Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#88760 01-23-2009 06:33 PM
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
OP Offline
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:)
suzanne98 #88762 01-23-2009 07:15 PM
Joined: Mar 2003
Posts: 1,384
Likes: 1
Patient Advocate (1000+ posts)
Offline
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.
Mark #88768 01-23-2009 08:00 PM
Joined: Aug 2008
Posts: 113
Senior Member (100+ posts)
Offline
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)
Offline
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
Good1 #88790 01-24-2009 05:48 AM
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
OP Offline
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:)
suzanne98 #88951 01-26-2009 02:36 PM
Joined: Dec 2008
Posts: 16
Member
Offline
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 :-)
12thofnever #89032 01-27-2009 07:03 PM
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
OP Offline
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:)
suzanne98 #89036 01-27-2009 07:19 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
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.


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
ChristineB #89056 01-28-2009 06:37 AM
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
OP Offline
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:)
suzanne98 #89057 01-28-2009 06:50 AM
Joined: Aug 2008
Posts: 716
"Above & Beyond" Member (500+ posts)
Offline
"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
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5