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Desparate need to vent!

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Ok... so if going through cancer, surgery, chemo, depression, fighting with insurance, etc isn't enough now my wonderful self-centered sister and her husband are trying guilt me into the genetics testing.

I don't know. I'm just not sure one way or the other if I want to do the testing. My next check-up is in March and I have agreed to meet the genetics counselor so we can discuss my concerns.

Now, my sister calls tonight and is just in a panic because her gastro wants her to have another scope (had one a year ago when I was dx'd) and it's going to cost them *gasp* $2000 to do this again and they just don't know how they are going to afford it and want to know if I have done the testing yet so that they can decide not to get the scope.

Not to mention that the first time they scoped her, they only did the LOWER. I told her I would have some SERIOUS questions about WHY THE BLEEP they only scoped her lower. Plus, she is thinking it is going to cost more to do the whole. why???

All of my doctors have said that her getting scoped every year is way overkill. Considering that I have one more scope on the year and then they are going to reduce mine down to every 3 I would agree. I mean, my cancer started as a polyp that took around 5 years to turn cancerous and then another 5 years until I was diagnosed. Not that I recommend this as I was also stage III but STILL... EVERY YEAR?

I'm also afraid that if my genetics counseling shows negative that they will totally blow it off alltogether and not be worried about it at all and not get tested.

I'm so frusterated. They have never ONCE been concerned about their baby sister having to go through cancer and contemplate what would happen to her little girl if the cancer won. Never once have they been concerned with how much it is going to cost us... every year. Never once worried about how many frigging tests I must go through. My getting cancer has been nothing but a big inconvenience to them. Never have they worried about the fact that I drive four hours one way to get to a good doctor for my exams. That I have to fight with the insurance companies now to have them cover my two PET scans that have been done and that if I am denied I have to come up with $8000 to pay for them.

I am so beyond angry I just don't know what to do. Basically, I told her that I would get a second opinion and that I would raise some questions as to why the first scope was only of the lower. I also told her that this would have to be a medical decision that they would have to make.

I just feel like it is so unfair for them to be putting this on me. That I should feel guilty that it will cost them medically to do these tests. To top it off, I can only see what it will do if I decide not to go through with the genetics testing.

Thanks guys, for listening. It's so nice to have "family" that understands what is going on.

So angry I could cry,

Tricia

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Oh Tricia...tsk!tsk! If it were me I would tell them to show some respect and compassion...you never asked for cancer to hit you...you have no control over the cancer nor control if it was/is genetical. So listen carefull to me. There are a lot of things we can and cannot control in our daily lives. We all know the effects of thalidomide years ago...my point...well...I bet in the future some smart scientist is going to say we should never have been using microwaves. On the other hand think of all the radiation fallout all over the world from atomic testing. Then there is the "smoking"...yup...I agree, not especially a good thing for anyone(and I smoke...and have a lung capacity of 94%----PROVEN)
Every single thing we eat and drink these days is probably a great candidate for causing cancer.....un-natural additives...you know the rest, I need not say more.
Here's some facts. I have/had bowel cancer, was very physically active all my life...drank little...but yes, smoked(although never remember smoking thru my arse....scusey for that)....how come cancer never started in my lungs?
My mother never smoke or drank....yet died 7 years ago with a brain tumour?
The point here is that I REALLY think that I inherited cancer. I NEVER blamed my mum for it!
Your sister is responsible for her body, her health, her lifestyle. If she has a problem with the genetic issue let her deal with it. I have told my children that they must make the decision to be tested...as they also control what they eat,drink etc. I would be horrified if they tried to impost any blame on me if they contracted cancer genetically from me(they would never feel that way I am sure)
We have some control over our destiny and our lives....but if much of cancer is genetically transmitted............YOU ARE NOT AT FAULT. You are NOT responsible for others nor should you be made to feel guilty of the cost.
Tricia....sometimes no matter how much you love your family you have to take a stand...and at this time you come 1st. They need to make their own decisions and have absolutely no right to enforce you to do anything. Sorry for being blunt...others here may not agree with me...tough********.
My mother had no control over her genes!!!!!!!And here's the interesting thing. Even if she had been tested(was never advised to do so), what difference would it have made?Back then the docs could have said her cancer could possibly be passed on to us kids....if I had been told that or she told me that I would have sought out advice on testing back then, whether or not her cancer was a genetics thing.
Even if you get tested, what difference will it possibly make. They already know you have cancer...so they must be the vigilant ones to see if they may have it or be possible candidates, whether it be by genetical or other causes. You spending the dollars will not help you. And not getting yourself tested is not in my mind selfish! THEY must make the choice themselves for their own peace of mind!
huggs to yah Tricia, Ross and Jen

CAMaura
Posts: 719
Joined: Feb 2005

Oh Tricia - I am so sorry for your frustration...maybe we are sisters and we don't even know it! But...no genetics testing required!!!
Let's just say that I have had more help and compassion from my boss - a true friend and the person I called when my first diagnosis-CT results came back - than my family....and things haven't cahnged much in the last year and a half. But I am NOT complaining; with him and my small circle out here in CA, I have a great life.
I truly don't know whether it is denial, fear, or some sick thought about jealousy or someone receiving attention....uhhh, like we really want to be poked and prodded and receive heavy-metal injections... but I can honestly say that I feel your frustration.
One thing - for sure - is that they do NOT need you to be their sounding board. Lord knows you don't have all of the answers...you are probably still trying to figure out your own care. They are big people who have big brains (and I guess big egos) and you are not part of the problem. I repeat - you are not causing a problem for them. They are causing drama because of their own fear and ignorance of the situation.
Take a breather and turn your answering machine off for a few days. I mean it. They can get friggin' genetics testing - and pay for it - it is that important. They can also look up the stats about heritability - and they can clean up their act nutrition-wise. They can talk to the docs and they can sit with their own fears. Then maybe they will skim the surface fo what your situation might be and what you have already endured; that is IF they accept the task of thinking deeply. I am not sounding mean or asking you to act in a horrible manner. I am mearely asking you to take care of you.
Please know that that I am aware that all of the drama here is incredibly stressful to you. I know - my family blames my cecal cancer on me! Well, my surgeon didn't - and that means more to me!! And my oncologist didn't...and my gastro didn't...they are the people who make differences now - along with my friends. My docs are still stunned: Is it environmental? Is it geneitc? I am a strange case fro them, but in the long run, it really doesn't matter....
I am not bitter, but I have been frustrated. I certainly know that i am not alone - and you are not as well. People don't know what to do so they do what comes naturally....if that is selfsih behavior, well there you are!!!
Just understand that fear brings out a lot - A LOT - of crappy behavior......
Tricia - your sis can get her own second opinion. You are responsible for YOU (and that is plenty!).....you do not need to have the world on your shoulders.
Please tell them that they need to take responsibility for their own care: they need to do the research and get a handle on the fact that you are not their caretakers or their caregivers. Once they understand that you have set your boundaries, they will have to do a little work.....Let them know that you are "off limits" to any form of bullying.....please be firm and take care. Post and vent anytime....
Take care and all the best - Maura who sounds like the strongest of cancer patients, but I'm not...and wisdom has been born of tears; but it motivates me to NOT let anyone push all over someone else in a similar situation.

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Tricia:

Yup, you have every right to be upset! I am so sorry you have to deal with this! In spite of all that you've gone through, you still care profoundly about sister's well being, enough to be upset about it, it's so good of you! But you know what, some people just can't be helped no matter how fired up you are. Perhaps it's best to tell your sister to take charge of her own health and do whatever she thinks is right for herself.

There is a well supported genetic cause to my colon cancer - I have HNPCC. But guess what, I am the only person in my extended family with it. Mutations happen and nobody knows who, when and how they happen. So, tell your sister that science isn't on her side to guarantee that she will/won't get what you have or don't. It's very screwed up thinking on her part.

Tricia - take 12 deep breath, for each, count to 4 on inhale, hold for 7 counts and exhale in 8. If you don't feel better afterwards, repeat or pick up the phone and tell your sister that she's upsetting you. Give me her email I'll tell her she's misguided on the whole genetics thing.

Don't upset yourself Tricia - it only weakens your immunity which you need to fight cancer with. But you have done the right thing venting to us.

If it makes you feel better, you can vent to us every day.

~~~Big healing breath of fresh air~~~

Cheers,
JADot

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Hi,

I am so sorry that you are having to go therough all this. Like you said, as if the cancer wasn't enough. I am the youngest of five, with no history of colon cancer in my larege family. My siblings were told to get scoped and then they don't need another for 5 years. Your sister needs a second opinion. Yes, she should have had a full colonoscopy, but then she doesn't need yearly ones. Is she paranoid about getting cancer.

I chose to have the genetic teating done. But I did it for my children and not my siblings. I would not want my children to have to go through what I did. I also would not my siblings to go through it also, but I was told the scope was enough for them.

My genetic testing was negative. But I have instructed my children to make sure they are tested and followed closely.

I think you need to give yourself a break from your sister and worry about you.

I am sending you a hug and positive vibes. Take care.

Maureen

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Suggest that she go for the genetic testing, if she is that concerned and that you will be happy to sign a release that gives the genetic counselor access to the info they would need to help determine her risk.
Genetic testing does you no good. After all, you have cancer...does it matter how you got it.
Genetic testing is for your sister...if it's important to her she can go for it. Or she can go for colos every 3 years for a while.
Mary
BTW...if you're having trouble with the insurance company for scans, who's to say they'll pay for genetic testing. And since the test is of no benefit to you, why should you pay?

Having said all that...I did go for genetic counselling (still don't know if my insurance will cover it)...however I have a daughter (21 years old) and I wanted to know if she should be scoped at age 25 or 35. It's worth the money to me.
Good luck!
Mary

alihamilton's picture
alihamilton
Posts: 348
Joined: Jan 2004

I agree entirely with Mary....let your sister do the genetic testing...you have enough to deal with, don't let her make you feel guilty at all. I can understand your anger, I would feel the same, I am sure, but do not let her impede your progress...that is all that you should be dealing with right now.

Take care,

Ali

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

((((tricia)))))

there's a hug for you. You really don't need that bad juju from your sister on you!!

Maybe the gastro wants her to do another one that's complete this time rather than just lower. then she can get on the every three years plan. But to expect YOU to go through more testing for HER is just ludicrous.

I understand your frustration. I have been on both sides of this issue in a way.

When my sister was dx'ed with intestinal cancer 13 years ago it never occured to any of us to even get scoped. Looking back this sounds stupid, I know. But she was young 29 at dx and had been sick for years being misdiagnosed, and every single doctor told us how rare her cancer was. With no previous family history we just trusted what they told us. So not one of us got scoped. It NEVER occured to us to get genetic counseling.

Fast forward to my own dx of sigmoid colon cancer at 39. I was offered the genetic testing but declined. I have 5 kids. They will just have to be tested. Period. End of discussion. "Genetics" or not. Plus, I didn't want that info to somehow come back to bite me in the butt some day. Or my kids.

Now for the sister issue. I have a sister who NEVER once voiced concern for my getting cancer. Not once. Notta. Nothing. No compassionate response. She only fussed at me that she found out that I was going through testing from a family friend. (my sister lives in France and I failed to pick up the phone and call her while my life was falling apart. Oh gee). So while everyone else was rallying around me and my family she was having a tantrum and stamping her foot at me that I wasn't handling this how she wanted me to!

I had to walk away from her bad vibe. I needed all my strength to heal. I found that I had to do this a few times with a few people in my life. Some took care of it themselves and abandoned me when I decided to not do the chemo. But good riddance! Who needs them!

Anyway....all this just to say, stand firm in your boundaries. Let her wring her hands but not on your time.

You don't have room for guilt. don't allow them to try to dump it on you!

peace, emily who is tougher post cancer

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dear Tricia,

I am so sorry that you are having added stress in your life while you are going through so much just dealing with your cancer.

Please do what is best for you. You are your first priority right now. Focus on complete healing for you!

Sending positive energy and prayers your way.

Hugs,

Kay

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carolun
Posts: 1
Joined: Feb 2006

I defently understand what you are going through. I moved to another state because my sister wanted to take care of me. It turned out that all shse seemed to be after was my disability check. She put me in a nursing home because I was too much to handle. Then my daughter moved to ohio for the same reason. It does seem like your and my family seem to be put out by the fact that we have something serious and its in their way. what ever happened to family being there? This disease is hard enough to deal with without family acting like jerks. dont let your sister put you through a guilt trip. Sounds like all you are trying to help is help her and she is looking for an excuse to give you a hard time. Right now just worry about yourself. you cannot control what she does.

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