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Newly diagnosed SCC - Terrified and overwhelmed #197294
10-05-2018 05:44 AM
10-05-2018 05:44 AM
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rayster Offline OP
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rayster  Offline OP
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The title says it all. I'm 46, and besides being fat and having Type 2 diabetes, I've always been pretty healthy. A few weeks ago, I chomp down and an almond sliver goes into my gum, it swells up and stays swollen, starts to bleed. My doctor says "Yeah, you infected your tooth, see the dentist." The dentist freaks out, sends me to an oral surgeon, who sends me to an ENT, who sends me to another surgeon, who debulks the lump and pathology comes back as SCC in the gum and lower jaw. Surgeon doesn't think it's made it to the lymph nodes, or anywhere else. PET scan yesterday, waiting on results. Mandibular resection scheduled for the week after next Meanwhile the lump is already starting to regrow in the week since the debulking.

I'm looking at 5 year OC survival rates, and trying to tease out some hope. But it's not working. The doctor says he thinks we're catching it early, and I hope he's right. But what feels so unfair about it is, other than the lump, an itchy cheek, and maybe a sore throat, I feel fine. Like really fine, better than I've felt in years. I'm going to go out and chop some wood later, and rough house with our 4 year old. But in the back of my mind, it feels like I've been given 10 days to live.

I'll fight, with everything I have, to beat this thing. But how do you get your brain around it? How do you not take it as a veritable death sentence?

Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197295
10-05-2018 06:10 AM
10-05-2018 06:10 AM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
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KristenS  Offline
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alabama
Your story is kind of like mine ... we weren't even thinking cancer, and I had a surgery to remove a non-healing sore, and Oh, look, cancer! Except yours sounds a lot harder, and I'm sorry. There are lots of folks here who HAVE beaten the odds, though, and you hold on to those, and follow their advice as much as you can ... that's what you do right now. (Some of them come on to all new posts and give good advice ... I highly recommend heeding it! I couldn't do all that was suggested but I wish I could've.) And write down ALL the info the doctors and nurses give you, because it ends up being a lot to remember ... I had my mother with me at most treatments, as my driver, and that helped a lot (my stepdad watched the kids, so my husband could work ... we homeschool, and that was sure interesting). Take help when it's offered, put them on a list, and then call them when you need them. You may not right now (after all, we didn't feel sick up front!) but if you end up in chemo or radiation territory, you'll want reinforcements. Hope you don't have to, but doesn't hurt to be prepared.

And ((hugs)) ... everyone here is rooting for you.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197302
10-05-2018 11:52 AM
10-05-2018 11:52 AM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
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Is your surgery being done by a surgeon that treats head and neck cancer? Do you live near any cancer centers?


I am a little farther in my journey than you but our stories are similar. About mid-August, large lump on underside of my tongue that was painful, went through a lot trying to get a diagnosis and a biopsy. Biopsy came back squamous cell carcinoma of the tongue, just had surgery to remove it on October 1st, lost a fourth of my front tongue. Also had a left side neck dissection done. I'm home and healing and hopeful that my journey is over once I'm healed and learn how to use my new mouth.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: VirgoMomof3Boys] #197303
10-05-2018 12:30 PM
10-05-2018 12:30 PM
Joined: Oct 2018
Posts: 6
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rayster Offline OP
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[quote=VirgoMomof3Boys]Is your surgery being done by a surgeon that treats head and neck cancer? Do you live near any cancer centers?[/quote]

The main surgeon is a surgical oncologist who used to be an ENT. My wife is a nurse (ortho supervisor), and when she asked her extended network, he's The Guy, at least in this area. He's honest/blunt, and so far, I don't want to have a beer with him, but he seems to be on the 'be super aggressive early so we don't need to deal with it again" level.

The hospital calls it a "cancer institute" and it's part of the Memorial Sloan Kettering Cancer Alliance, so I don't know if that counts as a cancer center or not?

Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197304
10-05-2018 12:50 PM
10-05-2018 12:50 PM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
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Joined: Jun 2013
Posts: 345
alabama
Sounds like you're in the right network of specialists, but a second opinion is still worthwhile. "Super-aggressive" is along the same lines as surgery ... once it's done, you can't take it back. I had some doctors who went the super-aggressive route ... not that the treatments themselves were all that out of the ordinary, but I think they were above and beyond what my stage warranted, and I've had to deal with the fallout from that. They got twitchy because I had a very rapid recurrence, even though it was still very mild. I'd done second opinions the first go-round, so I didn't worry so much the second time ... which was not a good plan. In hindsight, just knowing I'd had the second opinions would do me a lot better now.

That said, it may still be just exactly the treatment you need, and the second opinion reinforces that ... which is GREAT to hold on to during the struggling times.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197308
10-05-2018 10:51 PM
10-05-2018 10:51 PM
Joined: Apr 2018
Posts: 51
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DeniseG Offline
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DeniseG  Offline
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Take a breath. It sounds like you have got things covered. My dad had two bouts of oral cancer in his upper palate. He has a prosthetic and he is 95, his last surgery was 10 years ago. He never had radiation although it was recommended after the first surgery. Having OC is not automatically a death sentence. There are lots of check ins of long term survivors on this forum, check them out. That said, I know how you feel. I was diagnosed almost a year ago with SCC on the right side tongue. I had surgery in Feb and started 30 rounds of radiation in March. I just had my first post treatment PET scan and am seeing my doctor this week, hoping all is good as the doctors assure me it will be. You are in the right place for support and encouragement along your journey, we've all been there. The treatment for your cancer is going to be rough, no way around it, OC treatment is tough. But you will get through it! Keep us updated and we will be here to support you!









































































Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197312
10-06-2018 07:39 AM
10-06-2018 07:39 AM
Joined: Mar 2014
Posts: 286
Brisbane, Australia
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OzMojo Offline
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Brisbane, Australia
Hi Rayster. Sorry to hear your diagnosis. There's no two ways around it, its a scary time! Your feelings are completely normal, I think most people feel that way at the start. I certainly did.

The people here are patients and caregivers, and every journey is different. We're not medical professionals and can't give medical advice but it sounds like you have the medical stuff well underway.

The waiting is hard. I found it easier to break down into steps. The next appointment, next treatment, next test results etc. There comes a point where you've done all the admin and side issues, and you just have to wait for the next step. My next step is my checkup in December, and no matter how many times I rub my neck and do test swallows there's nothing I can do before then. Yours is your PET results, then your surgery. If you think too far beyond that it will do your head in. Take it one step at a time.

Googling is very good for helping you understand what the doctor has told you, and I found it helpful in framing my questions for the doctor next time I saw him. You only have a limited window to discuss things directly with the doctor, and there's a lot of information to process. I see you've Googled OC survival rates, which is extremely common and I did exactly the same thing. The problem is you're actually asking Google the wrong question. You don't care that xyz number die from OC, or even the odds. The question you want the answer to is "is this going to kill ME?" Thats the real question. Of course even the mighty Google doesn't know the answer to that one. But it is a useful tool for getting your head around medical terms.

Keep posting your progress, you'll be surprised to find that most things someone here has experienced already, including weird things that aren't on your radar right now. Its a tough road, but you're not alone.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197313
10-06-2018 07:52 AM
10-06-2018 07:52 AM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
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Posts: 71
This was what I copied from one of ChristineB's posts:

A second opinion at a different facility, preferably at a Comprehensive Cancer Center (CCC) would be a very good choice if its available. They use a team based approach where all the experts are on the same page. They work together to create your individual treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started to eliminate the cancer. Remember your physician and medical team work for you so choosing the right team and facility are crucial.


https://www.cancer.gov/research/nci-role/cancer-centers/find THIS IS THE LINK TO CCCs


Last edited by VirgoMomof3Boys; 10-06-2018 08:12 AM.

Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: DeniseG] #197344
10-08-2018 07:39 AM
10-08-2018 07:39 AM
Joined: Oct 2018
Posts: 6
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rayster Offline OP
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rayster  Offline OP
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Posts: 6
[quote=DeniseG]Having OC is not automatically a death sentence. There are lots of check ins of long term survivors on this forum, check them out. That said, I know how you feel. I was diagnosed almost a year ago with SCC on the right side tongue. I had surgery in Feb and started 30 rounds of radiation in March. I just had my first post treatment PET scan and am seeing my doctor this week, hoping all is good as the doctors assure me it will be. You are in the right place for support and encouragement along your journey, we've all been there. The treatment for your cancer is going to be rough, no way around it, OC treatment is tough. But you will get through it! Keep us updated and we will be here to support you!
[/quote]
Good luck to you, and thanks. Trying to put things into prospective. People survive this, why not me? And everyday is another day closer to better treatments and the status quo changing, right?

[quote=OzMojo]The waiting is hard. I found it easier to break down into steps. The next appointment, next treatment, next test results etc. There comes a point where you've done all the admin and side issues, and you just have to wait for the next step. My next step is my checkup in December, and no matter how many times I rub my neck and do test swallows there's nothing I can do before then. Yours is your PET results, then your surgery. If you think too far beyond that it will do your head in. Take it one step at a time.[/quote]
So this is exactly where I am right now. By nature I'm a planner, and I like to start at the end, quantify risks, and work backwards. That's not working for this. So trying to focus on the next step, and being ready to roll with the punches. Resilient rather than planful. So focused first on what needs to get done, just in case. Transition plan at work. Financials, house stuff I can take care of in the next week, recording messages for my wife, son and friends, birthday cards for my son until he turns 18. I'm limiting that scope to "surviving the surgery'.

Then I'm a blubbery mess.

Get my head out of it, and plan for the near future. Spent the weekend doing family stuff, mostly feats of strength so I remember what it's like to be original version me. But I already asked the plastic surgeon how quick the leg will rehab if i make it off the table. He tentatively okay'd planning for a vacation to Scotland in April. So bought travel books and started talking about itineraries. My buddy is going to come help put in a bathroom in our basement next weekend. I've been putting it off, and the wife is questioning whether we want to do it now, but it's a twofer. It'll help with convalescing - it'll be a lot easier for her to work and keep the house presentable w/o help, for all the friends and family that'll show up, if I can be stashed down in the family room during the day. And once I'm good, we'll have a much needed BR down there. And it gives me a near term future project to focus on. So, a three'fer actually.

[quote=OzMojo]Googling is very good for helping you understand what the doctor has told you, and I found it helpful in framing my questions for the doctor next time I saw him. You only have a limited window to discuss things directly with the doctor, and there's a lot of information to process. I see you've Googled OC survival rates, which is extremely common and I did exactly the same thing. The problem is you're actually asking Google the wrong question. You don't care that xyz number die from OC, or even the odds. The question you want the answer to is "is this going to kill ME?" Thats the real question. Of course even the mighty Google doesn't know the answer to that one. But it is a useful tool for getting your head around medical terms. [/quote]
Yeah, and that's a biggie. I like numbers in everyday life, but they're not really spectacularly useful here. So I've kinda pulled back from that. I've been reading Ian Gawler's "You Can Conquer Cancer" and the chapter on dealing with the prognosis was helpful. Now if I could just get the analytical part of my brain to settle down when I'm not working, I might be able to hold it together.

Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: VirgoMomof3Boys] #197345
10-08-2018 07:41 AM
10-08-2018 07:41 AM
Joined: Oct 2018
Posts: 6
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rayster Offline OP
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rayster  Offline OP
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Joined: Oct 2018
Posts: 6
[quote=VirgoMomof3Boys]This was what I copied from one of ChristineB's posts:

A second opinion at a different facility, preferably at a Comprehensive Cancer Center (CCC) would be a very good choice if its available.
[/quote]
I'm going to try and get in at one of the places close-ish to me this week.

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