| Joined: Sep 2013 Posts: 17 Member | Member Joined: Sep 2013 Posts: 17 | So I happen to be one of those people that think time is important and where you are treated is important and I will tell you why. Time is important because the squamous tissue in your mouth replaces itself every 7-10 days. In order for cancer cells to grow faster than that they often will double in size every week or so. The bigger it gets the harder it is to remove or eliminate and the more impact it will have on your critical functions like swallowing, wetc. If I had your case at Stage IV and the local treatment facility was recommending Chemo only, I would start that treatment immediately AND start the process of getting into a regional cancer center. The chemo will likely have some impact on slowing the growth of the cancer while you get set up with a regional cancer center. My father and I both had the same type and subtype of cancer. He went to a local hospital and lasted 18 months after diagnosis. I went to a regional cancer center and have lasted 20 years so far despite having had 3 primary tumors. If the local hospital is recommending chemo and radiation siimultaneously then that would be a more difficult decision for me. I probably would still start the treatment and also try to get into the Regional Cancer Center. Best of luck. | | | | 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 | Thank you Don. Besides cancer, one does have to think about other issues, which are important, like insurance, caps, and other restrictions, continued coverage, retirement, employment benefits package, time off, Cobra, future income. I was caught off guard, but actually did not have time to think with the fast and furious from diagnosis to treatment phase, unless you have someone to help you.
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: Aug 2013 Posts: 14 Member | OP Member Joined: Aug 2013 Posts: 14 | Hi Brian,
Much thanks for all of that info. Also, I did not know UCSF's HNC center is a good one. For some reason, I thought their CCC center was just recently designated (1999). Although, Stanford's CCC designation is fairly recent too. I will have to give UCSF a second thought.
By the way, I know this may be personal, and don't respond if you don't want to, but were your out-of-pocket total costs for treatment at MD Anderson above the six figure mark?
Thanks again for the response.
Been misdiagnosed several times since Nov. 2012. Sep/9/2013 - Recently diagnosed with SCC in right cervical node, with possible multiple metastatic nodes. Trying to get into Stanford CC. | | | | Joined: Aug 2013 Posts: 14 Member | OP Member Joined: Aug 2013 Posts: 14 | Everyone, much thanks for the responses. I know time is a major issue for cancer treatment, but I also know cost is a huge factor. I have talked to my insurance provider, and since I live all the way out in the boonies without good local CC centers, Stanford and UCSF are considered in network for cancer treatments. I just hope they will take my case ASAP. Currently, they are a month out but will take me earlier with an opening. I will look at UCSF as well.
Oh well, it's been a year since I've been misdiagnosed. What's an extra month? /sarcasm
Last edited by undiagnosed; 09-14-2013 11:00 AM.
Been misdiagnosed several times since Nov. 2012. Sep/9/2013 - Recently diagnosed with SCC in right cervical node, with possible multiple metastatic nodes. Trying to get into Stanford CC. | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | For what it's worth, I received excellent care at UCSF. It is a highly rated cancer center with a great reputation.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 64 | yes the costs were in multiple 6 figures. I would go to UCSF without hesitation. Warren Buffet's choice for his wife when she had oral cancer, and obviously she could have gone anywhere. Each institution has pluses and minuses, I was told once that Stanford has a distinctly surgical perspective when they approach this. I cannot verify that leaning.
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: Aug 2013 Posts: 14 Member | OP Member Joined: Aug 2013 Posts: 14 | Oh wow, ok. Much thanks for those perspectives. I will have my case forwarded to UCSF as well, then.
Been misdiagnosed several times since Nov. 2012. Sep/9/2013 - Recently diagnosed with SCC in right cervical node, with possible multiple metastatic nodes. Trying to get into Stanford CC. | | | | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2011 Posts: 54 | Sorry I just saw this. I was treated at UCSF Helen Diller center earlier this year. If you want any info, go ahead and PM me. Good luck-great team at UCSF.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked; 2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013; 3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | Joined: Dec 2012 Posts: 14 Member | Member Joined: Dec 2012 Posts: 14 | We live in the Peninsula.. nearby.. we have a wonderful ENT in San Mateo who practices at Mill/Peninsula (Burlingame Hospital and Mills Cancer Center). We were referred to USCF, but found that Mills provided everything we needed.
Joanna - caregiver (spouse) Init bio 11/12, gloss/neck dis 12/12, rad/cisplatin - 6 wks 2/13
"The most important thing is to keep the most important thing, the most important thing."
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