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#52328 10-30-2007 03:59 AM
Joined: Sep 2007
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ord_dfw Offline OP
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Hello everyone,

My brother (42 y.o., non-tobacco user, social drinker) has Stage 3 SCC on his tongue (it progressed really fast from the time of diagnosis to his second appt). He is being treated at The University of Chicago and his treatment team seems pretty good. My mom has attended all his doctor visits with him and has also gone with him to chemo. I have gone to one doctor visit and one chemo session.

In two weeks, Joe will start outpatient radiation twice a day, 5 days/wk, 7 weeks. From what I have read on this board and elsewhere, the radiation seems like it can be brutal. I have suggested to my brother and mom that they might want to ask the cancer care team about getting a peg tube.

So, here's my general question. How can I get my brother and mom to start asking questions of the medical team, rather than just accepting what the team is saying? I ask questions and am pointedly told by my family that I am "too clinical" and "too negative". I want to be supportive, but it seems like no one else wants to be involved in his treatment! What in the world am I supposed to do? I don't feel welcome at his medical appointments, but I don't feel like I can just push my way in there. Should I do that?

This whole thing is just so scary and so weird. My dad had Parkinson's Disease for more than half of his life (he was diagnosed in his 30s) and it seems like my mom sometimes knew more about PD than the doctors. Now, she's just sitting there and not really asking questions. My brother is scared out of his mind and not asking questions.

I certainly will appreciate any input!

Jean


* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
#52329 10-30-2007 08:29 AM
Joined: Jul 2005
Posts: 207
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Hey Jean,

Welcome to the board. I think a PEG tube would be a good idea. Mine saved my life. My diagnosis was very similar and they installed my tube before any treatment began. I also had 35 RAD treatments over 7 weeks and 6 or 8 bouts of chemo. Don't quite remember how many, but i could take only very small sips of water for about 4 months. I still ost over 80 lbs with the PEG tube. I highly recommend he consider.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#52330 10-30-2007 09:00 AM
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Jean--on the 'info' issue.
Try and remain calm and keep asking!
And if there's no way you can comfortably ask his docs or nurses, come back on here regularly and keep asking! People will help you, advise you, sympathise with you and comfort you, believe me.
You are in the best place

Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#52331 10-30-2007 01:44 PM
Joined: Apr 2005
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JAM Offline
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Dear Jean, here's another opinion from a very opinionated caregiver smile Rad. treatments can be really tough. PEG tubes can be a lifesaver to an oral cancer patient. Caregiving could be really hard, depending on the reaction of the patient to the rad tx. You all need to ask lots of questions and be prepared for any eventuality during the next months. [the effects of radiation can last months longer than the tx dates]. PD is one thing, oral cancer is a different thing. Just try to be prepared for what you can. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#52332 11-01-2007 08:19 AM
Joined: Nov 2006
Posts: 93
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Posts: 93
Jean,
Think I know what you are asking about.

My husband finished his TXs for Tonsil cancer in Jan/2007.
When we were told by his first ENT after his operation to biopsy the bump (mistake on our part) the lymph node was very questionable.
Having 4 daughters in the room with me was eye opening. They all reacted differently to the news. The daughter who was very aggresive and asked all kinds of technical questions really upset the other three. They felt she just jumped in and didn't let the DR speak. Being the Mom I tried to let them all handle it their own way, needing some time to take a breath. Probably a mistake.
After a few minutes I stepped in and started to steer the questioning to the most positive place I could. The 3 sisters are still very upset with the 1, tho they love her dearly.
Sometimes it is not what you say or the questions you ask but how and when. There is a time and a place to ask questions. Also a way to do it.
Am not saying that your attitude or anything is wrong, please don't take it that way.
This is sooo hard to type. Wish I could explain.
Maybe I should just not post.

Sometimes the clinical and technical questions need to be asked in the most positive way. We have a wonderful team who are very open. Your brother might not need a PEG tube. We were very lucky that my husband did not.
It ain't easy and family is important so hang in there. It truly is a challenge but our family is so much tighter and loving because of the fight.
Will be thinking of you.
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
#52333 11-01-2007 04:12 PM
Joined: Aug 2003
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Jean,
My response is this. Forget worrying about the feelings of anyone.........worry about your brothers life. If someone gets offended by you asking a question, oh well, that will pass. I would rather have my family pissed off at me then get to the point where the doc tells me, "well, if we had done this sooner he would still be alive." Be your brothers voice, the one that can push emotion aside and ask the tough questions. It's the tough questions that will KEEP him alive and give him a fighting chance at beating this disease. Knowledge is power.

Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#52334 11-01-2007 09:15 PM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Robin and i were always arguing about me asking questions lol.He wouldnt, and i couldnt stop.I needed to know so that i was armed with all the tools i needed to look after him both physically and mentally.

He never understood half of what he was told and i used to put it all into laymans terms to explain it to him.Eventually he was perfectly happy to say nothing and let me do the talking.

It made me feel involved and useful as well.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#52335 11-02-2007 06:50 AM
Joined: Sep 2007
Posts: 79
ord_dfw Offline OP
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Thanks to all for the wonderful posts.

I had a long, open conversation with my brother. It was probably the best conversation that we have had since we were kids and trying to upset the babysitter. smile

Anyhow, he told me about how scared he was of the radiation and what it might do. I respect him so much for how he is dealing with this. He also just plain doesn't want to do the peg tube because he doesn't want to have unnecessary surgery. In response, I warned him that I was going to bug him all the time about getting enough fluids and he said ok. He better be ready for me as well as for the radiation!

Joe posted a funny note on his blog yesterday. He wrote that he was nervous about the radiation, but maybe he would gain some superpowers from the rays. He said that he could be a SuperHero next Halloween!

Have a wonderful, happy weekend.


* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
#52336 11-02-2007 10:22 AM
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
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Having a peg tube fitted isnt really surgery,robin had his done under light sedation and didnt remember a thing,it was over in a few minutes and was invaluable to him right up until the very end as he had all his medication via his peg which meant it got into his system much quicker,it also meant he never had to be hydrated in hospital or worry about the pain of eating and swallowing.
Dont ever underestimate the radiotherapy it is tough!!!!


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#52337 11-02-2007 05:17 PM
Joined: Mar 2007
Posts: 179
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Having a peg tube I feel saved my husbands life. It really isn't all that bad. We had it putin at 6 in the morning and we were at the RO for his treatment at 11:00a.m. the same day. Trying to convince them of eating and drinking when they are in pain and so unconfortable is a job in itself.. Everyone reacts differently. I beg you to keep asking questions and to be the best advocate for your brother- he will thanks you a million times after. Keeping you in my prayers. LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
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