| | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | With the recurrence diagnosis date being noted as February 2015, and the surgery date now scheduled for July 20th, about 5 months later, does seem like a long wait after diagnosis, although wait times for all cancers are increasing, and more so at academic and NCI-CCC designated locations, than community hospitals, although, they are the best places to be at. There are a number of factors for delay some are patient, insurance, type of cancer, etc., but haven't seen this long, except maybe my own.
As suggested, you can obtain a 2nd or even a 3rd opinion, some by telephone conference, at another CCC, insurance permitting, by July 20th.
Good luck with everything.
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: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Thank you all for your kind words and advise. I wish I could just up and go find another doctor. My insurance won't cover a CCC. My sister and I have tried to call a patient advocate at the hospital. We both have left several messages but for some reason, they haven't called us back, and this has been going on for at least 2 weeks. This is so frustrating and I am losing the energy to fight. Thank God for my sister, she is trying her best to fight for me. This hospital is always on the list for "Best Hospitals" in the country but I sure don't see it.
Ok, I will quit whining and feeling sorry for myself. (I am talking myself into feeling strong). Thanks for letting me vent. Hopefully I will hear back from them soon.
Yes, I am feeling better already.
Thank You
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Glad you are feeling better already! And that your sister is helping you. That's great. I hope the Patient Advocate service has got back to you by now.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Hello.
I got some excellent news on Monday that they had a cancellation and that my surgery is going to be moved up to June 9th. This is probable the best news that I could have gotten. Its last minute but I'm so ready for this. I had to go see the Doctor on Tuesday and am having a new CT tomorrow. The only thing that I'm having a problem with is leaving my dog Abbey. I got her after my 1st surgery and shes never been without me and I know she will have a hard time adjusting. At least when I get back home that I will be cancer free. Thank you for all of your prayers. It must have worked.
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | 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 | Fabulous news Sherry.
Wishing you all the best.
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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | Wow, what great news and relief. Holding you in my thoughts.
Sophie | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | YOu're in surgery today... may all the blessings be with you... hugs and much love... hope you have a speedy recovery.
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: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Hi Everyone:
Just a quick update: Ive been home a week now and I got to say that was one of the hardest things I've ever gone through. I spent 3 days ICU and 5 recovering before they finally sent me home. Had to use my right arm for the flap so that didn't help. I'm all bandage up right now and look like I've come out of a war zone. Don't get me wrong, I feel very blessed that I came out of this alive. I hope for a speedy recovery but right now its baby steps. Thank you for all your prayers and warm wishes.
Sherry
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | It's an ordeal, isn't it? Did you have a trache? What did they actually do?
I had the forearm flap from my right arm too and found it devilishly hard in the toileting department:) One day when I walked down the corridor with my arm in a cast and stitches in my chin another patient looked at me and said, You've been in the wars!
I'm so pleased you are back home safely.
Best wishes
Maureen
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Dec 2011 Posts: 18 Member | | OP Member
Joined: Dec 2011 Posts: 18 | Hi Maureen,
Yea I had a trache. I really hate that. I had stitches in my chin and staples across my throat. Cast on right arm and a bag of blood taped to my leg from the skin graph. I look absolutely marvelous. At least I'm alive.I don't know what the next chapter will be until Wednesday when I go in for my follow-up.
At least me and my pooch can cuddle up and just wait this storm out and then go on from here.
Feeling very blessed
Sherry
Age 55 12/2011 SCC Floor of Mouth,
Stage IV, Partial Glossectomy,
Neck Lymph nodes removed
6 weeks radiation, Peg tube
2/15 recurrence, surgery set for June 9th.
"Praying for the best"
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