| | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Just got back from MD Anderson in Houston and got my second opinion.
Things now look a bit grimmer. A new CT scan at MDA showed the tumor has been more aggressive then we first thought. It has now completely surrounded the carotid Artery. The doctor at MDA said they do not want to remove the tumor in this state as it would require them to do a bypass of the Carotid. This means cutting off the blood flow to half my brain for up to 30 minutes. The list of complications associated with this approach is too long to list here but I did agree it is not what I want to do.
The good thing they did say was that the doctors I have working with me at U of M are as good (if not better) then the doctors available at MDA: something they rarely admit to.
They feel the best option at this time is to treat the tumor with chemo therapy and see if they can reduce its size to the point where it is not so involved with the Carotid and then do surgery to remove what’s left.
They feel that there is no way they will be able to get every little piece of this thing even under the best of circumstances which would mean the chemo reduces this thing by at least 50% and the surgery goes well. This brings up the need for additional radiation. MDA said U of M and MDA are so close in the best techniques for reradiating these areas that he best option would be for me to stick close to home and complete treatment at U of M.
I forwarded all of this to my doctors at U of M on Friday morning and got a call back in the afternoon. They said their tumor board would be reviewing my case on Monday and would want me to be available on Tuesday for both their answer to the new information and a treatment schedule (which I said I would absolutely be available for).
So I will find out early this week what U of M would like to do from here.
I asked the doctor at MDA what my long term survivability looked like at this point. Of course they hate to make such predictions and he did point out to me that if I’m one of the ones that make it then my chances are obviously 100%. He did then let me know that the mortality rate for patients at my stage is about 75% giving me a one in four chance at survival.
The fight is on!
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Kelly,
My experience with MDA is that they are respectful of other trained doctors, and when you are satisfied where you are and are near home, they think you should be there. Their head and neck department is excellent, but they probably know some of the doctors at Michigan to be excellent. I'm glad you got a second opinion there. What was the name of the ENT you saw?
I don't think 75% sounds too bad, just stay strong!
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | I saw Dr. Hanna at MDA. He trained under Dr. Wolf, my doctor at U of M.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Dec 2010 Posts: 5,260 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 | I think those odds are based on a lot of factors including the initial health of the patient, and age. Plus your mental outlook. You can do this! 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: Jun 2007 Posts: 10,507 Likes: 3 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 3 | Kelly, please dont worry about statistics. Everyone is different and will respond to things in their own unique way. This goes for medications, treatments, recovery, side effects, etc. The odds were against me in my battle but for some reason Im still here. Thats why I dont pay attention to the odds. Best wishes with everything!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Kelly,
Hang in there and go forward bravely with the best option you have at beating this monster. It is the only thing you can do.
My heart goes out to you.
Sending you lots of positive vibes from the west coast.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: May 2011 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2011 Posts: 62 | Hi Kelly,
The good news is that there is hope and this is what we all want. Hang in there. Sending you positive vibes from Portland and will pray.
FYI, I have left a message for the doc you referred me to at MDA (Dr. Kies), and am waiting to hear back from them.
Best Regards,
Chetan
Chetan
SCC, lateral tongue, age 53, Tongue resection & neck dissection 5/6/11; T1N2BM0, RTX (35 sessions starting 6/8/11)/chemo (3x starting 6/10/11) Last cisplatin 7/22. RTX complete 7/27. PEG in 6/9/11, out 8/31/11
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Statistics? We don't need no stinking statistics!!
You got this thing Kel, just keep swinging baby!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jul 2009 Posts: 1,402 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,402 | Kelly, I'm with everyone on the ignore the statistics bandwagon. You sound like the kind of guy who beats these things. Plus you've got a great team, which is always important.
I'll keep the good thoughts flowing your way. Please keep us up to date on every little thing.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 13 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi Kelly,
Keep moving forward. We're all with you! Sending positive thoughts and prayers for the treatment to be completely successful!
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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