| Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Pickle
Good for you. I hope that you get the biopsy that you would like and that the results are negative. You have learned a valuable lesson about the medical profession. Some of them treat the patient like an idiot and we really can not allow that. Good luck with the oral surgeon.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | I've been to doctors' offices where it was almost like an assembly line, get 'em in and get 'em out. It's pretty shameful to be treated that way. I finally found a PCP who will actually sit down and spend a little time with me. It took time to find him but worth it. The ENT that I saw was also very attentive. I'm glad you're not settling for the assembly line treatment. There are better doc's out there.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Pickle, I am from Ohio also and I was never put off or on hold by any Dr I saw and there were many from all over this stae and WVa. They rushed me like I was scheduled to die before they could cure me. LOL I got quite a few phone calls from them like at 10 and 10:30 PM . My Oncologist even called me while he was on Vacation to see if I was doing ok. These Drs, all of them were very caring and concerned. We are talking Drs from OSU James Cancer Center, Wheeling WVa Hospital, WVUniversity Hospital in Morgantown and OVMC in wheeling.I have quite the crew and owe them my life.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Pickle..I'm proud of you that you didn't let him call the shots. Good for you!! A biopsy is the only way to be sure. My biopsy was done by an oral surgeon and it was covered under my medical insuracne. Hopefully you will have the same luck I did in that aspect. I have found some doctors think they are the best thing since sliced bread and they usually have no bed-side manner.
I really hope this is nothing and you won't need us here for much longer!! But, at least you know where to come for support. As I say in a lot of my posts...the people here have been AMAZING. The support I have found here is so great. I tell my friends and family how fortunate I am to have found this new "family"
I am thinking of you. Can't wait to hear what happens with the oral surgeon. Hopefully you have a better experience.
Suzanne
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 97 | Once I got past one nurse who was not passing my messages to the doctor because she thought I was some kind of nut, things were really rushed. However getting around her took me a couple of months, that would not happen again... LOL
Rushing and assembly line seems to be a result of resource pressures, but we have to find ways to get the care we need inspite of the sweat shop attitude that some medical professionals participate in.
Helping them help you works really well.
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | Joined: Feb 2009 Posts: 11 Member | OP Member Joined: Feb 2009 Posts: 11 | Okay, went to the oral surgeon. My experience there was quite different. He did a very careful exam, of my entire mouth, and he listened to me about the 2 dentists I saw and my primary care doctor. After he examined my mouth, and looked carefully at the spots, he said he wanted to remove them entirely. (I did not, however, tell him about my experience at the ENT's office. I didn't think it was important to do that, you know) So on Thursday I will be going in for the biopsy. He said he's just going to use novacaine. (that stuff can last ALL DAY, and I have no fear of the procedure hurting!) He is going to send the tissue to the Oral Pathology Consultant Laboratory at the Ohio State University. He said they will figure out what it is. I guess he sends all stuff there. I'm thinking maybe they have a better lab with better equipment and stuff, and that's maybe why he would prefer to have them figure out what things may be instead of a local pathology lab. I did ask him if he thought I really did need the biopsy, or if he thought we could just watch the spots, and he said it would be better to just do it now. I hope they aren't too deep. I was thinking about that today. I can see how big they are to look at, but I guess there's no way of knowing how deep they are until he does it.
I hope it comes back negative, too, and it's nothing. If it is something, though, it's good to know that I have a place to come to. Uncle Vern, I've been taking your advice, too. Trying to just enjoy things and do what I can. It won't hurt me if it ends up being nothing, and I'm already happy for the small changes I've already made. It's amazing how something like this can really change your thoughts on things! You learn what really matters and what doesn't.
i'll keep you guys updated on my adventures!
| | | | 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 | He's choosing that particular lab at OS because they look only at oral tissue samples. It's not that a conventional full service pathology lab can't find oral cancer, since the characteristic cellular changes are common to all malignant cells. It is because if it is not cancer, and is something that isn't deadly, it would still be important to know what it is (there are hundreds of things to choose from) so that if there were any long term issues, or that it was a precursor cell type to something that was coming down the road other than cancer, these guys have seen it all and you would know what it is. You will get a very specific diagnosis of what's what. Good call on his part. Also don't worry about the depth. Punch type biopsies, which are very common, are actually at least an eighth to a quarter inch deep in areas where the soft tissue is that thick. The tissue has many levels/layers from the deep basal cells to the actual outer epithelium. Seeing all the layers in their normal architecture position is important. (This is why I am not a big supporter of brush collection systems, since they just give you scrambled eggs and no architecture. Did that bad cell come from the top or the bottom of the soft tissue layer?). Determining where the non-normal cells come from in the layers of stratified tissue tell the diagnostician/pathologist a lot. Cancer pretty much always starts in the basal cells deep in the tissue, and in most oral malignancies, finally migrates upward to the outer epithelium where you finally get to see something. If this is something that is only in the upper epithelium, it likely isn't cancer even without looking for the tell tale cellular changes. We are discovering that in some HPV positive SCC that the typical migration of the cancer cells towards the surface may not take place. So getting a full depth biopsy is a good thing. It heals in very quickly.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Pickle...I'm happy you had a good experience with the oral surgeon. That makes me feel better. Good luck to you on Thursday...can't wait to hear how it goes. I'll be keeping my eyes, fingers and toes crossed for you!! (exccept while driving)I really hope it is nothing but if it is something....you are right...you have somewhere to come for great support.
Suzanne
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | [quote=UncleVern]Once I got past one nurse who was not passing my messages to the doctor because she thought I was some kind of nut...[/quote] Well, you'll have to admit that she wasn't wrong! However, she erred in not understanding that even nuts need medical treatment from time to time...
In some Docs' offices, the job of the desk seems to be to keep patients away from the Doc. When I was Full Timing in my little RV, it was a grueling process to see a Doc in a new area to get my prescriptions renewed. If I were doing it again, I'd take the advice of several people and just use the Emergency Room or Urgent Care Center (in reverse order).
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: Jan 2009 Posts: 97 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 97 | LOL yeah I am a nut, however there were instructions to return.
The funny thing is this nurse will call patients back and tell them NOT to follow the Docs' instructions? Got to wonder if she is still there.
On an extended stay out of state years ago, I couldn't get a refill, didn't matter who I asked. I was forced to fly home to get the danged bottle filled and then fly back.
Hopefully things aren't as bad with "Bio-informatics" in place??
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
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