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Just found out rectal cancer-Joe

JR6020
Posts: 14
Joined: Apr 2010

Hello
Wish myself and everyone else not 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. 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.

Joe

z's picture
z
Posts: 1273
Joined: May 2009

Hi Joe,

Sorry you have to be here. Have you already been told you have to have a colostomy? I know that these tumors can be treated with chemoradiation therapy. You also might what to post on the correctol discussion board, as I am sure there are many rectal cancer survivors there. I hope everything turns out good on Monday after your ultra sound, and you will have a better idea as to what treatment you will be receiving. Its also great that no other organs have been affected. Lori

JR6020
Posts: 14
Joined: Apr 2010

Thanks for replying. The surgeon said most likely I would, actually said I would but I can hope, and was going to do chemo/radiation to shrink tumor and then surgury 4-6 wks later. I will try other board as well. Hope you're ok. Very strange being on this sight, like a bad dream I havn't woke up from yet. Trying very hard to keep positive outlook. Thanks again

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Hi Joe

I'm from the Colorectal board, but I stop in here occasionally to see if I can offer anything to the folks on this board.

I was reading your treatment plan and it sounds similar to what I went through. We did 5fu pump on weeks #1 and #5...we did radiation the entire 5 weeks (25 cycles).

The goal was to shrink the tumor to allow a rectal resection and spare myself a colostomy. There were only millimeters separating me from this procedure, so I went ahead with it to try and save myself from that.

We did wait about 6-7 weeks after the last radiation treatment to allow some healing before surgery. The timetable is crucial to the outcome as after about 8-weeks, scar tissue begins to build up and this would have nixed the resection and made it not doable.

The treatments and surgery were successful, but my colon never got a day off to rest and heal, so it took me 2-3 years of recovery before things began to settle down. By year 4-5, it became much better, but it was a hard way to go.

Hopefully, the radiation treatments could shrink the tumor enough to allow a resection as well and avoid a colostomy - every millimeter helps. Of course, the surgeon would be better able to tell you about what they thought the prognosis would be.

I know it's a scary time for you right now! The unknown always is. I had gone 5+ years battling cancer before I ever found the CSN board, and now I spend my time trying to help others like yourself with what I've learned. I wish I had some of the answers that I read here.

Just one step at a time - corny sounding as it is, it's true - just one day and let the calendar just roll on - time, sometimes alot of time will make things better and you will heal and become the "new normal" that you will be for the rest of your life.

I was 43 when I was diagnosed...I'm about to be 49 now and I was given a death sentence by the doctors, but surpised them all by being here - you can walk down the same road with me. Hang in there, but do get started.

Take care
Craig

Cutch's picture
Cutch
Posts: 10
Joined: Jul 2010

I also had or have (depending on your definition of cured) rectal cancer. I was diagnosed in January of last year while I was in Georgia (I live in Boston) my first doctors opinion was I was going to loose my prostate and rectum and be on a colostomy bag for the rest of my life. Needless to say I was Bullsh@t about it. So I got another opinion. I am now 5 months past my final treatment. I had 28 radiation treatments and 2 round of chemo and a colorectal resection. I had a colostomy bag for 9 weeks. I have been back to work full time since I recovered from surgery. There is always hope and there is always another opinion available. My doctor told me she couldn't tell if it was going to be permanent until after surgery. So hope for the best. If this is your first surgeon and that is what he is telling you, I would find another Doctor. There are to many factors in this kind of cancer for a doctor to make that kind of decision before you have even finished treatment. Good luck and when you needs words of encouragement come back and see us AND DON"T EVER LOOSE HOPE!!!!

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

Hi Joe--

I want to welcome you but I'm also sorry that your circumstances have brought you here. I hope you find the support you are looking for on this forum. I'm glad your CT scan shows no spread to other organs. Please keep us posted on your upcoming appts. and treatment. Take care and may God bless.

JR6020
Posts: 14
Joined: Apr 2010

Thank-you, I will keep you posted. Hope you are ok

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Joe. Repeating what others said, sorry for the circumstances that brougnt you here. I feel confident that you will find this forum to be a source of inspiration and information. You will soon have a definite plan for treatment; it was my experience, that once you can set that into motion, you will be in a better place mentally. All of the unknowns in the beginning can be very overwhelming. The suggestion to start a thread on the colorectal board was a good one. Anal cancer and rectal cancer are biologically different and consequently the treatment can differ also. With that said, there are a lot of issues that treatment may present that will be alike or very similar. So you can take advantage of the knowledge of both boards and we will certainly be glad to offer all the knowledge we have aquired and support that we can. Breathe deeply, keep your chin up and put on your game face, YOU CAN DO THIS.
Blessings,
Joanne

winnipeg
Posts: 24
Joined: Apr 2010

Hi Joe, I have an ostomy put in last year and I got used to it. Oh believe me it took a while. Stay in touch please. I'll walk you through it. By 1 year you will not worry about bad smells, bad noises, what people will think, whether anyone will love you, etc. I swear it!

Meanwhile: do you have adenocarcinoma of the rectum or squamous cell cancer of the anus? regardless of exact location,. if it is adeno, you treatm,ent will be a different than anal cancer folks get.

Anyway, I had it all with anal cancer and reached a full remission thanks to my blessed ostomy.

Get that cancer out of your body as fast as possible.

PLEASE write back and tell me:
type of cancer
have you been scanner for linger and lung problems?
where you are, generally speaking.

Thanks, a lucky optimist!

Winnie

JR6020
Posts: 14
Joined: Apr 2010

Not sure exactly. Just started journal to keep tract very uneducated when comes to cancer. Going for anal probe ultrasound on Monday to find out stage of tumor. Rectum I think, 2cm from opening. Lungs, heart liver kidneys all pelvic area look clear maybe one node suspicious. In south Indiana
just south of Bloomington

steve714's picture
steve714
Posts: 15
Joined: Feb 2010

Hey guy, you have come to the right place for help and support. Most eveyone in here can help with what to expect and how to deal with it. On nights I panic and cant sleep I read the stories of others and I regain some strength. I have anal cancer and had the surgery to remove the mass end of Jan. Mid March I started chemo and rad, Unfortuatly I had a very bad reaction to chemo and had to stop that part, but am still doing the rad. It is scary and bizzare treatment but folks in here are willing to help if we can. My advice is to talk frankly with the Doctors and make them control any pain you may be having you do not need to suffer phyical pain. Any queations please ask. Steve

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Joe,
I hope the few days that have passed since you posted have helped you think through some of what you now know... especially that there are lots of us who are "experienced"!

I had what was originally diagnosed as "squamous cell carcinoma of the rectum". The tumor was mostly in the rectum but crossed the dentate line into the anus. The dentate line is like where your lip phases over to the tissue that lines the inside of your mouth- goes from "skin" to a mucous membrane.

My medical oncologist insisted that it was anal cancer and I have come to agree that it was anal cancer that started very near the rectum and the tumor was largely in the rectum. Hence, my treatment was the same as for squamous cell carcinoma of the anus. And, I am now 2 1/2 years out from treatment and have been cancer free. Next round of follow up tests coming up in May.

Your prognosis is good if you are in the same category as I am.

Keep us posted. We are rooting for you!

Priscilla

tiny one
Posts: 467
Joined: Jan 2009

I was diagnosed Feb 1, 2007. My resection was on feb 19, 2007. My polyp was low with 1 lymph node testing positive. I had a temporary ileostomy for 10 months. During that time I went thru chemo and radiation. Went thru treatment very easy. I had a mediport which enabled chemo to be 24/7. My reversal was Dec 21,2007. I am cancer free and doing good. I have side effects from radiation which made my reversal difficult. I deal with those bathroom issues day to day. I did not seek a second opinion, you may want to. Have them explain about all the side effects you may or may not experience, especially radiation. I do know that my surgeon is a very good one from some of the comments I've read. Is it possible if you have surgery to do it laproscopally? We're all here for help and support for you.

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

Hi Joe
I just wanted to stress that it's important to determine rectal from anal cancer. I was originally diagonsed with rectal but when I went to MD Anderson they confirmed anal. The treatments are different. Be sure to ask your doctor's how certain they are that it is rectal AND how many cases of anal cancer have they seen. The reason I say this is because the first doctor I met with had only seen 2 cases in 12 years. I went to MD Anderson and they see that in a week. So ask and if you don't sense their confidence or even if you do, second opinions can be reassuring and sometimes life saving.

I wish you well and I'm glad you found this forum.
Liz

winnipeg
Posts: 24
Joined: Apr 2010

I too wish you well. Liz was describing the course of her treatment at MDA recently, and I must say the care she got seemed very well coordinated. I also like the way they use Cisplatin rather than Mito. At least one forum member on a small Rare Cancer group elsewhere (ask me about it later) had a bad cardiac reaction to mito and spent nights in the hospital because of it. Also, I am in a very good full remission from Stage 4 anal SCC with mets to the liver, no nodes, and I had Carboplatin and Taxol. Carbo is a platinum drug, as is Cisplatin, so that just makes me happy to hear! During my Carbo/Taxol period, I also got Xeloda, the oral form of 5-FU. The three drug combo made the mets go away by June 208 and as of March 2010, they are still gone. I wish everyone got Taxol and frankly do not know why they don't.

W

4papajoe
Posts: 3
Joined: Jun 2010

Hi Joe, I am here for my papa Joe. We were diagnosed in May with what sounds exactly the same thing as you. We start radiation and chemo on June 7th. We were told that surgery is a must with possibilities of the bag, doc's won’t know yet until they go in and see how much the tumor has spread and what will shrink with treatment. Will keep in touch with you and see how things are going.

Deborah

sissy310
Posts: 300
Joined: May 2010

Hi Joe, I'm sorry you are in here along with the rest of us but only because of the cancer we have...I have been on this site for a week now and it has gotten me through some difficult moments. Am in the beginning of finding everything out, I think I have rectal or anal cancer - latter the dr said today he thinks so too but it is large and he wants to review all the slides and such from the previous doctor. Hang in there. The information and comfort and knowledge from everyone on this site has been invaluable to me and I know will be invaluable to you. I wish you well. Keep us posted. Be well. Marilyne

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