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#184217 08-13-2014 07:42 AM
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Talim75 Offline OP
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I know every case is different, but I was wondering what the general length of time is between your Dx and treatment. I was diagnosed on June 30th and am not being treated until August 20th. I feel that I have waited quite a bit of time and it has been nerve racking for me and my family. I know my doctor cares, but frankly my diagnosis came when they were all taking their vacations. Semi-funny thing is we just read an article on how this is the worst time of year to get Dx, because of doctor's schedules/vacations. In the time since my Dx my tumor has at least doubled in size and the pain is rather significant now. My doctor just saw me on Monday and isn't alarmed, but it is a question that has been weighing heavily on us - and it isn't really a question you can ask your doctor without becoming a problem patient. I am ready for next Wednesday!


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

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Posts: 945
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
My husband's diagnosis was delayed by Thanksgiving, and his treatment by Christmas and New Years. It WAS nerve-racking, but things have turned out well for him. On a positive note, you saw a doctor promptly for the tongue irratation, so at least that part of it moved quickly. Best wishes on the upcoming surgery.
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.
Joined: Jul 2014
Posts: 42
Talim75 Offline OP
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Thank you Maria. Waiting is the hardest part for me. I am ready to fight and I am sitting here waiting for everyone else to get their gloves on and join me...


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

Joined: May 2013
Posts: 134
Senior Member (100+ posts)
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Joined: May 2013
Posts: 134
I was told to hang on that things were going to move very quickly. 3 weeks later I had my first appointment.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: May 2013
Posts: 134
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Posts: 134
I can't end with that...

In spite of the wait, I did very well. Looking back, there is a lot that happens out of our eyesight. I was about to be injected with poison (chemo) and blasted with ridiculous amounts of radiation so any time they needed to dot i's and cross t 's they are welcome to. While it's easy to feel like the cancer is growing every second, in my case I had ignored a swollen lymph node for 3 months or so. And NOW I'm in a hurry?


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Yes the waiting is worrying. Kris was diagnosed in The first week in December. So, Christmas and new year intervened. His treatment started in the last week of January. He needed tooth extractions and time to heal before radiotherapy started and a PEG inserted.
When he had his recurrence , surgery was not scheduled for 8 weeks! We were not prepared to wait and sought treatment in the private sector - with the same surgeons - the following week.
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 3,267
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I know how you feel! I had multiple treatments, and had to wait for a month or two or even longer to begin treatments for various reasons, and was concerned as much as you are. I can't say for sure any had a negative impact, but beginning treatment as early as possible is best, I think, but sometimes it's unpreventable, and once something is removed like from surgery, can't be put back or radiation or chemo taken away once given. Once you start treatment, you will forget all about the wait, and will just wanting to get through each day.

Use this time to prepare, psych yourself up for the big fight. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Patient Advocate (1000+ posts)
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Waiting is hard, now way around it. Your wait is not all that unusual. I have read some as short as three weeks and much longer than yours based on various rounds of misdiagnosis and other delays. Even the standard take some antibiotics go around can delay a month. My feeling is the wait is certainly worth putting up with if it means a through and complete set of tests and board reviews is involved. Additionally, more time allows you to get more informed about your own case and for some that is a good thing. Other like to fly blind, some like to look straight at what is about to whack you in the head. Good luck,


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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There actually is a way around waiting some of the time. Knowing the system helps - so does calling daily to see if there are cancellations (this does two things - one impress upon them you are anxious to get moving - and two keep you in the forefront of their thoughts. Up to 6 weeks is a normal wait time from dx to surgery - from surgery to treatment - 5-6 weeks depending on healing. There's usually a lot to be done in that time - cts, dental appointments, meeting with the team - bloodwork - hearing tests etc... But waiting totally sucks.

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
Joined: Jul 2014
Posts: 42
Talim75 Offline OP
Contributing Member (25+ posts)
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Joined: Jul 2014
Posts: 42
Thanks for all of your replies, they helped calm me down before my surgery. You guys are great so thanks for all of your support! It has been a big relief having all of your help.


Female, Age 38, healthy non-smoker, rarely drank, regularly workout
May 2014 noticed irritation on tongue
6/18 saw doctor
6/25 saw ENT specialist got biopsy
6/30 Dx HPV P16+ ve SCC tongue cancer
7/9 CT scans, no visible spread
8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia
4/2015 start to have ear pain
5/2015 recurrence
6/4/2015 surgery 29 nodes samples pN 2c
7/13/2015 7 wks of Chemo & Radiation start

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