Reassurance about the "M" word

CherylHutch

Hi gang,

I don't post too often here, but I do read the messages and I actually get a lot of comfort and confidence from soooo many of you and your posts!!

What I would like to know and I'm not sure anyone can answer this but, here's my situation. As some of you know, I was diagnosed with Colon Cancer, Stage III in December 2006. I had the intestinal resection surgery done, with removal of the tumour that had already perforated the intestinal wall. This was followed by 8 months of chemo and 6 weeks of radiation. In Feb, my CEA was slightly elevated, so a PET scan was ordered. This scan (which I understand to be very accurate) found two spots... my right adrenal gland and one spot in my lung. A biopsy proved the right adrenal gland to be positive for cancer... which puzzled everyone. I had had a benign growth on my right adrenal for 7+ years so why was it now positive for cancer??

On June 30th, I had the right adrenal gland/tumour surgically removed. Pathology showed that the cancer was, in fact, a colon cancer deposit. In the Fall, I will be having the spot removed from the lung.

Sorry for this being so long to get to the point... the point now being, when any of the doctors write down my condition on forms, they write "Colon Cancer Metasticize". Ok... it's this "M" word that is throwing my confidence.

I realize for a cancer to metasticize it means it has spread to other parts of the body... but I was always under the understanding if colon cancer spreads, then the prognosis is NOT good.

The fact my doctors/oncologist have gone ahead and recommended that we surgically remove the adrenal gland and surgically remove the spot from the lung... does this mean that they think this might work and there is the possibility I could be NED after this second surgery? Or, because the cancer has metasticezed, is it pretty much a guarantee that mets are going to pop up all over at some point?

I've been doing so well, and had just assumed that the surgeries mean I have a chance of being NED and IF it were to pop up somewhere else, then we would deal with that at the time since it would obviously have just started and would be early in the game. It was just yesterday when I saw the word, it hit me that maybe I'm wrong.

Any thoughts?

Limey

The M word does mean that a cancer is evident in another part of the body. with today's treatments, altdernative options and surgeries, the M word does not mean no cure. It is true in some cases that the cancer is spreading but it is promising that the doctors are confident the can surgically remove the tumor. I don't see any reason why you can't go NED after your surgery and follow up treatment. Many on this board have had terminal cancer that are are still NED today.
stay positive
Mark.

sladich

I agree with Mark. Even though your cancer has spread to other parts, it sounds like you have it under control. Best of luck and positive thoughts.

Debbie

PGLGreg

I see the "M" word on my doctor's diagnostic test orders, though there has never been any evidence that I had metastases. I think it's used to tell a pathologist or radiologist what to look for and to assure the insurance company that the test has a serious purpose.
-Greg

KFalvey

Hi Cheryl,

Last year I had my 2nd recurrance with metasticize in both lungs and on the outside of the colon. All of them were removed surgically in July, October and December. My CC surgeon said to me "We're going to get this yet." They wanted me to do chemo again, but I've decided not to do anymore (I've done both FOLFOX and FOLFIRI with Avastin and can't take Erbitux.
So far NED. CEA has been 1.1 since January. I am hopeful again and feeling good. Never give up, it can be done. Good Luck!!!
Kandy

shmurciakova

Yes it can be done. I had one liver met and 2 lung mets and I have been NED since my lung resection in October of '04.
Please do not give up hope. It is great that you are a candidate for surgery. Hang in there!
-Susan H.

kristasplace

My understanding is that metastasis does not mean you're terminal, or that you'll get more spread later on. I wouldn't be concerned until i heard the words, inoperable tumors. Even with inoperable tumors, in a lot of cases the tumors can be killed or controlled with chemo. My great uncle lived with 'terminal' lung cancer for 25 years. The doctors controlled the spread and growth with chemo.

Good luck with your surgeries, and let us know how it goes!

Many hugs,
Krista

CherylHutch

Have I ever told you all how wonderful you are??? If it wasn't for the fact our cancers were such a serious battle for all of us, I would honestly say I am happy to be associated with a group such as all of you!

I was pretty scared when the PET scan first picked up on the adrenal gland and the lung and of course, scared the daylights out of myself when I read the "odds of survival" after googling "Colon Cancer Mestaticized" (don't do it... that will scare the dickens out of anyone!). But then, when my oncologist took my adrenal biopsy results to a case conference and they came up with the recommendations to do the surgery... I was back in positive thought mode. The adrenal surgery was incredibly painful (and I have a very high tolerance to pain), but it was successful so I didn't care about the pain per se (biggest complaint was the nursing staff would ask my pain level and when I told them, they didn't believe me... now that annoyed me big time).

So here I've been going on my merry way, keeping myself happily busy volunteering for a summer outdoor theatre with friends and thinking I'm on top of the world. Then, that one little M word that my doctor had written on the renewal application for my Handicap Parking Permit and it threw me into a tizzy.

Soooo... after an afternoon and evening of being thrown into a tizzy, I came straight here to the boards to get some reassurance and you all, with your various descriptions/experiences have put me back up on cloud nine where I belong

Thank you my virtual supporters!! You have made my night!!

kristasplace

CherylHutch said:

Have I ever told you all how wonderful you are??? If it wasn't for the fact our cancers were such a serious battle for all of us, I would honestly say I am happy to be associated with a group such as all of you!

I was pretty scared when the PET scan first picked up on the adrenal gland and the lung and of course, scared the daylights out of myself when I read the "odds of survival" after googling "Colon Cancer Mestaticized" (don't do it... that will scare the dickens out of anyone!). But then, when my oncologist took my adrenal biopsy results to a case conference and they came up with the recommendations to do the surgery... I was back in positive thought mode. The adrenal surgery was incredibly painful (and I have a very high tolerance to pain), but it was successful so I didn't care about the pain per se (biggest complaint was the nursing staff would ask my pain level and when I told them, they didn't believe me... now that annoyed me big time).

So here I've been going on my merry way, keeping myself happily busy volunteering for a summer outdoor theatre with friends and thinking I'm on top of the world. Then, that one little M word that my doctor had written on the renewal application for my Handicap Parking Permit and it threw me into a tizzy.

Soooo... after an afternoon and evening of being thrown into a tizzy, I came straight here to the boards to get some reassurance and you all, with your various descriptions/experiences have put me back up on cloud nine where I belong

Thank you my virtual supporters!! You have made my night!!

Cheryl, i'm there, girl! I don't know what i'd do sometimes if i couldn't come here and read/respond/post. When my doc could not tell me why i was having large intestine bowel movements with an ileostomy, it scared me to death. I came here, posted, and got my answer right away from someone who had been there, done that. It took such a stress off of me, it was unbelievable. I love my onc; he is one of the most caring men i've ever met, but he simply cannot tell me if he doesn't know the answers to my questions, so he tends to guess without telling me it's a just a guess.

I had a wonderful doctor tell me one time that the patient is his own best doctor because no one knows his body better than him. I wish this was a philosophy more doctors would adopt. I had a hunch i was getting back flow from the ileostomy since i am on a loop, but when the doctor told me it wasn't likely, i freaked out, and went against my own body's intuition.

I feel so lucky that I stumbled across this board a year ago merely by chance. Especially now that i'm nearing the end of my treatments. I'm going to post tonight and try and get some input about my worries. I know i'll feel better when i know others understand.

Many hugs,
Krista

SATTERMAN1

kristasplace said:

Cheryl, i'm there, girl! I don't know what i'd do sometimes if i couldn't come here and read/respond/post. When my doc could not tell me why i was having large intestine bowel movements with an ileostomy, it scared me to death. I came here, posted, and got my answer right away from someone who had been there, done that. It took such a stress off of me, it was unbelievable. I love my onc; he is one of the most caring men i've ever met, but he simply cannot tell me if he doesn't know the answers to my questions, so he tends to guess without telling me it's a just a guess.

I had a wonderful doctor tell me one time that the patient is his own best doctor because no one knows his body better than him. I wish this was a philosophy more doctors would adopt. I had a hunch i was getting back flow from the ileostomy since i am on a loop, but when the doctor told me it wasn't likely, i freaked out, and went against my own body's intuition.

I feel so lucky that I stumbled across this board a year ago merely by chance. Especially now that i'm nearing the end of my treatments. I'm going to post tonight and try and get some input about my worries. I know i'll feel better when i know others understand.

Many hugs,
Krista

pt/scan
i go in next week for a pt/ct scan. my doctor told me she needs to do this to make sure "no creepy crawlers got out". i read about pet scan so my question is if the pet scan shows active cancer cells in my body does that mean i have a tumor or does that mean they know where they need to target the chemo. i am scared since i started this process two months ago. my wife had colon cancer 5 yeras ago and she is doing great. she had a great attitude. i have the why me attitude right now. just for info i do not have colon cancer but another type. my main question is the cancer cells....i pray for all. john ps, i had two ultra sounds one with dye and an mri with contrast done all two months ago nothing found then so i am hoping nothing found now.