#88018 01-14-2009 07:45 AM | Joined: Jan 2009 Posts: 10 Member | OP  Member
Joined: Jan 2009 Posts: 10 | Hi, I have just joined this forum, so am unsure if am posting in the right place. My mother was diagnosed with base tongue cancer in Nov 08 which was missed by the hospital in Apr 08. She underwent free flap tongue reconstruction in Dec 08 along with removal of 31 lymph nodes of which 21 tested positive for cancer. She is due to undergo 6 wks of radiotherapy in 2 wks time, but another lymph node is already enlarged. I know head and neck cancers are the worst, and reading this forum has made me more aware of just how many of you are going through this and worse. Right now I am so scared she will not beat this thing, and am trying to stay positive.
Mum: rare muco epidermoid carcinoma of left tongue base. Partial glossectomy with radial free flap reconstruction, left modified neck dissection, tracheostomy. Due to undergo radiotherapy.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Hello and welcome to the site and so sorry to hear about your mom. It is such a hard time and never easy to deal with cancer. I myself have not had radiation but I have had surgery and nodes removed. It is natural that you are scared but I want to try to ease your mind a bit that you have found a wonderful place for information and support! Since I have found a home here I have made many friends who are quickly becoming my extended family. So feel free to ask, vent and/or celebrate!!! We are here for what ever you need. There will no doubt be a great deal of support for you. (probably before I finish writing this to post cause it takes me so long to write something) Looking forward to hearing from you again.
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: Jan 2009 Posts: 11 Member | | Member
Joined: Jan 2009 Posts: 11 | From one new member to another, "Hello, and my best wishes to your family."
SCC tongue stage 3. 43 nodes clear.
Surgery in 1996. 2nd surgery
(cancer) 2008. 3rd surgery will be in Feb 2009.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Hello Zahra,
I'm sorry that your mother is going through this...Is she being treated at a cancer center? Is she getting chemo on top of radiation?
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: 10 Member | | OP Member
Joined: Jan 2009 Posts: 10 | I was interested to hear your story, years wondering what was going on, that must be awful. Thanks for replying to my post, I am a newcomer, felt terrible today and feel better already when I read stuff on here - people with this cancer are the bravest people ever - after what I see my mum went through, and I see many of you have done that over! Life is precious!
Mum: rare muco epidermoid carcinoma of left tongue base. Partial glossectomy with radial free flap reconstruction, left modified neck dissection, tracheostomy. Due to undergo radiotherapy.
| | | | | Joined: Jan 2009 Posts: 10 Member | | OP Member
Joined: Jan 2009 Posts: 10 | In the UK the surgeons did the op, now oncologists are planning her radiotherapy, they said initially that she would have 6 wks radiotherapy and 1 day a week chemo then they said that chemo was not required, so its just radiotherapy. She should have been diagnosed in May, but legally we have to prove the outcome would have been different to support a medical negligence case!
Mum: rare muco epidermoid carcinoma of left tongue base. Partial glossectomy with radial free flap reconstruction, left modified neck dissection, tracheostomy. Due to undergo radiotherapy.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Zahra,
Liz, also from the UK, knows all about the proof needed to claim malpractice and maybe she will share her thoughts with you but I still don't understand the reason NOT to add chemo to the Tx. With that many nodes testing positive it would be criminal not to use chemo concurrent with the rad.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Zahra,
Welcome to OCF. This site provides much support, I'm just sorry you have to be here. Good luck to you and your mother.
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: 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 | Zahra:
Welcome to OCF. Hope you will find all the help and support you as a caregiver need. There is alot of info both on the main site and also here on the forum. There is a search function available on both areas too.
Im sorry to hear that your mother may be a victim of not just cancer but possibly doctors too. One positive thought, you still have your mom, she has survived a very deadly form of cancer. As you will see, there are many survivors and many stories here that will help you to understand what your mom is going thru.
I know you are scared, but do know that you will have lots of support from people who have gone thru this both as patients and caregivers. This group understands your fears and will try to assist you with answers to questions and moral support.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Zahra
Sorry that your mom's cancer brought you here, but welcome to the site. You will find lots of support and and information here. I'm sure that you are frightened and so is your mom. Try to stay positive and be strong.
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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