I'm new here...

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
Bill5107
Posts: 1376
Joined: Sun Jul 11, 2010 5:50 pm

I'm new here...

Postby Bill5107 » Sun Jul 11, 2010 8:26 pm

It's weird. I had my 39th birthday on a Sunday...still ill on the couch a day before an appointment with my brand new gastroenterologist. That Wednesday tney knocked me out for a colonoscopy, and on Friday, with wife in tow and kid ad camp, I learned that I had colorectal cancer. Boom. I don't drink, smoke and have no family history. Yet there I was.

Last Wed CT scans were done and last friday learned that it is stage 3, which my brand new oncologist says is good because it isn't stage 4. I took it as great news that it hadn't spread widely.

I hope not to offend/upset anyone with stage 4, my prayers are with everyone it seems these days.

Originally I was supposed to go to Boy Scout camp with my son's troop last week. due to discomfort I was only able to tolerate the drive once. Had a great time. I stayed for their campfire, little visiting and birthday cake for a scout. Most important, the kid was doing fine.

Instead, I spent last week getting centered. Getting in touch with friends and thinking about my relationship with God.

By Friday I was coming around to realizing how well my wife was treating me..cooking low-res for example, ensuring I was eating, etc.. I also fully realized now disengaged I was. "one day, one step at a time" I was saying. Problem is, you can't plan that way...you can't see what's coming.

A couple dear friends pointed me here earlier today. "yeah" I thought... what good could That do?

Then I saw an acronym list...ohh...nice. as I skimmed for several minutes, I found tons of tnings I will have to explore further.

Ok one good post. Moly, eh? Colossal Colon? Ah, they were here fairly recenty, we didn't make it for some reason. Molly rollerbladed where? WOW! My buddy gre up in one place and my sister lives in the other. Not only was Molly's rollerblading amazing, I thought "what a small world!".

Then I read some more posts. The one that hooked me I am sure is like many here. It was relevant to my concerns. Voiced some things I thought about and offered constructuve and blunt ways to think and deal with it. (one about anger management for example)

I actually feel almost guilty that this effort was underway for 10 years and still I was ignorant of so much. Time to get to work. Among so many other things, I have a date with a friend to go on a 90 mile canoe trip next year, and I am expected to pull my own weight!
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: I'm new here...

Postby Bev G » Sun Jul 11, 2010 9:48 pm

Hi Bill:

Wow, some birthday present, huh? No question, getting a cancer diagnosis, for most, is enough to scare you right into a different reality. I literally felt like I was sleeping and having a nightmare for about a month. I LITERALLY kept waiting to wake up. Walked around in a weird fugue-like state. Slowly things came into focus and thank God I found this Board. Some days still I feel like my "friends" on the board are more real than the newly funny reality of my life.

Welcome to the Colon Club. There is always someone around, day or night, if you have questions, fears, anxiety, or jokes to share. I hope your transition to your new reality goes smoothly, that you get advice that make sense, that your treatment goes smoothly and that the odds always go in your favor. We got your back, whatever we can do.

All the best, Bev (one stage IV who is also VERY glad you're stage III, not IV)
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

User avatar
pearlgirl
Posts: 594
Joined: Tue Oct 03, 2006 6:18 pm
Location: Eastern United States

Re: I'm new here...

Postby pearlgirl » Sun Jul 11, 2010 10:01 pm

You found a good place here, full of good people. You can express all your emotions, ask any question - someone here will have already gone down that road and will come back with an answer or two or three for you. This site and its posters have saved my sanity and may have saved my husband's life. I have laughed and cried with those who visit here. Welcome to the club no one wants to join; we're glad you found us.
Husband DX CC (T2N0M0) 9/06
LAR 9/06
Recurrence, now CRC 1/08
chemo/rad, 6 weeks, ended 5/2/08
2nd LAR/ temp ileo 6/19/08,
8/4/08> 6 months chemo
ileo reversal 4/09, in remission

SkiFletch
Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: I'm new here...

Postby SkiFletch » Sun Jul 11, 2010 10:22 pm

Agreed, welcome to the club nobody wants to join, but everyone is glad they found. As another stage IV here, I'm definitely happy you're stage III. Nobody wishes the IV designation on anyone :). We're looking forward to sharing with you Bill, enjoy the club and good luck.
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

User avatar
karin
Posts: 1278
Joined: Fri Jul 24, 2009 12:24 am
Facebook Username: Karin Tobin Fagner
Location: Austin, TX

Re: I'm new here...

Postby karin » Sun Jul 11, 2010 10:42 pm

I'm so sorry about your diagnosis!! We're all thinking of you!!
Warmest wishes,
Karin
Karin
BFF dx'd June09 w CRC & peritoneal mucinous carcinomatosis @ age 40
She beat cancer for 20 months!

weisssoccermom
Posts: 5969
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I'm new here...

Postby weisssoccermom » Sun Jul 11, 2010 10:59 pm

Welcome.Glad your friends recommended this board. Do you have rectal or colon cancer??? Treatments are different. If it is rectal cancer - you'll be undergoing many more tests. Either way, you have found a good place to 'land'. We're here to help you in any way that we can.

I might make a few suggestions.

1. Get copies of EVERY test, procedure, etc. that you have. Don't just take what the doc says - get copies of the reports - from you colonoscopy, your path report (scope), the report from your CT, etc. These are your right to have.....don't let anyone tell you that you can't have them or that you don't need them.
2. Before ANY treatment begins or surgery is undertaken, make sure that your onc/surgeon/GP has run a CEA test. This tests for a protein in your blood that tumor cells often give off. Depending on which test is used, (Roche or Bayer), the normal level is 0 - 2.5 or 0- ~4.0. Please note that having a normal level means absolutely nothing....simply put, your tumor doesn't express the protein. However, it is good to know your number before treatment....think of it as a baseline number.
3. Start a notebook....three ring binder kind.... with dividers for each section - ie. colonscopy reports, CT reports, pathology reports, blood reports, etc. It's always nice to be able to go back and look at them rather than simply trying to remember what was said.
4. Keep a small notebook nearby to jot questions down in....questions you'll want to ask your surgeon/onc. That way when you're in the office you'll have those questions right at your fingertips and won't have to try to remember what you wanted to ask.
5. If you need any dental work done, try to get an appointment ASAP. Generally speaking, unless it is an emergency, dentists don't want to see you while you're on chemo.....so, if you can, get in now and get that taken care of.
6. Write down all medications that you are allergic to and keep it handy. Also, keep a list of medications that you are on easily accessible so that your onc is up to date on your health.
7. Talk to your relatives - mom, dad, sister, brother, grandparents, etc. Find out if there is any family history that you may not be aware of, of colorectal cancer. ALSO, and this is important, find out if there is ANY family history of colorectal polyps - benign or precancerous. Oftentimes family members fail to see the connection and don't mention the polyps....their attitude is that they were benign so it's not important....totally WRONG!

8. Finally, try to relax. Figure out if there is any project that is important that you want to get done right away and then try to do it if you can. Once you start treatments, you will undoubtedly be tired and if something is important to you to try and undertake, take this time right now, before you start treatments/have surgery, etc. to get it done.

I would also like to add one other important fact. Most of us start this journey with this preconceived notion about what cancer patients are like. We see the made for TV movies with cancer patients looking like bald stick figures, vomiting or laying in bed all the time. Sure there are some cancer patients that fit that profile, and there are some chemotherapy regimens that are rough, but, generally speaking, the chemotherapy for colorectal cancer patients is tolerated fairly well. Many people have kept working full time during their treatments, brownbagger continued to ride his bike during his treatments, etc. The most common first line protocol for colorectal cancer doesn't tend to have hair loss as a side effect.

Finally, be informed. You have to decide what type of patient you want to be and there are many different types. If you want to, you can be a member of your health care decision making team, you can simply let the doctor make all the decisions or you may want something in between. Regardless of which road you want to follow, just know that you have the right to ask questions and expect answers. I believe all of us would probably advise you to seek out a second opinion....if for no other reason than to just make sure that the treatment advised is the right one. For your surgeon, particularly if you have rectal cancer, PLEASE make sure that he/she is a board certified colorectal specialist.....don't just assume that they are.

Good luck and please keep in touch.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

User avatar
Bill5107
Posts: 1376
Joined: Sun Jul 11, 2010 5:50 pm

Re: I'm new here...

Postby Bill5107 » Mon Jul 12, 2010 3:36 am

Wow!

All the stage IV folks piping in here, thanks so much. I don't even know any of you, but I just added to my prayers....

Weisssoccermom - Wow. Great suggestions. Lots there i hadn't thought about. I do have a folder I started but I didn't have a good concept yet. I can see I need another for records....this one will be for what's "On deck" so to speak.

As for what type.. I've been in a fog, so I can only say I believe rectal. LOL with my symptoms I would think it has to be! I aint getting near a bike right now! Riding In my usually comfy minivan to my appt Monday will be uncomfortable as it is x-p

I've commited to getting informed. I'm feeling a bit behind on that. I've got good benefits, but I'm also trying to figure out how to adjust my job while I cannot physically get to the office. Until I get some relief from symptoms I might not be able to even get half-days in.

That's part of what I need to address w/ my Dr today.

Thanks so much folks!
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

User avatar
Sinfulsot
Posts: 65
Joined: Sat May 22, 2010 6:13 am
Facebook Username: Given Upon Request
Location: Rhode Island
Contact:

Re: I'm new here...

Postby Sinfulsot » Mon Jul 12, 2010 7:01 am

welcome n00bie.
And now something so wonderful, you could get wonderful poisoning.

Anonymouse
Posts: 101
Joined: Wed Oct 07, 2009 11:40 pm
Facebook Username: Jeffrey Hamilton
Location: Rio Rancho NM

Re: I'm new here...

Postby Anonymouse » Mon Jul 12, 2010 8:18 am

Sorry you had to show up here Bill but we're here 24/7 for you!
Dx 9/2009 with 2 cancers in colon
KRAS wild,HNPCC/Lynch Syndrome (MSH2)
T3,N1,M0 Poorly differentiated Signet Ring
Total colectomy with ileorectal anastomosis 10/2009
FOLFOX complete 5/2010

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: I'm new here...

Postby BrownBagger » Mon Jul 12, 2010 8:36 am

Hi Bill. As a Stage 2a with a chance of upgrading to Stage 4, I can assure you that everybody wants you to stage out as low as possible--and stay that way. It takes awhile to get your mind wrapped around a cancer diagnosis, and I don't think most of us really fully accept it. It's just something we learn to live with. I've had good luck staying active and exercising vigorously and often. Pretty much all the information you need, you can get right here--beyond what your doctors tell you, of course. They're the ones on the front lines.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: I'm new here...

Postby Surroundedbylove » Mon Jul 12, 2010 8:37 am

Welcome to the Club no one wants to join. One thing I really like was having 24/7 support/venting help during the long treatment and recovery time - and you don't have to leave the house!

Keep us posted on how you are doing and any questions you have.

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: I'm new here...

Postby NWgirl » Mon Jul 12, 2010 8:59 am

Welcome - though as others have already expressed, I'm sorry you had to discover this little sub-culture. This is a great place to help get you through your journey. You'll find that no one really gets it like another cancer patient does. Nothing against people who don't have cancer - lets hope they never do "get it" literally - but it really helps to talk to people who truly know how you feel as they have walked in your shoes. I have learned so much here, I have found people who let me cry, scream, yell - and even laugh. I've found that cancer hasn't figured out how to destroy our sense of humor. :-) Glad you found this site - for most of us here, it has been a tremendous support in many ways.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

User avatar
KarMel
Posts: 1523
Joined: Wed Oct 14, 2009 7:48 pm
Facebook Username: Karin Gray
Location: Indiana

Re: I'm new here...

Postby KarMel » Mon Jul 12, 2010 9:45 am

The "how can this be happening to me?" thought has probably hit us all. Some days, I still feel like that. You will be encouraged to have some genetic tests and meet with a geneticist, which is all well and good. But, primary importance, is to make sure you have the best plan for treating your cancer... Talk to oncologists, surgeons, your primary care doctor, and family who will be caring for you till you feel you have a treatments option you believe is your best choice. Then move on it!
Not knowing is scary...having a plan of attack got me in the mindset to feel like I am ready to take on the beast.


Come here for support, encouragement, or just to vent. It's a good place to be, even if none of us really want to be here. :cry: :? :wink:


Peace
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

boweltumor
Posts: 193
Joined: Wed Jun 17, 2009 9:27 pm

Re: I'm new here...

Postby boweltumor » Mon Jul 12, 2010 10:22 am

BrownBagger wrote:Hi Bill. As a Stage 2a with a chance of upgrading to Stage 4, I can assure you that everybody wants you to stage out as low as possible--and stay that way. It takes awhile to get your mind wrapped around a cancer diagnosis, and I don't think most of us really fully accept it. It's just something we learn to live with. I've had good luck staying active and exercising vigorously and often. Pretty much all the information you need, you can get right here--beyond what your doctors tell you, of course. They're the ones on the front lines.


don't be so down on yourself.
Bill, really sorry you have to join the colon club. No one seems it coming and then BAM you have cancer. It sucks. This is a very good community.

weisssoccermom
Posts: 5969
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I'm new here...

Postby weisssoccermom » Mon Jul 12, 2010 10:28 am

Bill,

Here's some more information that you will need to be aware of. If it is rectal cancer, you will be given a clinical stage. I realize that your doctor said stage III but there are differentiations in the stage III setting. There is a stage IIIA, IIIB & a stage IIIC. The staging is based on the "T", "N" & "M" factors. The terminology can get confusing until you get accustomed to it. Basically, the "T" stage refers to how deeply your tumor invades the wall of your colon/rectum. The "N" designation refers to how many nodes are affected and the "M" designation refers to how many, if any, distant mets (metasteses) you have. Mets can be either or both distant organs or distant lymph nodes involved. The other difficult part to discern is that there is a "T" stage and an overall stage.....don't confuse the two. Your "T" stage will always be referred to as a T1, T2, T3, etc. To get your final overall stage, the patient has to know all of the components. Here's a link that better explains it.

http://www.cancer.org/Cancer/ColonandRe ... cer-staged

If you do indeed have a diagnosis of rectal cancer, you will undoubtedly be undergoing more tests. The first would be a rectal ultrasound.....not exactly a pleasant test, but one that is necessary. This test allows the doctor to diagnosis the "T" stage of the tumor and to see any local lymph node involvement and is important to be done prior to any treatments. (Keep in mind that although you may have had a CT scan, the rectal ultrasound is much more sensitive to assess the pelvic lymph nodes than the CT is.) Usually with rectal cancer stage II and higher, the first treatment is neoadjuvant (presurgery) chemoradiation. These treatments are done to help shrink the tumor and to 'sterilize' the lymph node field in the pelvis. Rectal cancer has a higher rate of local recurrence than colon cancer and the chemorad treatments help to minimize this risk.

A clinical stage in rectal cancer is important because when surgery is undertaken, there is a fairly substantial probability that the tumor will have shrunk significantly and/or the affected nodes will be gone. If the doctors waited to only do a pathological staging, it would give a skewed result. Let me further explain. Suppose a patient presents with a T3N1M0 and is clinically staged as a stage IIIB. After chemoradiation, the tumor has shrunk to a T1 and no nodes are found to be affected with cancerous cells in the pathological examination (after surgery). If the doctor simply went by the pathological findings and nothing else, this same patient would present with a T1N0M0 diagnosis and be a stage I. This would cause problems with adjuvant treatments. A stage I patient is generally not given any other treatment such as chemo (unless there are some other extenuating circumstances) but a stage IIIB patient is. I'm probably jumping ahead here as you aren't even totally sure whether or not you have colon or rectal cancer. It is important, though, that you realize that while the two are similar, there treatments are different. (Most colon cancers are initially treated with surgery).

The first thing you need to do Bill, is to find out whether or not this is considered rectal or colon cancer and then proceed from there. I would also caution you to realize that, although well meaning, many oncs have a tendency to give surgical advise to patients, when in reality, this is not their field of expertise. I am a firm believer in letting the medical onc be the person who is responsible for the chemotherapy and the surgeon be responsible for the surgical advice. I would also highly suggest seeking the advice (again, particularly if this is classified as rectal cancer) of a board certified colorectal surgeon. Too often, a general surgeon (who may very well be a top notch surgeon) will tell you that they can perform rectal cancer surgery....and the fact is that they can. However, be aware that the pelvis, particularly in the male, is a confining area to operate in. Everything within the pelvis is within millimeters of each other....ligaments, nerves, tendons, etc. Personally, I would only want a surgeon who does nothing other than colorectal surgery to be operating on me. The following link will provide you with surgeons who are board certified.
http://www.abcrs.org/cgi-bin/search.pl

While I realize this is all 'yucky', that you just 'want it out" please take the time to find the right surgeon, onc, etc. These doctors will be important to your care for quite some time and you should have a good 'feeling' about them. If you have any doubts or just don't feel that the doctor/patient relationship is a good 'fit', then by all means, seek out a second opinion.

Sorry if I have overloaded you with information here. Good luck on your appointment. Please let us know how things go and what your next step(s) are.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], Varspool and 4 guests