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Scot55 Offline OP
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It has been a very hard week--My brother-in-law is not doing well. He went to UVA for his post-op checkup Tuesday, and he was told his cancer is stage 3. He has been absolutely distraught since hearing this news. My sister has called me several times quite distraught herself trying to figure out how to cope with this.

(Background: 2 1/2 weeks ago my BIL had most of tongue removed (SCC) along with nodes on each side of his neck. Apparently one node had ruptured due to a tumor that outgrew its location. He is 42.)

Today his case was discussed at tumor board. My sister was expecting a call next week regarding the outcome. Instead, the radiologist called her at 8PM tonight and told her they have decided to not go through with the planned radiation next month but instead want her husband to start chemo immediately. He overheard the phone conversation and just collapsed. She said he has been leaning toward suicidal thoughts this week since hearing he is stage three. She is afraid to go to work because she just can't leave him alone for fear that he will do something to himself. She had to call his brother over to the house tonight to try to get him calmed down.

She said that she called the office of the social worker who is assigned to their case (they have no insurance), but this person has not returned her call three days straight.

She is beside herself for what to do. Frankly, I am unsure what to tell her. I've researched places for her to call, but they all keep coming up blank. Nobody has any answers. Surely there is something that can be done to counsel him? Yesterday, at my suggestion she called the doctor's office at UVA, and got the resident on call. He told her he didn't really want to call him in any meds, but finally gave in and called in Zoloft.

I just think this is all being handled so badly. Too much too fast. Does anyone have a direction to point me in? I feel so helpless.

Thank you for any ideas you can offer on what she can do to get help for him.

PS No amount of telling my BIL about success stories and reasons to have hope are phasing him.


Last edited by Scot55; 01-28-2010 09:56 PM.
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First, I would want an answer to why the tumor board decided to do chemo only. Why would they not do the standard of care, which would be chemo AND radiation? Is it possible that she got this wrong, which might mean that they wanted to do chemo FIRST, and after this do the radiation. This is also a current common treatment protocol in stage 3 and 4 cases. Since there might be spread of the disease out of the regional area, the chemo would deal with this if it was begun early, and it is also done to reduce tumor bulk prior to radiation to reduce the life long quality of life issues to go along with radiation, and reduce the radiated area, which has local consequences if vital structures might be in area to be radiated. These are suppositions on my part not having all the facts, but reflect common, current treatment paths. If he isn't on one of them why?

So first, I would want to be sure that she completely understands the tumor boards recommendation in its entirety.

#2 IF she heard right, then the tumor board, for someone that is not even a stage 4 patient (I am one now 11 years out from treatment), has decided on what amounts to palliative (non curative) treatment. This makes no sense. Perhaps it if this is true it is time to consider a simultaneous second opinion from another institution, since essentially choosing a non curative path for someone who isn't at the most advanced stage of the disease, seems odd. Given the state of his disease at time of surgery, I doubt that surgery by itself was ever the concept for a complete treatment protocol, and perhaps this was never completely understood by them. And what has changed is not surgery followed by radiation, but now surgery followed by chemo, followed by radiation.

So I would want to be sure, that since all this (at least here) is one person telling another person who is telling another person and I am not sure that everyone really nows what the plan is. IF this is the total plan, a second opinion is a must or at the very least, a complete discussion of WHY is in order to fully understand what perhaps has not been explained.

None of your posts have detailed what diagnostic tests he has had. What scans etc. The reason I ask is there is no comment if this disease has been found to have spread out of the regional area into some place that would make people think of things differently. Please post what was done diagnostically.

Lastly, any group of doctors that are not wiling to provide psychological support in both face to face dialog with a doctor trained in such, and chemical assistance, seems cavalier given the level of his distress. Perhaps the doctors are insensitive to his distress, and if so, someone should call them and actually use the word suicidal. If you then don't get the proper actions, make sure that the department head and the hospital admin people know the situation. That word is going to trigger thoughts of liability and more in their minds.... this will change their level of involvement for reasons of self preservation.

Last, please do not forget that a young man has lost his vision of himself, along with his actual voice, future employment opportunities in what is already a crappy employment economy, and probably a full load of self esteem has left as well. This I know something about. I was a guy who had been the CEO of a company of international reach, I (please excuse the ego statement but I have to describe how screwed up and extensive my self love was) had a life of being surrounded by attractive women, powerful friends, and more, and I thought that was over. (Clearly I didn't know what was important in life at that stage of things). I was suicidal. For real. And I could not see a future that had a me that I liked in it. It is common. That he would dive off the deep end emotionally is not uncommon, but it is reversible.

So that's a let's get everything straight perspective first. But besides the understanding issues, and even a possible change of treatment venue if these guys do not have the answers you want to hear. So lastly, he needs to believe that someone, perhaps someone worse off then him at the same point in treatment time, would be worth talking to... or given his likely difficulty in talking - listen to. I volunteer. I bet others here would offer to talk to him as well, or at least communicate with him in writing. You should convince him to come here to the board. He doesn't. He needs to. I relate a lot to Eric, Charm and others that have drawn a really tough hand of cards. They are working through it all, they know what he is feeling in spades, and they would be good people for him to hear from. Get him to consider it. He needs to hear something positive from someone on the other side of most of what is ahead of him. As much as you love him and want to help, somethings are best said guy to guy, and from someone who has lived in the same deep hole as you.



Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Scot,

believe it or not this kind of reaction is common. Fear takes over and people begin to feel hopeless. I'll say that your BIL needs someone with him at all times and he needs both psychological assistance and support. Antidepressants are not cure alls, where I believe that cancer patients should have every tool available to them to help, drugs aren't going to miraculously instill a will to live in your brother.

Personally I'd start by finding a local cancer survivor to talk with him or contact a cancer support group to help. He needs to know that this isn't hopeless, it isn't a death sentence...hell I would've loved a stage 3 diagnosis, I'd probably still have my face if they'd caught it that early. I'm no success story, in fact I find myself more of a cautionary tale and think I should be wrapped in yellow tape. I am still alive though and enjoying everyday with my family.

Sometimes we need an infusion of strength from others to help us walk this road, which is why family, caregivers and support networks are so important. Please read the Nietzche quote in my signature and help your BIL find his "why".

Best wishes,

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Scot55 Offline OP
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Thank you both for your responses. I agree that much of this makes no sense, and I am seriously considering driving to meet them at UVA next week in order to get more facts. It is very hard for me to help them when I am never sure if my sister understands or knows the full story. She is just very ill-equipped to handle this. I wish I did not live so far away although 6 hours is drivable, at least.

It has been difficult getting information about my BIL's case because, as I stated in a previous post, he and my sister have high school education only and have never used the internet. They are very unfamiliar with the medical jargon, so it has been quite an adjustment for them. They live in a very small town and have lived paycheck to paycheck for as long as they have been married (16 years).

I have printed loads of stuff from this forum and mailed it to them. I have talked to my sister by phone several times a week to help her understand some of the treatment options, medical jargon, and processes for getting things done (applying for Medicaid, preparing for doctor visits, liquid food ideas, etc).

She has a couple of other people supporting her, but basically, she is relying on those doctors at UVA to give them direction. They have no "primary care physician" or hometown doctor because for years they just avoided going to the doctor or the dentist since they had no insurance (which is how my BIL's cancer came to be so advanced). I know that sounds like they must have lived under a rock, but really, they are like so many Americans who just try to avoid getting sick, go to work and keep the kids in school and take care of the home.

This all started when BIL went to the local urgent care back in October because of a sore on his tongue and ear pain he'd had for apparently some time. That doctor sent him somewhere else for biopsy, which came back SCC of the tongue. Once his situation was assessed, it was determined that he should see Dr. Reibel at UVA. There, he had a CT and they were told his nodes looked clear. At least this is why my sister relayed to me. My information is only as good as what she tells me. Surgery was scheduled for mid-Jan. I don't know of any other tests that were performed up to this point.

He had at least 2/3 of his tongue removed and it appears that he will not have any further reconstruction, I assume, due to not having insurance. Post surgery pathology report indicated the margins of tongue tissue were clear but that one lymph node had ruptured and was cancerous.

They thought prior to surgery that there was no metastasis because the nodes looked clear on a CT scan. Now THAT doesn't make sense to me because my sister told me that her husband's neck was noticeably swollen beneath his ear before he went to urgent care back in October. That CT scan should have shown a tumor in the node (right?), so already there is some miscommunication.

Last evening when she called, she said that the plan was to now do chemo instead of radiation, but I have talked to her this morning to clarify, and she said it is possible they meant that radiation would be done later rather than not at all--so Brian, the plan probably is to do radiation after the chemo. She said Dr. Reibel did not mention chemo to them on Tuesday or prior to surgery. Now that this has entered the conversation and (to her) the doctors are indicating a sense of urgency, it is really freaking them out.

I did tell her last night when she called so distraught that I had actually expected they would do chemo and radiation because it is "standard" treatment, as you both have written. I also tried to explain to her very clearly what stage 3 means and how the chemo is the best option right now, and she does seem to understand this. She said her husband is not able to grasp it fully because he is refusing to hear that there is any hope. His mother died from cancer when he was a baby, so I think there are a lot of issues coming out here.

And Brian, I totally can appreciate what you have told me about your life/ego prior to cancer in more ways than I will share here, but regarding my BIL, he is a very handsome man who looks and sings like the country singer Tracy Lawrence--so yes, he has much to feel loss for including his identity as a young, vibrant male. He has always been a bit on the shy side, but a real charmer nonetheless and very proud of the houses he builds with his brother. I totally understand, as does my sister, that he is grieving the loss of his ability to communicate--to talk and to sing and to joke with his teenage son--among many, many other things. I know that once cancer comes into one's life, it is such a loss of innocence for there will (for some) never be another moment of total and pure contentment and feeling of being safe and secure because there is always that worry that the cancer is or will be back.

So while I get that he has a lot to be distraught over, it just seems so unfair that there is NO team of experts swooping in to help them--but to be fair, I realize it may be that my sister and her husband have not indicated how much support they need. I'm going to call patient services at UVA this morning on my sister's behalf to see what I can find out. I don't think anyone at UVA realizes how distressed they are.

Again, thank you Eric and Brian for your information and very detailed posts.


Last edited by Scot55; 01-29-2010 06:48 AM.
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Mayvbe there is a Cancer support group in your area. Call the Cancer Society and check it out or maybe call a CCC and ask them about support groups. As for the Social Worker, where ever thay are from, file a complaint against them and let them lose the job they have but don't do. Hell, they get paid to help people not ignore them.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Hello, I can very much relate to what is going on with your BIL but we are a little further ahead of the game than you are. My sister was dx in Sept. She also has no insurance, was stage 3 oral SCC. Her primary tumor started under her tongue and grew rapidly when the oral surgeon ripped it out of her mouth instead of cutting it. In order to get her seen quickly we were told we should go to the ER, which we did. We spent 10 hours in there before she was admitted. The main complaint going into the ER was pain. She was still able to eat by mouth. She spent 10 days in the hospital basically having very little done, it was a hurry up and wait situation. I am an RN so I spent most of the time there with her. I live 2 hours away and had to go home once during that 10 days. I am very mouthy and questioned everything they were doing. For example, we knew she was going to need a feeding tube but they took her to surgery to put it in while she was inpatient. They said they couldn't get the tube down her throat so they decided the tumor had closed her throat. I threw a fit because the major complaint she had was a very painful sore throat. If she was able to drink it would soothe her throat. So they sent speech therapy in to evaluate her and they decided she was able to swallow so they let her start sips. The next morning they checked her again and decided to let her have full liquids.
Let me say here a lot more happened in between, this eval was done the morning they decided to let her go home. She also had the feeding tube in place by now and they wanted us to use it. I wanted her to eat by mouth as long as she could. We also do not use the commercial feeding, we make it ourselves and it has been a work in progress.
She is at this point through her chemo and radiation. She is very tiny, was only 89 lbs when this started. After the 2nd chemo, only 3 were scheduled along with daily radiation, she became so violently ill that the family decided she would not be able to handle the 3rd chemo. She had gone down to about 80 lbs and is still trying to increase her wt. (She is up to 88 lbs)
I do want to tell you we are not seeing any lack of care regarding treatment or surgery because of her being on MA, however, she is also receiving Charity Care from the hospital so that may be the difference. We are now in the process of talking to the surgeons about reconstruction but have not had the final scan to see how much tumor is left.
Have to get off right now but would be happy to discuss more later.
I think it is very important that someone be with the family when they see the Drs because I think they are to emotional to understand what they are being told.
One more thing, we have gotten very little emotional support except for the absolutely fantastic radiation dept. Someone in the hospital should study this dept. The drs, nurses, radiation techs and office staff go above and beyond with encouragement and support and if it hadn't been for them I'm sure my sister's depression would have been much worse.

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Scot
UAV is a NCI designated Cancer Center.

I would think it would be a very competent place and would provide a high standard of comprehensive care consistent with treatment guidelines.

Perhaps there is just a lot of miss-communication between you, your sister and your BIL's oncology team at UAV.

During treatment, most of us saw numerous doctors weekly. So perhaps you could arrange a visit and accompany your sis and BIL to his appointments and ask for some clarifications.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
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Scot,

I 'm sorry your family is going through this. You have received some excellent advice from very knowledgeable folks. I have just a few small suggestions that build upon what has already been said.

----If at all possible, go to the next appointment with your BIL and sister. I'm sure your presence would be the most reassuring thing that you could do for them.

----Buy a small tape recorder and blank tapes (from somewhere like Radio Shack) and give it to your sister. Make sure she knows how to use it and have her tape next week's appointment (when you are there) and all future contacts with the medical team. I have done this and the doctors are used to it. This should eliminate any confusion about what was said, and what needs to be asked. Also, you will have the "real poop" on tape and can be better able to help her long distance from NC.

----Print out the Getting Through It Draft and take it to your sister. I see by your posts that you have read it. It was a great help to me when I was newly diagnosed, terrified and needed quick access to accurate information. If you are with them next week, this will give you the opportunity to look at it together, and you can help them understand the treatment and how to complete it successfully.

[quote=Brian Hill] So lastly, he needs to believe that someone, perhaps someone worse off then him at the same point in treatment time, would be worth talking to... or given his likely difficulty in talking - listen to. I volunteer... Get him to consider it. He needs to hear something positive from someone on the other side of most of what is ahead of him. As much as you love him and want to help, somethings are best said guy to guy, and from someone who has lived in the same deep hole as you.
[/quote]----Please try to get your BIL to take advantage of Brian's generous offer. The guys on this forum have a strong male perspective in dealing with oral cancer and its lifelong implications. They won't sugar-coat things, but they have been there, and know the demons. Plus if your BIL is a BSG (Battle Star Galactica) fan, it would be an added male-bonding bonus! grin


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
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im so sorry to hear of how badly ur BIL is taking the news. the diagnosis is an overwhelming feeling. it changes ur whole life instantly.
but there are so many that have survived, not only higher stages of cancer, but also having it two and three times...they are on here. it is not a death sentence. it is a fight for ur life.
my hubby is one that after getting a 20% survival rate, kicked its butt and is now showing no signs of cancer!

the recorder is a great idea. i had pen and paper and wrote EVERY WORD down that i didnt know and looked it up later. this helped alot. this site also helped tremendously although he hasnt ever gotten on here, but i tell him about all the posts, and it helped me be informed about what to expect.

maybe making that trip to go to a doctor visit will be able to clear alot of the miscommunication up.

hang in there...


Teresa
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CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
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Scot

I am so sorry to hear of the problems your BIL is facing. Sure he was dealt a bad hand but that does not mean he cant get thru this.

I will not go into too much detail about my situation, but I will breifly tell you if I can do it so can he. Im the biggest wimp around. My story is OC 3 times in 3 years, last time was Stage 4 and my jaw was removed. So many operations that Ive lost count, feeding tube twice for over 2 years. I spent 2 months in the hospital and Im still recovering.

The doctors giving just chemo does not make sense. Chemo will not take care of OC. Sometimes people have radiation alone, but never chemo alone unless other things are going on. If your sister isnt able to process everything due to being so upset then someone else also needs to go to his appointments. They can write things down.

As far as your BIL's being suicidal, he needs help. If your sister isnt able to contact someone at the hospital for help with this then maybe she should just go there in person. There must be some type of support group or someone for him to talk to there. What about a family doctor? Many OC patients use anti-depressants to get thru the horrors of this. Im sure it isnt just OC patients that struggle, probably any cancer patient would need some help.

Hopefully where your BIL is being treated is at a cancer center where they are familiar with oral cancer. I know you are far away, but it might be a good idea to take a trip to visit. If for nothing else, to ease your mind. It would make everyone involved feel better. That would show your BIL how much you care for him, your sister would be very happy to have someone to help.

Now is the time for your sister to round up all the friends and people who can help. Best of luck with everything.


Christine
SCC 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 smile
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