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What would you have done differently?

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Hey gang,

I was talking with some folks I had just met at the local pub (shocker - huh, lol) near me last night and I told them my story after they asked me what I did for a living. One of them asked me that very question and it struck me as being a profoundly good one. Since we have a wealth of people at different stages of their journey and sadly new folks coming here all the time, I think that a "lessons learned" thread might be of value.

For me the answer is easy. I should have had some sort of physical exam routine set up years ago. Like many guys, I might only see a doctor once a decade. I only grudgingly saw a doctor after months of feeling lousy. By the time I finally had my colonoscopy, I was pretty well dying. Some routine bloodwork, or a doctor seeing early signs of my ascites belly could have made a lot of difference in my staging.

Do you have anything to share?

Strength and love!

Ray

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I swear (on a bear) that I was thinking of this just this morning and thought of making a post along the same question.
I'm quite happy with what I've done to treat my cancer so far, but I do remember that even though I was getting routine physicals every 12-18 months, there was one time when the Dr wanted a stool sample. Just a routine thing (unless he's into making sculptures out of crap) and I blew it off. I think it was maybe 3-5 years before my dx. It could have made ALL of the difference between stage I and stage IV.
Then again, maybe it wouldn't have. Maybe it was longer ago and it hadn't started. I'm not too big on playing Monday Morning Quarterback and I can't change the past, but if anyone every wants some $hit from me in the future, it's their's for the asking!
Great question.
-phil
PS: I love when stuff like that happens, I've found I'm so much more tuned into it than ever before...a plus of cancer I guess
;-)

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Found someone right away who knew how to deal with the kind of cancer I have! I didn't have a clue. I have gallbladder cancer but post on this board because my treatment is the same as for colon cancer. If I had, I would have had the proper surgery to get rid of the other things that can go wrong with gallbladder cancer like peritoneum and omentum seeding. It's hard here in Canada to get a 2nd opinion as surgeons/oncologists for relatively rare cancers are few and far between, but I would have been more knowledgeable and demanded certain procedures. But ... didn't have a clue as I've said, learned it all after the fact. I would have found this website earlier on. At least I did have the yearly physical exam which found the cancer though.
Cheryl

tootsie1's picture
tootsie1
Posts: 5061
Joined: Feb 2008

Phil,

You made me laugh with that answer! Had to read it to Bill!

*hugs*
Gail

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Ray,
I am a caregiver for my husband, Jimmy. A screening colonoscopy in 2005 found his cancer. He had a transverse colon resection and was NED w/only colonoscopies as follow up. His last colonoscopy was 12/09 and it was negative. In May of 2010 he had a CT for abdominal pain which showed the tumor right at the surgical site with a met to the liver. I'm not sure if it reseeded or if they just didn't get it all during surgery. He never had a ct until the one in May '10.

Jimmy did everything he was supposed to do w/the regular check ups and screening and this damm disease is still able to kick him in the butt! I do wish, however, we requested a ct after his initial surgery and maybe we would have seen the tumor before it became inoperable. Who knows if it would have mattered or not. I don't want to dwell on the "what ifs", I just keep my faith in God and I'll keep praying for Jimmy and everyone else fighting this monster.

God Bless you,

Jan

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

I had a mini tummy tuck to get rid of all the excess skin on my belly from having kids and thought that the swollen belly was because of that. I asked my surgeon and he said no that should not be the case, I asked my primary care and he said you women, you will never have the body of a 20 years old! Hmmmmm. So I ignored it. I did have a colonoscopy about this time because of mu age but I think they missed it, because 5 years later, I was stage IV. Major bummer! I ignored the swollen bell, kept thinking why did I have the mini tuck, I look worse now then before! I didn't know anyone that had cancer......

So then I got really sick to my stomach and kept going to the doctor, and she kept telling me to do situps, this went on for about 2 months, then I demanded a colonscopy. Stage 4 Cancer.

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

He must have not been stage 3, in the lymph nodes, Cause that would crazy Jan!!! No CT to see if it spread to the liver or lungs......

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

But they only took 8 lymph nodes and MSK said they should have taken 12. It's really sad because he did do everything he was supposed to do.

Brenda Bricco
Posts: 579
Joined: Aug 2011

My husband turned 50 almost 5 years ago at which time his doc started hittiing him up to have colonoscopy, even calling our home to schedule one. I did schedule one (twice)but my husband found a reason to cancel both times. He didn't want to take time off work or add to bills with out of pocket costs. I remember saying things to him like "don't you want a lot of years with me" and "you are playing with our future". I gave up and told him it was his body ( I will never forgive myself for that). He started looking ill and having severe loose stools to which I finally pleaded him into going to the ER where they did a ct on FEB. 1st. Within 20 minutes of him being back in the room the doc told us that he had a very large tumor in his rectum and that they could see that it had already spread to his liver. That was the beginning of this night mare. The onc exact words were "you have approxiamatley two years, some les, some more, we need a miracle. My husband started on Avastin, 5 FU, Oxlodea (not sure of all the drug names) and have had very good results. After his 6th treatment the tumor in the rectum was not showing on the scan and the tumors (many tumors) in the liver had all shrunk by about half. He had his 12th treatment on July 13th but was turned away on the 27th for his 13th because his pleatlets were too low to have treatment. At that time the onc scheduled a scan and blood work for tommorow and an appt for Wednesday for the results. At diaganoses his CEA was well over 800 and was 29 before his last treatment on the 13th.

So, with all this said I guess I would have pitched a major fit and made his life really unbearable until he had the colonoscopy. That doesn't mean that it would have been found early but in today's sight that is what I would have done different. I don't know why GOD has allowed this into our lives but this morning I read something like "When GOD brings you to a cliff don't be afraid to fall because he will either catch you or teach you to fly". I put all my hope in my GOD. I believe HE has blessed all of us with some really good science and many options that weren't always available. I have very dark moments when I am afraid, scared to death of what's next in line but I cling to him and ask our family and friends for many prayers and reminders to stay positive. Sorry to babble but teh question "What would I have done differently floats around in my head 24/7. Did I mention that my husband is my best friend and the love of my life? He is and I am begging GOD to change this for me.

I pray that you all find miracles. GOd's blessings.

tootsie1's picture
tootsie1
Posts: 5061
Joined: Feb 2008

I would have gotten my colonoscopy the minute I turned 50, instead of having to get it on an emergency basis 4 years later. I was fortunate in being diagnosed at Stage 1, but I keep hearing stories of people having recurrences later even when it's found at Stage 1. I kept thinking my symptoms were just more of the same mess from my IBS.

The thing is, I can't go back, and I can't change what is. So I have to try to use this experience to help others who get a cancer diagnosis and to urge people to have all the checkups as needed.

*hugs*
Gail

rogina2336
Posts: 188
Joined: Apr 2011

@Brenda your story is almost the same as mine. Unfortunately we cannot turn back the hands of time." )))Dream as if you're gonna live forever and live as if your gonna die tomorrow(((James Dean". Hopes and Prayers Kim

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

I cannot change the past, BUT I can change the future. I have seen 6 dr. and 2 specialist over a duration of 6 years. Did many a test, barium, stomach, poopoo tests, yes there was blood involved but "they" wrote is off as Hemoroids.( not sure if this is the right spelling).
I was told it was IBS and was told to take "digesta" for being lactose intolerance. Digesta killed all the bactery and gave me bladder infections every 4 months so was every 4 months in antibiotics.
Finally nothing would pass then only blood. and still I had to be forcefull with my doctor that something was really bad.
After an emergency colonoscopy learned that chemo was no option and was operated on 2 weeks later for a total blockage and a tumor the size of a baseball which had earlier exploded inside the colon. Three places with cancerous growths were removed and 4 cm of rectum. A total of 34 cm of the colon. 12 lymphnodes all came black clear of cancer.
Now it is a waiting game and living everyday as healthy as I can and enjoy everyday.
Would I have done anything different!!! You bet... I would have yelled for a colonoscopy years earlier, I am now 65.
If we don't look out for ourselves the medical profession is to busy to do it for us.
That is my experience here in Canada.
Marjan

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

And not wait till your crapping blood for months to finally get one. By then I was stage 3a with a cancerous tumor low in my rectum. Now I now longer have a rectum & joined the perm ostomy club. (but luckly no spreading to major organs sop far)
Had 6 Lnodes infected so 6 months of chemo after surgery. Just hoping this is it.

Many of my friends my age saw what ive been thru and have gotton clear colonoscopys done. Wish I had a example like myself to have had one way earlier. Oh well, life goes on.

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

I feel like I should've known to some degree, I mean really colon cancer took my mom and her mom and my mom's cousin. But I thought if I got my 1st colonoscopy at 40, I would be fine. Nope two weeks after turning 40 I was stage IIIB. Cancer sure is sneaky. I had a cousin tell me I should've had a colonoscopy sooner, umm thank you captain obvious. Seriously who says that sh*t to someone just diagnosed?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

but hey christine,

we know and i'd go for the hug first and then chat.

40 is to young, they told me 43 was too young.

now i know even 99 is too young for crc.

no age is a good age for crc.

hugs,
pete

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

After I told the two couples I was BSing with at the bar that evening what I would have done differently. One of the wives gave her husband "the look" with intesity that I have rarely seen. You all know exactly what I am talking about!

The poor guy probably already has a date set with the Golytley!

And I feel good about that :-)

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

always anxious , just last 2 months were great but it was late,too late ..........recurrence was back two months later! I manly regret for my wife and family, I already know the lesson for next time !.

dorookie
Posts: 1736
Joined: Jul 2007

I feel I have wasted most of my time being NED not living like I should, trying very hard to change that now.

Beth

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

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