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

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

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

Dear Jean, here's another opinion from a very opinionated caregiver 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

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

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

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

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.

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.

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!!!!

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

Jean -

Don't ever hestitate to ask questions and, ask why a certain treatment is being done rather than another. Also, be proactive in presenting anything which might affect the eventual treatment decision. For example, prior to his daignosis my husband had existing (and progressing) high-end hearing loss due to ear infections as a child, also the hereditary neurological condition called "benign essential tremor." His MO and RO both took this into consideration and he was given carboplatin chemo rather than the more commonly-used cisplatin because it is far less toxic to the ears, plus no taxanes because of the risk of neuropathy and possibly exacerbating his existing tremor.

Be sure to ask about the possible (almost unavoidable) side-effects -- see the Oral Foundation web site for discussion of these -- and ask how they plan to ameliorate them. This discussion may be better with the oncology nurses, by the way. This would include trismus, mucositis, pain, skin burns, and inability to swallow sufficient hydration and nutrition. Ask about the PEG tub, I agree with other posters that it can be a life-saver.

You must be the strong one, it is hard enough for the patient to get through each day. My feeling is you can never ask enough questions and get enough information, fortunately, my husband's doctors all agreed!

Gail

p.s. since Joe is young and a non-smoker, has he been tested for human papilloma virus? It is turning out to be a major cause of tonsil and base of tongue cancers in non-smokers, is biologically different, responds better to treatment and far less chance of recurrence. However it is almost never implicated in oral tongue (outer part of tongue) cancers but your post doesn't make clear where Joe's tumor was.

Gail, I don't know if was tested for HPV, but I plan to ask him. His tumor is on the underpart of his tongue towards the back.

I have been reading about the side effects and they certainly sound awful. For all of you who have gone through this and those who have supported patients, you are simply terrific.

I didn't realize that the peg tube was that easy to insert. That might make a difference with Joe's decision. Thanks for the information!

Jean

Jean,
How wonderful that you and your brother were able to talk and get on the same page.
He needs his family now and you will be a wonderful advocate and friend.

*Rooting for Joe*
Maggie

Hi Jean,
I used to print out a lot of the posts here to share with my mom and family, it was insightful and made it easier for them to start asking questions.

Jean - As Donna says, it does help to print out info from other posters or from searching the OCF web site - that way when you share it with others, it's not like you are telling them what to do but it's info coming from others who have been thru the same experience. It's better of course if questions can be asked in a positive manner. I found that having other people present when asking questions of the doctor really makes it easier to remember and you can check with each other afterwards to make sure info was clear. You can ask Joe if he wants you to be there. . . . that way, it will help him to feel in control. When my son was not keeping track of his medications and resisted my suggestions, I printed out some really good posts and just left them by his bed and it really got results! Sounds like Joe is really lucky to have such a caring sister.

Excellent ideas!

Radiation starts next Monday. We are all nervous, but I am just amazed at how my brother has handled this.

It seems as if the first 2-3 weeks might be relatively easy compared to the later weeks. He will be done on Dec 21, so I hope the New Year will bring the best for him and everyone else on this board. One of the hard things for him to do was to give up playing Santa Claus at our family party on Christmas Eve. Some of the kids still believe and he's been doing it for 10+ years.

Another question is now vexing me ... we have planned a schedule for people to take him to radiation and to stay overnight with him. What about during the day? Should we be telling people to plan to stay after radiation? I fully realize that the final decision will be Joe's, but if this might be a day-long commitment, I want to make sure that people know what they are getting into.

Thanks,
Jean

Jean,
You are amazing! Sounds like you have got everything SO organised! Well done! I'm sure it will help all of you by spreading the burden.

Have you got the schedule written down/spreadsheeted?(OK, I just made that word up!)

From what I've read, not experience, in the early stages he will want and possibly need to be left on his own afterwards, as the side-effects 'kick in' he will/may be more needy of company/nursing--but you seem to be well-prepared for that, and as you say, it will be his own decision, based on how HE feels, initially physically/emotionally, later you may need to 'pull rank'

Hey. let's hope for the best--no-one ever said Santa couldn't be sleepy or considerate occasionally--he might manage a half-hour appearance, but has decided he won't stay too long as he knows 'Uncle Joe' is asleep in bed and doesn't feel too good!--Long live believers!!

I'm sure the 'pro-caregivers' will soon be on to advise! Well done again, you!

Brenda

Jean,
Just a thought on the questioning subject:
There were some questions that I didn't really want to ask in front of my husband - or that I didn't have time to ask (or think to ask) at the time of the appointments. So I would email his radiation oncologist - we had a really valuable continual correspondence. I realize many doctors would not be open to this, especially at a large center.

Best,
Anita

Jean,
I e-mail my mom's RO periodically. He read the e-mail tonight and called right after to discuss it and speak with mom. I value the opportunity to be able to discuss questions that I am uncomfortable asking in front of mom/family. Sometimes my mom just wasn't ready to hear everything. Also, I agree with Bren about your brother needing time alone initially. My mom always came home exhausted and really needed to sleep/rest. I found that if someone aside from those living here was present she would try to stay awake and be the hostess. Rad really took a lot out of her.
I'm glad he has you to manage things....it's not easy at times.