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Joined: Jun 2013
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Joined: Jun 2013
Posts: 262
#1 on my list is mind-over-carcinoma, as in: "You can beat this with the right attitude."

Really? So if I don't beat it, my attitude's the cause?

Don't get me wrong, I'm brewing up some good feisty attitude. It will help me endure the extreme physical testing and losses of treatment. It will spur me to fight as hard as I can for my life. And it will help me find the good days and moments despite it all.

But save me? No, that's down to luck and medical talent, not attitude. Whenever well meaning folk tell me it's all up to attitude, it feels as though they're blaming everyone who's lost the battle to cancer, including my parents.

What do you hate to hear? Please don't leave me alone with my rant smile

Mama


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: May 2006
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You're not alone. The thread was started four years ago and continued over almost 50 pages!


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Whatever the "NOT what to say" to an OC survivor can depend on the mindset of the survivor at the particular moment of the verbal exchange and the reaction to it can change at any day or moment. Early in my son's Tx, as he walked out from the Rad room, I cheerily said, Yay! only 33 more to go! That upset him so much, I never commented again about how many more treatments he had to endure. Then, when he only had a few more Tx to go, he himself cheerily brought up how few more treatments he had to go. In addition, the message sent is not always the message received. The one making the not-well-received comment, may have the best of intentions, only wanting to help, to encourage but not having had the same experience cannot possibly know the brutality of the Tx the survivor is experiencing nor the level of his/her depression which in itself can only be improved in very small steps. Seems to me that the well-meaning commenter is the one who is better able to take a cue from what the OC survivor likes or doesn't like about any message he/she receives. The OC survivor has too much to deal with already in just surviving, to think about "attitude" but if he/she can be helped to find something, even a very small sign of progress in recovery, it may help.

Mamacita - I like your feisty attitude - it shows you are taking control in surviving whatrever life throws at you!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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I agree with you Mama. Save the rah, rah. If attitude matters that much, few of us would get cancer, could cure themselves by just wishing cancer away nor would we die, especially at young ages. It's our genes that matters, health care, diet, lifestyle, luck, karma, depending on ones beliefs. Hope, and doing the best you can, may be different. My doctor said I'm like a cat with nine lives, and I hope it's 10.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 945
People are also apt to say really stupid things to the caregivers of survivors. On our vacation, one of our doctor friends told me that my husband did not look as good this year as he did last. As he was coming down with a summer cold, that was likely true, but it effectively ruined the whole vacation for me. Now I have to decide whether to write him a letter or direct him to this site.

Anyway, rants welcome here!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Aug 2013
Posts: 144
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Joined: Aug 2013
Posts: 144
Well I surely don't like it when people tell my that ill back to normal in no time. I will never be back to normal even if the surgery is a resounding success I will not be "back to normal".


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
Joined: May 2013
Posts: 134
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Joined: May 2013
Posts: 134
A lady at church asked how I was doing mid-treatment. I told her I was doing surprisingly well. She told me not to worry, it was going to get much worse. I laughed out loud but it sure PO'd my wife!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Sep 2011
Posts: 61
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Posts: 61
Had a lady at church tell me "you don't look like you feel good" soon after my radiation treatments. It upset me so much! I stopped attending that church.


Do not go gentle into that good night. Rage, rage against the dying of the light.

31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
Joined: Sep 2012
Posts: 381
"OCF Canuck"
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"OCF Canuck"
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Joined: Sep 2012
Posts: 381
I was at court the other day (I'm a lawyer), after just having some laser treatment which results in bleeding and bruising around my neck scars...I got back to my office and already people were calling my partners (notably not me) to see if I was ok, because I "didn't look good". Apparently the rumors were flying for a second time that I was dying...

I then, same day, went into the store in our building and the counter person said "whoa - battle scars". I smiled and said "cancer", and she was speechless, then wished me the best.

At this point, all I can do is shrug and let it slide off. The people that matter know the drill, and that's all that matters anyway.

For the most part people don't mean to be insensitive - it's kind of like asking the overweight woman when she's due to give birth. People are just dumb sometimes.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Mar 2013
Posts: 421
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Posts: 421
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"Heck of a way to lose weight isn't it?"

Love that one!

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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