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Joined: Jul 2009
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Hi Glocita - please think of us as your new family. I know I speak for everyone when I say that we're here to help in any way we can. Ask us anything and everything - there are no such thing as dumb questions.

I'll be thinking of you tomorrow.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: Dec 2011
Posts: 126
Senior Member (100+ posts)
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Joined: Dec 2011
Posts: 126
Good luck with your surgery! I am 25, no risk factors, etc, so I completely understand how you are feeling! I had my surgery 6 1/2 mos ago, then chemo and radiation, and I am back to work and feeling great! I was very scared also, but I got through it and so can you. The surgery was probably the hardest part for me, but you will heal quickly being so young. I was extremely concerned about my speech, but even that got better over time, and my impediment is hardly noticeable (and continually improving). Feel free to reach out to me if you need anything - if you need advice or just want to vent. Hang in there! The days before my surgery were definitely the worst part.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Dear Glocita,

I completely understand your fear and anxiety. I was there a little over a year ago and I did NOT handle it well. Thankfully, I only had to wait 2 weeks before the same exact procedure you will be having tomorrow. It sounds like you are in good hands and you are getting the standard of care for your diagnosis.

Just know that you are NOT alone. I didn't find these forums until I was 4 months post-op and I am so grateful that I did. As some of us say here, there is strength in numbers, and you can lean on us when you need it. We are here for you and will get your through this!

I will be thinking of you tomorrow. Best of luck with your procedure, recovery, and prognosis.

With great care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: May 2012
Posts: 19
glocita Offline OP
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Joined: May 2012
Posts: 19
Thank you, thank you, thank you everyone!! I dont want any part of my tongue to go lol - but I want the cancer gone. It is the left side of my tongue that has the problem - but I mean...it hurts to talk as it is now, so I'm not really sure my speech will sound all that different after it is gone.

I am receiving treatment at Johns Hopkins - which I believe to have experienced surgeons. Its 10pm here on the east coast, and that leaves me with 2 hours left to eat before the surgery.

I guess the hardest part is that my mom and older sister do not want me to go through with the surgery. As they are in denial about me even having cancer - that means I only have the online support here as well as my close friends who all dont know what to say.

Actually my mom keeps crying saying that I will sound different. This is making it so incredibly hard for me. I dont think I will be different - I think I will be better!

But your messages are getting me through this tough time. While I still am terrified, I hope one day I will have the positive outlook about this that you all do!

In good health,
Gloria


T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
Joined: Mar 2012
Posts: 58
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Mar 2012
Posts: 58
Hang in there, girl. You've got this and everything will be ok! smile

MissB


Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
Joined: May 2012
Posts: 4
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Posts: 4
Good luck with that surgery, it seems those having such surgery on this forum are having good luck with it. I just joined and dropped somehow right into this topic, which is probably appropriate for me too, since I was just diagnosed yesterday with a stage one tumor on the right side of my tongue. I came to this diagnosis through oral surgeons, who want to operate and take about 30% of my tongue and they seem to think reconstructive surgery would be necessary also, so naturally I have a lot of trepidation and questions about all of this. I would also like to get a second opinion, and would like to know if anyone has been treated with a linear accelerator INSTEAD of surgery for such a stage one tongue tumor? From Google-ing around a bit it seems this might have a slightly smaller 5 year survival rate, but I would not have to have an operation on my tongue in this case, I suppose. Anyone have a take on that?

Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Hi there!! Good luck... If you have a good surgeon (John Hopkins does) the surgery should go well and will do what it's supposed to... I'm sure it's hard for your family but if you listen to them it will give th cancer a chance to spread. When I found out I had tongue cancer I wanted it out - and couldn't wait to have surgery just knowing that they got it all (which is what I was told after the surgery) - made it so I could breathe again. The radiation and chemo was a safety net... smile
Hugs! You'll get through it.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Gloria,
This surgery is going to save your life. There's no negotiating it...do it and you'll live, don't and you'll die. That 's a hard line to take. You seem to have a positive attitude. You mother and sister will come around and accept things on their own terms. So will you. This is all a grieving process from diagnosis to cure. You are all grieving and will continue to do so. It's totally normal and necessary. That's why it is so important to keep coming back here when you feel up to it. There have been times where I have just needed a mental break from all of this and have abstained from the forums for a short while. But, I am always drawn back here for support and to help others.

Your speech will likely get better over time. I was concerned about that, too. I still have some difficulty, but I can hear it more than others can. I did have some speech therapy after surgery, but that was after quite some time of healing.

Just remember, first things first and you will get through this. Right now, you're most likely a bit loopy and recovering from the procedure! Pain management, rest, and recovery and your priorities now. I am keeping my fingers and toes crossed for clear margins and negative nodes!

Be well,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Gloria,

Just to ease your mind a bit, Johns Hopkins is the #1 Ear Nose & Throat program in the U.S. and ranked #3 in Cancer care, you are in the best hands my dear.

I always say, choosing the absolute best medical team available to you gives you the best odds of survival and best shot at good quality of life. After your medical team the only thing you can control is your attitude and nutrition so keep plugging into these boards and let us help you on that end.

Keep your chin up

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: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Feb 2012
Posts: 34
Glocita... trust me, these people are the most wonderful,helpful and who really understand what you are going through. Since I found this site, I have better control of life even. And how I think.. everybody has second chance which might be hell better than what we had before...


CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
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