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#148237 - 04/14/12 01:24 AM Hi, I'm Robin (survivor/mother of two)
robindini Offline
Member

Registered: 04/14/12
Posts: 15
Loc: Connecticut
Hello everyone. I'm 33 years old and I'm a married mother of two boys, 2.5 years and 1 year. I was diagnosed with a squamous cell carcinoma in my tongue on October 17, 2011. A week later on 10/25/11 I had a partial glossectomy which removed 50% of my tongue, the tumor, and some of the muscle underneath. Due to the size and stage of my tumor, the doctor's performed a neck dissection on 11/29/12. Four days later I was hospitalized for an infection in my incision but was happy to find out the results of my lymph node biospy as 29 lymph nodes tested negative for cancer.

And arduous and long 7 week journey from diagnosis to cure has exhausted me but shown me strength at the same time. I am looking for support from others who have dealt with the same cancer as I regain feeling in my tongue and nerve damage in my neck and face. I would love to connect with other mothers with little ones as well.

It's been a bit of a delayed reaction for me going through what I went through so quickly. Not a day goes by where I don't think about cancer and getting ready for six week follow ups can be an emotional roller coaster.

Thanks for reading and I look forward to sharing with you all as we all learn more about oral cancer and how to educate ourselves and others.

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#148238 - 04/14/12 01:49 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: robindini]
terrib Offline
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 150
Loc: MN
Welcome, you will find true friends here along with so much helpful information. Checking these forums has been my therapy these last few months. Wishing you a fast recovery. You must have amazing strength dealing with the cancer and keeping up with your 2 little ones!!
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#148240 - 04/14/12 02:29 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: terrib]
Colette106 Offline
Member

Registered: 10/05/11
Posts: 7
Loc: Michigan
Hi Robin,

I admit I haven't posted here in a while but I saw your intro and I had to introduce myself. I was diagnosed just a couple days before you and underwent surgery 11/15/11. I am healing well, had clean nodes--well, to be honest, our situations sound incredibly similar (I am 29 and have twins that will be 6), and currently I'm just trying to get back to "normal."

Anyway, I just wanted to reach out to you and say hello. smile You'll be happy you found the board. Even though I didn't often post, I certainly visited on an almost daily basis when I first got diagnosed.

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#148250 - 04/14/12 08:34 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: Colette106]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9214
Loc: PA
Welcome to OCF! You have found the best place for getting info and support for anything related to oral cancer. Will you be having radiation or any further treatments?

We have several members who are younger survivors anf who have young children. My children were teenagers when I was first diagnosed. It was a teenagers dream, their mother losing her voice for a coupke weeks. LOL! It was temporary and they quickly learned to repond to my frantic arm waving and scribbling on a dry earase board 'NOOOO!!!!'. That was almost 5 years ago and life is much different now.

Best wishes with your continued recovery.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148266 - 04/14/12 01:47 PM Re: Hi, I'm Robin (survivor/mother of two) [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi there... And welcome! We've had similar cancers - I had one lymph node involved though (40 removed), and despite my dr. Being certain he'd got it all, and that in his very educated opinion I was cured, I still did radiation and chemo. That's a good bullet for your to have dodged! Do keep an eye on your neck and be diligent with getting to know your mouth. That way you can spot any changes immediately. smile

l know its a lot - but you'll get through it.. I'm not sure how much sensation etc, will return for your neck and face... Some for sure but it will likely never again be 100% maybe 90 - smile mine is still stiff and numb one year out - I go to acupuncture weekly and this has helped a lot! Mind you I had radiation to the tissue so this definitely makes a different. As time passes you will adjust... It's scary crap but there are a quite a few of us here! smile and a few your age - I'm a few years older, and lost a little less of my tongue... But it's still very similar. Take care and we're here to listen and help!
_________________________
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

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#148271 - 04/14/12 05:50 PM Re: Hi, I'm Robin (survivor/mother of two) [Re: Cheryld]
robindini Offline
Member

Registered: 04/14/12
Posts: 15
Loc: Connecticut
awesome! So impressed by the quick response. Very heart warming indeed to finally find someone who "gets it". I know that I am incredibly fortunate to have had the circumstances happen as they did. I am reminded of that everyday. I did lose 50% of my tongue but my doctor and friends continue to be amazed at how well my speech is. I hear a lisp and hang up on some words but to have gone through what I did and still be able to speak, amazing. So grateful.

It's such a weird pain to feel nerve sensation coming back in your mouth. The first few times I had spicy food was really interesting. Having a beer or wine was different wink I have to say the worst thing is my aversion to ice cream now. Ha! I ate so much of it before my diagnosis and after my biopsy and recovery that I hardly ever eat it anymore. Ha! I'm a huge ice cream fan so that's a shocker for me to admit.

I'm reading people's signatures and don't really know what all of the abbreviations mean but it's obvious you all went through quite a lot and I admire your strength through chemo and radiation. I really never went to "that place" when I was going through everything. I think that's where a lot of the fear rises from follow ups. I know that if I was ever to have a reoccurance that would probably be the first option but I try not to think about it.
_________________________
neg lesion biospy 1/2007; lesion found 3/2011; baby boy 5/3/2011; biopsy 10/2011; diag. 10/17/2011 T2,SCC tongue; 10/25/2011 part. glossectomy 50% tongue rmvd w/muscle; 11/29/2011 neck dis; HSP 12/3/2011 infection of incision; 12/5/2011 29 lymph nodes negative for cancer. No chemo/radiation.

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#148272 - 04/14/12 06:56 PM Re: Hi, I'm Robin (survivor/mother of two) [Re: robindini]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9214
Loc: PA
Robin here is a list of abbreviations. Aftr a few posts you will become a pro. The abbreviations you will pick up qickly.

OCF Abbreviations


Edited by ChristineB (04/14/12 06:57 PM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148287 - 04/15/12 12:54 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi again... You speech will continue to get better. My dr said I might have a lisp when I get tired. Personally I notice it but am very surprised when I leave a message and listen to it back and realize I sound normal! I do film work, and went for an audition last week, and got the job... It's scary because you're self conscious but sometimes it's without reason. missKate here lost her whole tongue and doing phenomenally well.
I love ice cream it's one of the few things with sugar I allow myself. It took a long time after radiation for my mouth to get accustomed to temperature. For a long time Luke warm was the only temp I could tolerate... But slowly things improve.

Good luck! You'll heal and eventually Things will return to normal.


Edited by Cheryld (04/15/12 12:54 AM)
_________________________
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

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#148289 - 04/15/12 01:25 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: Cheryld]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1350
Loc: Los Angeles
Robin, welcome. Compared to what you've been through my experience was a walk in the park. Congratulations on everything. I can't imagine how difficult it must have been with children that small, but you're handling it like a veteran.

I was so glad to read that the nodes were clear. Along with Christine I'm curious whether or not you'll be having any additional treatment. Please keep up updated as things go along.

You're one of my new heroes.
_________________________
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 7 years all clear in 6/16

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#148292 - 04/15/12 01:31 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: Cheryld]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Hi, Robin!

I read your post and thought that we practically went through the same exact experiences at nearly the same exact time!

I don't have a lot of time to respond to your post right now, but I will certainly be back to tell you more.

I was pregnant with my second child when I was diagnosed and had surgery. Were you pregnant at the time as well? Read my signature at the bottom of this post and you will see a "snapshot" of my experience.

I have gotten to know and have heard of many pregnant women getting this type of cancer who had no risk factors. There's got to be something there.

I'm so glad that you had clear nodes! I can totally relate to the emotional rollercoaster...we all can. We are just right along the same timeline! I look forward to getting to know you a bit more!

Please keep coming back!

Take 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.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#148294 - 04/15/12 01:33 AM Re: Hi, I'm Robin (survivor/mother of two) [Re: Kerri]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Oops, pardon me...we were slightly on different timelines, but so much is the same! 2011 was a blur for me...and not for good things, but all ended up well!
_________________________
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.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#148321 - 04/15/12 05:28 PM Re: Hi, I'm Robin (survivor/mother of two) [Re: Kerri]
robindini Offline
Member

Registered: 04/14/12
Posts: 15
Loc: Connecticut
Hi Kerri!

It's amazing finally connecting with people who "get it". This is so wonderful. I was pregnant when the bump showed up but wasn't diagnosed until 10/2011 and Sam was born in 5/2011. I had had a similar bump back in 12/2006 and it was removed in 1/2007 as benign.

Doctor can't determine the cause. I was a smoker back in high school but he said I would of had to smoke like a 60 year old man for life in order to get cancer like this. I tested negative for HPV. He said it could have been dental trauma but he thinks its just bad luck. There's no way to pinpoint cause. I think that's what makes the emotional healing process the hardest for me. Not knowing why.

It was tough with a new baby. I had just been diagnosed to PPD and was feeling like my life was in total chaos so to be broadsided with this...I think I always knew it was cancer. I just kept pushing it off because there was no time to take care of me. I had a new baby at home, a two year old, my business (it was peak wedding season and I'm a wedding photographer).

But everything happens for a reason and when I finally had my biopsy done, I knew something was wrong. The doctor wasn't able to numb my tongue. The novacaine didn't work and he tried 8 shots of it. I felt every cut and stitch...worst pain of my life. He also had another surgeon come in and look at it and there was worry in their eyes that told me something was up. I drove myself home that day I just cried my eyes out in pain and in total fear of what was happening. I didn't get my results right away and went to my naturopathic doctor and she called and got the results for me and told me when I went in to see for her pain management. Thankfully my husband and two boys came with me that day for the ride. If I had gotten the new by myself I don't know what I would have done.

The more you talk about it...the more you relive it...the more it starts to really feel real.
_________________________
neg lesion biospy 1/2007; lesion found 3/2011; baby boy 5/3/2011; biopsy 10/2011; diag. 10/17/2011 T2,SCC tongue; 10/25/2011 part. glossectomy 50% tongue rmvd w/muscle; 11/29/2011 neck dis; HSP 12/3/2011 infection of incision; 12/5/2011 29 lymph nodes negative for cancer. No chemo/radiation.

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#148478 - 04/18/12 07:06 PM Re: Hi, I'm Robin (survivor/mother of two) [Re: Kerri]
ESikon Offline
Platinum Member (300+ posts)

Registered: 06/22/09
Posts: 440
Loc: Texas
Hi Robin!

Welcome to OCF! So glad you are here, there are so many wonderful people here at OCF. Please feel free to ask any questions you may have.

I was a young mother of 3 when I was diagnosed. At the time, I was 28 and my children were 6months, 2.5 and 4.5 years old. I am now 3 years out since diagnosis. Your children will be your inspiration to keep going and enjoy life to the fullest! I'm glad you are healthy and recovering.

_________________________
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk

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