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?

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

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.

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.

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....

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

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.

I'm so glad to hear I was not the only one to wear heavy boots to the Dr's office.

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.

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

Guys,

it might be funny in retrospect, but really how smart is it when you actively deceive your medical team? You are providing them with incorrect information which is in part used to monitor/alter your treatment. Sure the PEG sucks but it really is not a big deal.

Well, I did get the PEG, but I hate it. I wish they would take it out. It is a psychological issue for me as well. I love to eat and the thought that i need this because I may notg et to eat in freaking me out. Anyway, I thought about rejecting it, but reading everyone's story on here, I decided that it was in my best interest to get it.

Bob

Although I was not a Marine, I did run with the Corps 4 times in the Marine Corps Marathon (the People's Race). I proudly sport my MCM emblems on my water bottle and my wife was so tired of my wearing my MCM T-shirts that she made them into a Quilt !!
You have hit the nail on the head brother. Us alpha males do not ever get a PEG if we can help it in any way as it is the one and only thing we can control. I have to tell you that passing the true Marines in the marathon was a real validation of who I am. Guys like me never got real medals so we made do with our imaginary PEG resisters medals. (Tip of the hat to Slim aka Wanda who first posted that there were no medals for us PEG resisters but did not fully appreciate the capacity of the male of the species to deceive itself plus award imaginary medals when we do something uber male like crush our doctors)
Semper Fi indeed.

Markus

I respectfully disagree with both you and Kevin. Giving in and getting a PEG is indeed a BIG DEAL. Brian already schooled me when I first posted that a PEG is indeed the way to go for those who are not willing to endure massive pain just to keep control. As Marine Bob spelled it out, the issue is CONTROL.
I could not control the radiation nor my body's reaction to it. I could not control the chemotherapy nor my body's reaction to it. I could and did control whether or not to get a PEG. The reality is that the doctors are all driven by malpractice concerns to insist that you get a PEG when you lose a certain amount of weight. I concede that for the majority of OCF posters, the PEG is indeed the way to go. However, to steal shamelessly from the Marine Corps, the FEW and the PROUD tough it out. I was quite comfortable in losing over 20% of my body weight as I just went from 177 lbs down to 130 lbs which was more than my Marine Corp Marathon trim fighting/running weight of 126 lbs. I never had dehydration nor malnutrition just massive pain in forcing swallowing. This turned out to be quite good preparation for my current swallowing struggle. Again, I have no intention of restarting the PEG wars as I did before, but I am unrepentant that if you can deal with it, then surviving TX without a PEG is indeed the way to go. My sister does not understand this but my wife does.
There is not a wrong or right here, but to assert that getting a PEG is not a big deal will always trigger an opposing response from me. Way back in law school we learned a basic Tort principle, you have to take the Plaintiff as you find them. For many of the OCF male posters that means that giving into this Cancer and getting a PEG is indeed a very big deal. To say otherwise is to sacrifice our very real feelings and emotions on the altar of medical correctness.
Yes, now that I have a PEG, it is easy, but some of us still thrive on doing things the hard way.

Christine

Ah, but all of the females here may have felt they did not want the PEG, but they got it anyway because it was the right thing to do. My point is that it seems that alpha males many times do not act rationally.
Still I have to say that you are and have been more courageous than any alpha male including myself in your struggles here.
I respect you to no end
Charm

I have had a PEG tube for 2 years and 8 months and I hate it so much.

As I am still having ongoing treatments, which require more surgery, and being unable to swallow for a week or two following each surgery, the PEG stays until all my surgeries are completed.

I went from 116 (53kg) pounds down to 83 (38kg) pounds during radiotherapy and chemo treatments and I understood that I needed it, but that doesn't mean that I was happy about it, because I wasn't. I wasn't really given a choice by my medical team. I was only suppose to have a PEG for about 6 months max!!

Summer has started a little early here and with temperatures already around 93 degrees (34C). Once again, there will be no swimming for me this year or even being able to sit in a hot tub - due to the possibility of infections with a PEG... to me the PEG is a huge deal.

Karen

Karen

Because I am an self proclaimed "Old Frack" as well as an autocratic Alpha Male , I am not ashamed to say WOW -DID YOU JUST PROVE ME WRONG!. I sadly know the whole "6 months" routine and AMAZED at 2 years and 8 months. I am actually relieved on my Civil Rights side to see that PEGAPHOBIA is an equal opportunity affliction. I also hate no swimming, no hot tubs.
Bear in mind that surgery PEGs sound like necessity to me as opposed to free choice. Still, it is only those who don't have to face the fear of always having a PEG who can scoff at our concerns. Sadly, I wish I was one of them.
Charm

Angelia

I have tried not to step on your Cancer blog posts at the risk of appearing unresponsive. So I am glad you posted here. As with Christine, Karen and yourself, I understand now that female OCF members can hate a PEG as much as us guys. That is good to know, but I still think that guys resist the PEG despite their doctors advice more so than gals. What synchronicity is it in the independent wearing of heavy boots and concealed weights by guys to "deceive" their docs in order to avoid a PEG?
This is NOT a judgmental thread, just an exploratory one.
charm

That explains why my chemo doctor was one step ahead of me when I tried to do a 'weigh in' holding my handbag (it looks and feels more like an overnight bag)

He politely put his hand out and took it from me saying that "we don't want to try and trick the scales do we?"......then I got a lecture about my weight loss (even with a PEG), he had obviously seen that sort of behaviour many times before. So obvious,... but it was worth a go at the time.

Karen

Charm,
I simply do not get the logic. I had one too and I hated it with a passion, but I was also lucid enough to realize that the little Goa'uld could save my life. So the real question the is this: What is more "manly", facing your fear and do what must be done or put your head in the sand.
Regarding the machinations to avoid getting one later on by using boots etc... that may be more of a male thing to do. Then again it is usually males who score high in the Darwin Awards.


M

Markus,

I don't get it either. The PEG is a tool, like any other tool. Would you turn down a cast on a broken arm? Or refuse to use a screwdriver to turn a screw? I had a PEG, lost almost no weight during my treatment and never had to be re-hydrated in the emergency room because I couldn't get enough fluids by mouth. I guess I don't see what all the controversy and angst is about.

Now, for those long-term users, I totally understand the anger and frustration. Totally.

Charm, I appreciate you not stepping on my blog. I enjoy these tense conversations. I have not even had this PEG for a week, and I already hate it. I have had nothing but pain with it. It is hard for me to walk, breathe, stand, sit. Anything where I use my stomach muscles, it hurts. If I had ti to do over again I do not think I would get it. Anyway, I was only doing what the Drs told me to do. Now I feel like i have lost control of everything.

Angelina,
on a more practical note, could it be that your PEG is too tight. I had that too the first few days, it felt like a stake in the chest.
I had it then loosened a bit and from that point it was ok.

M

My nurse called me on wearing a coat about half way through my treatment. She let me wear it though because she said I had been wearing it from day one (which I had)wasn't fooling her. I never thought to carry extra wieght. I ttok my pride in seeing my wieght stay stable. I did loose about 7 lbs after treatment stopped. i just made that up now.

Kelly

I didn't even have a chance to try and out smart my RO at Moffitt. Each time I was weighed I had to take everything out of my pockets and take my shoes off. It was also summer in Fl so all I had on was shorts and a shirt.

I remember the first "fight" I participated in on this site over 3 years ago was about the Peg. The pros and cons are the same now as then and I don't see either side crossing over.

OK, I'm fairly new here so forgive me, but why would there be a "fight" about peg tubes. They are required for some, not for others. Whats the big deal? If I had been forced to get one I would have. Fortunately I didn't have to.

Sorry the "fight" I am referring to is it's almost always a 2 sided discussion with few middle of the roaders. Also many of us are not forced to get the Peg as that decision is left to us and then that leads them to this site to ask the question, Peg vs no Peg, and then the debate starts all over again.

When I first came to this site which was after my Tx was completed I was vehemently against anyone getting the Peg as I concluded after reading many posts that there was a direct correlation to post Tx swallowing problems and having a Peg. Since then I have concluded that the Peg is certainly a tool, that when used properly, can benefit this Tx process. I have also concluded that it comes with a price which is putting up with the Peg itself and perhaps post Tx swallowing issues. So now I just try and warn people to keep swallowing throughout the Tx if they do get a Peg.

The PEG is a flashpoint because even doctors are divided on its utility. As DavidCPA noted, it's easy enough to find both documentation for the position that getting PEG can lead to post TX swallowing difficulties as well as for the position that without a PEG you will not get enough hydration or nutrition. A PEG can be an unnecessary crutch for some while for others it is a necessity.
Since many people (mostly male) eschew the PEG and have zero hyrdation and nutrition issues, pro Peggers assertions on those issue ring false. Reasonable people can disagree without being disagreeable so the PEG debate is constantly renewed on OCF when new patients turn to us for advice as unlike radiation or chemo, you can survive cancer without a PEG.

A PEG is hardly innocuous, just read Angelia's post and she only has had it a very short time. I always chuckle when I see it compared to a cast as I remember when all the medical advice was to tape your ribs and toes when they broke whereas now doctors realized that such a cast type binding hinders healing and so have discontinued it. Likewise the emergence of the "boot cast" to replace crutches. Without a PEG, one has the ultimate motivation to keep swallowing daily. I can say from experience just how easy it is to just give up swallowing once you get a PEG as well as how hard it is to relearn swallowing.

But the medical efficacy of a PEG is really a red herring. The underlaying issue is CONTROL of an otherwise uncontrollable force. Cancer TX does not allow you very many choices except for the PEG decision. For those of us with control and Authority issues, a PEG is a big deal. For those who have different issues in life, a PEG is not a big deal. Neither side will ever truly understand the other. There is room enough on OCF for both sides.

Let me try and give a less charged example that illustrates the same point. Just yesterday I went for my fourth Modified Barium Swallow Test at Georgetown hospital. As usual, the nurse escorted me from the waiting room to the radiology dept dressing room and instructed me to take off my clothes and put on a gown. As usual, I politely refused. Now what's the big deal either way you might ask? Well, I don't need a

Just realized I was typing in quick reply which cut off my post.

to finish off. I refused to wear the gown and moreover insisted that unlike everyone else in the waiting room that I would have my wife escorted there to stand behind the lead glass wall to watch the MBS since they were having a graduate student do that and there was plenty of room. While we were waiting (over an hour delay) we had plenty of time to observe other patient's similar request denied. They just accepted it, just like they accepted putting on the gown. For me, refusing the PEG since they could not show me any real probative evidence that I would need it, wasn't any different. so that's why there will always be "PEG wars" - its a matter of personality traits not medical science.
Charm

Margaret

thanks for validating my point about this being a guy thing
charm

Yes, read my post. I am really on the verge of making them take it out and leaving it out. I could stand to lose about 75 pounds anyway. I also do not want to be to lazt with the swallowing and never thought about that the PEG could be something you could be dependent on. My goal is to never have to use the PEG. Heck even if you do not use it you have to rinse it our 3 to 4 times a day anyway. It has already become a pain in my a... well stomach.

"Charm,
I simply do not get the logic. I had one too and I hated it with a passion, but I was also lucid enough to realize that the little Goa'uld could save my life. So the real question the is this: What is more "manly", facing your fear and do what must be done or put your head in the sand.
Regarding the machinations to avoid getting one later on by using boots etc... that may be more of a male thing to do. Then again it is usually males who score high in the Darwin Awards."

Markus, thank you for writing what I have been thinking reading all this. I don't understand the logic of fighting having the PEG to prove a point or to award yourself some mental "award". It's a device to help keep you nourished and hydrated. My husband hated the idea of getting one and using one. He didn't start using it soon enough and lost 30 lbs. that he couldn't afford to loose. He eventually started using it the way he should after I told him what his doctors kept telling him "your body responds much better to treatments when it is well hydrated and nourished". He never had to be hospitalized during treatments for being malnourished or dehydrated. He made sure to drink liquids daily and never lost the ability to swallow. He also never tried to deceive his doctors by putting weights in his pockets.

Gee John NEVER used any prescription pain killers through treatment - does he get a mental award for that?

[quote=brickster]
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 [/quote]

Hey George ! I was at UT Cancer, Yunus was Oncologist, Samant, Oral Surgeon and ElGandor was my Rads. Did chemo and Rads out at UT Bartlett (behind St.Francis) and surgery down at Methodist university (central).

Kevin

Wanda

I was never dehydrated nor had any nutrition issues so I had zero need for as you so aptly describe the PEG:
[quote]It's a device to help keep you nourished and hydrated. [/quote] It's really as simple as that.
charm

Marcus

As long as you are asking trick questions: Have you quit beating your wife with your old PEG? Sounds silly, but no different in its illogical nature than your "do what a man does or stick your head in the sand" question. I was just going to let it slide because of your clever Stargate allusion but when Wanda quoted it again, I had to point out that your "real question" was anything but real.
Obviously getting a PEG was not "what must be done" instead just another overly broad doctor recommendation not tailored to the individual. I don't expect you to get the logic, just as I expect you put on the gown when told to. "Not that there's anything wrong with that" as they used to say on Seinfield. Let's keep it an honest dialogue on the PEG. To me and a passionate minority, the blanket recommendation for a PEG is open to question. Just like they used to recommend getting all your teeth out. And you know that those Goa'ulds did not work out very well for most folks.

Ok, I've obviously not been on this board since yesterday morning. No PEGAPHOBIA is NOT a male thing. There is no way in h..l I would have gotten a PEG unless there were no alternative. My RO never even suggested that I might need one and I only lost 4-5 lbs during the entire treatment, pounds that I wanted to lose anyway. I didn't even know about peg tubes until I logged onto this forum 5 years later and everything that I have read since about the problems they can have, have convinced me that if any doctor suggested I needed one for something, I would go with a NG tube first. I admittedly had no surgery in my mouth and had no chemo with my radiation, so my experience was much easier than most. I also think it is a lot easier for a 5'5 120lb female to maintain her weight than a 6' 200 lb male. We have to swallow a lot less of that nasty/no taste stuff. So I will take my medal and pray there never comes a day when some doctor decides he needs to put a hole in my stomach 'cuz it ain't happening.

Take care,
Eileen

OK OK I think we have debated the Peg vs no Peg issue to a good stopping point. I'm sure it will come up again so let's let this post fade away.

We are all on the same team.