| | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) |  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | I am very happy that you have taken this step. Now you will get a black and white answer, which will allow you to follow an appropriate course of resolution. Pushy is not always a bad thing. It's not their life that is in question here...... and too often people behave with that perspective.
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.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Lisa,
One step at a time. I hope I come home from my vacation to read that it was nothing.
Brian is right. There is a lack of understanding about what the VELscope shows. There is a big learning curve. We have been using it since 2/2007. The first time I saw the bright red bacterial areas, I freaked out. Took some time to figure it out.
It's good that he is doing a thorough oral cancer screening. I wish more dentists and hygienists were doing them.
Good luck.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Hi all,
I would have to say, Brian may think he's not the sharpest pencil in the cup, that said I would brand him more of a mechanical pencil with umlimited refills. You can always count on him and he never lets us down here.
I agree with the previous statements and have confirmed with LED dental that "red" is usually bacteria on the VELScope.
The VELScope, as I have stated many times, is just another tool in the tool box. It also comes with a big learning curve for the clinicians that use it. I, for one, will welcome a manual with pictures of VELScope findings even though I have been using it for almost a year and am quite comfortable with understanding what I see with it.
Brian, as far as I know, a Linea alba, should be easily recognizable. It saddens me to hear how some of my colleagues can't determine when they see one. All the tools in the world won't help these practitioners.
All the best,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | The waiting for results is almost worse than the waiting to get in to have the biopsy! You'd think the pain from the biopsy would take away the worry and what ifs that keep flying through my head!
The biopsy site is healing very well - so I guess my hypothesis that maybe the non healing ulceration was due to radiation damage causing my tongue to be slow to heal might not have been a sound one. Sounded good at the time!
The doctor's office called yesterday and tried to schedule me for 8/5 to follow up on the biopsy results and check on healing of the biopsy site. Apparently they decided to unilaterally cancel my previously scheduled appointment for the 29th because "the doctor said he wanted to see you in two weeks." I pointed out that the doctor wanted to see me the first day he was back from vacation and that the 29th was actually 12 days out and the 5th was 19 days out. Clearly my appointment on the 29th was closer to the two weeks he had written in the chart. Geeze! I got ugly and impatient and told the clerical person that it was absolutely inappropriate to decide to cancel the appointment that I had scheduled without consulting me, and that I was not going to wait until August 5th to come in. She snottily told me that she'd have to "check" and call me back. After another call where she again tried to railroad me, I told her to go back and "check" again and call me back with my appointment on the 29th rescheduled. She called back about 5 minutes later and sheepishly told me that the appointment had been put back into the system.
I really love my doctor, but really hate dealing with the office. At least I was able to hold firm and insist that things be done the right way - I worry about all of the patients out there who aren't able to advocate for themselves or who don't know that they can or should.
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Man do I love people that aren't afraid to speak their mind. LOL Good job at saying what you want and not what they want to hear. It isn't their life but yours so go for it and no holds barred.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | You go, girl! You know what's right, and I'm proud of you for fighting for it!
XOX
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | I got the results back! It was NOT a return of the cancer! I had an infected abscess that was determined not to heal because of radiation damage. The surgeon removed all of the infected/necrotic tissue when he did the biopsy and the biopsy site is healing - a bit too slowly for my taste, but I'm now at day 15 post procedure and the site has mostly filled in. I'm being sent back to the prosthodontist to be fitted for a mouth guard to wear at night to try to help protect my tongue from further injury. Needless to say, I'm quite relieved!
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | 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 |
Lisa
Congrats on the good news. Glad its not a recurrance.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Lisa,
I got my wish and came back to your good news.
Congratulations and I like the way you handled that SOB at your doctor's office. If any of my employees treated my patients that way, they would be out the door before they could even say "sorry".
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Lisa,
It's always nice to hear good news even though the treatment is so pleasant. Also thumbs up on how you handled the appointments.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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