| | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | Dr appointment today...
Dr said that he wants to remove both nodes that lit up as well as some surrounding. Surgery is scheduled for August 4th! I hate that it is so far away! After removal he will then send nodes off to pathology and then go from there. Of course if cancerous he will suggest rad/chemo. I am assuming cancerous...what else would cause such swelling in my nodes.
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | I can't believe that you are putting up with this doctor's schedule. I hope he is God's gift to doing the procedure, because to make you wait during his vacation to discuss your future, and now to put you off a month to do the procedure is ridiculous. With all due respect to your making your own choices for treatment, I personally would have moved from him to another doc long before now. If it is true that it is in your lymph system, this is the place that is a super highway to other vital organs in your body for the disease, and the lymph system primary mode of distant metastasis.
I do not wish to alarm you, but your patience with his scheduling is something that I would not have.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Well I do wish to alarm you because if one cancer cell escapes the nodal system then it is far far worst than where it is right now. Three years ago my CCC doctors told me that if my cancer spread beyond my nodes it would likely either go to my brain or my lungs and it both locations the prognoses would not be good. This is your life and you need to start making some noise here. I would call a CCC near you and get things moving at a faster pace and it never hurts IMO to get another opinion especially from a CCC. http://www.oralcancerfoundation.org/resources/cancer_centers.htm
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.
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | I am going to a CCC. This is the earliest the surgeon can get me in. I will be seeking a 2nd opinion.
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | Where can I find a list of CCC?
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 26 |
08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | one of my issues is no insurance so i have to find a center willing to work with me
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I helped one of our "employees" without ins get covered by the County medical program. The County would then treat her for free but she had no choice as to who she saw or when they saw her. She had breast cancer and the only doctor they sent her to to get treated was a GYN who worked one day a week, afternoons only. I went with her to her first (and only) visit and he did a pelvic exam on her!!
I called Moffitt and was told they could only see her IF THE COUNTY ALLOWED IT by authorizing an Out of Network Referral but they said that was pretty much impossible to get the County to do. Bottom line, after being a constant squeaky butt wheel the County gave us one and she ended having her surgery and all chemo treatments under Moffitt and still free. From the time Moffitt told us about the Out of Network Referral till her surgery at Moffitt, less than a month had passed.
Point is anything is possible.
BTW for all of you who remember Martha's story, we just went to her 1 year anniversary doctor's visit Monday and all is perfect. She earned her PHD like the rest of us.
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.
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