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Just found out

JR6020
Posts: 14
Joined: Apr 2010

Hello
Wish myself and everyone else did not have to be on this site. Just found out Monday, Feb 19 I have rectal cancer. Don't know what stage yet, will find out Monday after ultrasound. Tumor is about 8cm so it's pretty large. Good news I guess is catscan and xray showed all organs to be ok, blood work great. 1 lymph node questionable. So close to rectum, maybe 2cm or so, will probably have to have colostomy though. As long as I'm breathing, guess I can learn to live with that. Then Chemo/radiation and then surgery, thats the surgeons plan anyways. Have not seen oncologist yet. Any thoughts or comments would be helpful. Will know more on Monday. Only 44, but have awsome wife and family/friends that are very supportive. posted this origionally on anal cancer board, they recommended this one. This is all new to me, how was I to know :) Haven't read to many posts, but see there are alot and realize, wow, I'm not the only one out there with this, the feeling I had when I was first told 3 days ago. Wish all nothing but the best to beat this, my buddy said it's all about attitude, I'm beating it!

Joe

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Welcome to the board, Joe. I'm sorry you have to be here, but you have done yourself a favor by coming. You'll find lots of support here. Everybody feels like the only person in the world going through it at first.

Please let us know what we can do to help!

*hugs*
Gail

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Joe,

Welcome to the board. I think you will find it very useful + comforting. Your buddy is right, attitude plays a big role in this. Take good care!

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

Welcome to the board, Joe. sorry you have to be here too. There are a lot of caring, supportive, and knowledgeable people here. Ask anything, say anything (as long as the Board Police approve). We're here.
~Aud

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Joe,

I am so sorry you had to join this club, but this is a great group who can help you and your family in so many ways. Right now it is so new and scary and everyone on this board has gone through it as a cancer survivor or caregiver/family member.

Any questions can be answered here and you will find lots of encouragement and support. My husband David is stage 4 colon cancer and is doing very well. One of the first things we did was order the American Cancer Society's Guide to Colorectal Cancer. It was extremely helpful in understanding the disease, tests, drugs, and terminology, and will help you ask good questions of your health care team. Later we came here, read lots of posts from those who were taking this journey.

Best of luck and my wish for you is you kick this disease to the curb!

Priscilla (from San Antonio, currently at M D Anderson Cancer Center in Houston recovering from liver resection)

coloCan
Posts: 1956
Joined: Oct 2009

Thinking that you ARE going to beat this, despite all you're gonna go thru to do it, is very important; I never had any doubts I'd still be here;also, you CAN live with a bag. I had my colostomy Sept 2, 2009 and it was difficult at first to just look at myself; now, its part of me and keeping me alive and I can do alot of what I did prior to CRC Dx. (Somethings I may never be able to do again but sobeit). People here will gladly help you, as they did me,sharing their experience4s and knowledge to make your journey more bearable. Remember too, you are not alone......Best of results for you,.......steve

khl8
Posts: 810
Joined: Nov 2009

Welcome Joe,
I am so sorry that you had to find us here. I was diagnosed with rectal cancer stage 3, Nov 2008, oral chemo and radiation to shrink the tumor, Awesome suregon was able to save the sphincter muscle during my resection in 02/09(tumor was low enough that this was deceided when he went it) . I did have a temporay illeostomy for 9 months and also had 9 treatments with Folfox. I ended my treatment in 08/09, had my reversal surgery in 09/09,
port removed 02/10. And it is doable! I worked thorughout all the treatments and yes your friend is correct, it is about the attitude! I was 43 when I was diagnosed.
YOU CAN DO THIS!
Kathy

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

Welcome to the discussion board you never wanted to join. That being said, take a deep breath. The treatment plan you posted seems to be the norm for rectal cancer. My hubby's cancer was different, transverse colon, so no radiation just surgery followed by chemo. The chemo drugs used are generally the same for colon or rectal.

Any questions about your chemo drugs can be answered here once you find out more. I can tell you that George, who is much older than you, did continue to work throughout treatment. He tolerated the drugs very well but then he did not have the radiation to deal with. George is a Stage IV with metastasis to the liver and lungs and was diagnosed 3/09.

There are 2 other sites I find very informative, Colon Cancer Alliance and the Colon Club. Check those out if you have not already done so. Costs nothing to join like here.

There are also lots of experienced people here regarding insurance issues, disability issues and social security issues should you need any information or have questions.

If you click on our names you can read our stories in this journey.

Take care - Tina and George

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

Joe,
Your buddy is right on the attitude fact. Stay positive and don’t squander your energies on worry. Spend it all on winning the battle. I was right where you are 2 years back.

If I understand your post, your tumor is near the end of your rectum. I would ask your doc about transanal surgery to remove it. It has a real quick recovery time. They did that with me and then got the node with chemo/rad. Then we took care of my liver.

This is a winnable battle. You can do it.

zenmonk
Posts: 198
Joined: Nov 2009

I had a very similar diagnosis back in 07. My tumor was about the same location but not as big. You will beat this. I am about your age. Feel free to email me.

baldwin
Posts: 25
Joined: Dec 2008

Good Luck with your surgery and know that you are not alone.

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

Hi Joe,

I had similar surprise news in January. I'm stage 3 rectal - smaller tumor though - about 3 cm. Ct and other scans show only in rectum with 2 node questionable. Very close proximity to rectum. Blood test - CEA was 7.3 so a little high for the 0-5.o range that is considered normal.

Positive attitude, and knowing that you make the decisions about your treatment helped me not be a victim of this, but in control of addressing a bad situation.

Learn as much as you can to ensure your treatment decisions are make on facts and not emotion. My key sources:
1) http://www.cancer.gov/
2) American cancer society http://www.cancer.org/

Watch for the snake oil that the internet has to offer.

You are going to know so much about your lower digestive tract, cancer staging and treatment options.

I'm assuming you mean internal ultra sound where they place the probe inside your anus. This will determine how much of the wall of the rectum has been penetrated by tumor. A mildly uncomfortable procedure. Similar to the fingers I'm sure your Dr already has used on you already. I got to see the camera's view of my insides, so I was fascinated despite the equipment up the ol'butt.

I settled on local treatment for chemo and radiation. Local folk had very good reputation for chemo/radiation, insurance covered, and was only 1 mile from my house. I have pre surgery (neoadjuctive) to shrink the tumor as much as possible before surgery. It was via a clinical trial with 28 radiation and Xeloda treatments (M-f), and 5 session of oxaliplatin via IV - weekly.

I'm working on where to have the surgery, but have narrowed down to either Hopkins or Sloan based on national ranking, and initial impression from their staff: http://health.usnews.com/best-hospitals/rankings/cancer.

Given location of my tumor, I want a surgeon who has seen many of these and has the best knowledge, skill, and equipment to lessen complications and get out the cancer.

Please keep us posted and this forum has great folk to share how they dealt with treatments, etc.

JR6020
Posts: 14
Joined: Apr 2010

dschreffler
Thanks for reply. Yes, probe up butt ultra sound. I'm in southern Indiana, never really thought of going/researching place for surgery. Taking word of referal Gastro Dr. on who to have it done with. Trust him, known for over 20 yrs (wife has Chrohns). I just went cause I thought I had hemorrhoids. BIG shock. Do you have to have permanant colostomy? My tumor is only 2cm from anus, so he said I had to. Honestly, that is the toughest part in my mind anyways. Was hoping for some other way but uneducated on this, no family history, all new to me. I haven't seen radiation Dr. or cancer Dr. so not sure on radiation/chemo except he(surgeon)said have to have it prior to shrink it. Not sure for how long, afraid now, after reading posts will hurt/damage sexual organs/desires/capabilities? Will live with whatever I get and overcome it in time, as long as I get rid of cancer and survive, guess that is my main goal. Just would like to do it and remain as "normal" as possible, don't mean that in a negative or bad way to anyone who has this.

abrub's picture
abrub
Posts: 2149
Joined: Mar 2010

You really want to be sure you get the best surgeon possible. I know that my dr at MSK does whatever he can to avoid colostomy. Your tumor may be such that there is no option, but I would check with an expert to find out if there are other options.

My cancer is appendiceal, and I had a double resection: left hemicolectomy (included cecum, and was reattached at the small intestine) and another section of my colon was removed as well - no ostomy, but if my dr had removed the whole stretch rather than 2 segments of my colon, I'd probably be a bag lady, too.

Lots of good advice and good support here. There's also a Rare Cancers forum for Anal/rectal Cancer that has lots of people with lots of experiences (google "rare cancers forum"). I'm part of their appendix cancer forum.

Good luck to you. It won't be easy, but it is doable. The time will come when you look back on treatment, reassess your life, and understand that you can go on.

khl8
Posts: 810
Joined: Nov 2009

It can't hurt to get another opinion on the colostomy. Once it is done you cannot change it. Maybe another doc can try and save the sphincter. Just a thought.
Kathy

JR6020
Posts: 14
Joined: Apr 2010

Worried about time. In my mind it's growing by the min and I need to get it out asap crazy I know again uneducated about cancer

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I can tell you what to expect, the highs and lows, and what the colostomy entails, mentally and physically, routes and paths you take during treatment, and how after your treatment and surgery and almost to the week 1 year of running and gunning you will look back and welcome life as it is and realize that you , along with your attitude and help of your "caregiver" learn a new reasoning for the term " living life to the fullest"...You will be fine, it will be a battle of small victories celebrated but the battle will be won. Positive attitude is a must...the mental side will attack in every direction, but you must be strong willed and minded and keep the light at the end of the tunnel in sight....It won't be a train although sometimes it will seem like it.......I'll help you through as well as all the others. I went through just about the exact same thing as you are about to...and if you are looking for a second opinion you might try Vanderbilt-Ingram Cancer Center in Nashville......Love and Hope, Buzz

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

My tumor is < 2cm also. I'm getting a 3rd opinion as my prior 2 are night and day apart... one says permanent colostomy and the other says it will depend upon how tumor reacted to the chemo and radiation and may not even need surgery. So off to Sloan for another perspective.

I recommend understand the options before hand - get a few opinions. Each of the surgeons I have met with have come highly recommended, but they each have a different approach. My perspective is this is my choice based on data.

My main goal is remove cancer, less complications/risks to other areas. Hence I'm concerned about temp colostomy and then the additional surgery with a reversal. Does it really get all the cancer and what are odds for cuasing more issues. I'm carefully wieghing these now before surgery. i value an active and control about bowels and can live with a bags if more control, less complications.

Based on that Hopkin's recommends permanent. However, my local guy says restage in a couple weeks since I just ended chemo/rad and then see what is conservative approach to see if can avoid colostomy.

I found data to back up his claim to restage and 2 cm rule may no longer apply:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1356985/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1409892/

My other options (see bottom of web page for rectal cancer):
http://www.hopkinscoloncancercenter.org/CMS/CMS_Page.aspx?CurrentUDV=59&CMS_Page_ID=3ADE123E-CBF3-44ED-9122-5303AF76A32C

Neoadjunctive chemo.rad (pre surgery) recommended to potentially "downstge" the tumor - shrink and provide more surgical options, and reduce reoccurrence.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421320/

Knowledge is power.. you are in control of this! The medical staff works for you, not the other way around.

Hope this helps.

idas_nick
Posts: 2
Joined: Apr 2010

Joe, sorry to see you here. My wife Ida was diagnosed over a year ago. Since then,his group has been a remarkable resource for her with information about treatments, symptoms, side effects and more. You did the right thing to join up (I _finally_ opened my own account today). Ida has repeatedly told me that she didn't know where she'd be without the support of "SemiColon".

You're going to beat this!

-Nick

JR6020
Posts: 14
Joined: Apr 2010

Thanks Nick and Buzz and everyone else foe inputs. My wife has crohns and after her last surgery she got on a posting place similar to this only with other crohns patients. Honest thought it was kind of silly at the time. Now I could kick myself in the *** for thinking that. Don't even know you all and feel like we've been friends forever, the connection I guess all fighting for the same thing...life. Something I've been taking for granted. Still have a thousand ?'s, bought a journal to write down thoughts, event etc throughout not wired idea is it? Bad memory, think I already said that....can't remember :) came up with plan on way home from work. My youngest son just turned sixteen not to long ago. Told him he could buy car when he got a job well he got job so now I'm going to buy it for him but the catch is he has to pay me back ten dollars a month for 180 months (15 years) that will put me at sixty and everyone knows I'm a tight *** and won't go anywhere if someone owes me $$ :) getting it in writing too!!

khl8
Posts: 810
Joined: Nov 2009

I like your car idea, sounds a bit like and insurance policy to me! LOL
I understand what you mean about this board, I did not find these wonderful people until my treatment was just about over. I wish I would have had them form the beginning as everyone here has been fantastic. If you are happy they smile with you, if you are sad they shed a tear, you want to vent they let you. And when you start acting like a jerk, they will let you know.
As for questions? we got a whole lot of answers!
Kathy

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

Your attitude already JR! and to do that with your son is awesome, now you have something to fight for, not just for your kid, but for your money! LOL! if you need to open that journal of yours with some questions, we're here to help you if we know the answers. Alot of people going through the same thing you are.

Welcome to our family, where we are all sisters and brothers in this fight against this horrible disease. We've lost alot of our friends this year, but we move on with our fight, even though our friends are still around us cheering us on. We do get to know everyone pretty personally here through our posts and phone calls even, and hope to one day be able to meet. Colonpalooza helps with that, if you can afford it, but they said they have a blast, and always great to be around people going through the same thing as you.

Hugsss!
~Donna

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

One more valuable source of information I forgot t mention. I got a copy of the American Cancer Society's "Complete Guide to Colorectal Cancer". Hopkin's gave me this as their basic rectal cancer info pack. This gave me a tremendous foundation in understanding all aspects of this disease.

caribou
Posts: 6
Joined: Mar 2010

My husband was in a very similar boat, diagnosed in 2006 but still alive and well despite several recurrences (currently no evidence of disease). I wish we had found these boards back then because I remember how completely overwhelming that time was.

I'd like to recommend a book that my husband and I have both found very helpful and reasurring, called Cancer: 50 Essential Things to Do. It's a friendly read, very informative and takes a can-do, action-oriented aproach to dealing with cancer.

I agree with the others who have stressed the importance of finding a surgeon who makes every effort to avoid permanent colostomy. Not every patient will be able to avoid it, but my husband did, and I believe it was because he went to a surgeon who is committed to preserving function as well as possible.

My husband had preoperative chemo and radiation as has been recommended to you. My understanding is that everyone responds differently to these treatments, but my husband tolerated them well. One side effect that no one told us could happen from the radiation was increased rectal bleeding. Because no one told us about it, it scared my husband to death--even though it turned out to be no big deal. It may not be a common occurence, but you might ask the radiation oncologist just to be prepared. I hope this is not TMI.

Very best wishes to you as you begin your journey of healing.

Nory

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jillpls
Posts: 241
Joined: Mar 2008

Welcome Joe, I'm sorry about your DX. I will always remember the day I was DX with rectal cancer. It's no fun but getting the information and a good group of drs is so important. This board is great with so many positive stories and people, as is the Colon Cancer Alliance. Lots of long time survivors and people living each day. Lots of good info and knowledge shared here. God bless you on your new journey and remember to take each day as it is and not worry about tomorrow. JIll

JR6020
Posts: 14
Joined: Apr 2010

Had ultrasound today no sedation, ouch!, pretty neat as far as technology goes just wish it were PBS documentery I were watching instead of my own butt. Not great news, staged me at T3N1. Guess could have been worse. Colostomy may not be avoidable. May get second opinion from Dr in Cleveland. Will find out more on Thursday. Hope everyone on here having good day today. I know just after 1 week they go up and down, pretty down today. Joe

khl8
Posts: 810
Joined: Nov 2009

JR,
I have a fantastic Surgeon here in cleveland, he saved me from a permanent colostomy! He is out of University Hospitals of Cleveland.
kathy

mark440's picture
mark440
Posts: 63
Joined: Jan 2010

I went to the cleveland clinic dr. jon vogel...he was awesome open surgery no bag!! Im so happy I went there!! Please look into a second opinion there!!!

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

Hang in there man! Give yourself the opportunity for a good cry and shouting at the wall every week or two. I found having some personal time away from everyone and just letting the emotion out has been very helpful... helped me avoid taking it out on loved ones and not have to kick the cat ;-) Exercise and researching surgical options has been a good outlet too!

Give yourself the piece of mind for additional opinions. I queued up the chemo/radiation before surgery pretty quickly, but have delayed making the surgical decision until I have my 3rd opinion from Sloan in NYC (tomorrow). I'm glad I had the 6 weeks of chemo/rad before hand to allow me time to research the knife options - in addition to the benefits of shrinking the tumor before hand. Stage/location of my tumor makes colostomy likely and if so, then I'm okay with that given the understanding of what it means based on data and actual peoples stories on quality of life - like this message board - to temper the emotion with good advice and experience.

You're not alone in this!

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

Hi Joe,

I just found out on Feb. 21 that I have Colon Cancer, Stage IIIB, I did have surgery to remove tumor and cancer cells where found in one out of 40 lymph nodes. I will start Chemo on Wed the 28th of April and my out look is really good. I can't really say I know how you feel because I did not have to have a colostomy, the doctor removed a 8 inch portion of my colon and reconnected it. I am still recovering. The good news is I am currently cancer free and the Doctor is shooting for 100% cure, of course only time will tell. I am 55 years old with no history of caner in my family, I have to say it was quite a shock to me. I wish you luck and don't give up hope. I am glad to hear you have a veery supportive family, it means everything, I do know about that.I have a very positive addituted and I thing that is 70%of me getting better.

Sue

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Sorry you have to be here, but glad you found us. I also have stage IIIB. Chemo isn't really pleasant, but I've done OK so far. I'm done the end of June.

I'm also feel like I'm cancer free. My dad died of colon cancer which prompted me to get my colonoscopy earlier than most. I had no signs or symptoms that anything was wrong. Just a voice in my head telling me to get my hiney in there and get it done. My oncologist told me that 80% (evidenced of people who choose to forgo chemo) of stage III's are cured by surgery alone. However, we're not sure if I'm in the 80% or the 20% - so we did chemo just in case as a mop up. I didn't want to chance anything.

Did you have a port put in? I really hope so. It will save your veins. :)

Love and hope

Holly

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

Hi Holly,

Nice to meet you, sorry for the reason. I did have the port implant one week ago. I start Chemo on Wed. I don't mind telling you I am a little scared. I feel the same as you. My Doctor told me With just the surgery I could expect a 70% cure but with the Chemo we could shoot for 100%. I could not see taking a chance so I am going for it. My lungs and liver look good so I believe you should do everything you can to help yourself. My Doctors have told me this will be my chance to kill any of those nasty cancer cells which am be lurking about. My attitude is " lets go get them". You are almost done with Chemo, how did it go? I am staying off work while on treatment, did you feel like you could work? I will also be staying with my mom for a few day after my first treatment , as I don't know how I will react to it. Any advice for me?

Sue

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I do work, Sue. I'm an RN and work with babies and moms. I only do 2 days a week and try to trade during chemo week so I have that Thursday, Friday and that Weekend off.

You have a great attitude which is 90% of the battle. My chemo has been interesting. I had a reaction to my oxaliplatin last time, so I do have to talk to my onc about either lowering the dose or spreading out the infusion time. :) My onc nurse told me he'll never give it to me again, but I'm gonna try to talk him into doing at least two more treatments, even if I have to do it in the hospital.

Other than that, it's been very tolerable. Ever since they did surgery, my elimination pattern has been way off. Sometimes I have a bowel movement several times a day and during chemo, I'm taking senakot on Wednesday night trying to avoid constipation which chemo gives me. Some people get diarrhea. I also take a pill called famotadine. It helps with the heartburn that the dexamethazone (steroid)gives me. The onc nurses also give me Aloxi (anti-nausea) on the first day. On the first night (Tuesday), I also take Ativan which helps me sleep. I also take home a pump that pumps 5-FU until the next day. I get leucovorin and a push of 5-FU plus the pump on Wednesday, where I totally feel fine and Thursday is disconnect day (YAY!!), but I do go home and I'm extremely tired. I don't get nauseated, but I do sleep almost constantly that first day. Friday is about the same. I don't have an appetite although I'm not nauseous. My taste buds are fried until about Sunday when I feel normal again.

I laugh because my bottle pump is hidden in a fanny pack. It's quite loud and goes "Woosh, click, woosh, click" and my patients look around the room and wonder what is making that noise. When I tell them it's just me, they look at me like I'm really weird. LOL

My taste buds are still a little fried, but I can taste things. It feels like I burned it on hot coffee. :) What's weird is that I now crave chicken and orange juice. Not together, but the Sunday that I feel good, my husband always fixes me chicken. He's the best!(I just had to add that!) I drink OJ by the quarts. I guess that could be better than craving beer or something like that.

Now that I see you live in Maui, I'll be there in December. A gift from my daughter who is taking me and her friend is taking her mother. I'd love to meet you in person. You should be done with chemo by then. :) You could also give me hints on where to go and what to do (cheaply) on that island. And yes, the beach is the best healing medicine in the world. I love hearing the ocean. I'm sure it reduces my blood pressure to a normal range. LOL

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

I had to laugh when you asked about cheap things to do on Maui. There is really nothing here that is cheap, oh you can go to the beaches and drive around the Island, sight seeing, but even gas right now is $4.00 a gallon. It is pretty expensive here but I can't thing of a more beautiful place to go on vactaion, just bring lots of money because there are many wonderful things to do here. It is great that you are coming in Dec. the whales will just be arriving from Alaska. They are so wonderful. I come to Maui in March of 2008 for a vacation (my sister lives here) and I fell in love. I was single at the time so I knew I had to come back here to live. As it happened my mom and stepdad had move here in June of 2008 so I packed my bags and moved here in July of 2008. This is where I will spend the rest of my life. AS I have told other people, I guess if I had to get sick this is the place to be.
I would really love to meet you when you come to visit, just keep in touch my email is susan_landers2000@yahoo.com you can email me any time, just let me know in the subject line who you are, as I delete email I do not know.

Sue

P.S. thank you for the infor.

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Sue,

Welcome to this forum; I am glad you found it. It sounds like you have a fantastic attitude for dealing with this. Take good care!

suelanders's picture
suelanders
Posts: 25
Joined: Apr 2010

Thank you for the welcome. I can use all the support I can get. I do have a great family and I live on Maui Hawaii, I guess if you have to get sick this is a great place to recover. The beach has great healing pwer, it makes me feel so calm.
Sue

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