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#19312 01-12-2006 06:22 AM
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CindyD Offline OP
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Hi, My dad, Dennis, is 57 is currently at the beginning stages and starts Chemo and radiation next Tuesday.

He had surgury to remove the tumor on the side of his cheek, 3 lymph nodes and a little of the top and bottom of the lower jaw. He then had to get all of his teeth removed awaiting for his treatment to start.

There is so many questions that we (sister and I) that we have. We ask our parents if "they know what stage its in" "what are the margins" "will you need blood transfusions, (we can give)" but our parents just want to do as the doctors say. They havent gotten a second opinion on any of it.

I ask if I can go to the next appointment to listen what the doctor says and his reply was "I don't want to know so, you shouldnt either."

Any thoughts on this passive approach to chemo/radiation/cancer? My mom is basically doing whatever my dad chooses and is being very passive and not keeping it together. I want to help but, don't know how to get thru to them. Would love some advice.


Diagnosed in October 2005. 35 weeks of radiation and 3 chemo treatments. 6/21/06Right partial mandibulectomy in the right mandibular gingiva. T2, N1, MX Postive Margins. Aug. 06 came back and now passed away 4/8/07
#19313 01-12-2006 07:01 AM
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Dear CindyD,
I'm sorry that your dad and your family have to deal with this nasty disease.

While you will receive a lot of information and support from members of this board, I think the most important thing to do is to make sure that your dad is being treated at a Comprehensive Cancer Center (you can learn more about them and where they are located on the OCF site). CCC's take a team-based approach to treating cancer and are up on the latest treatment recommendations and protocols. You would be doing your Dad a great service to get a second opinion from a CCC, if he's not being currently treated at one.

Second, somebody in your family will need to advocate for your dad. To get the best treatment requires a persistent and aggressive approach to getting answers to all your questions and insisting on timely treatment.

This is a case where ignorance is not bliss. The more informed you can become, and the better the questons you ask, the better the treatment.

You should feel free to ask as many questions here as you need to. Everyone will help. Best, Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#19314 01-12-2006 08:54 AM
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Cindy,
You might look into arranging to at least have a telephone conversation with the doctor. I know that when my mother had breast cancer she was not able to deal with knowing the details or making decisions - I had to do that for her...and I did much of it through phone conversations.

This is definitely a situation where you want to be armed with all the information.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#19315 01-12-2006 10:46 AM
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It is imperative that someone knows what is going on with your Dad's treatment, if he is avoiding doing so. As has been said already, ignorance is not bliss. There may be points at which decisions must be made, or a choice between two options, and someone needs to have the information to make the call. The OCF website is excellent, but you also have to ask ask ask the doctors -- What is being done, Who is doing it, Why is it being done and What will be the result?

We got very informed up-front and asked lots of questions (which the doctors did not mind) and it actually made a difference at several points in my husband's treatment (choice of chemo drug, dental options, etc.) For example, unless teeth are in really bad shape and cannot be salvaged, most of the top CCCs do not remove teeth before radiation -- or remove as few as possible -- because this can lead to post-treatment problems. Also, is your dad getting a feeding tube? If not, is there a nutritionist to help him as he will face a lot of problems eating during radiation, and maintaining weight. Many many issues which should be on the table before the "show" begins.

I agree you should go with your Dad and speak to the doctor, or at least call him/her for a phone consult.

There was a study published a few years ago (wish I could find the reference) which concluded that the patients who were the most involved in their cancer treatment did the best, in part because of the well-being which comes from feeling somewhat in control.

Good luck,
Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#19316 01-12-2006 02:12 PM
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Cindy, you are in the right place for information.

I can relate to your parents complacency regarding the disease. Details, when we get older, are information overload that, to us, are not relevent. We geriatrics are complacent about such things as stages, margins etc. They are just words that inform others and we are only concerned with "What kind of quality of life will we have for the remainder of our days?"
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#19317 01-12-2006 04:16 PM
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Cindy, am putting my "2 cents" in here also. Unless you Dad is one of the luckiest guys in the world, the next part of his treatment will be the hardest part. [and hard on your Mom too] Chemo and radiation will probably make him pretty sick and Mom is going to have to do alot of caregiving. The better informed you are, the more you can support them both. Do your family a big favor, and meet his Docs and get involved. Sincerely, Amy


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

:
#19318 01-12-2006 06:04 PM
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Cindy, This is not a time to coddle your parent's feelings. We are not trying to figure out a diplomatic way to tell dad that his Levis aren't zipped. Cancer kills people. Not everyone survives head and neck cancers - in fact, many don't.

I advise you and your sister to start with your mom and help her get past terrified, get her feet on the ground and bring her up to speed. Some choices need to be made for him and soon. Don't let "ole doc Peterson" do it his way - there is too much at stake.

Find two or more docs who have treated THIS type of cancer before and are up to date with their research. You will not get the best care from any medical person without asking lots of questions, talking about OTHER options, investigating OTHER docs, etc.

I notice you are posting from Illinois. University of Chicago has one of the best head/neck cancer treatment programs on planet Earth. If you can get him there, do so. At least call them. You can even schedule an appointment online. Don't put this off.

Come to this site often. Read everything here - don't miss the blogs on the information pages - much of that information is very up to date. Get your mom to come here and read. Get your dad to come here and read. I am 57, had all my teeth pulled before treatment, went through lots of chemo and radiation. I can talk to him and tell him about it. Many others here can too. He can talk to many of us by private email if he prefers. I'd be happy to visit with him. Its time to get him involved. Let us help. This is a battle and cancer has the advantage. Get mad, get involved, get a team, get focused. Be strong. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#19319 01-12-2006 07:02 PM
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Cindy,
my oncologist (who is the head of the department)tells me that there are 2 basic kinds of patients. 1. "doctors" who want to know EVERYTHING about the disease, statistics, treatment options, outcomes, side effects, etc. - he also stated that they typically fare worse (although I fall into that category and will debate him on that and I am sure that Gail will also) and 2. those who don't want to know ANYTHING and just go along with whatever program is doled out.

More often than not its the caregivers and not the patients who are asking the questions on the forum.

They are not exactly at the age where you have them declared incompetent and take over as their medical advocate. You may be forced to respect their wishes. They probably respect you and your sisters busy lives and don't want to create, what they may think, is unnecessary worry and disruption to your lives.

I agree totally with Sheldons post (ssax) and everyone's responses for that matter. Look for a quiet moment with your mom and offer your help in any way without being pushy or too inquisitive. Don't let emotions into this - that is exactly what they don't want - for you to suffer. You may have to ease into this very carefully.

Another approach might be to find out the doctors name and have an "off line" chat with him (without your parents knowledge). You will have to use some stealth here.

Many people don't get second opinions and it sounds like they are hitting it with all they've got - surgery, chemo and radiation. I would guess the staging to be III or IV based on what you have shared and the treatment protocol.

About mid way through radiation the going can get very tough and that will be the time when your mother will need some help.

I was 55 when was Dx'd and I am 58 now. I still want to learn all I can, if for no other reason, to help others who have the desire to know what their options are.

By the way, I was late staged (I REFUSED to let them touch my teeth) and a 3 year survivor so don't let the statistics or staging give you any additional worries.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#19320 01-12-2006 08:26 PM
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Even 'tho it seems too late for a CCC to be as useful as it could have been (the teeth are gone for instance) and our function here is not to be Monday Morning Quarterback, having a second opinion from a CCC will keep the current providers on their toes.

One problem is that altho' a CCC seems the better way to go, we all seem to be rushed by that decision point too fast to have recognized it as one. That was certainly true in my case.

Sounds to me like you parents are in denial (and I'd guess that your father is usually the decision-maker and stronger personality) and keeping you and your sister out of the loop likely seems to them as a way to avoid more problems -- Unfortunately, as you know, it's really only going to create more of them. Having you both in on everything from the start means that you are going to be able to provide support to your mother.

There's a lot of work ahead for all of you to get this behind you and the quicker you get organized, the better. I have been watching several families go thru the Radiation Oncology Center where I am getting treatment and it's clear that they are all in good spirits and working together.

Despite the fact that your father is the one with the cancer (just having all your teeth pulled is major trauma to the body, let alone the rest of these debilitating procedures), a large share of the load will fall on your mother because she's doing the caregiving and keeping things running).

If, in the end, they still want to keep you both in the dark, then just grit your teeth, dump the feelings and get on with helping by doing your "uninformed" best. You're doing all the right things so far to get yourself informed and I believe you will continue to do so.

Pete


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
#19321 01-13-2006 02:55 AM
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One study which relates to this issue (of patients feeling they have some "control" over what's going on and subsequent survival from HNC) is: Allison et al, 2003, J. Clinical Oncol. 21 (3) where they found optimistic patients and those living with someone (that is, having a support base) were significantly more likely to make it through the first year after treatment.

I have yet not found the paper which indicated that patients wh asked questions and were aggressively involved in their treatment fared better, but will post it when I do. However our doctors at Hopkins have said *repeatedly* that patients who "do things right" -- by which they mean getting informed up front, asking the right questions, knowing what was going on (and why) and who comply carefully with recommended measures to reduce side-effects consistently do better -- both as regards making it through treatment and in recovery. Note that this does not include the patient who resists (that is, is in aggressive denial) over the diagnosis or the treatment -- these fare worse because they do not follow advice and would be considered "pessimistic" by Allison and his co-workers.

In any case, lots of good advice above -- the most important of which is to *get involved* -- you will all have to be pulling together to get your dad through this ordeal.

Best luck,
Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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