on the NCCN staging page for oropharnyx cancer to make sure. I typically validate the information I give on peer reviewed and trusted sites. The NCCN sets the standards for cancer care worldwide. I've been been in the medical device industry for over 30 years. I worked for Siemens Medical Labs in the medical Linear Accelearator group (and I was treated on a Siemens Mevatron 6).

T1, T2, or T3 + N1 = Stage III. After the surgeons discovery you should have been re-staged. Hey mine was stage III/IVa so there is always hope.

Last edited by Gary; 01-07-2011 02:37 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #127471 01-07-2011 03:08 PM
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Ok I'll bite. My CCC required annual MRI's for several years post Tx. My RO, there, wrote the book on H&N IMRT treatment - UCSFCCC. This was their protocol. They were read by the reading radiologist where the scan was done then again at the CCC by their reading radiologist. My first MRI's were not happy ones either so they caused me more angst than I needed at the time. it was an entire year before the MRI's were truly clean.

Some get PET (or PET/CT) scans but it is not on the list of NCCN protocols for cancer follow-up. Some doctors order them anyway. They are also the most expensive scan so insurance companies are reluctant to pay for them unless the doctor presents a compelling reason ($3K - $7K).

Scans are just a part of the total diagnostic package and by no means absolutely conclusive or definitive. MRI's can only resolve tumors down to 2mm and they are the most accurate. Scan reports are often filled with frightening conclusions from the reading radiologist as they must list every anomaly they spot (probably more to CTA), so it must be subject to further interpretation by the ENT or H&N Surgeon and possibly direct visualization may be ordered as a follow up to it. So never freak out if you get your hands on a raw, uninterpreted scan report.

Don,
This will tell you everything you want to know about the risks and benefits of scans and x-rays:

http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_xray

Last edited by Gary; 01-07-2011 03:12 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #127500 01-08-2011 10:16 AM
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Gary, many thanks. I had no doubt that what you were reporting was direct from the medical horse's mouth. And in fact I found the page to which you referred (not that I doubted you of course!) and sho 'nuff, anything N1 is stage III or occasionally IV. This makes me curiouser and curiouser.

Wonder if the TX in my case has anything to do with it - something I know Brian has written about in these pages and about which there seems to be some controversy, or at least differences depending on where one is treated. I've always had supreme confidence in my medical team. While I wasn't being seen through a CCC per se, these are all doctors at St. John's hospital in Santa Monica and some are on the faculty at UCLA - which is a CCC.

I'll see if I can get a clarification from my RO at some point and will report when I do.

d2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #127513 01-08-2011 06:21 PM
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There is a link in the "other resources" section to the NCCN guidelines on the main OCF site for those interested in what the correct cancer treatment protocols are and it covers all forms of cancer. We know that many forum members do not utilize other sections in the main pages but we encourage all of you to explore them. Many common questions are answered there. This is not directed to you personally, David, but to all resding this post. OCF has invested a lot of time and energy into providing peer reviewed information on every aspect of the disease.

Check it out.

http://oralcancerfoundation.org/resources/index.htm


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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