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ConnieW Offline OP
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Hi,
I'm new to this board and needed to talk, so here's my story. Thanks for listening and look forward to any advice.

I have a red patch on my lower front gum. It's under and between several teeth.

I've used the Perioguard for several weeks and that didn't help. The dentist referred me to a periodontist. I had an ENT look at it and he thought it was a dental issue and said that if the dentist wanted a biopsy done, he would do it for me.

The periodontist doesn't know what it is and did a biopsy since I've had the patch for more than a few weeks. Actually, I don't remember when I first noticed it - it could have been months.

This coming Monday it will be 3 weeks and I haven't heard anything yet. I called several days ago and they said they haven't gotten the report back yet. They said they'd call me, but the periodontist is only in that office every other Monday, so I don't know when I'll get a call. I have an appointment in 1 week, but was hoping to hear something before then. The waiting is terrible.

Since then, the red patch has expanded a little and now I also have a white patch in the front of my mouth, not too far from the red patch area.

I'm wondering how long it usually takes to get biopsy results. Also, do doctors give bad news over the phone or do they want to see you in person. And should I be worried about time being wasted if it is cancer?

I have to say I wish I had gone to the ENT or oral surgeon for the biopsy because my dental insurance won't pay for the biopsy. My medical insurance will pay for the reading of the biopsy though.

Thanks for listening! Look forward to responses. :-)

Last edited by ConnieW; 06-01-2012 04:15 PM.
ConnieW #150242 06-01-2012 03:14 PM
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Hi Connie!

So sorry you have to worry and wait, that's so hard! From my experience with waiting for biopsy results it never has taken more than 5 days. It isn't uncommon for doctors offices to get overwhelmed and busy and brush patients off in the process so I would probably be persistent with getting results if it has gone anywhere over a week. It is your health and nobody can fault you for wanting to know what is going on. Doctors will give you bad news over the phone, just not by mail. Try not to worry too much, it doesn't do anyone any good though I know it's impossible not to.

As for your actual physical symptoms, I can't speak to whether it is cancer or not as I am not a doctor and was a caregiver not a patient. That being said, I would push forward with getting your biopsy results and even seeking a different physician if this one doesn't seem to have the time to give you the attention you need and deserve.

Hope this helps a little! Best of luck and please let us know how things go!


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
aimlee311 #150243 06-01-2012 03:45 PM
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ConnieW Offline OP
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Hi Aimlee,

Thank you so much for your reply. I'll give them a call Monday and be persistent. I was trying not to be a pain, but 3 weeks is ridiculous to me, although maybe the holiday was a factor.

I'm so sorry about the loss of your Mom. Really appreciate your response. Thanks again and best wishes.

-Connie

Last edited by ConnieW; 06-01-2012 04:06 PM.
ConnieW #150248 06-01-2012 06:12 PM
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Connie...

My biopsy result took one week. Three weeks is out of touch.

Hope it's nothing. Keep us posted.

Take care,
Another Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



ConnieW #150261 06-01-2012 08:17 PM
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See if your GP can get the results if you don't get an answer from the other dr. Mine took 10 days...


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
ConnieW #150303 06-03-2012 06:00 AM
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When I had my bio my ENT told me he was goping to put a RUSH on it. 2 weeks later after saying it got lost they found it! Worse 2 weeks of my life until they tols me I had cancer. I agree with everyone else, 3 weeks is unacceptable!


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.
ConnieW #150315 06-03-2012 06:59 AM
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Definitely every day that ticks away give the cancer a chance to spread ( assuming that's what it is) those two weeks can mean a big difference in treatment some drs will tell you cancer doesn't move that fast - the truth is - they don't know. My cancer was deemed well differentiated - (slow growing) it took my biopsy 10 days for the results (GP told me - dumbass ENT he sent me to wanted me to wait until he got back from vacation - January 4 - my biopsy was dec10) that was unacceptable - anyway at that point other than the tumor in my tongue - my lymph nodes were clear - confirmed by a ct of head and chest - dec 21- by dec 27 I could feel a lymph node under my chin - my MRI on jan 6 came back clear - but it was there because I pointed it out to my dr. The morning of surgery and he was surprised..it didn't matter as he told me straight up on our first meeting - you're having surgery and I'm removing part of your tongue and 40 nodes. That lymph node did have cancer in it and had broken through the capsule. Because of this i was recommended for rads and chemo despite him being certain he got it all - my point is every week that passes is time you could already have started the process if it is cancer. My GP was priceless as he gave me the results - set up all my tests for the next day and had my results the same afternoon. Had I waited for the ENT to get back from vacation... I wouldn't even have started the process and as it stands the first MRI date they'd scheduled me for was the day I had my surgery via a different ENT. Push. Make noise find out as soon as you can - this is potentially cancer - time is of the essence. And making you wait three weeks is not only insensitive but negligent. IMHO ... Take care.


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
ConnieW #150320 06-03-2012 07:53 AM
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Connie -
"periodontist is only in that office every other Monday"

Well, he's somewhere. See if you can track him down in his other offices. Good luck and fingers crossed!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #150329 06-03-2012 05:21 PM
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Absolutely, echo what Maria says. The periodontist probably is in several offices, that is common, but someone should have helped you out more. Make whatever calls you need to tomorrow in order to find out where these biopsy results are, and what they are. I imagine you have a 4 week post op check up, but surely they told you that they would call you with results.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
ConnieW #150349 06-04-2012 11:32 AM
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Thank you all for your replies! I really, really appreciate your advice.

I called the periodontist's office today and both the dr. and his assistant are out. The dr. will be back next Monday when I have my appt. The assistant will be back tomorrow and I will call back tomorrow to talk to her. Also, I called Johns Hopkins where they did the lab work. It was read on 5/16. They will mail the results to me (they can't fax them) and because I asked for a quick turn around, I will get them this week. The person in the medical records office was so kind and helpful! I really wished I had gone to the ENT at Georgetown for the biopsy though. I think I would have heard back much sooner.

It really has been torture waiting. I'm at work and in near tears. Thanks again to everyone who responded to me! You really have a very special community here! Best wishes.

ConnieW #150357 06-04-2012 05:01 PM
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Hi, Connie -
glad you got some action from the kind person at Georgetown! Hoping the best for you!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
ConnieW #150364 06-04-2012 09:21 PM
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Me too... Hope the concern is all for nothing!


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
ConnieW #150376 06-05-2012 09:10 AM
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Called the office and found out it's not cancer! Have an appt. on Monday to talk to the dr. Still don't know what the white patch is - that's new - but he'll look at it Monday. Thank you so much for your support - it really helped me! Best wishes!

ConnieW #150378 06-05-2012 10:13 AM
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Awesome news, Connie!!! So relieved for you!!!


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
ConnieW #150381 06-05-2012 11:33 AM
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That's so great... this is a club you should be happy to be kicked out of... ;o) do keep an eye on the area though... hugs!


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
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