| 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 | Oh Boy. Even well intentioned people stick their foot in it - sometimes repeatedly. To be charitable (and it IS Sunday), we shall assume that she was looking for some bright spot in your situation to comment on and that was the best that her feeble little brain could come up with - bless her heart! (I learned the"bless her heart" thing from some Okla friends. You can say whatever nasty thing you want about someone so long as somewhere in the sentence you state "Well bless his/her heart....") Gotta luv those Okies!!
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: Jun 2009 Posts: 138 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | She sounds like people who tell little kids how "fun" it's going to be to get their tonsils out and have ice cream. My friend told me she wished she could lose weight as "easy" as I'm going to be doing.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Yeah, I sure do love those okies, maybe cause I AM ONE! Now about the weight loss thing, someone asked me how much I lost and that I look good. She wanted to know my trick. I told her just get part of her tongue cut off and she would have no problem losing weight. Her reaction alone made me start laughing. ANother person, said hey look on the bright side you can lose weight. I did not want to do it this way. I have another funny to tell you. Actually it ended well, but I was ticked. As many of you know I have been having nothing but problems with this PEG and haave a hard time getting up and down and I am really bloated with it. Well, one day a nice older gentleman asked me when my baby was due. I told him I was not pregnant. I did go on to tell him what was going on and he immediately stopped what he was doing and prayed for me. That was a surprise.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Ahhhh!!! People can be so annoying!!! I also had someone tell me I was lucky to lose the weight. So I had...."I have cancer. Are you still jealous of the weight loss plan?" They shut up real quick. Angelina....you have had 2 annoying incidnets. I hope you run into less of them...especially the lady at church..the poor thing. You can't say anything to her:)
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I was checking in for cehom yesterday and the receptionist was giving me a tour and showing be all the books. The took me over the breast cancer section it was a huge section, I felt little slighted. I said "I do not them I have oral cancer." She said, :be glad you do not have breast cancer." WHOA. Have cancer is bad enough, but being told to be a happy about not having cancer that may not hinder my ability to eay. They did not very much stuff on Oral cancer at all. I did get a book about head and neck cancer.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | That must have been a kick in the butt! ANY cancer is horrible. Personally I'm so sick and tired of all the press given to breast cancer. Granted, any light shown on cancer at all benefits patients but it is so sad to see a cancer that so drastically alters a persons life being swept to the side. I take any chance I get to enlighten people on the subject. Maybe someday it will be taken seriously enough to warrent better screening procedures.
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | I wonder if we'll ever stop worshiping The Breast. I mean, losing any part of the body is devastating, but I'd trade a chunk of my breast to get my fully functioning/tasting tongue back any day of the week!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia & SueMarie & Margaret
I hear you. Obviously as a guy, I don't get these odious comparisons about breast cancer, but I do get the exact same thing about Prostate cancer. Cancer of the tongue is the Rodney Dangerfield of Cancers: we get no respect. Charm
Last edited by Charm2017; 12-01-2009 06:42 AM. Reason: typo
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | 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 | [quote=margaret_in_ma]I wonder if we'll ever stop worshiping The Breast.
I would have to vote NO to that question!!
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | I've had breast, oral and renal cancer as well as basal cell carcinomas, one benign and one small malignancy not deep with a good area of safe margins removed. On my last colonoscopy the Dr. removed polyps which could posssibly have developed into worse. I take medication for acid reflux which if untreated could lead to cancer of th esophagus.
There is no "better" or "worse" cancer. All are awful and potentially deadly - some quicker or causing more suffering than others. Even a small benign skin cancer is frightening - I refused dental x-rays for years after mine was removed. All treatment surgical, chemical, and radiolical has risks from minor scarring and temporary inconvieniece to possible life-long afteraffects. Every procedure, treatment and medication carries it's own particular risks includinng leading to further problems, not working and even being potentially lethal.
The emotional and psychological toll of cancer affects many - patient,care takers, family, friends, co-workers, medical personnel working in the field. These affects can linger for years and are often unacknowledged.
Thank G-d today much progress has been and continues to be made in identifying causes, detection, prevention and treatment of many cancers. As Brian has shown us, those of us who have been affected have an obligation to do as much as we can to emotionally support others, promote awareness, increase knowledge and do whatever it takes to fight the battle. Our first instinct and obligation is to fight for the cause which has affected us personally but just as one soldier or regiment can win or lose a battle, a general attact on all fronts by all forces is vital to win a war.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
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