#88760 01-23-2009 06:33 PM | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi all,
I went for my biopsy results with the doctor today and was told I have to have surgery again. I'm prety bummed about this news. My partial glossectomy will be about 1 month before my wedding. Talk about stressful. My doctor said the results of the biopsy were severe dysplasia. With my history she thinks it will turn to cancer and better to remove now.
These surgeries are starting to get to me. This will be my 4th in about 2 years. If anyone has any suggestions on thier experience with this many surgeries. My doc says I am not a candidate for chemo or radiation at this time.
Last edited by suzanne98; 01-23-2009 06:34 PM.
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: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Suzanne, do you think it is time to get additional opinions?
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 113 | Suzanne. Sorry to hear all that you are going through and also with your wedding coming up soon. I would certainly get another opinion soon. Hang in there, but do get another opinion..
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Suzanne
What a stressful event so close to your wedding!! It really can't hurt to get another opinion and you may find that there is another option or you will be more comfortable with this option. Good luck dear.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | This doctor is my second opinion but I know only 2 opinions is not always enough.
I do have another question. This will be my first surgery with this doctor. The other 3 were done by another who I decided to leave. My doc explained what she is going to do and it sounds different from what my first doc did. She will take more of the top layer ie..more dysplasia instead of more muscle. Does anyone think a different technique of surgery will possible provide a different outcome?
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: 16 Member | Member Joined: Dec 2008 Posts: 16 | Oh Suzanne,
I am so very sorry. I came across your post and felt so bad when I read that you have to have surgery "again" and right before your wedding! Timing certainly couldn't be worse for you. You are also very young to have this kind of cancer. This should be one of the most carefree and happy times of your life. Surely a lot of your joy has turned to stress having to go through the surgery and all. I LOVE weddings and would love to hear about yours....details details. Nothing about it would bore me. :-)
My husband is in stage 4C, the last stage of the last stage and he was "just diagnosed October 28, 2008". He never smoked or drank in his lifetime. Oncologist hasn't given him much time and my heart is broken. He says my husband has only months to maybe 24 months, IF he can beat all the odds against him. Certainly doesn't give us much hope. I can't imagine my life without him in it. We've been married 38 years this June 12th. I'll be anxious to see your updates.
All the best to you Brenda smith
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Brenda,
I am so sorry for what you are going through. That is just terrible. Have you gone for other opinions? Please feel free to send me PM so we can talk more. I always have an ear for venting. We all need to do it!!
You are right...the timing for my surgery could not be worse. But sister and best friend have been great about helping me get things get done. Ray (my fiancee) has been great too. I'm a lucky girl. That is one thing that cancer had me to learn...I appreciate everything now.
I look forward to talking with you. I will let you know about my wedding plans...you don't have to ask me twice!!!
Suzanne
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Suzanne:
I have an excellent ENT in Allentown. This doc has treated many oral cancer patients. He has a wonderful reputation. He is the doctor of some other OCF members too. If you would like to schedule an appointment with him, it wouldnt hurt to take a ride up here. Just let me know and I will pass on his name and number. 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Thank you Christine. I will let you know:)
Suzanne
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: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Suzanne,
Where are you being treated again?
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Jan 2009 Posts: 11 Member | Member Joined: Jan 2009 Posts: 11 | Hey Suzanne, I'm sorry to hear about another surgery. I can kinda relate. I am getting ready for my third. It's so depressing going through the steps to only find out that you have to do it again. I got two opinions and both suggested biopsy and surgery. Have you had a biopsy yet? I hope it all goes well. Keep us updated.
SCC tongue stage 3. 43 nodes clear. Surgery in 1996. 2nd surgery (cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2006 Posts: 114 | Wow, sorry to hear about another surgery to go through. Lots of thoughts and prayers being sent your way. -Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Wow. And I thought that I had bad timing! But, having said that I am glad that you are receiving prompt treatment and some day this "challenge" a month before your wedding will become one of the wierd special stories you share about your wedding day.
Good luck with wedding plans and simultaneous surgery plans!
You'll get it through it.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Fox Chase...any thoughts on that?
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 | This will make for a good story about my wedding day...that's for sure!!
Jbabb...I'm so sorry to hear you are in the same position. It really stinks, doesn't it? You will be in my thoughts. I wish you much luck and hopfully a speedy recovery. Here's to the Ensure!!!
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Suzanne when is your surgery next month?
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Patty,
My surgery is on 2/11/09
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Thanks Suzanne, I just want to know when to give you that extra bit of pointer zen from all my furkids so that things will go smoothly for you. Thinking of you and hoping for the best.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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