| Joined: Feb 2013 Posts: 3 Member | OP Member Joined: Feb 2013 Posts: 3 | I have over the last three years been treated at the ENT clinic for white plaque on the roof of my mouth. These have been diagnosed as dyspaxia and the biopsys have shown abnormal cells. These places have been removed with laser treatment. As another has appeared and been biopsed twice my specialist has recommended that I should have radio therapy treatment in order to kill any underlying cancerous cells. If anyone has had similar I would like to hear from you and find out how the treatment went. JRB | | | | 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 | Welcome to OCF! Are you sure that the info you are seeking is about dyspaxia and not dysplasia? Dysplasia is a pre-cancer. Have your biopsies shown that you have cancer? I would suggest you ask your docs exactly what they mean by "abnormal cells", ask them if it is cancer or not. Thats what biopsies will show a yes or no answer to if something is cancerous. If its not cancerous, then radiation is something that is in my opinion over kill. Kinda like using a shotgun to play a game of darts. What happens if you would end up down the road getting cancer? At that time you would want to be able to use radiation as sometimes it can be used only once, other circumstances it can be done again. Better to be safe than sorry and keep radiation for killing cancer and not a pre cancer. Many pre cancers will return to the same location as what was removed. Many of them also will not go on to develop into something cancerous. But some will. Sorry there is no set guidelines as to exactly what will make a pre cancerous lesion turn into cancer for some while in others it goes away. Here is a link to pre cancerous lesions. Pre Cancer Have you considered getting a second opinion? If not I would highly recommend getting at least one, possibly 2 or 3 if they all suggest getting radiation. Best wishes! 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome JRB. I did not have similar experience, I have oropharyngeal cancer, but can you tell us more about the histology of the biopsies, type of agressiveness. I'm reading that it is pre-cancerous, and did not progess to cancer yet? We're you are smoker, still smoking, which may have caused continued leukoplakia lesions, any other info that may help like type of radiation, areas to be radiated. Radiation treatments may effect future treatments in the dosage amount that can be given. Although we are not doctors, some may have experienced the same or knowledgable in Laymen's terms to help. There is concern now for "Chemoprevention" with talks about smoking cessation, alcohol. exposure to carcinogens, diet higher in fruits and vegetables, certain vitamin therapy, surveillance, testing, some type chemo's, early intervention with surgery, laser surgery, HPV vaccination, but I have not seen much with radiation. Have they done any diagnostic testing like a PET, CT of MRI? Another is where you are being treated? Hopefully a Comprehensive Cancer Center, with a team of multidisplinary team of doctors.
Last edited by PaulB; 02-20-2013 04:04 PM. Reason: Chemoradiation, diagnostic
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Feb 2013 Posts: 3 Member | OP Member Joined: Feb 2013 Posts: 3 | Hi Christine, yes the word is Dysplasia. What the specialist told me was there are abnormal cells which may or maynot be cancerous but they are concerned that under the top cells that are being lasered off there could be some cells which are working into the body which could be cancerous.
| | | | Joined: Feb 2013 Posts: 3 Member | OP Member Joined: Feb 2013 Posts: 3 | Hi Paul yes I have have had the CT scan today. I have been under a very good hospital in London with this complaint for approx 2 and half years. I have had laser treatment twice to remove the problem areas. Only so much laser treatment can be given otherwise the palett will become to soft. Once the results of the scans are put together then a treatment course of radio therapy will be worked out. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good luck with everything. Keep us updated.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Radiation is a big undertaking without a definitive cancer DX. How long are they considering? Ideally they should surgically remove whatever is suspicious then biopsy it all.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | Before attempting to do radiation for something that you dont know if it is cancer, PLEASE get a second opinion and a biopsy. Without these things then its pretty difficult to make a good informed decision. Dont rush into radiation to kill what might not even be cancer.
Many times dysplasia will return. Many times the returning dysplasia is still not cancerous. Of course something isnt right to make it return but it needs to be biopsied to find out if its cancer.
Please be very very careful!!!! Radiation carried with it a whole different set of problems far bigger than what you described with having the laser surgeries. 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 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | I don't see anywhere in this thread that you have had a biopsy of the area that would give them a full tissue thickness understanding of what is going on. Knowing what is under something (seeing a punch biopsy that let them look at everything from the basal cells to the upper epithelium- ie a view through the entire architecture of the tissue), would be more diagnostic and therefore allow more definitive treatment plans. Even though right now things being lasered off (which is only a few cells thick of removal) is perhaps the simple idea, it may not be the most effective way of doing this. Perhaps a deeper surgical procedure (after identifying something deeper in that biopsy), would give you a longer lasting result.
Getting radiation is FOR MOST PEOPLE a once in a lifetime event. To undertake that when you do not even have a malignancy yet seems a bit of overstepping. It is also life altering when there might be more conservative measures that would yield the same outcome.
Someone mentioned causes like smoking, and I don't see that addressed in the thread. If you are doing something that is causing these pre cancers to occur is another consideration, if by stopping this irritation the recurring process might also be stopped/interrupted.
Again none of us are doctors, just observers of others paths, solutions and of course our own experiences. But I think the idea of a full thickness biopsy is the first thing you should have explored. With that information you can make better decisions.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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