| | 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 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 | 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: 6 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: 6 | 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: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | 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 14 years all clear in 6/23 | 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.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | I heard back from U of M today. They got the film and reports from MDA this morning and the tumor board met this afternoon. They said I should get some answer by tommorow. Lets hope thay have a good plan for me.
I am a bit worried that AMD "punted" and sent a highly difficult case back off to michigan. I know this is not their MO just get those "bad thoughts" come through every once in a while.
Lets hope fot the best tommorow
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,
I am fairly sure they sensed you were comfortable at Michigan, they thought you could get great care there. My RO there (at MDA) would never give me any odds, which I was not asking for, just a general idea of what he thought. Smart man.
After my first check up, my ENT oncologist volunteered that he thought I would be "fine", despite what any odds you might find in this study or that, but never did he say anything before this point.
The thing is even if the odds are not in your favor, SOMEONE has to survive, and it might as well be you, Kelly! Again, stay strong.
Best,
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 | U of M called back today and let me know they want me in on Friday for a consult. I will be going to the Radiation Oncology department and the doctor I spoke to said they are planning daily radiation plus chemo.
Having been radiated before I know this is going to be a tricky proposition but I think I am in the best of hands so I'll just have to wait and see what the details of this approach is on Friday.
I hope the technology has moved forward enough with re-radiating tumor areas that I won't have to much additional damage done to my neck and throat. I'll check in with Charm on this as he may know something about the latest advances.
I'll try and post an update after the meeting on Friday.
Best to all and thanks again for all the good wishes.
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: May 2011 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2011 Posts: 62 | Hi Kelly,
I was thinking about you today. Hope your surgery went well and wish you a speedy recovery. Keep us updated when you are able to.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | You are in my thoughts today Kelly.
Praying and hoping you make a full recovery.
Sending you lot of strength and positive energy.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | If you do not subscribe to the free OCF news feed, this came up this week about re radiation. Knowledge is power. http://oralcancernews.org/wp/new-guidelines-for-reirradiation-of-head-and-neck-cancer/
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Brian You are Johnny on the spot. Kelly did PM me but my studies were old so all I could share was my general sense that re-radiation was becoming more common plus the ancedotal evidence that it has worked for me so far. My research was limited in that the newest full articles were all behind "pay walls" of professional organizations. Yet a little digging into the links in the OCF news article did let me find a full PDF version of a 2010 American College of Radiology: Appropriateness Criteria paper. I love the OCF news feed Kelly This may be a case of TMI but here is the link that I found thru the OCF news feed article. ACR reirradiation criteria The tough part is figuring out how many GY. I got 5 GY a day for one week my second time around (compared to first time of about 2GY a day for 40 visits) Charm Keep the Faith
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Thanks Brian,
I subscribe to the RSS news feed from OCF and it is at the top of my Google home page so I did see the article.
Charm,
Thanks for the new report. It gives me some hope as it does get into the issue of recurrence not at primary sites. My primary (soft palet) is fine. The recurrence is in a Lymph node below that site and is most likely due to one or two immature cells that existed there and did not react to the lower dosage I got to my lymph nodes. It may also be the result of the initial targeting of the radiation and a spot was missed.
I was able to get a CD from the hospital that did my first round of IMRT that covers all the ISODOSE lines that I was treated with and this has been forwarded to U of M. This will give them a precise picture of all the areas in my head and neck in regard to how much each area received in gy�s. Hopefully this may help solve the mystery of why I got a recurrence and will definitely help U of M in the new targeting as they will have a precise knowledge of how much radiation was received throughout my head and neck.
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Just an update,
U of M said I will be doing chemo weekly (carboplatin + Taxol) as I have a prior hearing problem. They are planning 7 weeks of radiation with a full 70 gy to the tumor. They have some new targeting data that they feel will minimize radiation damage, but as the tumor is wrapped around my carotid we have no choice. Doctor gave me 33% - 50% chance of long term survival. Said worst problem they have had in last 82 cases was �carotid blow-out� on two occasions.
Of course that pretty much kills you where you stand. Funny thing is; I would rather that and a quick end against a third occurrence, hospice and a slow painful end.
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | So..let me get this right...2 out of 82 had a cartoid blowout so that is like......2.4% chance???? I'll take those odds - I'm not sure my odds of safely taking a 500 mile car trip are that good. Glad to hear they are progressing with an aggressive treatment plan.
Please do not dwell on their numbers. The only number that matters is what happens to you. My Surgeon (a very wise man) told me "Either you will die from this cancer.......... or .......you will die from something else". Taken in THAT light all oral cancer patients are 50/50.
Enjoy each day. That is all any of us have.
You have a rigorous treatment program planned, but try to find something special in each and every day.
Many hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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