#86192 12-16-2008 07:14 AM | 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 | I had a chill of recognition reading this article on lung cancer. The subject line says it all. Sympathy stained with Blame Oral cancer evokes the same response of Sympathy Stained With Blame It's bad enough to have everyone immediately blurt out: Oh you smoked with the implications spelled out in the newspaper article. If and when the HPV connection reaches critical mass, I wonder if we will still be judged so harshly - just on a different basis.
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 | Believe me I have already had people respond back to me that "I deserved what I got" meaning that they assumed that I was some sex slut that did everyone I could without regard to God's wishes.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | It's really sad how judgemental people can be. I do have to say though that before this happened to my husband, the first thing I asked when told about a cancer diagnosis is if the person smoked. Like that makes any difference to the people who are dealing with this dragon. I have truly learned so much-not all bad. I hope this whole experience will make me a much more caring and sympathetic person. I never even imagined all the crap people with cancer and their loved ones go through. From the emotional to the financial this is HELL on everyone involved but I have "met" some incredible people and have found strength from people who I've never even seen face to face. I've also learned who my real friends are and don't spend any more time on those who are useless. You really do find out who your friends are when the chips are down. Anyway, I digress.
Sue
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | That explains a lot David ha ha!
I have oncology nurses ask me with every visit whether I smoke or not and it's clearly in my chart that I don't. Some people may be mean spirited about this but I suspect that many are merely curious.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | RE: the misplaced judgement from some people. Even my husband was asked by his doctor, after his second or so treatment, "are you going to stop smoking now?" We had to repeat "He NEVER smoked". We tend to "package" our explanations to people who are hearing about the cancer the first time with those disclaimers, to cut their "thoughts" off at the stem. Cancer is ugly, no matter how we live our lives. Empathy and kindness is called for in all cases. Merry Christmas and Good News to all in 2009. Jane
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Us ex smokers must have a big X right in the middle of our chests. It makes me mad when the Drs ask if I still smoke. Damn, they have noses and sure don't smell cigarettes on me. I just tell them to come close and breathe deep then give me their opinion
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: Oct 2008 Posts: 8 Member | | Member
Joined: Oct 2008 Posts: 8 | I used to think they should give lollipops or gold stars when I could answer "non-smoker" at checkups. Now I just want to punch (not that I would ever!) people when they say, "oh, was he a smoker?" for the implication that this is somehow his fault. And no, he is the antithesis of all the risk factors... but that doesn't matter, does it?!
Though it does feel a bit ironic to see the 70 year old man down the street sitting on his porch smoking a pipe. Neither Adam or I can resist muttering to each other, "do you know that will give you oral cancer?" as we drive by.
--Di
Di CG to husband, Adam (30 yrs old). SCC of left anterior tongue, T1N0M0. DX 10/27/08. Partial glossectomy 11/5/08. Carboplatin/Taxol (x3) begins 12/17/08. Radiation (x35) concurrent w/ Cisplatin/Erbitux to begin in January. And raising a 3.5 year old daughter! Yikes!
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | I had an experience last night like that! I went out to dinner with my husband and one of his clients and her husband. She is a smoker
and she asked me how I quit smoking?? She looked at me and I quess
she has been wanting to quit and looking at me made it worse on her. She just told me she did not want to talk on the subject any more. Rudely. I never brought it up to begin with.
I just told her it was good to be alive and changed subjects quick. The rest of the night was really hard to keep up conversation. I don't understand how some people can be so cruel to others.
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You did good Bebbie I would say. Few words and it sunk in her head maybe.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Well David, if the shoe...LOL...just kiddin'...
I had people that I don't know tell me to stop smoking...
Okay, and let me dump all of my unopened booze down the drain right after I cut up all the cigs that I don't have...
I wish I knew what caused my cancer...I would rather know then not know what did it...Why don't they investigate a little more into the causes? I know--time and money.
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
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