| Joined: May 2010 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2010 Posts: 61 | I had squamous cell cancer of the tonsil and lymph nodes (both sides of my neck). I am 3 years post diagnosis.
My oncologist seems confident that the cancer will not return. However, I do recall him or the radiologist saying the radiation could give me some other kind of cancer down the road...
I have a former colleague that went through successful testicular cancer treatment just before my treatment. He was just diagnosed with prostate and breast cancer.
Another friend in my local SPOHNC chapter was re-diagnosed with liver and lung cancer recently.
Is there any data on other types of cancer occurring after oral cancer?
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | There may be some statistics on the main OCF pages. The further out you are from treatment, the less likely the chance of it coming back. Sorry to hear about so many people you know having to go thru the battle again. Its bad enough being a patient once! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Mike
I've seen a few studies that cross referenced the Surveillance, Epidemiology, and End Results (SEER) program numbers but all they showed was that if you had oral cancer once, it could come back. Not exactly news. Since many people continue to smoke after cancer (amazing huh?) they can develop lung cancer. Plus sometimes oral cancer metasizes and spreads to the lungs So any numbers you find would just be SWAGs IMO.
Having had radiation twice, and over the "maximum", I had similar concerns but my RO said that its a theory that so far has not been substantiated.
As far as prostate cancer goes, every man who lives long enough will get it, but the vast majority die of something else.
While radiation is indeed the gift that keeps on giving, by itself oral cancer radiation TX has not been proven to cause other cancers in any credible study although of course the woo woo sites on the internet are full of such claims.
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2010 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2010 Posts: 61 | Thanks to you both.
Charm, what is the definition of 'over the maximum' as it pertains to radiation treatments?
I know I just laugh at people that are afraid of the airport body scanners, after my 35 radiation treatments.
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Mike
There have been amazing advances in radiation therapy. That's why I used those quotation marks with maximum. My understanding from my RO is that generally for head and neck cancer, 77 GY used to be considered the "maximum". Beyond that dosage, too many bad side effects. Many oncologists still mistakenly believe that once you have had the "maximum" then you cannot be radiated again in the same area based on old outdated studies. But with the alternative radiation delivery systems to IMRT, including CyberKnife (sterotatic radiation), Proton Therapy, especially IMPT, etc , people like me who get a recurrence can now be treated again instead of dying. Sad to say, we still get posters here whose ROs are living in the past.
Different cancers in different areas may be different, I never researched that.
Since you mentioned scanners, they and Xrays CTs etc use a different measurement. In one sense, one Gy (Gray) equals one Sv (sievert) which is how they measure scanners (actually mili sieverts) but there are other factors than dosage Wikipedia explains it the simplest [quote]The sievert (symbol: Sv) is the International System of Units (SI) derived unit of equivalent radiation dose, effective dose, and committed dose. Quantities that are measured in sieverts are designed to represent the stochastic biological effects of ionizing radiation. The sievert should not be used to express the unmodified absorbed dose of radiation energy, which is a clear physical quantity measured in grays. To enable consideration of biological effects, further calculations must be performed to convert absorbed dose into effective dose, the details of which depend on the biological context. This can be far more complicated than just multiplying by a weighting factor..[/quote] Best guess is that we've had hundreds of thousands scanner doses 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2010 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2010 Posts: 61 | I'm sorry if I come across as ignorant, but I didn't do any research on this. How would I know how many GY's I've been exposed to, if I had 35 radiation treatments? Is the 77 limit just number of treatments, or would I need to know my dosage?
Thanks!
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Mike
Hey, if you don't ask questions, you can't learn. One of the great things about the OCF forum is finding out stuff. The only way to know your radiation dosage is to ask your RO. Each patient gets an individually tailored radiation field and you can't calculate dosage just from the TX number. I had weekly meetings with my RO and he would go over how many Gy I got that week. It would vary by day. I got an average of just shy of 2 Gy a day for the IMRT with 40 TX for 72 Gy total. With the cyberknife it was 5 Gy a day for 5 TX for 25 Gy total. And since I had 97 Gy and am still here posting, it's obviously not a "limit: or the "maximum." although as I mentioned, people used to think so.
I know you are worried about a possible recurrence, but after three years you are on the right side of the statistics. Even if God forbid, it came back you could still be treated. We have lots of members in the recurrence club (NO, we are not looking for new members) who are still going strong.
Your radiation dosage is not some urgent information you need, at this point it's academic, so you could email or write your RO. If you are still seeing a follow up doctor, he or she could also access that information for you. Keep the Faith Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | On AVERAGE most of us that had IMRT received an avg of 2 gys a Tx for 35 rad Tx's equalling 72 gys. I was told waaayyy back when I was treated 6 years ago that I was receiving the lifetime max rad and IF I had a recurrence there was nothing that could be done, radiation wize. Comforted me for many years post Tx.
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.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | In fairness to all the ROs still relying upon 20th century studies, I saw this 2011 abstract [quote]Although the results of more recent studies using contemporary treatment techniques and conformal delivery methods have been somewhat more promising, the role of re-irradiation after previous full-course radiotherapy is still considered investigational by many. Numerous questions remain unanswered, and practical guidelines for clinical decision-making are sparse.[/quote] Practical Considerations in the Re-...eck Cancer: Who, Why, How, and How Much? Unfortunately, I can't access the full study (okay, I could but I don't want to pay $30). I love the title though. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Lets see - 62 treatments x 2 whatevers per treatment = OMG!! I certainly don't need to worry about standing too close to the microwave! I also glow so I am easy to see in the dark  . I too was told that I had had the maximum when I was diagnosed with my recurraance - even my surgeon thought I had received the lifetime maximum. My RO however decided otherwise (as there really was no other viable plan) and I am here today because of him. I happily posted today that I am 8 years since end of treatment for 1st dx, 4 years since end of treatment for 2nd. Happy to hear about your 3 year mark. Continue to be vigilant - and never dismiss any option that will help you. Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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