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2010 NOT STARTING GOOD

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

Well many of you know from an earlier post that in november i had a met removed from my main bile duct and a stent placed to keep duct from becoming blocked through a procedure called an ERCP. just had a new pet/scan and met is back and bigger than before.
met with surgeon today he wants to do a procedure called a modified wipple,(major,major surgery)which may leave me with diabetes and/or other side effects (permanent) and no guarentee of cure of cancer.
I do not want them to do anything that will cause my every day to day life to suck more than it already does.
one problem is a met in the abdominal cavity which has responded well to chemo,was 3x5 centimeters,now still lights on pet ,but not visible on ct scan.
surgeon wants to do a procedure to find out exactly what abdominal lesion is ,because i may not be a good candidate for the wipple if abdomin is going to be a problem.
A met in the main bile duct can quickly block the duct causing liver failure and death.
BAD NEWS.
I tried to talk to onc about being really agressive with chemo,but she wouldn't talk to me until she had discussed the situation with surgeon.
if they do surgery,I have diabetes and /or other permanent side effects,
without surgery........
I feel like I am damned if I do and damned if I don't .I feel TOTALLY SCREWED!!!
In the 4 yrs since recovering from my first huge surgery,the ileostomy,the radical hysterectomy,and the other organs they removed or modified,the only time I have had pain or have been sick,is when they did a surgery ,or procedure or chemo,and now this surgery will make me sick ALL THE TIME WITH NO GUARANTEE OF CURE!!

this is the first time since i got sick that the thought of dying has even entered my mind

BTW I AM BALD,i cant get a good web photo until daytime,but my friend who is a hairdresser,when she buzzed me ,she said i had the most beautiful head she had ever seen!
no bumps,points, dents,moles ,freckles or discolourations.AND THATS THE ONLY GOOD NEWS.
I am crying too hard to continue right now,so I will go.When i can get a good web photo of
"my beautiful head" i will post it.
kATE

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Kate, Sorry to hear the bad news, It really BITES big time!!! Looks like you have some thinking to do. As for me, I dont know what I would do eather. I HATE cancer!!!

love ya
Brooks

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Cancer sucks. Your news sucks. I am so sorry you have to make hard decisions. I do know a lot of people who live with diabetes, and it doesn't change their lives too much. Now a met in the main bile duct that could kill you - that I wouldn't want to live with. Just my personal choice, but I'd go for the surgery.

I'm praying for you - hoping you can decide what you need to do that you can be comfortable with, and make peace with the decision.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Gosh I'm so sorry to hear this and WILL pray for you.

I don't know anything about the surgery you mentioned but agree with Kath that I'd want that deadly met out of that area! Not sure why an abdominal met couldn't be dealt with at the same time.... Do you know?

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I am so sorry to hear of your news. Not sure what to say that could make you feel any better about the situation. You have a big decision to make and just know that we are here for you when you need to vent. Hope all goes well in your upcoming decisions and progress.

Kim

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

SO helpless when I read this, though I have alot of friends with Diabetes, who live just fine and dandy, nothing really different in their lives, except a daily insulin shot! I would do anything to survive, and you're still young and healthy, and I think you can live with diabetes! Don't let this bile duct problem take you! or get you down, you have that choice, and really, who knows...maybe it will be done and you would have no diabetes as well! If you need to talk, please call me! I'm here for you!

Hugsss!
~Donna

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Kate,I am really sorry to hear your news.This really sucks.You know,one thing I hate this cancer most is you have to live with uncertainty.Nobody knows who is going to be completely cured or who is going to have recurrence.That's why doctors are so cautious to say to the patients "you are cured".My opinion is even if there are side effects left over,but these things should be manageable,it's better than leaving visible mets in the body.You are in my prayers.Best luck and best wishes to you.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I am sorry {{hugs}}

I am so impressed that you have not thought of dying much, I am inspired so much by that.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Dear Kate

Like the other folks, your post was a real reality check to read this evening. I'm SOOO sorry that this is the news you've been given. And you're right, it feels like either way you go there will be some collateral damage. And it's unnerving to think about a surgery and then there might not be a cure.

On the other hand, if this met is present in that duct and could change on you at any time, it makes sense to choose the "lesser of 2 evils." Better to have that tumor removed and out of your way and deal with the fallout, than not do anything. And believe me, I'm all about Quality of Life and have said so in this forum on many occasions - when the quality is gone, then our life is gone - having said that though, the thought of "really dying" is so sobering that it forces you into actions that you dread to take on, but know you must.

I believe each of us has the right to fight on or not - you are such a strong personality, I cannot see you waving the white flag - just can't see it, even though I've only known you for such a short time, I have read your posts.

I'm going to support you and your decision and I know you must know weigh all of the options and make a difficult choice - I for one want to see your bald head and smiling face on this board.

I'm blue for you and thanks for letting us know what is going on and for getting this anguish out of your chest.

Sincerely
-Craig

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

Kate

I know that bad knews is like a punch in the gut and my heart goes out to you. I know you have some hard decisions ahead of you and all you want is to get better but not at the exspense of feeling aweful...I just keep telling myself if you can keep the cancer at bay as long as possible there will be something or someone that comes along that will be able to help. I'll include you in my prayers.

Julie 44
Posts: 479
Joined: Oct 2008

Kate,
I am very sorry to hear your news....Have you gotten a second opinion on this surgery???? I know you have been through an aweful lot these days..It just doesn't seem to stop..You are a very strong person to have gone through all of this so you can make it throguh this too..Sit down and write out all of the pros and cons and then sleep on it for a couple of days then decide...But look into another opinion if for nothing else but peace of mind....I will be praying for you...JULIE

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry you haves such a difficult choice to make. I am thinking of you. BTW, I have lost most of my hair too!

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Your post made me sit up straight in my chair tonight. I'm so sorry that darn met is back. The surgeon is giving you an option, weigh the pros and cons then make your decision. This is a decision only you can make but Kate, you are stronger than you think. In reading your posts, you are not one to just give up so don't start now. I am at a loss for words so I'll just say take care, talk through everything with someone and know I am thinking of you. We are all here for you 24/7 - Tina

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

Just a P.S. here,
I know people live with diabetes every day.
I had several cousins with juvenile diabetes and my mother and sister
had type 2 diabetes.I certainly don't intend to make light of that.
I have a REAL PHOBIA about needles ,I see one ,I pass out !
in all the hundreds of times the last 4 years I've been stuck with needles,
I have NEVER SEEN ONE.I don't freak out when i get shots or labs,they all know not to let me see the needle,and i'll be ok.
I live alone and there is no way I could ever give myself shots.that would be the biggest problem, thats my only phobia,but i have it BAD!!
one night i was watching a research show on T.V. ,and they started to inject chicken eggs with something,i saw that and passed out on the floor!!and it was on television !! crazy huh????

also another 'side effect' is sometimes it damages the duodenum(the opening of the small intestin going into the stomach) so much they have to put a
feeding tube in your side so that you can eat.So food goes in a tube in your side....... and it comes out another tube on your side,(ileostomy)Fun huh!

CanadaSue's picture
CanadaSue
Posts: 340
Joined: Apr 2006

Kate,

I am so sorry the news is not great. Get a second opinion, there is always something new happening, and maybe there is something they can do for you with out the side effects.

Never give up hope!

My thoughts and prayers are with you.

((((HUGS))))

Sue

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

I hate needles also...always have, always will, and yep, if I see one going in or coming out its bye bye buzzi... out like a light...so you don't have the market cornered on that one..

But, on another note, there is someone around you that does know how to give shots, hell I give them to my dogs all the time so anyone (you trust) can give em. Find a friend that is close and tell em hey comere you and gimme a shot, that takes care of that....Now, as for the pile up of news that you don't like hearing, when it gets so bad for me that I can't stand it, I simply tell myself over and over, its me not my kid, its me not my kid, until the bad thoughts pass...you have to be strong willed enough to only think of the special things in life, the beautiful sunrises,sunsets,fog,snow,rain,dew, I watched an ant once this spring and followed it around until it disappeared into the grass, I admired the beauty of not the grass, but of each individual blade and how it was shaped and why was it shaped as it was, for what reason...I never miss a single thing now, I pass this gift on to my children so that they too can see all the things that life has offered up but most never slow down long enough to enjoy. Kate, slow down and enjoy the things that are meant to be enjoyed, forget the bad stuff, it will take care of itself, it doesn't need your help so forget it, sooner or later it will go away. Savor the things in life that are meant to be inspiring to us, and revel in them. Don't let this news control your life in 2010,or 2011,2012, etc....Your smile tells the story of a woman that can do whatever she desires, life is a continuance of good feelings and emotions, not of ill will and bad moods, lets leave those for someone else......Love and Hope and plenty more smiles for us............Buzz

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

Kate -

As much as I fantasize about lumpy bald heads, I'm sure I
would find your smooth noggin equally a turn-on.

Hey.... have you considered getting another opinion? Try to
keep in mind, that a doctor's opinion is only a human's opinion.
So go get another opinion from an out-of-area specialist..

You owe it to yourself to get other opinions, and no respectable
physician would be unhappy with a patient's desire to get other
opinions! Most doctors welcome the input from their peers, since
it can be information of great value to them that they wouldn't
have otherwise (Call it "free education").

You need to talk with another onco, and another surgeon that
specializes in gastrointestinal problems.

Take a deep breath, get your strength up, and go for it!

You're going to do fine!

Muzzy's picture
Muzzy
Posts: 178
Joined: Sep 2009

Kate i'm sorry to hear this. You are always in my prayers. i know that you will make the right desion for you.
Jeff
Just happy to be here!!

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

Kate, I'm so sorry for you. This really makes me sad.

Just a thought, but maybe a second opinion wouldn't hurt?

All my thoughts and prayers are with you. It's got to be hard to make those hard choices of what to do. Prayers for your physicians as well. I pray they know best how to treat you.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Kate,

I'm so sorry you've had such rough news. I know it's got you going in circles right now.

First of all, I agree that a second, third, or fourth opinion might be in order. Even wonderful doctors can't know every method of treatment that's out there. See what options might be open to you.

Also, did the doctor specify if it would be the type of diabetes that would require getting shots every day? I have some friends who got diabetes as adults, and they take oral medication and try to control things mostly by diet.

I know this is a heavy weight on you, for so many reasons. Just know that we're all here for you and will holding you up, no matter what route you choose. I'll be praying for good things!

*hugs*
Gail

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry to hear the bad news,I know you have alot to think about.I would do the surgery,and risk diabetes.I have type 2 diabetes,and right now all I have to do is lose weight,and watch my diet.If I don't lose weight,then I have to take the medicine.My father was diabetic and he just had to take a pill.Now a days it comes in pill form.But I think it's up to the dr.Also I would get a second opinion.Personally I would rather have diabetes than cancer.I will pray for you.

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Dearest Kate,

I am sorry to hear about the mets. I don't have any wisdom or experience in that area but I sure know how to pray. My husband and I will be praying for physical, emotional and spritual strength and healing. My heart goes out to you. Please continue to share your feelings with us. It's important to be able to feel safe and know that we are all here to support you.

God Bless You,

Debbie (gramma)

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

If the surgery results in diabetes it will be the shot dependent
kind because the pancreas will no longer be able to produce insulin,
so it cannot be controled by diet and exercise.

jscho
Posts: 62
Joined: Jun 2009

I am a type I diabetic on 4X daily shots of insulin (1 slow-acting, fast-acting shots with meals). I have never had a hard time with needles, so I inject the insulin myself. You shouldn't worry too much about the needle aspect of treating diabetes, as there are an increasing number of ways of delivering insulin therapeutically. These include an insulin pump, in which a catheter is inserted only once every few days, insulin inhalers (like asthma inhalers) and insulin sprays, which deliver insulin through the skin with a high pressure spray.

If you are concerned, take a look at:
www.diabetesmonitor.com/alternative_insulin_devices.htm

I'm truly sorry about your situation, but diabetes is not hard to live with, so don't let it influence your treatment options.

Best wishes,
Jeremy

lcarper2
Posts: 638
Joined: Dec 2009

WOW I hate to hear this news but let me tell you there is life after becomming a diabetic was one before I had cancer take 4 shots a day 2 different kinds of insulin and 2000 mg of metformin and 90 mg of actos than I got colon cancer can't take infussion chemo made my blood sugar go to 700 so am on xeloda 3000 for 14 days and off for 7 . Being alive is more important than anything we get as a side effect from cancer I can't walk more than 50 feet and need a cane for that but you know what I am 62 and alive and going to live along time. Will pray for you.

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

This is just such disturbing news. I know that you have to feel overwhelmed by all the decisions that lie before you. Take a deep breath, think back on the strength that you have found within yourself to get you this far. Focus on the enemy, assemble your forces (that includes us) and wage war again, you can do it. You are in the hearts of many tonight.
Hugs and prayers coming your way,
Joanne

trainer's picture
trainer
Posts: 242
Joined: Sep 2008

Yours is a hard story to read. I have type 2 diabetes and had it for several years before my colon cancer was dxed. Other than taking my meds for it, I have not had any interaction problems with both diseases. I pray for you in your situation. I take comfort and get strength from Is 40:31. Read it if you're unfamiliar with it.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Oh Kate,
I'm so sorry to hear this. This is so much to consider. I will keep you in my prayers.

Aloha,
Kathleen

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I am sorry you are in my thoughts

michelle

krf's picture
krf
Posts: 99
Joined: Dec 2009

SOrry Kate- you are right, this is a very bad start to the new year. You have such difficult decisions to make. I hate this beast.
I will keep you in my thoughts-
Kim

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kate,

I'm so sorry to hear all the difficulty you're having. I actually read your post yesterday, but got so sad reading it that I couldn't even reply- sorry.
I just wish I could wrap my arms around you and hug all your problems and sadness away! I don't know what else to say except that I'm praying for you and PLEASE DON'T GIVE UP HOPE! I hope that you're feeling a bit better today.

Hugs,
Lisa

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

Thanks everyone for your encouragement.
I do feel better today,
had myself a good cry last night and put it out of my mind until next week
when I see my onc.One day at a time!
Surprisingly enough,even though my friends are cool with
the bald head ,their kids are AMAZING!! This morning I was wearing a knit hat at my friends house and my friends kids asked if it made my head hot,I said yes a little,
and they all said 'WELL TAKE IT OFF!! and the rest of the day they paid no mind to it at all.
It really helped my confidence and made me so much more comfortable with the bald thing.

I don't know what I would without you guys!!!!
:-}
kate

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

That's OUR Kate :)
-Craig

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

well,after a couple days of panic,
i am feeling much more settled.
i will be talking to my onc on tuesday,
by then she will have had a conversation with both the surgeon
and my GI guy,so i'll know more of whats up.
keep your fingers crossed and i'll keep you posted
thanks for all your encouragement my friends,
i'll get thru this because of you guys
kATE

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

YOU MEAN I WAS SUPPOSED TO PUT IT ON MY LEGS????!!!!

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