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Compromising my positive attitude

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Hi everyone,
Haven't posted in a few days. Decided to seek treatment at Moffitt Cancer Center in Tampa, for my liver met. Days of getting records, scans, biopsies, you get it. Anyway, the reason I am posting tonight is I need some feedback. My half-sister was diagnosed five years ago with rectal cancer. She had surgery, radiation and chemo. She was NED for one year. Metastases to her lungs has had her on chemo for three years. She has her good days and bad. She is tired and I understand. I have tried from the time of her DX to be positive and encouraging.

I had a phone conversation with her this evening and it left me very depressed. She said that she had spoken with her oncologist regarding my DX. She told me that he said was it was "very bad" and expressed his sympathy. According to him my prognosis was not as promising as hers has been, since it has gone to my liver. I don't want to not talk to her, but it seems all of our conversations go this route. It SO undermines my positive thinking. That is one point where we definitely differ, I am a half-full kinda gal. I know she loves me and doesn't intentionally say these things to make me sad, but it does. What do you say to people (especially close family and friends) that just don't get that you believe that you can beat this damn disease? I will certainly appreciate your comments, and thanks for letting me vent.
Warmly,
Joanne
Thoughts become things - choose the good ones.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Why is your doctor sharing personal information with her?? I would be ticked if the doctor was telling someone my prognosis, other then myself. My father in law told me he has a friend who has had liver disease now for like 9 years, and still going, so yes, there is always hope, and don't lose it because of what she said, there are too many miracles out there, why can't there be more. She has alot of nerve to even be telling you all this, who does she think she is? I would really be going off on that doctor. Stay strong, no one knows when we go, not even the doctors, they are wrong alot....

Hugsss!
~Donna

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Your passion always makes me smile. It is her Dr. that she was talking to, about me. We live in different cities in Florida. Because we have both been stricken with this dreaded disease ( her with rectal and me with anal, go figure) she feels the need to share the journey.

Thanks for the encouragement. We are all individuals, not merely a statistic.
Warmly,
Joanne

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

She doesn't even know you or hasn't even examined you at all then, she doesn't know what will become of you, just because it's the liver? I've had Stage 4 with multiple mets to the liver for almost a year now, and thought I'd be gone in a few months, but I wouldn't even worry about what that onc said, she isn't yours, and if that's how she feels when she hears about the liver, and doesn't try encouraging options, I'd find me another onc, I wonder if that onc even stays on top of all the new meds and technologies that are out there now. Keep that happy spirit and just ignore what she said, she doesn't even know you.

Hugsss!
~Donna

AnneCan
Posts: 3692
Joined: Oct 2009

If it is her doctor, rather than yours, I don't know how (s)he could talk about your prognosis. It is really difficult to understand why people say the (stupid) things they do! Maybe she was trying to get information from you by saying those things, thinking you would either confirm or deny what she said. I have found I really have to limit my time with any nay-sayers or negativos. It is difficult because she is family. Sometimes email conversations can be easier with these types. Good luck with this challenge!

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

i am a stage 4 with mets to lungs and liver i had surgery in 07 and they took out half of my liver and the cancer came back in the liver.. now i am in a study. i have a wonderful life and i am up and about all day long and i really beleave it is because of my positive attitude. like everyone on here says no one knows when we are gonna go so please dont let go of being positive and enjoy your life. march 1st will be 3 years for me and i feel better now then i have in years.. so hang in there and when you need to, come here and vent and let it all go and you will feel much better after i know i always do. take care tammy

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Simply tell your sis that yours and hers diagnosis' are completely different and that you plan on beating yours and hope that the attitude that you have rubs off on her...Tell her that you have and want to and will keep a very positive attitude and that as much as you love her hope she does the same, and don't take no as an answer. Chin up....Love and Hope, Buzzard

Pam_W
Posts: 1
Joined: Oct 2009

I am also stage 4 with mets to liver and lung. My liver surgery took care of the mets and has been clean for 1 year. I also had a nodule removed from my right lung this last August. Now a nodule in my left lung has gone hot, it was there when they did the last surgery but didn't remove it because it didn't show hot at the time. My onc is doing chemo but I am looking for feedback from people in my position. My onc talks a lot about quality of life and has ruled out additional surgery.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Her doc is probably trying to her to feel more positive, by telling her
your condition is worse than hers. Neither condition is good..

I said this on another thread, and after re-reading it, it sure sounded
morbid.... but I'll try again...

I feel it's best to come to terms regarding the very bleak future
that any of us have. No-one wants to think about dying. We all
try to avoid thinking about it, by disregarding what the prognosis
might be, and burrowing our heads in the sand.

But once we deal with the cold, hard facts and understand
that we are not immortal; that we will die, just as we were born,
we can finally be more comfortable with living life.

"Keeping a positive attitude" doesn't keep one from dying. If that
were so, I'm sure the celebrities, the famous, the clergy, and the
untold others with a positive attitude would still be alive. They are
not, they have died regardless of attitude. Walking around as if
nothing is wrong isn't going to save you, it might make life easier
for those around you until you drop "unexpectedly", of course.

I have 3c colon cancer. Prognosis is three to five years, average,
and I'm three years into it. I hate it when someone tells me how
good I look, when they never said that prior to my diagnosis.

I may live another few months, or until I'm in my 90s, but I do
not forget that I am not immortal; that my life can end sooner
than I'd care for it to. I try to accept that fact, and I want those
close to me, to understand it also. I don't want anyone to be
shocked when I depart.

If I were in my 90s, those around me (and including me), would
understand that concept, so why not now? Why not embrace that
concept now, and prepare for it?

It's not giving up, it's simply being prepared.

I think of a "prognosis" as a tap on the shoulder; a reminder of
my mortality.... A reminder to cherish what is here and now,
and stop being so sensitive about words typed or spoken...

Life really is, too short.

(Did I say all that right?)

Best of health to all!

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

but they can be a pain too.

I don't know why anyone would think lung mets are better than liver mets!!!!! Mets are mets but ones closest to the primary tumor in our cancer can be better especially liver.

Is she older or younger? Has there always been a competitive nature to your relationship? Sounds like it has to me.

My mother wasn't the most positive person to talk to when I was in the fight. She'd cry and question the docs and everything I said or did so I decided to stop talking to her every few days and went to weekly and then bi-weekly. I can't tell how much better I felt NOT hearing her negative stuff. When we did talk if she "went there" I would cut her off and change the subject.

Finally one conversation she asked why I didn't call as often and I explained that I was concentrating on me and keeping a positive attitude and she wasn't helping me much. She got very quiet and things were pretty touchy there for a few weeks (word is she talked to both my sisters about it and they took my side) until while talking to her one holiday she said some really nice things to me and I immediately hugged, kissed and thanked her. She was really taken back and all I said was I love hearing that kind of stuff, you have no idea how much it helps me, thank you so much.

You are wise to want to keep only the good thoughts!!!!

Lisa P.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

her doctor should stick to talking to HIS patient and not talk about someone he knows nothing about. I have a friend who will call me every few months and asks me "are you sure you're doing OK?" and "I can't believe you're this sick". I'm not THAT sick and yes, I'm still alive. It's like he is expecting me to be worse and is almost sorry that I'm doing OK. I've was dx well over 5 years ago at stage IV colon cancer. I have been on treatment ever since. Mets to the liver and lungs. A bunch of operations and you know what? I'm doing OK and living and yes, I do have cancer.
Some people really are not good at dealing with social issues. This seems to possibly be the case here. I know she's your half-sister but she also sees the glass as being half-full. Her doctor, well he sounds like a total ....

Be well, you certainly can beat the disease and live your life.
-phil

Joanne, I can't believe you "vent" and sign your post "warmly".
What a nice vent
:-)

lizdeli's picture
lizdeli
Posts: 570
Joined: Jul 2009

Joanne,
Her doctor doesn't know anything about you. For starters, you have Anal Cancer, which is very rare. The first colorectal surgeon I saw diagonosed me with rectal cancer. He then said it was probably anal cancer. He added that he had only seen 2 cases of it in 15 years of practice. We left Colorado a week later and went to MD Anderson in Texas where I was treated. They see about 4 cases a week! So unless your sister's doctor has dealt with anal cancer he can't confidently discuss your prognosis, especially not even knowing the circumstances.

Anal cancer can be beat. Don't give up hope, go for the cure!!!!! If you have a chance to go to MD Anderson or some affiliate of, I suggest that only because this is a very rare cancer and there aren't many places that deal with it a lot.

Wishing you well.
Liz

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Phil,
I know that does seem rather contradictory. The only explanation I have is that chatting with this group truly does warm my heart. I suppose it is just knowing that I can post about whatever I want and that someone has been through it or is going through it. There is such comfort in being understood.
Warmest regards,
Joanne

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JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Kathy,
You were responsible for my first smile this am. Love the glass comment. I am going for my first consult with a new oncol. A GI oncol. this time around. I don't know what her recommendations will be. Previous one wanted to try 12 weeks of chemo then see what we needed from there. She may suggest the same, we'll see.
Warm regards,
Joanne

lizdeli's picture
lizdeli
Posts: 570
Joined: Jul 2009

Hi Joanne,
I wanted to check in to see how you are doing? What treatment did the new doctors recommend?

You are in my prayers,
Liz

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I had the repeat PET and 3 level CT last Tuesday at Moffitt. Results Wed. showed and that the liver met is 1.6 cm instead of the 2.0 cm as we were told from the PET at the private imaging facility. Onc. is still suggesting resection if I am a candidate. Surgery consult on Feb. 4th unless he has a cancellation. Surgeon is head of the dept. Hope that means he has done hundreds of resections :). That's where we stand right now.
How are you doing? Hope you had a nice Christmas and that you have plans for a very Happy New Year. Thanks for checking in with me.
Warm regards,
Joanne

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lizdeli's picture
lizdeli
Posts: 570
Joined: Jul 2009

Joanne
Good to hear from you. My Christmas was quiet and happy.

Some positive things from your post:
1. The liver met is smaller than what they originally said
2. Not only is it smaller, but it hasn't grown!
3. Between the two PETs you've had and 3 level CT - nothing else is there, just the spot they need to deal with.
4. Resection sounds like an option
5. Your surgeon is the head of the dept, that is always a good sign.

I like to focus on the positive. I keep you in my prayers and I feel that you are going to be fine.

Wishing you well and may the new year bring good health most of all!

khl8
Posts: 810
Joined: Nov 2009

First of all, your sister should not being saying these things to you. It is almost like she is sticking out her tounge like a child. This being said, we have to remember that this doc does not know you or your case, and is this really what he said? I know that I need to have my hubby with me when talking to the doc so that I get everything right.
Kathy

tiny one
Posts: 467
Joined: Jan 2009

You're sister's oncologist should never have told her about you, he has not seen you personally. Each person responds to treatment differently. Alot of things figure into this. I know that you're kicking cancer to the curb, giving it your all. We're all behind you. I've seen people who were told they had a few months to show everyone they were NED. Never give up!!!

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I know exactly what you mean. I have a friend that thinks I'm tipping over next week. And when that week goes by, she thinks I'll tip over the week after that. She can be very depressing. I know she doesn't mean it the way I take it, and I still talk to her, but I pretty much let things go in one ear and out the other. I decided it's my attitude that matters and not anyone else. I'm also one of those half-full type of gals.

I know I can beat this freakin' disease. It's gonna take some time, but I can do because I'm strong enough to beat it.

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