| Joined: Apr 2011 Posts: 3 Member | OP Member Joined: Apr 2011 Posts: 3 | Hi there everyone... Im having a hard time doing the research to get answers, so Im hoping people here can help me understand.
My father in Law called over the weekend. He has had stage IV throat cancer for quite some time, that I believe they essentially consider in remission. Hes had most of his mouth rebuilt with concrete (his jaw anyway) and has lost quite a bit of the roof of his mouth, tongue, and surrounding areas. At most of his check ups, they do usually remove some sort of tumor, some benign, some not.
He called to tell us that his throat was atrophying, and he was going to have a feeding tube put in today. His wife mentioned it being a stomach tube, so Im assuming its a PEG system, but thats about all I know.
Can someone tell me what this means? Could it be a long term thing he could live with (in fact, probably getting BETTER nutrition than he has for quite some time), or is this a thing where we're talking a matter of months?
My husband and I are expecting, and if we're talking a matter of months, I want to give him the chance to go see his dad and spend some time with him before Im super pregnant, or we have a newborn AND a toddler running around.
Help?
Thanks all.....
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Getting a feeding tube (and it may not be a PEG, but a G tube to the stomach - the only difference is how they put it in) can definitely improve your father in law's nutrition. Unless something else is happening medically to your FIL, he can live on his feeding tube until he dies of other causes. I have been continuously on a feeding tube for over two full years and expect to do so for 15 to 20 years more. Bottom line: just getting a feeding tube does NOT mean the patient only has a number of months left to live. I have to admit that your worry/concern was exactly how I felt about a feeding tube. It was only for very very sick people who were going to die within months. That was the cinema image I had and one reason (out of many) why I was so stubborn in refusing to get a PEG my first year of TX.
Don't be confused by any of the posts here about PEGs, those discussions and opinions are almost entirely in the context of patients who get them during TX and then have them out later. It's the difference between wearing the "boot" and using crutches for a broken foot and being in wheelchair for life.
Don't underestimate the hard psychological hit your FIL may take from having to get a feeding tube that may become permanent. Encourage him or his wife to log onto OCF for questions. Get prescriptions for liquid nutrients so insurance can pay for it rather than buying at the supermarket. Please tell him I turn 64 this year and I am doing just fine with my permanent feeding tube. He can do it too. Congratulations on your baby to be Charm 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: Feb 2009 Posts: 22 Member | Member Joined: Feb 2009 Posts: 22 | I have been on a feeding tube for over 2 years. Had it put in the day before surgery. I can not swallow anything but thin liquid and then only a small amount at a time. I expect to be on it for the rest of my life and have accepted that fact. Its really not a big deal I still go out with my friends and to family gathers I just don't eat. It is very very hard for people to concieve of the idea of not eating regular food but thats just the way it is. | | | | Joined: Apr 2011 Posts: 3 Member | OP Member Joined: Apr 2011 Posts: 3 | Thank you If his throat is literally atrophying, doesnt that mean that it will effect his breathing abilities as well? I dont mean to sound ignorant, on most things Im not, but throat cancer is a new one to me. | | | | Joined: Apr 2011 Posts: 3 Member | OP Member Joined: Apr 2011 Posts: 3 | In his case, hes all been on Ensure anyway, he hasnt eaten a "real" solid meal in at least the last few years. So really, its just another aspect of the cancer, but its not indicative that we should do anything different than we have been? This is good to know I really appreciate the candidness that both of you have answered my questions with! | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | I'm not a doctor but throat atrophy describes the wasting away of the throat muscles which will cause dysphagia or difficulty in swallowing. I don't think it means he will have trouble breathing as long as his lungs and diaphragm muscles are okay. Your husband might want to just ask his father. I never minded questions from my son about what the latest diagnosis meant Charm 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: Feb 2009 Posts: 22 Member | Member Joined: Feb 2009 Posts: 22 | If he can swallow even thin liquids he should continue not for nutrition but to atleast keep using the muscles that work now. Any muscle that is not used will stop working. Also a small amount of liquid helps keep the mouth moist. | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2011 Posts: 130 Likes: 3 | I agree. If hes at the point where he needs the tube for nutrition go with it, but please emphasize the importance of working these throat muscles with some physicial TX. Be it alone, while trying to eat, or working with a professional. It's as plain as use it or lose it. In my totally unprofessional mortgage broker opinion I suspect that none of this will effect his breathing. Welcome. Keep comming back. Will Zinn
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Everyone here gave great advice so I'm just offering a good luck to you and your family - welcome.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | Welcome to OCF! You have been given excellent advice about the feeding tube. I hope you have a better understanding of things now.
One thing I noticed that hasnt been discussed is visiting. Since it sounds like your family is about to be blessed with another child it probably would be a great idea to go visit your FIL before that happens. None of us are guaranteed a tomorrow. Cancer has taught me to not procrastinate as tomorrow my health might not be good. To me it sounds like it would be so much easier on you to visit now while you have just one child. Regardless of your FILs condition, Im sure it would make your husband feel alot more at ease by seeing his father in person. How far away do you live from him?
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 | | |
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