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Posting... after a long while #199469
11-19-2019 07:33 PM
11-19-2019 07:33 PM
Joined: Aug 2014
Posts: 9
Greenwood, Indiana
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dadofthree Offline OP
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I started this interesting journey about 7 years ago with a sore that wouldn't go away under the left side of my tongue. It was graded as severe dysplasia in 2012. Had 5 ablations done with the last one exactly a year ago since my doctor had changed. Last time I had a check up was about 3 months ago with a clean bill. About a month ago things changed a bit and another sore came up that wouldn't go away. I saw my surgeon at IU and they were able to get me in and do a biopsy last Thursday. Well... today he calls me up and I knew it wasn't going to be good, because it was always the nurse that would call me up. He said that the results showed carcinoma in situ. He wants to do CO2 ablation on Thursday to remove the area. Because the operating rooms are booked and it's Thanksgiving, he's suggesting that we do it in the clinic. While a part of me gets this and wants this out, the other part of me is starting to question if we need to take a breather and come up with a plan. I think I will insist on an MRI to ensure there's no spread or anything.

I am still in shock - apologies to anyone who's just joining with more severe condition - and am open to thoughts.

Lovely time going into the holidays...

Re: Posting... after a long while [Re: dadofthree] #199472
11-20-2019 12:16 AM
11-20-2019 12:16 AM
Joined: Nov 2019
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HannahReese Offline
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Absolutely insist on an mri or even better a PET SCAN to make sure it isn’t spread more in the tongue or mouth region since you keep having reoccurrences. I think that’s in your best interest instead of a quick fix 🙂

Re: Posting... after a long while [Re: HannahReese] #199494
11-22-2019 07:34 AM
11-22-2019 07:34 AM
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Posts: 9
Greenwood, Indiana
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dadofthree Offline OP
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So, I showed up to my appointment yesterday to ask more questions to the doctor and decide on path forward.
1) He didn't seem as worried as I am - and I reminded him that he can make an error, but he wouldn't have to live with the consequences of that error. That directly impacts me.
2) Instead of CO2 excision, I asked him to take it out using scalpel and send it off for full analysis. He agreed to that.
3) I asked how he'd ensure clear margins and after inspecting the tongue and feeling it, he stated that there are no spots where he feels thickening.
3) I asked to get into an OR ASAP. Even next week. They couldn't find a spot. I asked for first week of December and haven't heard back - should I start looking at other facilities?
4) They want to do the surgery first and then do a PET/MRI if they see something - should I be insisting on this regardless?

The plan of surgery first, then evaluating PET/MRI and radiation seems reasonable to me. Of course, I am concerned that I am not being aggressive enough.

This is in IU Health which is an NCI designated Cancer Center. I have a coworker who used another location recently. I had used another facility to get the first two rounds of severe dysplasia taken out near my home and switched to the University Hospital because I felt they cared more... I am so confused. What do I do? Go for a second opinion? Look at a CCC in Chicago?

Re: Posting... after a long while [Re: dadofthree] #199497
11-22-2019 11:10 AM
11-22-2019 11:10 AM
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Posts: 322
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ConnieT Online
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just wanted to say hello as a caregiver and former resident of Indianapolis which I consider my hometown (grew up a little north of there).

I"m now in the Des Moines area so I no longer have info about who is good or where to go. I was on faculty at IU School of Dentistry back in the day or I would have some resources for you as I knew many of the oral surgeons.

best wishes as you travel this journey


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Re: Posting... after a long while [Re: ConnieT] #199503
11-22-2019 05:28 PM
11-22-2019 05:28 PM
Joined: Aug 2014
Posts: 9
Greenwood, Indiana
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dadofthree Offline OP
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Greenwood, Indiana
Hi Connie,

Thanks for the response. The surgeon I am seeing is in IU school of medicine. At urging of my girlfriend and some friends, I am now thinking strongly of getting a second opinion. University of Chicago and Northwestern are both CCC and not that far (3 hours by car). I was thinking of flying to MD Andersen; while looking at their website, I noticed that they have an affiliate program with a surgeon in town. Any thoughts on these options?

Thanks.

Re: Posting... after a long while [Re: dadofthree] #199507
11-23-2019 05:39 PM
11-23-2019 05:39 PM
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Posts: 322
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ConnieT Online
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my husband used doctors in Des Moines and never went for second opinions, not a lot of options here in the middle of nowhere!

I can see why you would want a second opinion. For other illnesses around here, people go to Mayo Clinic for second opinions. It's a least worth checking out.

My husband is being used as a case study since his treatment went so well. I need to look back to see your diagnosis as I can't remember.

Best wishes.....


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Re: Posting... after a long while [Re: dadofthree] #199509
11-24-2019 09:44 AM
11-24-2019 09:44 AM
Joined: Feb 2015
Posts: 88
Boston suburb
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tlc356 Offline
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Boston suburb
I would look for a doctor with extensive head and neck oncology experience.

I also understand that some of the leading centers offer the ability to send an electronic medical record for a long distance review/second opinion. If I had your concerns, that's what I'd attempt doing.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: Posting... after a long while [Re: dadofthree] #199513
11-24-2019 11:34 AM
11-24-2019 11:34 AM
Joined: Jan 2006
Posts: 752
Pennsylvania
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Susan2992 Offline
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Pennsylvania
I would go for a second opinion at one of the CCCs you mentioned or Johns Hopkins in Baltimore. Usually they do a Scan first - CT or PET. I’ve had 4 surgeries on my tongue and the first one was done locally. Found out months later they did not get clear margins and ended up having radiation. My last two surgeries were at Hopkins after I had a recurrence. Hopkins and most larger hospitals do a biopsy during surgery to help ensure they get clear margins - commonly called frozen sections. Speaking from experience I wish I had gone to Hopkins first. Good luck!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2017
Re: Posting... after a long while [Re: Susan2992] #199515
11-24-2019 03:33 PM
11-24-2019 03:33 PM
Joined: Aug 2014
Posts: 9
Greenwood, Indiana
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dadofthree Offline OP
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Joined: Aug 2014
Posts: 9
Greenwood, Indiana
I am going to be calling in the morning to see who can see me. The local doctor is faculty in IU School of Medicine and has experience and pretty decent bedside manners. That said, it's my health and a second opinion can't hurt. The CCC's in Chicago are the easiest to get to and hopefully they can see me. I'd be looking at Mayo or MD Andersen, but I don't see being able to get in there quickly with it being Thanksgiving week.

Thank you all for the recommendations. I will keep you all posted.

Re: Posting... after a long while [Re: dadofthree] #199579
12-06-2019 08:34 PM
12-06-2019 08:34 PM
Joined: Aug 2014
Posts: 9
Greenwood, Indiana
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dadofthree Offline OP
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Posts: 9
Greenwood, Indiana
I wanted to provide an update. I saw another local doc that was MD Andersen certified and he recommended a partial removal to ensure clear margins and skin graft to close it out. Of course, this is way different than what the current doctor treating me was stating. What I didn't like about doc #2 is that he only spent 10-15 minutes with me and on to the next person (#1 is a university doc and #2 is in private practice). I called up University of Chicago and Northwestern (both CCC's) and they will see me next week. At this point, depending on which group I build rapport with, I'll have #3 or #4 operate on me. I went and asked for my path report today and the pathologist had recommended a full excision because they couldn't assess invasion from the specimens they had. So, I have lost confidence in the local guys.

As I was trying to get a hold of my medical history, I realized that I have had some lesion removal surgery in 2011, 2012, 2013, 2014, and 2018 with biopsies in 2015 and 2016. I remember asking in 2014 what a permanent solution would be and not getting a clean answer. Should have pushed for an answer...


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