| | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | sorry to hear of your diagnosis. so happy for you with the wedding coming etc. this will give you something to take your mind off the bad you have gone thru and keep you busy with happy times! I hope for you that you enjoy the rest of life without further problems once you get rid of this pain issue. Worry is common but a waste of life so try not to do it anymore than you have to... focus on life and living it with those you love.  I wish you the very best in life.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you all for your comments. It seems I should explain a bit more. My 4 surgeries started in March 2007. My first biopsy was done by an oral surgeon and the results were dysplasia. He sent me to an surgical oncologist. I met him in April 2007 and had my second surgery in April 2007. That is when the cancer diagnosis came. Then I had PET scans done every 3 months and they were always clear. I still had some white spots appear on my tongue so my doc wanted to do surgery and biopsy them. That occued in May 2007 and July 2008. Those biopsies were not cancer.I have since changed doctors b/c I had a bad experience with the first doc I went to. I never worried when I was going through the treatment and testing. I still have pain on my tongue but my new doc is not too concerned. I find this time in my life to be the hardest.
I'm hoping with time I will start to feel like the Suzie I used ot be.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Christine,
I live in Burlington County. I just moved here when I got engaged. Where did you live?
Seeing a therapist has been great. She is so helpful. One day I took all my pain meds and smashed them..lol everytime I saw them I went back to that time in my life. Crushing that and getting rid of them was very theraputic!! They have given me meds for my anxiety and honeslty I was not too happy about it. But the more I talk to others I realize I'm not the only one.
I just joined this forum last night and I already feel better:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I grew up in Leonia in Bergen County.
I had 15 years! (1990-2005) of biopsies without cancer, just a mix of hyperkeratosis, parakeratosis, dysplasia, hyperdysplasia and leukoplakia before an SCC tumor finally sprouted at the site being biopsied.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | thanks for explaining - that is why the confusion by some, as to why 4 surgeries ... but you are counting biopsies as surgeries, correct? your surgeries have all been biopsies thus far?
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | If the test show no cancer, It was well worth it to have them done. I wish a few of mine came back negative. I supposedly have the OC whipped for now. Welcome to our home that has all friendly people in it and all are helpful.Susie, you will be fine . You sound like a fighter.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I am counting the biopsies as surgeries. I know I am lucky as far as oral cancer is concerned, but I'm still pretty scared. I wish there was a way to determine if the irritated tongue is cancer without a knife:)I try to be stong and fight but once in a while it gets very hard.
My doctor has told me to let her know if I have any ear and/or throat pain. Once in a while my ear hurts so I did let her know. When my appointment came around the pain had left. Now it's back. Does anyone know about this? Had anyone had ear pain that turned into something more?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I would also like to know that answer. I have off and on ear aches too. I am attributing it to healing and was not told what to look out for as being odd. Thanks for asking that question. Inquiry minds do want to know.
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im geographically challenged, so I appologize in advance. Is Burlington county towards the shore? South Jersey?
I grew up in Warren county, very close to Hunterdon county a very very small town of about 100 called Finesville. Im now in Lehighton PA which is about 45 min. from NJ. Where I live is considered the southern Pocono's, if you have heard of that. There are several active members who live in NJ.
There are also some events being planned for next year in NY and in PA (not sure about NJ), which you may be interested in attending. Its amazing how much better you feel just be meeting other oral cancer survivors in person. When I met some, I cried out of sheer releif that I wasnt alone in my suffering anymore. I actually now knew in person live people who understood how bad it can be. By the time these events take place, you may be up to going and meeting some OCF members in person.
Im not sure if I understand your post. You said that you had counted your biopsies as surgery? If you have SCC stage 1, how was this treated? Biopsies only confirm it is cancerous. The PET scan will help to stage how far it is advanced. Sorry to sound dumb, just trying to understand how you are being treated.
Glad you are feeling better now that you found OCF. It does take a huge burden off your shoulders just knowing there are so many others out there who have been where you are.
ChristineSCC 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 | | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Christine,
As you know the Delaware River separates PA & NJ. Burlington county is below the big bend of the River causing the indent in New Jersey's western coastline. Burlington is just below that bend. Not being from NJ I would consider that to be the Northern end of South Jersey, but I would guess some would call it central Jersey. The closest members to Suzanne are probably Eileeen in Trenton and DonnaRose and me in Yardley.
Suzanne,
It might better to clarify your signature to indicate that you had a biopsy followed by surgery and then 3 follow-up biopsies. Although biopsies are surgical procedures and can be painful for a time after they are done, we generally don't put biopsies in the same category as the glossectomy itself. I think this is why some members, including me, have been confused by the 4 surgeries. Please let me know if there is anything that I can do for you being that we live so close.
I hope this has been helpful to you two.
Jerry
PS I know that Susan Lauria is planning a second walk in the fall for David and the one in NYC in April and the one that Eva is setting up for May, might do doable for you, Suzanne.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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