| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Barb,
So sorry you had to join this club. I like Eric, had a hard time telling my kids. Once I did they were able to ask questions and we were able to celebreate the last day of treatment today. Please keep us updated and do let your kids know what is going on. It will be hard, but it will be easier for them to understand what is going on if they know.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | My surgeon looked like Andre Agassi!
After a multi-disciplinary team looked at me and made a team decision I didn't ask for a second opinion. However, things are different in NZ where there is less choice.
I had the wrist thing and was in hospital for 2 - 3 weeks. It took so long because my tongue took a while to heal enough for me to practise drinking and eating. It drove me mad being in a ward so long but in the last week I was able to go over to the cancer hostel my husband was staying in - a huge relief.
As soon as they took the trachie out I could speak intelligibly. There was a rapid improvement after that - same with my swallowing. I had a lot of tongue out and I'm still waiting for the flap to go down. I'm three to four months out and expect a good outcome eventually.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | Welcome to this group. Sorry you have to join us - but still welcome. All I can add to what everyone else has said is to eat, eat, eat, eat, eat, what ever you want. Don't worry about bad sugars vs good sugars. Just eat anything and everything you want. And as far your children go - I think you will be surprised at how well they understand and will rise to help you. May I suggest you purchase a bicycle horn. I had one at home and one at work. After I lost my voice I used it to summons my family and co-workers. We still get some good laughs about that horn now. Good Luck
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Jan 2010 Posts: 15 Member | | Member
Joined: Jan 2010 Posts: 15 | Welcome Barb. I have tonsil cancer, not tongue cancer, so I can't offer any wisdom or experience with the procedure you are about to undergo. However, I love your positive attitude - humor I think will go a long way in helping you keep it throughout your journey. I don't have any kids but did find it difficult to break the news to my cats  They took it better than my husband did ! Anyway, just wanted to add my welcome; I have found this site to be an invaluable support tool so far. I start my chemo/rad treatments on 2/8 and take comfort that the folks here will hear me. Chris
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Alpaca . you sure have a good positive outlook which is needed for this nasty stuff. Ihave a good feeling for you and your toughness.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Barb,, welcome to our home and a lot of good friends with great advice. I did notice that your Dr isn't bad to look at either. LOL You ladies are worse than we guys. You have a great attitude and will beat this. The worse part is the wondering how long for things. Time goes by a lot faster than one would think tho. I wore my at home clothes in the bed after I was awake enough to put them on. Good luck lady and keep up with the positive outlook on things, It makes a difference. Heck, I was walking the halls more than in the room.
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | lol...i had been puzzled about the "young/old fracks" also, but made my own assumption of what it meant...turns out i was right  . welcome to the forum. i dont have "little" ones, my youngest is 17 but it is always hard to tell them about the c word. just find a way that they can understand it. good luck in your treatment and keep us posted.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Barb,
Welcome to OCF. I'm happy that you found this site so early on in your journey, it will help you.
My cancer was also on my tongue, on the right side. I've had 4 partial glossectomies. I won't lie, they are painful. Eating is virtually impossible for the first week at least. But...you will get through it. Plus you have a wonderful attitude and outlook and that is more than half the battle. I'm happy that you already feel that way.
I would suggest at least going for a second opinion. Where in Colorado are you? I have an aunt who lives out there and she was a nurse at a cancer center here in PA. I'm sure she would have some good suggestions if you would like me to ask her, just let me know.
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: Feb 2010 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Feb 2010 Posts: 38 | Hi, I'm back. I have been busy with life, but needed to check back with all of you for feedback from last replies. I just want to thank all of you for answering my questions and providing me with support. I am scheduled for surgery on Monday, March 8th and I am a little scared. My mom and dad are coming from Florida and my 12 year old daughter has made me "pinky swear" that I will not die on the table.
Many of you suggested that I get a second opinion, but I just feel "right" about my doctor, Chris Oliver from Swedish Hospital in Denver.
My parents belong to a Unitarian Church in Ormond Beach, Florida, and the outpouring of support from the congregation has been incredible. My mom's friend from Iman even sent me some Frankincense. My doctor's teammate, Dr. Imola, will help him with my surgery, without payment because his practice does not accept my insurance. Tears of gratitude and joy, glisten on my face, even as I type. There is a Buddhist group who have kept me in their daily prayers. Wow, the love I am recieving is glorious. I know everything will be o.k.
Barb
Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!
"Get outside every day. Miracles are waiting everywhere."
| | | | | Joined: Feb 2010 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2010 Posts: 28 | Hi Barb,
I'm sending my love and best wishes as well.It sounds like you are in good hands with the surgeon you have.
Best Wishes for a speedy recovery.
David(UK)
Mri on pituitary - incidental mid line tongue lesion found
Referred to ENT surgeon
Suspects Lingual Thyroid sent for 123 iodine scan - said dont need surgery or biopsy.
Follow up:Not a lingual thyroid, now have to have a tongue biopsy on Monday 15th March 2010.
Get the results Monday 30th March 2010
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
