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Your biggest misconception

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

I was wondering about something-what was everyone's biggest misconception about cancer at the time of diagnosis? Mine was that, because I was diagnosed at Stage 1, I thought I would have one "courtesy call" type of visit to the oncologist, and that would be that. He'd confirm that, no, I didn't need chemo, slap me on the butt and send me on my way. Ha! I didn't realize that 2 1/2 years later I'd still be going in for bloodwork every few months and periodically being checked over by a very thorough oncologist. Or that i would have such repercussions from the surgery that I would be dealing with chronic pain.

Don't misunderstand, I know how very blessed and lucky I am. No complaints!

*hugs*
Gail

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

I HAD thought diarrhea without a colon would be much like diarrhea with a colon. Oh, I could not have been more wrong. I had dysentery once, even that was not as bad as what I now sometimes get.

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

my husband says that his poops are normal, as normal as they will ever be, still after every meal and as soon as he wakes in the morning. a year and a half after his colonectomy he has finally stopped taking immodium on a daily basis. I don't think he has taken one in about 2 weeks now. That is a plus! Take care. margaret

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

that I would be dead shortly, after all it was cancer. Thankfully that wasn't true, although I'd be lying if I didn't admit that sometimes I thought death might have been preferable to what I was experiencing!
mary

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I had no symptoms at all. How could I have cancer without symptoms? I felt fine and had no problems. I went in for a routine colonoscopy. I wondered if the machines were malfunctioning.... Then I remembered a college friend died at the age of 54. She had colon cancer and it had already spread to her liver, lungs, back and leg.

ketziah35
Posts: 1154
Joined: Jun 2010

That after chemo. The cancer journey ends. It will always be lurking in the bsckground.

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vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

i honestly thought when initially diagnosed i had a year or maybe even a year and a half of the biggest battle of and for my life. i've learned this is an all out sprint all the time and never ever ever let your foot off the pedal but moreso nearly 3 years after diagnosis i'm still fighting this beast.the fight continues...i'm a little tired this evening so i hope this makes sense....hope all is well.

ed

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I think mine was how can I feel so great and have stage IV colon cancer?
I thought at first I'd be dead soon, I did not think I'd still be in treatment 6 1/2 years later and feel pretty darn good most of the time.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

And we are soooooooo glad you got THAT one wrong!!!!

Hugs, Kathi

AnneCan
Posts: 3692
Joined: Oct 2009

For sure,

Phil you truly are an inspiration, especially when you say you feel good most of the time.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Didn't realize that my body was so greedy...needed not one, but two cancer fights!!!!

I WILL say, I even fooled my docs...no one figured that a lump in my breast, which I'd had for years, could possibly be cancer. Thank the powers that be that PET scan for my rectal cancer found it!!!

Hugs, Kathi

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

My biggest misconception right before being diagnosed with colon cancer was that all cancer patients underwent chemo and radiation. When I was diagnosed with Stage 1 cc after my first screening colonoscopy, I was surprised to find that a colon resection was all that I needed. A courtesy call type of visit to the oncologist just like you described is exactly what I did. He told me that the standard of care for Stage 1 cc was surgery, but no adjuvant chemo. He told me that I didn't need to come back.
Joy

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

I thought I'd be sick as a dog. I had the easiest time with my chemo. No nausea, no vomiting, no whatever.

Now my mother on the other hand thought no women could get colon cancer. I laughed and told her that I won't ever get prostate cancer or testicular cancer. She was really shocked when I told her. :o)

wifeandmom
Posts: 31
Joined: Apr 2010

I thought it would be hard (chemo, radiation, surgery, temp. ileostomy) but that everything would proceed without complications, delays, etc. Silly me! Developed a fistula, requiring a second ileostomy (after the first was reversed), interrupting adjuvant chemo, coming down with a postsurgical infection, landing me in the ICU at Hopkins, leading to opening my surgical wound, resulting in an open abdominal wound for over a month, catching strep from one of my children, interrupting my final chemo cycle ......... Now I've swung almost to the opposite, believing that anything that can add complications will. Though, in fairness, I also have to acknowledge the support from family and friends; having good insurance; possibly having a clean scan (still have to get the post-PET/CT MRI that my onc. wants though she says it has 'nothing to do with cancer.'). Still have to laugh (ruefully) at that initial misconception.........

adamommy
Posts: 15
Joined: Jul 2010

Holly you are truly lucky. I have heard so many horror stories about the side effects of chemo. I just got my mediport implanted yesterday and I am scheduled for my first treatment on July 19. To say the least I am scared to death not knowing what to expect. I am still recovering from my colon resection surgery which I had almost a month ago. However, I think I am freaking out more at the thought of starting chemo than I did for the surgery. With the surgery I knew what to expect afterwards but with the chemo I don't have a clue and thats whats so scary.

God Bless You All
ADAmommy

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

everyone is scared of chemo the first time in; the unknown and we've all heard so many stories. Just remember, you are an individual and will have your own individual response(s) to the chemo, and there's nothing that says it won't be a positive response! I remember a guy who was getting chemo with me and he was doing oxi and went back to the office after getting it and the days following. He said sometimes he was tired, but that's it! I wasn't so lucky, but you could be like him. What chemo are you getting?
mary

adamommy
Posts: 15
Joined: Jul 2010

Thanks so much for the encouraging words. I don't know yet what chemo I'm getting. When I find out I will let you all know. Thanks again for the encouraging words. Everyone on this blog has been so kind and so informative. I feel so lucky to have found you guys.

God Bless

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

I was scared too. My nephew had leukemia and he was sick as a dog with his chemo. I thought I was going to be the same. One thing I did learn was after the first two rounds of chemo I knew what to expect and what drugs were going to help. My oncologist (onc) prescribed ativan which helped me sleep the first night of chemo because of all the dexamethazone or the steroids they gave me. I also had to take a mild laxative because of the anti-nausea medications they give can stop you up.

I got a bit of neuropathy in my hands and feet from the oxaliplatin, and even though I didn't make it through all 12 doses of it, I still have some pain in my fingertips and once in a great while, my feet tingle. Better than cancer though, right?

Hopefully the nurse went over all the side effects from your chemo drugs. Some can contradict each other and some you never get. Some you do. It's a roll of the dice. :)

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

I was scared too. My nephew had leukemia and he was sick as a dog with his chemo. I thought I was going to be the same. One thing I did learn was after the first two rounds of chemo I knew what to expect and what drugs were going to help. My oncologist (onc) prescribed ativan which helped me sleep the first night of chemo because of all the dexamethazone or the steroids they gave me. I also had to take a mild laxative because of the anti-nausea medications they give can stop you up.

I got a bit of neuropathy in my hands and feet from the oxaliplatin, and even though I didn't make it through all 12 doses of it, I still have some pain in my fingertips and once in a great while, my feet tingle. Better than cancer though, right?

Hopefully the nurse went over all the side effects from your chemo drugs. Some can contradict each other and some you never get. Some you do. It's a roll of the dice. :)

adamommy
Posts: 15
Joined: Jul 2010

When you said you didn't make it through all 12 doses of the oxaliplatin what happened? Did you start to have a bad reaction?

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

to the oxaliplatin about 20 minutes into the 7th round of chemo. Have you mentioned what stage you are? I can't remember if you have.

dorookie
Posts: 1736
Joined: Jul 2007

to not make all 12 rounds of OXI, so dont be scared, I only made it to round 7, then had to switch to another kind. But I am NED over a year now and I am very thankful...

Stay strong..keep your faith...

HUGS
Beth

KelliA
Posts: 6
Joined: Jul 2010

Hello Ada. I know what your going through, I got my port two weeks ago and have my first chemo treatment on July 19th too. I had my surgery on June 7th. So I feel somewhat normal. I knew what to expect with surgery but this is different. I wish you lots of luck. Remember we are all fighters and won't give in to cancer.

dorookie
Posts: 1736
Joined: Jul 2007

You will do great. I remember my first day at chemo July 12 2007, I sat there and cried like a baby I was so scared when I walked into the chemo room. I still get teary eyed thinking of that day, but I was lucky to have great nurses and a great Chemo staff.

Good Luck and remember it will be over before you know it and you will be back on track with your life...God bless you..

Beth

dorookie
Posts: 1736
Joined: Jul 2007

You will do great. I remember my first day at chemo July 12 2007, I sat there and cried like a baby I was so scared when I walked into the chemo room. I still get teary eyed thinking of that day, but I was lucky to have great nurses and a great Chemo staff.

Good Luck and remember it will be over before you know it and you will be back on track with your life...God bless you..

Beth

khl8
Posts: 810
Joined: Nov 2009

I am like some of the others, no real side effects, I worked all during chemo and still had a life, heck I never even had to use the anti nausea medication. I know that the fear of the unknown is the worst, but we have all been there and can hopefully set your mind at ease about what is to come. My first treatment I took someone with me and after that I realized that I could better use the time in the treatment chair for something other than keeping company. I took myelf to treatment, got a pillow and a blanket and took naps, then when it was over I took myself home. I grocery shopped with the chemo bag, went out to dinner and all that stuff. You can do it!
Kathy

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

I had just watched my mom die from colon cancer 2 1/2 years before I found out about mine. She made it almost 2 years, so I have a few more months to go before I surpass that. But honestly colon cancer seemed like a death sentence to me, I still struggle with that, as do most I imagine. Colon cancer has killed 3 family members of mine and in pretty short order too.

I also like many, thought chemo would be worse than it was. I only called in sick to work 2 times during the 6 months of chemo. It has made me realize how tough I am and has given me faith in myself that I did not have before. When I see people that have heard about my cancer but have not seen me since, they looked shocked, like they think I would look different. Nope I look the same, except for the scars (the ones on the outside), which most cannot see anyway.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

George wasn't sick, how the heck could he have colon cancer and Stage IV on top of it. How did this happen. Next was chemo. I thought I would have to quit work to take care of him, he would be bed ridden, throwing up, bald, skin and bones. Next was the testing stuff, I had no idea what a CT scan was, CEA, mets but boy, you sure learn fast.

Take care - Tina

hoya1973's picture
hoya1973
Posts: 37
Joined: May 2010

My comments would resemble Phil's and I'm inspired by 6.5 years! I feel great but don't know what to expect. Stage IV April 19, 2010.

thready's picture
thready
Posts: 475
Joined: Sep 2009

I have always been one to sail through most adversities. I thought I would not have side effects etc Well, SURPRISE! I was so wrong. When I was about to finish I thought I would be back to my old self and going strong in just a couple of weeks, wrongo, still have a lot of fatigue etc. O.K. now I am learning that I really need to take care of me, not a lesson I have had any experience with. I have spent most of my life taking care of other people, so t his feels so strange and I can say I would rather take care of others-it is a lot easier!

Jan

roxib
Posts: 1
Joined: Jul 2010

Thready hit it right on the head for me. The side effects after chemo. Holy cow. I had Stage II T3 and chemo was optional. I chose to do it because of my age and other issues.
I thought after chemo I would bounce right back...not so much.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Me? I kept waiting for the other shoe to drop. The reality is the worse of all of this was hearing, "you have cancer". As hard as recovery has been, the surgeries, the chemo from h*ll- it was nothing compared to the 3 words at the beginning. Perhaps I expected it to be and then it wasn't I was relieved. I kept expecting to go back to the shock and horror of those 3 words, and I never did.

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

Without trying to upset anyone I must confess that my ideas of cancer were way off the mark. At the time I was suffering severe long term depression and when I was dx with cancer my first thought was "Yeah that'd be right". My surgeon and onc were not very encouraging about my survival prospects due to the advanced nature and aggressiveness of my cancer. I thought about it and cosidered that hey perhaps this is perfect,an honorable way out,if I take all the treatment no one could say that I copped out and the effects on my family would be less than other avenues that I had considered.
Well I got that wrong ,here I am nearly thirteen years later,the universe has no compassion or just doesn't care. Perhaps the secret of survival is not worrying about surviving. Ron.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

You were one of my inspirations, dear Ron, and I am so happy you survived, whatever the stars and the universe says!!!

Hugs, Kathi

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

...You were always an inspiration to me, and still are, as is Kathi and Phil, you make me look forward to living with the cancer with smile on my face.

I had the same misconception as Tina did, that I'd me bald, and skinny (though I needed to lose a few pounds at the time, but didn't want to lose it that way.) I though my kids would be watching me suffer watching me throw up blood and puke everyday, that I'd be in insufferable pain everyday, that I'd be bedridden and not able to do anything anymore.

Now, my 15 year old even told me that if she was ever diagnosed with cancer, she wouldn't be afraid anymore, because she can see how the chemo isn't hurting or ruining my life, and I'm glad my kids are seeing that, I try to make it like it isn't the worse thing in the world, and people all around the world still have it as worse as I do, living in poverty and disease, who don't have the medicines we have, and are suffering worse then us, and she knows that too, and we are more fortunate then they are.

But yeah, cancer isn't what I though it be.

Hugsss!
~Donna

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I didn't realize how strong I could be.....and I didn't realize how my 9 siblings saw me, so much strength, kindness and so giving even in a time that most would have folded. I was in awe of them for telling me that I have been this way since I was little and that they looked up to me since the day I decided to leave home and joint the service at the age of 19 (we were so guarded and protected... I grew up in the foothills of California, way out and was bused to school, it took over an hour to get there.

Yes, I was surprised that chemo didn't change me, that I took it a day at a time, one step in front of the other....no matter how I was feeling. (this did come from my mom who raised 9 kids by herself, and who only thought of us).

z's picture
z
Posts: 1413
Joined: May 2009

Hi Ron,

I am happy you were able to survive and I hope you are no longer depressed. I understand what your saying, before I was dx with anal cancer, I just didn't feel good at all, and thought I wish I would just die. I can't believe I just put that into words. I truly believe that because I felt so bad physically, that this contributed to my depression. Now after I show ned after completing tx 6-30-09, I have never wanted to live so much, and feel better than I have in years. I hope you are feeling the same. Lori

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

Re:
"Perhaps the secret of survival is not worrying about surviving. "

Your story struck home for me. BTDT. I may not have the fish to
show for it, but I smell as bad.

Stay well, willya'?

John

lmchils57's picture
lmchils57
Posts: 60
Joined: Feb 2010

That I would be the one fighting colon cancer not my son. It was the worst day of my life, the day he was diagnosed. The first thoughts was how, he is too young, and it should be me since it was my dad who had it first. But things don't always work that way and we adjusted and so far he is doing well and so are we. It does help that my dad beat it so I remind myself that it can happen and that this is not necessarily the end by any means. I have really come to admire him and his determination to live for his boys, without them I am not sure he would be as determined, they are his reason for living. He has his 11th treatment on Tuesday, and finds out how his last CTScan came out and what his new CEA count is. His CEA count has been steadily dropping and the enlargement of his liver is way down. I too have been surprised at how little the chemo has affected him, I watched my fatehr-in-law go through chemo in the 80's for lung cancer and he became a shell of a man before he died. I swore I would never do chemo unless they could give me a better chance then just to add a year to my life and a lot of that year was ot quality at all, and like many I did not realize the differences in the different types of chemo and of course this was 26 years ago and a lot has changed since then. It has been an interesting experience and it really has just begun since he is almost to the end of this round of treatments and we then find out the next steps. I too was expecting to have to quit work or cut back considerably and to have to be taking care of Scott but I really have not had to do that.
I would never have thought and I did not at first feel I would be strong enough to go through this with one of my children but I have found stregnth I did not know I had.

Taking one day at a time-
Linda

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

As a parent caring for a sick child, I know what you say about strength...

We do what we have to, and then, if necessary, the tears fall into the pillow, where no one sees them...

I am very happy that your son's numbers are better, and that everything seems to be working...

Please be careful for yourself to be checked frequently...especially your yearly gyn exams...the beast can be sneaky. I don't say that to make you sad, just to make you wiser than you already are! As caregivers, we tend to ignore our own health, but without it, we cannot be there for others...

BIG hugs, Kathi

lmchils57's picture
lmchils57
Posts: 60
Joined: Feb 2010

Thanks Kathi and I understand about taking care of myself, I find myself thinking i have no time to be sick and that nothing can happen to me as I have to take care of Scott. I have always had my coloscopies like I should but am lax on the mamograms, which is rather bad on my part since my neice and mom boht have had breast cancer. Glad to say both are long term survivors now!

Hugs to you too-
Linda

vchildbeloved
Posts: 133
Joined: May 2008

Linda, I know what you mean concerning your children being seriously ill. I never thought that 5 months after I was diagnosed with stage 3 colon cancer in 08, my 32 year old son was diagnosed with stage 2. I had to be strong for the both of us; watching him undergo surgery and then 1 year of treatment. That is a journey I never expected to be on. We are both doing great; but I can honestly tell you the journey continues as I not only watch out not only for my health, but his as well. People are always commenting on the amount of strength I have shown throughtout all this. They don't know all the times way in the wee hours of the night how I cried for the both of us. I tell them that it was not strength in myself that got us through, but I truly did have o depend on and lean on the strengt of God. My son and his wife just gave birth to their first baby girl; something that they were told would never happen because of the meds my son was taking. SHE'S BEAUTIFUL!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

That's the way I describe this whole thing. I had no symptoms--well none until my stomach swelled from ascites. I always expected to have heart disease or lung disease, as that's what runs in my family, not cancer. After all I lost 100 pounds 12 years ago and was in the best health of my adult life. How could I have colon cancer?

After all I've been through - 2 surgeries, HIPEC and a total of 26 courses of FOLFOX & Avastin, I still sometimes thinks how the hell did I get here? But I will fight this tooth and nail to keep from letting cancer get me--I just won't let it!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Great question Tootsie. The responses are really interesting.

At diagnosis I thought that a person would have a certain amount of chemo and then be declared victorious or dead. I didn't realize that each case is unique. I didn't realize that there are so many ways to fight and manage this disease. I didn't realize that you could live for years and years with this unwanted band of bastards inside of you. We all work to become victorious one day. In the meantime, it's up to us to really live. I love this board because, through the ups and downs, we live like winners.
Take care - Roger

Lifeisajourney
Posts: 217
Joined: Apr 2010

So many. My mom died of breast cancer at 30, so I thought for sure I would get breast cancer, not colon cancer. Especially since I have had colonoscopies since 50. Three years between was too long. I thought I would die, I am still alive. Thought chemo was more doable, everyone else seem to make it thru, lose of hair maybe. Golly that was an experience.....Cancer has been a really confusing experience, still trying to figure it out, but glad to be surviving..Pat

dorothywestin
Posts: 7
Joined: Jun 2010

Just beginning the journey as I start chemo/radiation at Moffitt on Monday, July 19 for rectal cancer T3-N0-M0...will be taking the chemo pill called Xeloda - from what I've read and what the doctors told me, I expected the pills to be HUGE. Much relieved after seeing them. My Centrum multivitamin is twice as large! I can do this.

The other misconception I had was the radiation table....I'm not on my back, I'm on my stomach with the head to pelvic area above my legs and feet. We did a run through on Friday and it was extremely painful for my back and pubic area. I could barely get myself on and off the table. It will only be about 10 minutes each day so I know I can endure but I truly thought I'd be comfortably laying on my back and zap, zap, in and out.

khl8
Posts: 810
Joined: Nov 2009

I know the position well!!! make sure you have them cover you when you get into the position and when you get up, it makes the experince with your bare butt in the ait a bit more tolerable.
Kathy

khl8
Posts: 810
Joined: Nov 2009

I know the position well!!! make sure you have them cover you when you get into the position and when you get up, it makes the experince with your bare butt in the ait a bit more tolerable.
Kathy

coloCan
Posts: 1956
Joined: Oct 2009

was decided to do me laying on back, so new set of markings and ultimately anothye set in front were etched in me. Watch out for loss of hair and skin burn in radiated area--tell radiologist ASAP of any problems; Aquaphor and silverdine will/might prove comforting later (or soon, depends on your reaction)...It was somewhat uncomfortable on back being that tumor was at end of *** and I'd oftentimes ask for a diaper under me, just in case.....Best of results for you......steve

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