#95183 05-10-2009 05:28 AM | Joined: May 2009 Posts: 4 Member | OP Member Joined: May 2009 Posts: 4 | I feel like I'm unsure if I belong here...but then I sort of feel in limbo anyway. I had an oral surgery procedure and it was stressed to me how important that the pathology specimen was...and now it has become "lost in the mail"- leaving me facing a lifetime of followup due to uncertain results. I'm angry and frightened and I feel like I'm completely left hanging. Has anyone else ever experienced this?? Thank you. | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I don't see why they can't do more biopsies to find out. I had them done more than one time for sure and so did a lot of members oin here. Go tell that Dr to take some more biopsies so you don't have to worry for maybe someone elses screw up.
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: 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. What type of procedure was done? If you had a biopsy done then another one would be necessary. A biopsy is the only way to tell if you have cancer, is that what you are being tested for? What are their plans at the original oral surgeons office now that the specimin isnt available? Have you gone for a second opinion? Sorry for all the questions, but its necessary in order to help. 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: May 2009 Posts: 4 Member | OP Member Joined: May 2009 Posts: 4 | Thanks for replying, Jim. The biopsy that he took was a cyst/mass that was in my jaw and the surrounding pieces of bone rather than tissue. Hopefully, he got clear margins. He's trying to tell me that the likelihood of my having cancer is slim- but then he also told me that in his many years of practice, I'm the first sample that they lost!! He offered me a free lifetime of followup but says they followed "standard of care" procedures in mailing the sample. I'm just appalled. And venting, I guess. And frightened. And thinking that this means a life-time of second-guessing...? | | | | 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 | I would immediately get an appt at a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htmAnd see what they advise. Depending upon what they say, an atty might be appropriate.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David is right, they aren't offering you a liftime of followup because they didn't screw up. Someone trying to covedr their ass
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: May 2009 Posts: 4 Member | OP Member Joined: May 2009 Posts: 4 | I actually talked to a friend that is an attorney, and he advised me to go out of state for follow up. He said right now it would be hard to make a case. I'm not someone who would even think that way by nature! I work in healthcare and handle malpractice insurance and see the injustices that are done to physicians sometimes too. I actually asked the attorney if I could stipulate that they change their policies for handling patient specimens as the terms of an agreement. I'm just sick thinking this could happen to someone else. I work in Oncology and not knowing is the worst thing that happens to anyone. My facility won't allow our patients to wait for more than a few days and we would be fired or put on leave if we handled a specimen like this. I appreciate your thoughts. This just makes me sick. | | | | 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 | We have seen many examples of malpractice on this site and most are in the detection phase. It's important to disclose everyone of them so that perhaps the profession learns from their mistakes.
I don't understand the out of state idea though? What was the reason?
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: Sep 2008 Posts: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | JFisher, Do what the lawyer says and do it soon! You need a second opinion and you need it soon. Make a long week end of it. Send your records including the OR report ahead of you. Some doc's will even give you an opinion without a appt.
David, Because Dr's in state don't like to say bad things about Dr's they see daily, weekly, or even at Christmas parties. My husband had this problem with a Dr that messed up his knee. Dr. retired right after husband surgery, with Parkinsons. Husband is in daily pain. Local doc's say--"it happens sometimes" Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: May 2009 Posts: 4 Member | OP Member Joined: May 2009 Posts: 4 | I heard from the OS again today. He informed me that my specimen showed up today. How he informed me-well, it's beside the point, I guess. He told me that the results should be available by the end of the week. Since he contacted another of my physicians and has convinced them to hold a medication that I need for my rheumatoid until after I see him tomorrow...I don't have a whole lot of choice. At least about tomorrow. Second opinions and long term follow up are up in the air right now. The physicians that I work for have their own sets of questions and concerns despite the fact that it showed up...I'm trying not to even go there. David, you answered my question. Apparently, this has happened before in one way or another,I am so sorry that it's happened to others. Thank you all for your input. One way or another, I'll let you all know how it turns out.
| | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | How long was your specimen missing in action? Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | 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 | I went to see 5 different cancer docs until I made up my mind and I would be dead today (IMO) if I had settled on No's 1 or 2 and No's 3 & 4 would have performed unnecessary surgery on me. I would not put second opinions up in the air ever.
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.
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