| Joined: Jul 2014 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 42 | 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
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "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 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 42 | 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) | Senior Member (100+ posts) 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 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 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) | "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 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | 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 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) 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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