#82498 10-21-2008 11:30 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | My Mom, who has never smoked and hardly drinks more than a little red wine now and then, has a splotch. Lacking a better description, it is a pinkish-whiteish flat mark on the soft palate of the left side of her mouth. About 8mm x 12mm
It is not painful. It doesn't seem to be growing. Here's the problem. She's had it for MONTHS now!
She's been to her regular Dentist who did the not so perfectly diagnostic swish thing. She went to an ENT who said he was "nearly sure" it wasn't cancer and scheduled a follow-up for DECEMBER !!
Now, she is not sleeping. Not eating. Not happy. She is miserable and crippled by fear.
I am sure seeing her son nearly eat-it with Stage IV SCC doesn't help keep it in perspective, and I am honestly starting to worry.
Maybe this ENT is wrong..? it could happen.
She's my best friend in my life. She is 64 and not as young as she used to be. (Otherwise very healthy though, doesn't abuse herself, she is normal weight, etc)
She needs to get a 2nd opinion at the least. I am over 400 miles away.
I don't want her to waste any more time figuring out who to see. Where to go.
I know most of the very knowledgeable cancer ENTs are not interested in diagnosing. Seems to me they prefer to get patients AFTER they have been definitely diagnosed by their GP, etc.
The good news is, unlike me, she lives in civilization. South Orange County (Brian?) to be more precise. Ok, ok, Laguna Niguel. You forced it out of me.
Since she is in So Cal there must be someone she can go to rather than picking up the Yellow Pages (Does ANYONE really use those phone books anymore?)
Any suggestions would be greatefully appreciated!
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
| | | | 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 | Your are a very good son, she is lucky to have you looking out for her. I would try an oral surgeon to see if a biopsy is needed. IF and I do say IF it is cancer then the biospy is the way to know for sure. Not all spots are cancer. Some ENTs or even dentists do biopsies too, but seems oral surgeons do them more often. Wishing her well with the outcome.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | a biopsy is the only way to prove if it is or isn't cancer...your mom needs one
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Thanks for the biopsy suggestions...I agree of course that biopsy is the gold standard in dx.
However, the ENT she saw last week said: "I wouldn't know what to biopsy...there's nothing to cut."
Not sure what that means, I wasn't there personally to push the issue, but it seems to me a "punch" biopsy would be the way to go.
He can most certainly collect a small sample of the "area" that way.
Thank you again for the support!
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Michael, What makes you state:
'I know most of the very knowledgeable cancer ENTs are not interested in diagnosing. Seems to me they prefer to get patients AFTER they have been definitely diagnosed by their GP, etc.'
I don't think that's true. Rather than running around finding another doctor, why don't you send her to one of the many CCC center where she lives and get an answer from someone who deals with this cancer everyday. Those of us who start out at one of those are not usually running around for second and third opinions, admittedly, you're were exception to that rule. I actually can't believe you didn't send here to a CCC in the first place.
Take care, Eileen
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Eileen. Of course you are right. Unfortunately, my Mom is a bit stubborn like many (like Mom like Son  Anyway, when it was just a white splotch and had only been observed for a couple weeks, there was no cause for alarm. She had some new braces (Invisaline?) around September 6, and they routinely cause sores. The "sore" (which actually isn't sore), was first noticed by my Mom in the mirror a couple days after that. So, to be accurate, it has been about 6 or 7 weeks now and she has been back to the DDS a couple times, and this one ENT twice. I called 2 SoCal CCC's intake dept's and both told me she would have to have a dx before making an appt. That's where I get that perspective, but of course it could be way off. Also, 2nd and 3rd opinions are not a bad idea when the standard of care for one's case gives 2 completely different lines of suggested treatment and the decision is so crucial. So, if she didn't get a 2nd or 3rd opinion at this point she'd be just worrying and waiting for a December followup.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Maybe you can take her to a Dentist that can do a brush biopsy before seeing the specialist in December.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | hey again Ray...
I spoke to her DDS and she said she did the ViziLite (sp?) test already.
I seem to recall Bryan thinking these tests (at least a couple years ago), were not very conclusive.
The dentist said she didn't want to do any cutting since it looked like just a skin discoloration to her.
I am working with getting her an appt at UCLA now, so I'll post when we know more. THANKS AGAIN!
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I had white splotches biopsied for fifteen years before one spot grew a tumor (which was clearly different from the white spots; overlapped the skin and had a tiny vascular system running through it) -- Given liability, I am surprised that docs aren't clamoring to biopsy it -- They make money and everyone knows for sure.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | Vizilite is not like the Velscope. It is a avery weak science, and the test (IMHO) isn't worth the cost of the testing components. The company is almost our of business, after nearly being de listed from the stock exchange. I wouldn't trust anything in my mouth to the outcome of this testing idea.
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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