Previous Thread
Next Thread
Print Thread
Page 6 of 9 1 2 3 4 5 6 7 8 9
Joined: Nov 2009
Posts: 493
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
Ben,
I didn't find this forum/site until well after my treatments had been completed. I wish I had, because it really would have helped when I was going through it all. That said, I wouldn't have done things differently than I did even without the information that is given here, but I have been one of the lucky ones. My dentist, oral surgeon, and ENT were very experienced in the treatment of oral cancer. I did go through the staging and everything that is reccomended here, so even though my cancer center is relatvely small compared with some of the others, I feel that my treatments were right on the money. I have heard many horror stories, however, of other patients who have not had the same care that I have.
Please keep an open mind, Ben, and even if you like your current docs, make sure that they are not afraid to refer you to some place else if need be. The people here all want what is best for you.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
Joined: Sep 2010
Posts: 63
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Joined: Sep 2010
Posts: 63
guess theres no right or wrong information, after a total glossectomy & full neck disection straight away i thought it was a good thing and i would be fine. i did some research just to know and after the first " kaboom" here's your diagnosis would be better prepared. october last year i was told i had lung cancer ( which i knew already had been a strong possibilty ) and no cure which i accepted but the shock was back again when the problem on my buttock which had started in october and initially as a boil then an abscess was found to be scc after a biopsy was taken in early december operation. between the specialists there is some surprise for a supposedly unrelated scc to appear where it has but also that it seems to coincedental


45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
Joined: Jan 2012
Posts: 26
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jan 2012
Posts: 26
I've seen my oncologist. I have decided to stay with him, and the Coborn Cancer Center in St. Cloud, MN. I am impressed with him and with his and the center's accreditation, experience, skill, and quality of care. I will have to leave these forums if my decision to do so is called stupid or ignorant, and my confidence in my doctors and my treatment and care are under threat of being undermined by what people say to me here. New information on what I've learned from pathology and staging is now in my signature.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Dec 2010
Posts: 290
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 290
Wishing you only the 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 February, 2018
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Ben,

Feeling comfortable with your medical professional is important. After your choice of medical team, the two most important things, and really the only things you can control are your attitude (outlook) and nutrition. The rest is up to how your body responds to treatment.

I'd also ask your medical team if they've identified if your tissue samples were HPV+ or not (if they even knew to check as you've posted earlier they haven't informed you) as the choice of chemo will greatly depend on that knowledge. HPV+ tumors and Erbitux don't mix well.

Before starting radiation make sure they do a test on your thyroid and testosterone levels to get baselines as there are countless others on these forums that have had post treatment issues with those as well. Radiation and chemo are not fun, many of us struggled through it and the advice from survivors who have been there and done it have helped many through it, so I wouldn't advise lone wolfing it through that ordeal. I did and it was f'n horrible, it's not happy time with help, but it's one of the lowest depths of hell without it...from someone who's been there done that.


Good luck Ben.


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: Aug 2010
Posts: 72
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 72
Hi Ben,

Getting back to your original question about statistics, have you seen this report?

http://seer.cancer.gov/csr/1975_2008/results_merged/sect_20_oral_cavity_pharynx.pdf

Iím a numbers person and spend my time slicing and dicing them. I know some people should stay away from statistics, but I wonít condescendingly assume you are one of them.

Good luck with your treatments. I pray you have a full and fast recovery.


Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Ben

First, thank you for making me look diplomatic and considerate of other poster's feelings in comparison. We have so many ultra polite people here, that my rough and ready style can seem overly harsh without posters like yourself.

Secondly, I have no problem at all with your decision to stay with the ones that brought you to the dance. I definitely do NOT think it's stupid, nor ignorant in any way.

Third, cancer doctors, even the ones at the CCC I went too, do not realize the utmost importance of having your TSH levels of your thyroid hormone tested before any radiation or chemo. Trust me on this one, you want your TSH levels after TX to be close to what they were before the treatment. There is controversy over what is the right TSH level with labs and CCC's having a 5.5 or a 4.5 as okay even though endocrinologists who went to Medical school in the 21st Century conbsider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back and I'm back down to 1.5

Last but not least: are you really going to let yourself be run off of this forum if somebody disagrees with your reasonable decision? I'll put it in your type of no nonsense language: Why would anyone ever consider some "opininated poster on the internet" as a threat to their confidence in their doctors or TX unless they really did not have any confidence in themselves. It's time to man up here. Don't be one of those guys who can dish it out but can't take it. Temper your own post tone if you want calm replies to them.

There is no alternative to OCF for real answers based on real life for the challenge of your life.


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: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Ben,

Some of us (ahem, Charm!) are an "acquired taste" if you will. I'm perfectly agreeable and pleasant at all times, as I of course expect everyone else to be...

Funny story, Charm and I's first encounter on these forums we got into such a disagreement that Brian had to lock the thread down. We've been friends ever since and I appreciate him, especially when I know he's the guy to tell it to me straight. Something you'll appreciate the more you deal with medical professionals.

To be fair, I've almost quit and been kicked off of these forums several times, cancer is a heavy subject matter and emotions can run high, even after treatment ends and "surviving" begins. I look at it like this though, we're all in this together as really nobody else understands what this disease is like other then those who've lived it, not even our Dr's.

Seriously we all wish you luck and I don't think you'll find any other support group out there with as many caring, knowledgeable people, I've looked.

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: Jan 2012
Posts: 26
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jan 2012
Posts: 26
I had people criticizing me for saying "I'll ask/talk to my doctor about that" all the time. They seemed to want me to cut doctors out and listen to them only. I thought I was just putting it straight about the strangeness of crediting you all's advice being so perfect and comprehensive that doctors couldn't have anything to contribute. From one opinionated person on the internet to another, I wouldn't bat an eye at someone telling me I'm not a doctor and they're damn well going to talk to doctors as well as me. It wouldn't occur to me to think they were being undiplomatic or inconsiderate of feelings by saying something as obvious as the sky is blue.

Even so, I'm human and at a time like this my confidence is vulnerable to periods of being shaken, no matter how much of a big confident man I am the rest of the time. Sheesh.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Ben,

Trust me when I tell you, I understand. I live in a small town in BFE Idaho and went to a local ENT when I was diagnosed with very late stage Oral Cancer, my primary tumor was the size of the right side of my face. My ENT took it upon himself to send my case to the University of WA (#6 in cancer care in the U.S.) to get another opinion to "ensure" I had the best chance to live. Not only did he inform me of my options, he took that extra step because he knew how bad my odds were.

Had he not done that and went off of NCCN standard of care treatment, I'd be dead right now. The UW identified issues that my Dr (who has a really good pedigree if you will) couldn't know due to their experience.

What you should see as a recurring theme here are all of the posters sharing with you how many friends we've lost due to this disease. The outcries of "Get the Second!!!" is really our plea to you to just take that extra step because we've witnessed it too many times and experienced those losses. It's the history even a person like Cheryl, who's only been here about a year has seen too many times and we stress it because we actually give a damn.

We've also witnessed the arrogance and neglect of Dr's and due to that we've lost friends, some of us family. Often, as you'll realize when some people get a few degrees associated with their name, it goes to their head. For those of us who've been blessed to have fantastic Dr's who take it upon themselves to make sure their patients are properly educated to make life and death decisions and even take it upon themselves to get a second opinion for their patients...we get appalled and question the care (as we should) when we see that not happening for the patient.

So it's because we care bro. That's it. This ride just get's worse too as it progresses so we want you to prepare for that and support you right through this hell to the other side.

Anyway Ben, best of luck to you man, plug in or ask questions and we'll try to relate and support.

Keep your chin up man, you've got a fight ahead of you.

Eric

Last edited by EricS; 02-02-2012 01:06 AM. Reason: always spelling

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.
Page 6 of 9 1 2 3 4 5 6 7 8 9

Link Copied to Clipboard
Top Posters
ChristineB 10,502
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
rkinjo, Garvin, KathDE, Darcy67, MJK
12,622 Registered Users
Forum Statistics
Forums23
Topics17,903
Posts195,722
Members12,622
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5