| | 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 am struck by how many guys like myself have major PEGAPHOBIA. None of the female cancer patients and certainly very few of the female caregivers express any concern about getting a PEG. Yet, I know that I was insanely opposed to getting a PEG. And yes, I believe that every male poster on OCF who got through TX without a PEG has swarded himself a mental medal.
This observation is based on reading hundreds of posts on the PEG here at the OCF forum. I know that when I failed my first MBS after surgery which meant that I needed a PEG, it was only the fourth time in 62 years that I ever cried in public (the other three were the funerals of my little brother, father & mother). I know all the psychological pain a PEG has cost me and why I rejoiced the first year in avoiding it. What I don't know is if this is somehow testosterone based. So were there any female die hard objectors to a PEG?
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 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Charm,
When I had the dreaded first discussion with the RO concerning my treatment he left it up to his female nurse to very sternly impress upon me the importance of the PEG and how much it would be needed if things did not go exactly right. She gave me quite a talking to.
On my way out the male nurse that accompanied her and had held his tongue during the whole encounter approached me and said very matter of factley that if it were him he would also reject the PEG but it would be the wrong decision. Then he tried to tell me I should get it.
Seems this male Pegaphobia extends to the nursing staff as well.
Kelly
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Charm, Steve didn't want the peg, hated it when he got it and still hates it to this day. Must be a male thing.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | Actually the main reason I did not get teh PEG was that my wife absolutly freaked out when the MO suggested it. I think it was too much an outward sign that something was wrong with me.
Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | I actually didn't think a thing about it. ALL of the doctors I talked to said definitely get it, so it was a non-issue....
Just not a big deal....
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | Joined: Aug 2009 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2009 Posts: 32 | I certainly awarded myself a medal for getting through without a peg! My oncologist advised against getting one because he didn't want me to become reliant on it, my radiologist felt passionately that I get one. My rad and I made a deal that if I lost 10% of my body weight I would get one. I lost more than 10% but I would load down my pockets and took to even wearing boots to boost my weight! After treatment was finished, and I didn't care what my weight was, I hopped on the scale and my rad almost fainted because I had lost so much weight. He wanted to put a peg in after all my treatments and I had to break it to him that there was no way in hell that was happening.
Kevin, I'm a Memphian also. Had my rad at Baptist east and chemo at West Clinic. Curious if we share any Doctors. Lawson is my oncologist and Marks was rad.
George
Last edited by brickster; 11-19-2009 08:27 AM.
Dx 8.14.08. 42 at diagnosis. Stage IV Tonsil. Tonsillectomy 8.25.08. Induction chemo (9.29.08) (taxol and carboplatin) 5 weekly treatments. 35 rad and 6 concurrent chemos. Finished 12.22.08. No peg, no port. Neck dissection Feb. 09
| | | | | 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 | George
Great to hear that our strategies were so similar. I also wore my Danner Telson Scorpion class boots and put weights in my vest pockets and clipped on my Blackberry and cell phones for the scales to hide my weight loss of over 20%. Wear your medal proudly. You earned it.
Last edited by Charm2017; 11-19-2009 09:59 AM. Reason: typos
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 2009 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2009 Posts: 60 | I'm so glad to hear I was not the only one to wear heavy boots to the Dr's office.
Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | | 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 | Charm, I absolutely hate the PEG tube. Even though I understand I must have it, just like when I first got it, I still hate it. The pegophobia isnt just a male thing.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | The only reason I did not get a PEG was that that was the only control I had over what was happening to me!! No medals were rewarded as I have enough from Uncle Sam. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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