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Update - Has anyone seen my butt tumor?

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

Hey Folks,

Anybody seen my butt tumor? None of the doctors can find it!! And believe me - they've tried.

We had a great visit with the surgeon this afternoon. Here's what we know:
1. The primary rectal tumor is gone. It doesn't show up on the CT or MRI. It doesn't light up on the PET scan. It wasn't visible during the colonoscopy. We're pretty sure that there are microscopic remains; so the surgeon wants to resect the area in order to give the best possible chance of the tumor staying gone.
2. Nothing is showing up on the scans in my peritoneal lining.
3. The CT scan shows 3 liver mets. The MRI shows several mets in the left lobe of my liver and 1 in the right lobe.

The plan: Next Wednesday the surgeon wants to scope my peritoneal lining,colon, and liver. There's a chance that he will find more cancer than what showed up on the scans, but if he does, there is a very good chance that it will not be hard to deal with.

I am scheduled to have liver surgery on April 14th. Basically he will remove the left lobe and scoop out the met on the right lobe. Perhaps the scope next Wednesday will change this, but I would imagine that Dr. Shen would not have put me on his schedule unless he was fairly sure that the surgery would happen. I think at this point, he's looking to avoid surprises when he opens me up. I like that. He may resect the primary tumor location at this time, or he may postpone that piece. I thought I would have the debulking surgery and HIPEC, but there may not be anything to debulk. I'll find out on Wednesday.

Dr. Shen said that there is an 80% chance of recurrence. I say there is a 20% chance of success. That's 20% more than I thought I had when I started.

I hope everyone is doing well. Stay strong. Be happy.

Peace - Roger

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

I'm glad to hear Doc is being proactive on that 'missing tumor' because we recently had a long time members rectal tumor grow back (not resected). Sounds like a plan my man!

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Keep thinking that way. With your great attitude you will be in the 20%. Maybe then they will change the damn numbers for everyone.

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

It looks like a good plan Roger. I've had 2/3 of the liver removed and am no worse for wear.

I hope the scope goes well.

Rob; in Vancouver

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

You are in good hands with Dr. Shen!
mary

amyb15's picture
amyb15
Posts: 108
Joined: Jun 2009

roger;
congrats on what seems to be a great plan. I hope it all works just perfectly. That is very encouraging. I have been watching for your post. My sister is off to Fox Cahse in philadelphia tomorrow. We will be leaving at 4:00 am for a 7:15 am appt. I hope she is as encoutragerd as you are.
I will keep everyone posted
I hope each and every one of you are cured of this beast. Don't you thimk there are a lot of younger people with this disease? Most on the board are 30's 40's or 50's. My sis is 42 ( I am younger, I had to throw that in) Weird, huh?
I'm also glad you posted a picture although the black crow image swooping over you is still in my mind

great News for you. You must be so happy. We are all happy right along with you/

Amy

AnneCan
Posts: 3693
Joined: Oct 2009

I am so happy for you Roger! It sounds like your treatment so far has been successful + you have a great plan going forward. You must be really excited! Good luck with the next step; please keep us posted.

Aud's picture
Aud
Posts: 477
Joined: Oct 2009

for you Roger. What a wonderful attitude!
holding you in the Light,
Audrey

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

Roger,
Love your attitude!
There is no reason why you should not be part of the 20%. Remember the numbers are just someone's ideas of what could happen, so in reality you have a better chance, you have already shown the tumor who is boss! The %'s are a probability problem so 20% is actually more than 20% and the 80% is less. Besides the crows are getting the stupid cancer cells!

Jan

lcarper2
Posts: 638
Joined: Dec 2009

Man I have looked all over for that Butt tumor and it ain't no where to be found....I think if you stand up and bend over you might see it lodged in the crack if you sat hard it could be lodged in there...may have to call roto rutter,,,keep us informed as to where it was...

coloCan
Posts: 1870
Joined: Oct 2009

Give 'em hell.......steve

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

Roger, love the attitude!! Thoughts and good vibes will be going your way!!

Devasted
Posts: 186
Joined: Jun 2009

Roger,

Glad you received good news...waiting for more to follow.

Take care...thinking of you

Sundanceh's picture
Sundanceh
Posts: 4312
Joined: Jun 2009

Pretty close cousin to the Crow...

Best of luck - it all sounds good, Roger - you sound good and ready to go - your mind is right to fight :)

I'll just call you Ned71 after this...caw, caw :)

-Craig

geotina's picture
geotina
Posts: 2069
Joined: Oct 2009

So far, that is really wonderful news. If you can have a liver resection and avoid the debullking and HIPEC that would be great. Tina

Lovekitties's picture
Lovekitties
Posts: 2989
Joined: Jan 2010

Roger, glad to hear the primary source is no longer to be found. It sounds like you and your doctors have a plan to deal with the left overs.

As for the percentages, no reason to beleive that you won't help raise the 20% side of things!

Love your attitude...helps all of us to see things more positively.

To better days and better health

Marie

kristasplace's picture
kristasplace
Posts: 877
Joined: Oct 2007

I'm so happy they can't find your butt tumor, Roger! That's a good sign you're on the upswing of things! I agree with everyone else, you're in the 20%, for sure!

I will be thinking about you on the 14th, and sending good vibes that everything goes well for your surgery.

Many hugs!
Krista

maglets's picture
maglets
Posts: 2427
Joined: Jun 2006

I too love your attitude....i had most of my liver wacked out and sure enough the cancer returned and we wacked again....i am down to 10 percent chance of living and what the heck...you know I really have kind of given up on those numbers....I no longer ask...

sending all the best for your coming scope and surgery

mags

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Roger,

That's exciting to hear that your rectal tumor disappeared! Mine also disappeared completely following six weeks of radiation to the tumor, with no evidence of even any microscopic cancer cells in the area taken from the ultrasound colonoscopy and biopsy. I was ecstatic and did NOT ever have the rectal resection. Some doctors are now starting to decide this issue of whether or not to still resect after what they call a "complete response" on a case by case situation, not just the "always resect, no matter what".
Now, I must tell you that all was fine in the rectal area for almost two years until my most recent PET/CT scan showed a 1 cm recurrence in that area. But, as you mentioned, the chance of recurrence even if you have the resection is still there. My colorectal surgeon who back then decided together with me to not perform the resection on me, also told me at that time "if you have a recurrence, you'll need the surgery". I haven't seen her again yet since the recurrence, since I just started up on chemo again, but my oncologist told me when I asked about possibly needing the rectal resection now, that I might not neccesarily need it- we would see what happens with the chemo first (I have mets in my liver and lungs that we're working on with chemo).
I, for one- even though I've had the rectal tumor recurrence now, am glad that I've gotten to go all this time without dealing with all that a rectal resection involves and the ileostomy bag I would have gotten (my tumor area is very low to the anus & my surgeon wasn't sure before if she could have saved my sphincter or not). I don't know what I may face now with it, but I would still do it the same again even knowing about the recurrence.

I'm not trying to influence your decision or your doctor's decision- you definitely need to go with what you and your doctors feel is the best option. I just wanted to share my experience with that.

I've also had a liver resection in May '08 & also just had a recurrence there- 4 new tumors. I'm going to hammer them first with chemo & if they don't go away, I know I can have another resection or maybe just blast them this time with some cyberknife or something. The resection was rough at first but the recovery time was not nearly as difficult as I thought it would be. 8 weeks later, my family went on a vacation that included white water rafting. I was planning on waiting it out, but decided to go for it & I did- it was fun (even though I took a spill into the river- lol!)

You have many options and much HOPE before you & you have a really great attitude about it all. That's half the battle, in my opinion.

Take care & God bless-
Lisa

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

I saw it , it left the building. I caregave the sh&@ out of it. Go hubby!

AnneCan
Posts: 3693
Joined: Oct 2009

Kim,

You must be so happy! It is obvious you do a great job of supporting Roger through this! Take good care!

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

Congrats on the upcoming surgery! you will have that fighting chance, and kick that cancers A$$! One of these days, I hope to be able to have a surgery where my liver will be operable, even if it does take a long time, like you said, you have that 20% chance of success, which is better then none at all! love your spirit!

Hugsss!
~Donna

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

What fantastic news that they can't find it - you scared it off!

I wish you luck next week - hoping nothing new shows up at all, and you can just do the liver resection and move on. (And remove the area where the primary tumor was if you decide to do that. Personally I'd go for it, especially if they can do it all at once and keep you from having multiple surgeries.)

I'm always in the weird 1% category, or less than 10% category, for almost everything medical that happens to me. So being in the 20% group might not be so bad. Overall I've done ok with my numbers. Like being in the less than 4% of patients that still have cervical cancer after a hysterectomy removing their cervix. So I had to fight a little longer, but I won! I've been NED for cervical cancer for 5 years now (after battling it for a few years). Throw yourself into the 20% category - it isn't so bad being a minority sometimes!!!

dirtyshirt
Posts: 10
Joined: Feb 2010

But don't go looking too hard for that tumor - so you've misplaced it. So what? Let it go!

More power to you, bro.

soccermom13's picture
soccermom13
Posts: 226
Joined: Feb 2010

Will be in my prayers and thoughts!
Hugs

Shanna

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