I'm new to this site and this is my favorite forum area. It's been so helpful. I had a peg tube put in 1/07. Most of my tongue was removed in 11/07 and I have a flap. Between that and the upcoming radiation and chemo, doctors knew I would need it. I had a bad time getting it - should have been outpatient procedure, I was in hospital for 2 1/2 days. But eventually it turned out o.k. and I used it for about 2 months. I drink Carnation Instant Breakfast, smoothies and shakes and am starting to eat a little food. My oncologist,surgeon and radiation onc. all said peg could be removed. The gastro doc wouldn't do it.He said if I have a reoccurance I can not get another peg tube if needed. Has anyone had one removed and gotten another later?

Karen, I think there are some people here who have but I was told the same thing by my gastroenterologist and all my other docs are backing him up. I guess it's something to do with scar tissue forming and making it hard to do again.

Nelie

That's exactly what I was thinking, Nelie, that its a scar tissue issue. I had both a Port and then a Hickman line when I was treated for lymphoma years ago so although my current docs would like to put in a port, it could be complicated by all the scarring I have. (They're going to wait and see if its a problem.)

- Margaret

You could always look into the nasal tube. I know it's meant for short durations but maybe that would work in a pinch.

Karen:

I havent heard of anyone having the PEG twice. In fact my doc asked me if I was sure when we talked about having mine removed. He said he didnt want to have to put it back in, so maybe it is possible to get it a second time.

Dont be in a rush to get rid of it. Its better to have it and not need it then to wish you still had it if you run into any problems.

Believe me, nobody out there hates the peg tube more than me. Unfortunately, I had a recurrance so I still have the peg which is good cuz I struggle to eat now. I cant wait til Im well enough to be rid of both the peg and the port.

I think Amy's husband John had his PEG pulled then had another one when he was diagnosed with a recurrence. I'm not sure how long it was between when he had it pulled and when he got the new one--maybe it worked because it wasn't all that long.

Margaret--I hope they can do the port for you. That was such a blessing to have as I went through treatment (especially since I have veins that are hard to find). I see from your signature you're due to start radiation Thursday- I'll be thinking of you on that day. Have you already done the fitting of the mask and all that?

Nelie

As David mentioned, a nasal tube is a better option as its not painful , only thing is it looks odd , i donno whether its temporary thing cause my dads having it since past 2 months now.

Nelie,

I'm actually hoping *not* to have the port, only because it would mean another 'procedure' and more anesthesia. If I can stay hydrated enough during treatment, my veins should be okay. If not, a port may become necessary.

I did have the mask and bite block made back on the 10th and I have to say, I already know when treatment is over, I'll never want to see that thing again! I don't like it one bit.

Thank you for your good thoughts.

-Margaret

Margaret,

I was a stubborn and bad patient and didn't want to listen to my docs very much but if I had to do this Tx again with my knowledge I would definitely have a port put in.

David,

I know... I had to have a port during chemotherapy for lymphoma, but it clotted and had to be removed halfway through treatment. The surgeon was unable to get in a central line and I ended up getting a Hickman line. The trouble with me is, if there's something that can go wrong, it will. My PEG caused a nasty skin infection already, I can only imagine what trouble a new port and all my scar tissue would cause.

I'm a pretty good patient, but not a simple one : )

-Margaret

Hi Nelie,

Thanks for info. Have you had a peg for years?

Thanks everyone for your input. My medical oncologist & radiation oncologist at home and my surgical oncologist at the cancer center in Philadelphia all said get it out, so I guess it's coming out this week. Hope I'm making the right decision. I'm trying to go back to work soon and with the job I have it would be difficult with the tube. I am pretty nervous about the whole thing though.

I'm just comparing what I went through without a port to what I think it would have been with a problem free port.

David,

I understood.

And thanks.

-Margaret

Karen:

There is a gentleman in my support group who has had his PEG tube for the past 4 years. It is replaced every 6 months with a new one as to hamper infection. I also asked one of the infusion nurses at the Virgina Piper Cancer Center here in Scottsdale, this question. She said yes it can be done a second time. She has seen it done on several occasions.

Schwaby,

Thank you so much! My radiation oncologist convinced the doctor to remove the tube. I go today and was so worried,wondering if it was the right thing to do. I'm still nervous about the actual removal of the tube - especially since I don't have much faith in the gastro doc. He's the only one during my treatment I have disliked. Your post made me feel much better. Thanks again.

Just FTR, replacing a tube with another is not the same as pulling a tube, letting the insertion site scar over (which it does really quickly--that's why they say to go to the ER if it comes out-scar tissue starts forming over the site within 24 hours), and then trying to insert a tube again weeks or months later.

Karen, I have had a tube for a little over 3 years now because of long term swallowing difficulties--only had it replaced once. But I haven't had any infection probelms either.

Nelie

HI Karen
I just had mine put back in after 6months of it being out. I never heard of the scar tissue issue. I had to have trach put in so he wanted to put the peg in it is not in the same place as the first one.

Well, the tube is gone. YAY!!! A little sore but nowhere near the pain I had when getting it in. Hopefully i will never need to see that doctor again!

Karen:

Congrats on being rid of the peg!!!! Im sure its a huge relief with having it out. Hope you feel better quickly from having it removed.

Christine

You're a fighter and will do good without the tube. Good luck and keep us informed.

Karen, Congratulations on being rid of the PEG!

Happy 4th of July!!!
Thanks everyone on congrats and good luck wishes.
Katrina - Thank you for letting me know for certain that getting another tube is possible (just in case). I'm sorry circumstances caused you to need another one though.

I had a PEG installed in Nov05 prior to radiation and removed about Apr06. During my recent experiences, I had a PEG installed two weeks ago, so it certainly can be done and I was glad to have it done. Naso-gastric tube is much smaller in diameter and harder to keep clean.

BTW, first PEG was by gastro-doc with endo-scope and anesthesia; second PEG was done by pre-radiation team using X-ray and local anesthesia only. First PEG had larger diameter, so gravity feed was OK, but current PEG requires pushing with the plunger.

It is also apparently easy to remove a PEG and immediately replace it using the previous holes.

Congrats on getting the tube taken out. Don't let doctors make you do things that you don't want to do. Mom had a tube for a year then was rid of it for 3 and now she has it again with no problems. You and she must be alike about the anesthesia. She hates anything to do with it. Always has some kind of awful reaction.
As far as the port is concerned, Mom hates her. It has caused her a lot of problems. Has constant shoulder pain from it. She told the doc that she is having it out after her chemo is done and if she has to have chemo again she will just do it through an IV. But that�s her, others who get treated with her are incredibly thankful for their ports.
Good luck!
Amy

I was talking to my nurse practitioner today during followup treatment and mentioned that my current PEG has two small diameter tubes instead of the single large tube that my previous one had. She said that if I wanted, we could replace the current PEG with a larger one (current PEG requires forcing food with syringe instead of just gravity feed). As I mentioned above, the current PEG was installed with just a local anesthetic and some X-ray instead of using the endoscope and was a much easier procedure for me.