CSN Login
Members Online: 1

You are here

This is my story. Your input appreciated.

Mickeyw
Posts: 28
Joined: Jan 2007

I am a 60 year old male in the eastern Atlanta, GA area. I went for a scheduled routine colonostomy Dec 14th, 2006 unaware of any symptoms of any kind. Healthy as a horse. He found a tumor in the ceccum, the area between the large and small intestine where the small int. dumps liquid into the large. Too big to snare, and lookng malignant, I sheduled surgery immediately on his recommendations. Labroscopic Surgery Dec 20 , 2006, came home Christmas afternoon in time for dinner with all the family. What a joy!!! Was back to work half days in three weeks, began full days the fourth week. Recovery from surgery has been marvelous. Have been to two oncs, one recommended by the surgeon, the other we picked as a second opinion. We have chosen the referred one. My tu,or was a stage II with 0 nodes. Have had CAT and PET scan and bloodwork, and have appointment Monday next week (01-29) to get results, and consult on what to do next. The surgeon and the onc are slightly in disagreement on the lab results. Surgeon says the tumor had invaded the outside wall of the intestine, microscopically. The onc says that it has not. I have advised them to get on the phone together and come to a matching conclusion before Monday. I feel they are heading toward a recommendation of a round of chemo. Percentage of possible return in the colon or elsewhere is 18 to 20 % if I do nothing. My feelings at this point.... I, my wife and kids watched my wife's Mother and Father both die from cancer. If a round of chemo and monitoring the rest of my life can drop that percentage by 5 or 6 points, I am willing. I am lucky enough to work for a company that puts health and family first. My position as a computer manager allows me to do work from home when needed. I have been assured that as long as I can at least consult with the office over the phone when needed, that my pay is not in jeapordy. I would like your thoughts on my case. I know about side effects, etc. I also know that they are not the same for everyone. I also know that I do not want to lay in a bed and take 6 months to a year to die like I have seen twice. Thanks for reading and thanks for any input you might have.
Mickey

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Hi Mickey!

I appreciate your sharing the details of your journey thus far. I think it's theraputic to write down what a person has gone through. It gives them a great sense of accomplishment seeing how far they have come!

I believe we think similarily. If there is something that needs to be done to prevent cancer from coming back, by any percentage, I'd be doing it. I was stage 4 and had chemo before and after my surgery. That was 5 years ago, and I am cancerfree today. I felt like I owed myself and my family to use all the weapons provided to me in order to be successful in the battle. What is interesting is that I have seen posts here, and even heard stories locally of different stages of cancer affecting people differently. Some folks tend to think that a lower stage is not as serious as a higher one. Personally, I think that is ridiculous! It's cancer no matter how you slice it! And since every person is different, the reaction of the person to the stage itself varies, just as it does with their reaction to chemo and treatments. Folks can win at different stages and can also lose at different stages. I like your approach of getting information from two different oncologists. Feeling comfortable with a physician is like buying shoes....you have to make sure they are there to get the job done without creating more pain than it's worth in the process!!

I think it's great that you have found this site to contribute your experience. This could possibly lead to helping someone else and that is a great feeling.

Look further on this board to get details about a reunion of sorts we are planning in Nashville, TN. Perhaps you and your wife will join us to celebrate your good health in September!!!

Stacy

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

Hey Mickey,

I have to wonder who are your doctors. I also live in the Atlanta area, and if you need any suggestions about good docs from the patient point of view, I have had very, very good treatment from my medical team.

When do you think you will find out what drugs they recommend? That will have a lot to do with any (potential) side effects.

Rodney

Mickeyw
Posts: 28
Joined: Jan 2007

Hi Rodney,
The onco we are using is Dr. Alexander Saker located in Lawrenceville with Suburban Hematology, Oncology. The other one we went to was Joan Weens over in the area around St. Joseph's Hospital. I will certainly know about the chemo this Monday, and if that is the route I will take. I will then certainly know about the drugs. I do not plan to schedule any chemo until mid February, unless Doc says it is necessary to start right away, but I don't think that is the case unless the body scans so a surprise that we are not aware of. My wife's 80 year old step mother lives with us and she is going to stay with Wife's sister up in Cartersville the weekend of the 10th, and wife and I are planning a weekend getaway to maybe Savannah, Charleston, or St. Augustine. I am a watercolor painter, and in case I have a lot of down time over the next months for doing some painting, I am looking forward to doing some sight seeing and some picture taking and some sketching. I will post back on this thread and keep it updated sometime Monday late. Thanks for your interest Rodney. We are in southern Gwinnett County by the way. Anywhere close?

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

hi mickey,

if you go to Charleston say hello to my Uncle Joe the Mayor!

Please see your email box.

peace, emily

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

I live in the East Atlanta area (very close to downtown and Little Five Points, that's not to say the eastern side of Atlanta, but rather East Atlanta is the name of the neighborhood). My doctor is Dr. Carlos Franco who works with Georgia Cancer Specialists, my colorectal surgeon is Dr. Wayne Abroze and my liver surgeon is Dr. George Daneker. They are all wonderful if you need to find a good colorectal or liver surgeon! Let us know what you decide.

Best wishes,
Rodney

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

hi rodney,

my sister lives right in Little Five Points! Small world!

peace, emily

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

The Little Five area is my favorite neighborhood in this city. I've actually lived there at two different times in my life, and so have probably walked right by your sister at a cofee shop or restaurant. Yes, sometimes it really is a small world!

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Mickey,
I was diagnosed on my baseline colonoscopy (at age 53) in Dec 03; no symptoms and 2 small polyps; a 1 cm polyp proved malignant. Pre-op scans looked great; no CEA elevation. The polyp had not penetrated beyond the submucosa, but I had 1 out of 12 positive nodes, which my surgeon said was my "ticket to chemo". I was personally very worried that such a small polyp had already shared those nasty cells with a lymph node. I went on to the recommended chemo of 5FU and leuco. Oxali was just coming out of trials, but my onc felt the poss side effects didn't justify the small potential increased benefit. The chemo was tolerable; I was able to take short term leave for 3 of the 6 months; it gave me the time and energy to focus on me and family.
My decision was greatly influenced by the fact that I am a nurse, and have some trust in what medical science has to offer. I also lost my dad to metastatic colon cancer (age 85) and I, like you, wanted to do everything I could to prevent that from happening to me.
To have to gather so much info and come up with a plan in such a short time was like no other experience in my life. At 3 years out, I'm grateful to report that I remain with No Evidence of Disease.
Best of luck with your decision; welcome to the board. Stay strong and focused and keep us posted.(And thank goodness for "routine" screening; I feel like a poster child.) Judy

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

It sounds like you have your situation well in hand. I would just make sure that your oncologist understands you are willing to put up with chemotherapy even if the benefit is arguable.

houseofclay
Posts: 63
Joined: Nov 2004

A couple of thoughts on your situation...I would request a copy of the pathology report that is causing the disagreement to see exactly what the doctors are discussing. (It is always a good idea to have copies of all records in a notebook--LiveStrong has a great one and you only have to pay shipping and handling but I digress...)

I think that as a general rule, surgeons should make surgical decisions, medical oncologists should make chemotherapy decisions, etc. I know that sounds simplistic but it does bear repeating from time-to-time.

The Atlanta-area doctors that were suggested are some of the best in the city for those specialties, so any of them would be great resources. I live in Chamblee and am familiar with all of those doctors.

I hope that helps. Feel free to email me off list (aclay@ccalliance.org) if I can do anything else for you. There is a colorectal cancer support group that meets at St. Joseph's on the first Friday of the month, so we are meeting on Feb. 2 if that interests you at all.

Mickeyw
Posts: 28
Joined: Jan 2007

I have copies of all reports. I agree that surgeons should surge and oncologists should oncol. I have to have copies of all paperwork for a seperate cancer policy that I have paid 200.00 a month for 19 years. Would you believe I started to cancel it this past May. I will email you off line.

Mickeyw
Posts: 28
Joined: Jan 2007

Yikes.....that should be $200.00 a year, not a month!!! Sorry for the typo.

Mickeyw
Posts: 28
Joined: Jan 2007

I have copies of all reports. I agree that surgeons should surge and oncologists should oncol. I have to have copies of all paperwork for a seperate cancer policy that I have paid 200.00 a month for 19 years. Would you believe I started to cancel it this past May. I will email you off line.

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Mickey,
I have rectal cancer stage III. I am having surgery in a week. My surgeon and oncologist have both decided to treat my cancer very aggresively (I'm 32). After surgery I will be doing 4-6 months of Chemo (FOLFOX And Avastin). I know that there is some debate of what is the best way to treat stage II. I am in agreement with you, if you can decrease you chances of a recurrance with chemo then it is worth it. I too have witnessed cancer deaths in my family and will do whatever it takes beat this.
Best of luck to you. You are in my prayers.

Kiersten

Sam725
Posts: 87
Joined: Nov 2006

Hi Mickey,
Your story sounds alot like my husbands. He went in for a routine colonoscopy and they found a tumor just this past Halloween. He was staged at IIb no node involment or spread but it did break thru the wall of the colon. Our onc told my husband who is 51 and has a big history of family cancer, mom, dad, both grandparents on dad side, aunts, uncles he recommend the stardard tx of FLOFOX of 12 treatments in 6 months just in case something floated outside the hole. He said if he was older (in his 70's) he would have said don't worry about it but since he was so young like you, he would highly recommend it. If some got out thru that hole that means they are floating around his body and the chemo will run them down and kill those suckers! Did you get a copy of the path report? If you didn't I would surely ask for one and read the results. It will tell you for sure if it did invade the outside wall. If it did invade it I would think long and hard before you decline chemo.I figure rather be safe then sorry. My husband has done 2 rounds so far and hasn't had anything to bad when it comes to side effects. Yes, it will disrupt your life but think of the big picture when you make your decision. But just remember it's your decision and your decision alone. I wish you well and will keep you in my prayers as you go forward. Sandy

pink05
Posts: 553
Joined: Mar 2006

Mickey,

I am glad you came to this wonderful site for support. Also glad that you have decided to get two separate opinions. I think that is a very wise thing to do. My dad got two different opinions from two different oncs. The first onc. recommended the lowest dose chemo for my dad due to his age (77). He felt that the side effects of the standard treatment would be too much for my dad. The second onc. recommended a more aggressive treatment. It was a very difficult decision to make, however, we talked to many different people and finally my dad's surgeon said that my dad could always give the more aggressive treatment a try and that he could abandon the treatment if it was too hard on him. I liked his thinking. My dad ended up going with the more aggressive treatment and was able to handle 6 months of it. He did have to discontinue the oxaliplatin after about 4 months due to extreme neuropathy (tingling and numbness in extremities), however, if we would have gone with the initial opinion of the first onc., who knows what would have happened. Let us know what you decide to do. It is a very difficult decision to make, however, I am sure that you and your family will decide on the right one for you.

God bless,

-Lee-

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

my etiology is similar to yours, although the staging Stage III, NO MO-(I think..) was different; the tumor was too close to the anus, and it had broken through the wall. They took my rectum and anus, leaving me with a permanent colostomy.
the surgeon said he got clear margins, and that chemo/radiation was not necessary. The next day, he came into my room and retracted this opinion, recommending adjuvant therapy.
I assume that he talked with the Oncologist and was told to protect his license.
I predict your doctors will recommend chemo, I'm not sure about radiation. I am now stage IV-(mets to lungs)which occurred 3 yrs later.I did the adjuvant therapy, but quit just before completion of the protocol.
bottom line is that no machine or doctor can see microscopically..
There are at least two patients (Scouty & 2beheald-Emily) who did the surgery and refused adjuvant therapy..both are ned 2 & 5 years.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

having said the above, if I knew what I know now, I think I would have gone with Emily's protocol, then the more conventional treatement if needed. This is because I have some perrmanent & severe side effects from chemo/radiation. bud

Slyster
Posts: 8
Joined: Aug 2006

Mickeyw...I say go for it. I had stage 3 colon cancer. The onc came into my room and gave me no guarantee on the chemo. Well, My first thought was why go through all that if there is no guarantee. For once I listened to all my children. They all told me I should take that chemo even though there was no guarantee. I said, OK and went through 6 months of chemo. It was not good but it was not bad...Of course I was a little fiesty with them. I learned all I could about my cancer and just what was happening to my body with chemo. I even downloadead pictures of my type of cancer from the internet. If I know all the facts, I can fight the fight. Take care and you will know what decision to make.

Subscribe to Comments for "This is my story. Your input appreciated."