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Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197348
10-08-2018 11:55 AM
10-08-2018 11:55 AM
Joined: Jul 2009
Posts: 1,399
Los Angeles
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David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
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Joined: Jul 2009
Posts: 1,399
Los Angeles
Rayster - I'll chime in even though my part of the road on this particular journey was a great deal less bumpy than yours will likely prove to be. It might be helpful if you read Stephen Jay Gould's account of his cancer. Perhaps you know about him. He of course was a brilliant scientist, and he knew that statistics are exactly that: just figures that help people get their mind around large-scale events. They are entirely objective and each of us is different. You say you like numbers (I can't even remember how to do long division...) so you'll understand this more than I. Here's a brief about him:

https://www.mesothelioma.com/blog/a...ma-stephen-jay-goulds-cancer-journey.htm

It's important to note that his type of cancer was far less survivable than what we all face (generally speaking), yet he got through it for many, many years.

Other than that I have nothing to offer but my good thoughts and friendship. My own H&N cancer experience was of course rough, but I got through it and so will you. You're part of our family now and we're here to help, to cheer, and to support whatever you're going through.


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 10 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
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197353
10-09-2018 06:16 AM
10-09-2018 06:16 AM
Joined: Mar 2014
Posts: 286
Brisbane, Australia
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OzMojo Offline
"OCF Down Under"
OzMojo  Offline
"OCF Down Under"
Gold Member (200+ posts)
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Joined: Mar 2014
Posts: 286
Brisbane, Australia
When I was first diagnosed a good friend told me "remember when its 2.30am, you're sitting on the floor of the shower crying, tell yourself your not alone and you'll be ok." Of course at the time I had no idea, and shrugged it off as well intentioned advice. 2 months later I was sitting on the floor of the shower crying, and I smiled when I looked at my watch. It was about 2.45am, so she was pretty close.

I started out worrying about my kids and grandkids, but I found when you're sick the world gets real small. Sometimes its no bigger than the toilet you're throwing up in. I was surprised to find cancer is the last thing on your mind when you're really sick. You're more worried about what new combination of symptoms will my body throw at me today.

Every cancer journey is different, and you'll have different experiences to mine. Keep posting your progress up here, there are plenty of caring folks with good ideas.


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: OzMojo] #197356
10-09-2018 08:30 AM
10-09-2018 08:30 AM
Joined: Oct 2018
Posts: 6
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rayster Offline OP
Member
rayster  Offline OP
Member
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Joined: Oct 2018
Posts: 6
For you folks that are long term survivors, do you ever get back to anything near normal again? The thing that rocked me, probably more than anything else, is the utter feeling of vulnerability, and the idea that that vulnerability will ride with me forever. I'm terrified of the idea of recurrence, and I can't see that ever fading. It's literally like the boogieman actually came out of the closet; how do you sleep at night after that?

Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197358
10-09-2018 11:03 AM
10-09-2018 11:03 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Your normal changes. You'll see me weep a bit here on the forums, because this is the only place I really can ... it's a good place for advice and sympathy. But in real life, I have to try to just keep moving forward. I've got a lot of new challenges, but there's still a lot I can do. I've been a Scout leader (Girls and Boys both) since my kids were little ... I still do that, just have to make a few more accommodations when we go camping. (And honestly, I think I'd have to do that anyway ... I was one of the few adults who didn't like taking along big mattress pads before; now I need one. LOL. That might just be age!) I adjust the menu for myself. But those are also good lessons for my youth, so we play it that way. And my co-leaders know there might be days where my energy just isn't there and they have to take over. (Since I'm generally ADD and high-energy, again, a break would be needed on occasion anyway ... just more now than it used to be.) That's some examples, anyway. Home is crazy, too, but who knows ... life changes and it could be that anyway. My family is great and the whole mess brought us closer together, so there's that. And I have a good therapist (had one before, started seeing him again) who helps me through the really rough 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] #197363
10-09-2018 12:03 PM
10-09-2018 12:03 PM
Joined: Jun 2007
Posts: 10,500
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,500
PA
Welcome to OCF, Rayster! Im so glad you have found our site to help you get thru everything!!! Being among other oral cancer (OC) patients/survivors who have already been thru the hard times helps make it a little easier. We completely understand every single thing you are dealing with and we know how to make this as easy as possible. When you get a cancer diagnosis out of the blue it is NOT easy to handle mentally. If you have not yet checked in to see a therapist, Id suggest doing so ASAP as it can take weeks to get in as a new patient. Many patients will need the help of a therapist and anxiety meds to get thru their diagnosis, treatment and recovery, the meds can also take weeks to kick in. Its nothing to be ashamed of, even quite a few caregivers need the extra help as well. I found it very helpful top focus on what is within my control... any "what if" thinking is unproductive and just making everything harder than it needs to be. Try to stay as busy as possible to keep your mind engaged with positive things like reading a good book, doing complicated puzzles, watching a complex movie are all a few things to help get past this initial shock phase. Every single day push yourself to do only positive, productive things that will in the long run help you down the road when you will be going thru treatment and/or recovery.

At first theres a million an d one appointments (at least it sure seems like that many) which have patients running all over the place. As you tell people about your illness, many will offer their help. At this time its far too early to know what you will need. Tell everyone you will let them know when the time comes what they can do to help. Be prepared for friends and relatives to have varying reactions to your news. Some who you are closest to may run for the hills pulling a shocking disappearing act while those who arent close may turn into your biggest supporters and cheerleaders. Write down every single person who offers their help with complete contact info. If possible after you get a decent list going (10-12 or more) people think of one of those people who could be in charge of relaying info to everyone. Its a good idea to select someone other than your spouse as the info relay person. There really are tons of things others can do... take your little one for a day of fun, walk the dog, mow the grass, pick up groceries or cook a meal for your family, pick up prescriptions, do a load of laundry, drive you one day a week to rads (if you do rads), sit at the hospital taking a "shift" so your spouse can tend to things at home are just some of the little things that can help make this so much easier for you and your spouse.

Do your best to think positive and not focus on the doom and gloom of worrying about things that are too far down the road. At this point you do not even have a treatment plan in place so its very very early to even consider a recurrence. Most patients do NOT have recurrences! Those being treated at the countrys top comprehensive cancer centers (CCC's) have the best odds of not going thru a recurrence. If at all possible try your best to have treatment at a CCC. Please let me know if you need the list of CCCs. I suggest a better focus of energy is to focus on something to help get your medical team selected and get a second (or third) opinion. Any extra stress you bring upon yourself at this time only makes things so much harder than this needs to be. Read posts here and info on the main OCF site to learn about your illness so you can become a strong advocate for yourself. Of course none of this will be easy but with us by your side, you will get thru this and get back to your regular life. It will take time to bounce back but thats getting too far ahead. Take things day by day.

Hang in there!!!



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: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197375
10-10-2018 11:10 PM
10-10-2018 11:10 PM
Joined: Jan 2006
Posts: 755
Pennsylvania
S
Susan2992 Offline
"Above & Beyond" Member (500+ posts)
Susan2992  Offline
"Above & Beyond" Member (500+ posts)
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Joined: Jan 2006
Posts: 755
Pennsylvania
Rayster, welcome to OCF and very sorry that you had a reason to join us. I heard those dreaded words in 2005 when my sons were still teenagers. I wasn’t sure I would live to see them graduate from high school. My journey had a lot of bumps in the road including a recurrence in 2010. I had a lot of side effects but overall I am doing well and enjoying life. I personally know many long-term survivors. Most people do not have a recurrence and most OCF forum members rarely post on here after they are done with treatment. This disease can be aggressive and you should treat it that way. Treatment can be brutal, but it is only temporary. If possible seek a second opinion at a major cancer center that treats a lot of oral cancer patients. I was initially treated locally (didn’t know better), but when I had a recurrence, I went for a few “second” opinions and ended up at Johns Hopkins in Baltimore. I wish I had started there for so many different reasons.

Wishing you the best!


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: 2013-2020
Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197595
11-13-2018 07:07 AM
11-13-2018 07:07 AM
Joined: Oct 2018
Posts: 6
R
rayster Offline OP
Member
rayster  Offline OP
Member
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Joined: Oct 2018
Posts: 6
So just wanted to post a quick update, and a thank you to the group. During the initial rush of info and emotions, finding this forum was like finding a log to cling to when you're being swept away in a flood; the flood's still happening, but at least you can keep your head above water. My very deepest thanks to all for the shared advice, and experiences, and simple good wishes.

So I'm 3 1/2 weeks post mandibular resection, and about 2 weeks pre-radiation. Before the sugery, I took the time to bundle all my records and go to a dedicated CCC for a second opinion. They confirmed the treatment plan, and while a lot of the doctors were nice, the head of surgery came across very "you're just a number" to me, and they didn't offer the same reconstructive and nerve grafting options my local hospital did. Not doubting their skill or their outcomes, but factoring in the logistics of trying to do the surgery and aftercare and hour and a half away from home, the surgeon's attitude versus the one I had, and needing to wait at least another month to redo all the consults, I opted to stay the course.

Honestly can't say enough good things about the ENT surgeon. He chased down everybody, Plastics, Imaging, making sure the surgical plan was buttoned up, made the radiologists check and re-check their findings; the day before surgery the last recheck confirmed that the cancer was further along the jaw than they'd reported, and also in one of the nerves we expected to graft.

Surgery went off without a hitch, took 13 hours. They'd told my family I'd be in a coma for a day or two after, but apparently things went well enough that they woke me the next day. Out of the hospital in 13 days, with the the graft alive and kicking, the primary neck/throat incision healed, the NG tube pulled, swallow test done and GTG on soft solids, weight bearing on the graft leg with a boot and a walker.

Went home with a trach tube in my neck, but it was pulled last week, and is almost healed. Final pathology from the surgery said that the lymph nodes were lit up on the PET scan, but never had cancer in them, they were reactive, probably from an actual infection. Also, confirmed negative surgical margins everywhere there was cancer, so chemo is off the table. Been having home health come in for wound care and physical therapy; graduated skipped crutches and graduated to a cane last week. Rehabbing the leg has been the hardest part of recovery to this point. I've been meeting with the radiation oncology team, prepping for treatment.

My doctor's tempering expectations, but says this is good news in terms of prognosis. So that's where I am. Things have probably gone as well as they could have gone under the circumstances, and I'm still standing, with a decent chance to keep standing for a while.

Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197596
11-13-2018 07:39 AM
11-13-2018 07:39 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Good to hear this! Very glad 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] #197597
11-13-2018 12:01 PM
11-13-2018 12:01 PM
Joined: Jun 2017
Posts: 30
M
Magnum Offline
Contributing Member (25+ posts)
Magnum  Offline
Contributing Member (25+ posts)
M

Joined: Jun 2017
Posts: 30
Rayster - you sound like you have a good plan in place for yourself! Also, while you're recuperating keep in mind that you will get to "normal"...it'll just be a "new" normal...


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt


Re: Newly diagnosed SCC - Terrified and overwhelmed [Re: rayster] #197599
11-13-2018 07:12 PM
11-13-2018 07:12 PM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Wow! You've been on a wild ride lately! So glad to hear surgery went well and your recovery is moving right along. I am also two weeks out awaiting radiation with no chemo so here's to hoping that leg of this journey goes smoothly for us both. smile

Last edited by VirgoMomof3Boys; 11-13-2018 07:12 PM.

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
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