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Joined: Sep 2010
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I cannot believe this forum has been going since 2002 and I never knew.
I'm Joan and have been a survivor or my favorite term is Thriver since 1988. I was diagnosis on 4/7/1989 and finished treatment in July of that year. I was on a VA study for the NCI at the University of Birmingham Hospital for inoperatable cancers of the Larynx. I learned later that I was one of 11 women on the study. My motto is "Guineas pigs get cured first".
I have a great deal of experience but all of it was over 20 years ago and now I'm dealing with living this long after cancer. There are always issues but all in all life is wonderful.
Since treatment I have had 3 carotid Artery endorectomies and 3 stents placed in my subclavian arteries on both sides. I am 60 now (I was 38 when I was diagnosed)and my throat is beginning to not work so well.
On the positive side - since treatment I have gotten sober and maintained sobriety for 21 years, gotten a Master's degree in Social Work, have opened my private practice 14 years ago, live on a gorgous beach with a wonderful guy in Florida.
I look forward to participating in the forum, learning when I can and helping when possible. I feel it is important to give back what I have been given.


Joan Mason
60 yrs old
Triver for 22 years
post Cancer of the Larynx
Tumor on the epiglottis
Tx began 4/25/88 end 8/12/88-I think
One of the first women to receive chemo and radiation therapy for head/neck Cancers
Joined: Sep 2009
Posts: 229
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Joined: Sep 2009
Posts: 229
Welcome to OCF Joan!


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
Joined: Jun 2007
Posts: 10,507
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Joan, its great to have you join our forum!!!! Congats on being a long term 'thriver' smile


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
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Hello Joan. It is really great to hear about how you have thrived all these years. I'm only 2 years out and still struggle to get a feeling of normal life and hoping that it will continue to get normaler ;o).


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Thanks, Patty for the warm welcome.


Joan Mason
60 yrs old
Triver for 22 years
post Cancer of the Larynx
Tumor on the epiglottis
Tx began 4/25/88 end 8/12/88-I think
One of the first women to receive chemo and radiation therapy for head/neck Cancers
Joined: Sep 2010
Posts: 8
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Joined: Sep 2010
Posts: 8
Thanks, Christine


Joan Mason
60 yrs old
Triver for 22 years
post Cancer of the Larynx
Tumor on the epiglottis
Tx began 4/25/88 end 8/12/88-I think
One of the first women to receive chemo and radiation therapy for head/neck Cancers
Joined: Sep 2010
Posts: 8
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Joined: Sep 2010
Posts: 8
Thanks for the welcome, David.
As for normal life - normal is an objective term. What is normal to me is probably, no not probably, is not what it was before I had the cancer but it is a new normal. I deal with what happens on a day to day basis and enjoy the gift of life I have been given.
I have issues that I deal with, as well as people around me deal with and that is just how it is. I spoke briefly about the consequences of this cancer but did not go into detail but there are consequences of having cancer for everyone who has cancer.
We are so fortunate that we have so much more knowledge now then we did even when I had cancer. When I as diagnosed they were going to remove most of my throat and leave me with a hole to speak throught with as microphone. That did not appeal to me at 38 years old.
They, my doctors, gave me to opportunity to be a part of the study,this was the study that was done to see if chemo and radiation was as effective as surgury. So I got to keep my voice, such as it is, I've been told my voice is sexy. Yeah.
But you are probably aware of the consequences, no sense of smell, taste, lost a great deal of hearing, scar tissue in veins and arteries but I maintain close contact with my doctors, new ones now that I live in Florida, and most improtant do not do the behaviors that I did that gave me this cancer, drink and smoke.
Stay with it - it does get easier and you will also have a new normal - for me my new normal is better then the old normal.


Joan Mason
60 yrs old
Triver for 22 years
post Cancer of the Larynx
Tumor on the epiglottis
Tx began 4/25/88 end 8/12/88-I think
One of the first women to receive chemo and radiation therapy for head/neck Cancers
Joined: Apr 2010
Posts: 201
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Posts: 201
Welcome Joan. So good to see such a long term survivor.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
Joined: May 2008
Posts: 357
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Posts: 357
Welcome, Joan -
Your story is wonderful, Joan!

My dad had Cancer of the Larynx in the mid 1970s - heavy smoker & drinker - and had his larynx removed. He had rad. prior to surgery to shrink the tumor. I discussed his case with docs at Sloan Kettering, but they tole me there was no other treatment - that was the protocol.

He learned esophageal speech and was a Thriver, also, despite losing his voice.

He developed inoperable lung cancer in 1986 and passed away in 1987 from either a stroke or heart attack, perhaps due to chemo. (my stepmother said docs weren't sure, & she didn't get an autopsy.)

Welcome to the forum and congratulations on being a Thriver.

Marlene


Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
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Posts: 224
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Nice to see someone on here that has made it past 12 years. Gives me a bit more hope. I am glad you have made it this far and are on here to speak to some of us new comers. I am only 5 months post surgery and almost 2 months post radiation. I am hoping where I am at is not going to be my new "normal" cuz it's still difficult, more so then I would like it to be, and I am hoping I am still healing and will get at least a bit better.
It's nice to hear from one of the first and that you have made it so far and can talk about it. Welcome to the boards.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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