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Doctor error? #196185
04-19-2018 08:17 AM
04-19-2018 08:17 AM
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Syzygy48 Offline OP
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Syzygy48  Offline OP
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All,

I was curious who out there feels like a physician made a mistake in their care. Not perhaps in initial diagnosis but more downstream. I got a second opinion last June from a well known treatment center. They were ringing an alarm bell that my local ENT surgeon was not. Basically, they were right and seven months later I went through what they were recommending AND THEN SOME!

My case is still "curable" but the surgery was much more involved seven months later!

So the real question is coping, accepting, moving on. Anyone have a similar story or advice on how to 'get over it.'


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Re: Doctor error? [Re: Syzygy48] #196231
04-23-2018 12:31 PM
04-23-2018 12:31 PM
Joined: Jul 2012
Posts: 3,128
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Jay,

I felt like suing for years after my first mishap with chemo in 2009, which severely debilitated me, but the ailments, hospitalization, and continuous treatments kept me busy! Looking into the matter, much wasn’t on my side, and may prove to be a waste of time and energy, other than trying to get better! I think there may be a certain time limit to take action too.

There is also more than one way to treat someone, as long as it’s not negligent, in my opinion. Most follow NCCN guidelines as a suggestion, but there are others too, from surgical societies to radiation oncology societies, that offer suggested guidelines too, and others.

I don’t fully know the situation, but you can go to three different doctors, I have, and get three different answers.

I wish you the best, and a speedy recovery!



10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: Doctor error? [Re: Syzygy48] #196232
04-23-2018 01:41 PM
04-23-2018 01:41 PM
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Posts: 18
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Syzygy48 Offline OP
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Syzygy48  Offline OP
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Posts: 18
Paul,

Thanks for sharing. Basically last May we spotted the cancer on the floor of my mouth. This came after a 2015 surgery that left me with a bit less tongue and fewer nodes. Anyway, last May my guy said, "It was an outpatient surgery." Wham bam if you will. I went to a well known large facility and they said, "It was eroding the mandible and we needed to do a free flap surgery followed by radiation. Well...I went with my guy. I thought, "They big facility was throwing for the end zone when all we need is a first down."

Turns out the big facility was right. He did what he said he would and then this winter half my jaw is eroded away!! He also said, "It wasn't in the bone!"

So this January I lose half my tongue. The free flap fails and now I've got a pec flap. Not sure how much tissue the large treatment facility was considering packing into my mouth but I might have had a more functioning tongue!

That's my story.



Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Can I save the gland? #196233
04-23-2018 01:49 PM
04-23-2018 01:49 PM
Joined: Mar 2018
Posts: 18
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Syzygy48 Offline OP
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Syzygy48  Offline OP
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Joined: Mar 2018
Posts: 18
All,

I just read research in 2014 that shows sparing the submandibular gland during contralateral radiation is "feasible and safe." We're zapping my 'good side' (3 weeks left) and I'm wondering if I could spare myself some of the dry mouth if I said, "That's enough." My radiation oncologist has yet to get back to me but I am sure he will say, "It's not advisable." UW in Seattle has been sparing the cSMG since 2006 where possible. Anyone more educated than I am have an opinion?

Thank you in advance,



Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Re: Doctor error? [Re: Syzygy48] #196234
04-23-2018 02:00 PM
04-23-2018 02:00 PM
Joined: Jul 2012
Posts: 3,128
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Posts: 3,128
NYC
Darn Jay, I’m sorry to hear this, but glad you can re-tell it. If you want, able, you can persue the matter. I’m not sure of the time limit, if there is one, but I may have heard of one. Once I was ticked off laying in bed, I called a lawyers office, and they referred me to another, who allegedly looked into my case, but unfortunately, they said i had no case. Each situation is different, and so are lawyers too!

Be well Jay!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: Can I save the gland? [Re: Syzygy48] #196236
04-23-2018 02:33 PM
04-23-2018 02:33 PM
Joined: Jun 2007
Posts: 10,199
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Im sure this is on a case by case basis. Rads is NOT fun and something we all would love to quit before our treatments are scheduled to end. I actually told everyone I quit but my son and nurses ignored me and made me keep going. Then I ended up getting so sick I was admitted into the hospital. Once in there you have no choice ... those transport people just show up and take you to rads anyway no matter what you say. I lost my voice so couldnt talk by then so I really was at their mercy. Anyway, what I was told way back then (2007) was under no circumstance would my doc cut the amount of treatments. By not completing the original treatment plan's number of rad treatments would give a patient a greater chance for having a recurrence. All it takes is for one teeny tiny microscopic cell to be missed by rads for it to grow into a recurrence. Im sorry, Im not familiar with the study you mentioned. You may want to read more into it before talking to your doc. Pay attention to how many patients participated and what the long term outlook was. In my opinion (a non-medical educated background) its not worth the risk. Ive been thru recurrences...twice! Im one of the very few who can say they've survived 3 rounds of OC within 3 years. From what Ive seen here over the pasty 12 years is many who have a recurrence, the cancer is faster moving and much harder to eliminate. The choice is yours but if I had to decide for myself after everything Ive learned over the years I would definitely NOT opt to cut back rad treatments. Whatever you select, I hope its the right decision for your situation.


Christine
SCC 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 smile
Re: Doctor error? [Re: Syzygy48] #196238
04-23-2018 03:15 PM
04-23-2018 03:15 PM
Joined: Mar 2018
Posts: 18
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Syzygy48 Offline OP
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Syzygy48  Offline OP
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Joined: Mar 2018
Posts: 18
Paul,

Thank you. But I informed myself right? I made the effort and chose not to listen. In fact, my wife says I wasn't ready to hear what the Mayo was telling me. I'm really mad at myself mostly. I skipped a follow up in 2014 that would've possibly prevented the 2015 case. Who knows.

All of that said...during this most recent go around they found two blockages in my heart. I had an abnormal rhythm(they say M.I.) while still in the ICU and that lead to two stents. Would I have been so "lucky" at the Mayo? Maybe I would have breezed through the free flap only to drop dead mowing the lawn this summer?

BTW I look at your signature and all that you've been through and I wonder what keeps your spirits up? Right now I can't get past all of the hits I've been taking and my altered quality of life. How do you do it?

Warmly,


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Re: Can I save the gland? [Re: Syzygy48] #196239
04-23-2018 03:22 PM
04-23-2018 03:22 PM
Joined: Mar 2018
Posts: 18
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Syzygy48 Offline OP
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Syzygy48  Offline OP
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Joined: Mar 2018
Posts: 18
Christine,

Thank you for the thoughtful response(as always). The patient numbers were pretty high and no one had a recurrence in the nodes near the gland. Maybe you could take a look at this:

https://www.healio.com/hematology-oncology/head-neck-cancer/news/online/%7B0c19c1f8-a8e5-4844-8d6d-96e6648d501e%7D/contralateral-submandibular-gland-sparing-radiation-safe-effective-in-head-neck-cancers

Of course it says for appropriate patients. Not sure if that's me.


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
Re: Doctor error? [Re: Syzygy48] #196241
04-23-2018 04:49 PM
04-23-2018 04:49 PM
Joined: Jul 2012
Posts: 3,128
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,128
NYC
Thank you Jay! The further you’re from this ordeal, the better it gets, so take one day at a time! You’re right in the mix of it right now, and luckly I wasn’t a member here until I was three years out from my first treatment lol, even then, I wasn’t listening much, but I soon found positivity here I hadn’t heard before. Soon, and if you like, you’ll be giving sound advise, in addition, your posts and questions may be helping someone in a similar situation who may be reading them, so you're already helping others knowing it or not.

Btw, we share a MI, which I had last June, so pretty much we’re both lucky with that too!

Here’s to your successful treatment!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: Doctor error? [Re: Syzygy48] #196243
04-23-2018 06:57 PM
04-23-2018 06:57 PM
Joined: Mar 2018
Posts: 18
S
Syzygy48 Offline OP
Member
Syzygy48  Offline OP
Member
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Joined: Mar 2018
Posts: 18
Paul,

Thank you. I will stick around here after my treatments. BTW I am grappling with a huge question right now. With three weeks left of radiation I have discovered that there is evidence that sparing my contralateral submandibular gland is possible and doesn't compromise control. My radiation oncologist is 'old school' and says, "We've got one shot at getting rid of this cancer for good and because there are lymphatics around it...it would be unwise to back off now."

I'm really worried now about quality of life and permanent dry mouth. Can you offer me some thoughts on that? Ain't nothing right here in Cincinnati.


Jay


--2003 SCC Left lateral tongue
T-I
Partial Glossectomy
--2015 SCC Left lateral tongue
T-II N-0 M-0
Partial Glossectomy SND
--1/30/18 SCC T-IV N-0 M-0
Segmental Mandibulectomy, Partial Glossectomy,
Fibular Free Flap (failed)
Emergency flap surgery (partial success)
Leech therapy (partial success)
M.I. in hospital 2 90% blockages
2 stents inserted
--3/2/18 Pec Flap
RAD IMRT 35 (in progress)
Chemo 7 doses Cisplatin (in progress)
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