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#51372 12-29-2005 05:35 PM
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Good evening, all...I am new to this list. My father in law has just been diagnosed with stage IV base of tongue carcinoma with cervical mets. He is 75, has a stroke history which has left him with an unsteady gait and no use of his right hand. He lives alone right now with his cat not far from me and his son, my husband. He had a dental eval yesterday and will have to have all his teeth pulled before treatment begins, which the docs are recommending radiation plus chemo. I am scared to death about what lies ahead. My curse (!) in this situation is that I am also a social worker...I work with blood cancer patients now, but have spent the last 18 years as a hospice social worker, which makes me more "tuned in" to talking about end of life care. However, when I discussed taking a palliative route with the surgeon who did the biopsy, he looked at me as if I had 3 heads and said they would be pursuing full blown treatment. He will be moving in with us, which frankly is freaking me out, and I have no idea what to expect. My husband and I both work full time, and cannot quit our jobs to take care of him. How sick is he going to get? Any thoughts on what to expect? Am I crazy or selfish for wanting to just TALK about other options besides chemo and radiation? Thanks, Wendy

#51373 12-29-2005 06:18 PM
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Wendy,

I'm so sorry this nasty disease has hit your family. I'm also not entirely sure I can answer the question about how sick your father in law will get since from what I've read here it seems to vary from person to person. I can say with some certianty he will most likely be feeling pretty miserable for several weeks and he may be unable to eat enough calories orally so he should get a stomach tube inserted before his treatment begins (this is espeically important if he doesn't have much extra flesh on his bones).

He is most likely going to need someone to take him to and from treatments, perhaps not at the beginning, but as time goes on and the side effects are worse (and he will likley be taking prescription painkillers). The chemo may make him unable to keep things down for some of the time (or he may be fine).

In terms of care at home, when I went through this I didn't need someone with me round the clock, even at the end of treatment, but I did need someone checking in on me to be sure I had what I needed and was tube-feeding myself and tkaing all the other meds (painkillers, antinausea, laxatives, stuff to break up phlegm, magic mouthwash, etc.) on time when I should (because I was groggy and exhaisted and had a very hard time keeping track myself). I also needed someone checking my temp because I had some sort of infection on and off and no white blood cells thanks to the chemo. I also lost my voice entirely for three weeks (the last two weeks of treatment and a week after) and I didn't like being alone during that time because if I was really sick I couldn't have called for help--this is a contingency you may want to at least prepare for though not everyone looses their voice.

In addition, your father in law obviously has some other health issues already I didn't have,which may mean he really needs someone with him round the clock for the last weeks of treatment anyway. Again, I think it's good to be prepared for that possibility.

The good news is people do recover from this nastiness at the other end, though it can take several months and that he has a real shot of getting over this disease, even at Stage IV, espcially doing the chemo and radiation at the same time. In my opinion, he needs to fight it right now and it's a hard fight-- he deserves the support he needs to get through the treatment, it seems to me it's too early to be talking about palliative care just yet. I know this is a very personal decision, though, and I suppose at 75 I might feel differently about how much of a fight I wanted to wage (somehow I doubt it though).

I found this site incredibly helpful as I went rhough treatment. As you read more here, you'll read a lot of other peope's experiences and get a good idea of the variety of things you can expect. People are also very supportive here and you can come here and ask questions or just vent anytime you need to!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#51374 12-29-2005 07:04 PM
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Hi Wendy, welcome. Nelie has made good points and I want to stress that the treatments affect some worse than others. He might do quite well and get through easier than some. Try not to freak out It won't help. Take each item one at a time and you will get through. I personally don't think you will have to alter your lives too much if at all I think it is good that he stay with you for the treatment time for the support.
While I don't think you have 3 heads, letting this cancer run it's course without treatment is not a good option. If he is otherwise pretty healthy he could have another 10 years (or more)

Take care and come back for answers!


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#51375 12-30-2005 07:15 AM
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Hi Wendy,
My only other comment is I would get a second opinion on having ALL his teeth removed unless they are in terrible condition or he has severe periodontal disease. These used to do this as routine 10 years ago but no longer do so. If it is absultely necessary, so be it, but losing all your teeth just makes i that more difficult to eat after treatment. Does the RO also think it is necessary to pull all the teeth? Is he being treated at a majpr cancer center?

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#51376 12-30-2005 11:50 AM
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Thanks for the responses...we see the RO on Friday the 13th...HA! How's that for a good day?
I did not mean to imply that he should get no treatment...my understanding is that that would be awful and the tumor would choke him. However, I would like to get a good benefit vs burden discussion about treatment...is that something I should expect from the RO, the medical oncologist, or the ENT doc? Thanks again, I can see that this is going to be a valuable source of info and support..Wendy

#51377 12-30-2005 12:03 PM
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Wendy,

Welcome and you are not a three headed monster! Your F-I-L is lucky to have someone with your knowledge in his corner. As you said, being in the health care business is both a blessing and a curse. It will help that you will be able to translate a lot of the medical information for him, or make the doctors make sure he understands exactly what is going on. Like you, I have always worked in hospitals and had access to tons of information which has been of benefit to my family but a curse to me in that I always assume and prepare for the worst and am surprised and pleased with better outcomes.

It may be hard for you to do what social workers do in these situations, work out the best scenario for the patient, and you should have resources available to you so it doesn't all fall on you to do. Utilize the lists you have of in home caretakers and visitors, plan for meals on wheels to visit daily during the week and contact the ACS or churches to work out a schedule of getting him to his treatments. This is your turn to shine, and you will be glad once you get past the initial shock that you have the knowledge you have, and use it for yourself and your family.

I have been the advocate for both my parents in their declining years and found it helped make up for all the years of torment I gave them as a willful teenager! It isn't your dad, but it will greatly help your husband for you to step up and make sure his dad gets what he needs, and know it doesn't have to come from you personally.

Sincerely,
Lisa


SCC Tongue T1N0M0\Dx 3-10-03
Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03
3 Year Survivor!
#51378 12-30-2005 12:24 PM
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Lisa..thanks so much. It is definitely a blessing and curse to be in the health profession during this. All you know seems to fly out the window when it is your own family, and all I know is end of life care! This diagnosis and treatment stuff is not my area. However, you put things in perspective, and you are right..I do have the knowledge and expertise to put resources in motion. The hardest part so far, and we are only just starting, is that Bill looks to me to make his decisions and interpret information. It's a difficult position...I have told him that he needs to be educating himself about his disease, and that while I will help him process the info from the docs, I WILL NOT be put in the position of making decisions for him. Already, in the few appointments we have had, as soon as the doc starts talking, I see a glaze come over his eyes. He tells them to talk to me.."she's my manager." My husband has been trying to get him to learn to use a computer, way before all this happened, but he is resistant and with this has given it up. Thanks for the support...Wendy

#51379 12-31-2005 06:32 AM
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Wendy, consider that Bill's mind is swimming with all of this. (and the stroke may have affected his processing information) Don't feel like you are having to make decisions for him but he is reaching out for something solid to hold on to. You can be a part of that.

Really there aren't so many things to decide anyway.
To treat: yes.
To treat at the best possible facility: Yes absolutely!
To use radiation: Yes.
To use chemo: Probably (better results, worse side effects.)
Surgery: No unless strongly recommended by his medical Team (not just ENT)
Amifostine: Maybe but many people have problems with it.
Pain Meds: Yes but watch carefully for mental changes.
PEG tube: Yes if he can't afford loosing weight.
Tooth extractions: NO! unless they are in poor shape. Have him get to a dentist familiar with radiation and prefers keeping healthy teeth to help with this decision.
Counciling for all of you: Would not hurt.
Talk to Hospice: Yes! they can help with plenty besides end of life.
Accept this as a Life Event: Absolutely, you will find this to be a fabulous opportunity to grow if you are open to it.
Have Hope: YES!

He can do it and you can too. smile


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#51380 12-31-2005 11:10 AM
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I'm glad you're willing to help him process the information, Wendy, It can be overwhelming for some people. The glaze may be creeping over his eyes because it's so scary, too, at first. He's lucky to have you there to help.

And do do what Lisa suggested and start putting together a resource list of people and organizations that can help with some of what he'll need. The you just need to coordinate the other people who are coming in to help--not trying to do it all yourself. Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#51381 01-03-2006 05:53 AM
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Wendy -
Welcome to the site. The information everyone is so welling to share on this site is priceless. It sounds like you have a very realistic picture of your F-I-L's immediate future. My husband is batteling Stage IV SCC BOT and his treatments have been grueling. I took the approach of making sure Ken had all the information available on all of his options - then HE could make an informed decision about treatments.

As a social worker, I am sure you are very aware of all the resources available to you - use them! If he chooses to undergo treatments, ask his docs about having a home health nurse visit. I have not taken any leave from work through Ken's treatments (need the paycheck!) - so the home health nurse visits really helped me as much as Ken. Just knowing that they would visit and check on him allowed me to stay focused at work.

Having any seriously ill family member in the home will cause stress. Don't ignore this. Keep the communication open between you and your husband. Take time away from the house for some R&R - even if it is to escape to a movie. Oral Cancer is not just physically grueling - it is mentally exhausting for everyone. Take care of yourself and you will be better able to help your father in law. Carol


Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.
#51382 01-04-2006 04:51 PM
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Wendy
Welcome You found a great resource on this site. We never ever would have gotten through Bob's treatment without the people here. There seems to be no question that is unanswerable so ask away or vent or whatever you need it will be here somewhere. From treatment issues and info, to peg tube, smoothie and soft food recipes, to humor, tears and hugs the OCF family has it.
Regarding being his manager Yes he is looking for you to interpret but I doubt that you will have to make all his descisions. Bob was niether elderly or impaired in anyway still he relied on me to be the one to ask questions and gather information because he was overwhelmed with the physicality of exams, treatment, meds etc...and was really not able to process much during Dr visits. He is also computer savvy but couldn't bring himself to do the work to access this site. I took notes and participated here getting information then we would discuss what was going on and he would make his own descisions based on the info when he was comfortable and clear headed. He also needed clarification on instructions given by the nurses etc when he was being treated. I didn't go with him to treatment cause I too had to work but found his entire treatment team to be very willing to talk to me on the phone and help me keep things straight. It is not an easy road ahead but if you take it one step at a time you'll eventually find yourself out of these woods. Peace Denise


Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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