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Newly diagnosed with rectal cancer

ac
Posts: 84
Joined: Aug 2008

Hi everyone,

I have just been diagnosed with rectal cancer on Aug 28. The last week has been tough to say the least. I found out from a colonoscopy after I had blood in my stools. I am 36 years old and married with 2 lovely girls (1 1/2 and 4 years old). My wife is a stay at home mum and she has been a pillar of strength for me.

I have my ultrasound, CT scan, radiology and medical oncologist appointments lined up this week and next. My surgeon is recommending radiation/chemotherapy for a few weeks followed by surgery and follow up chemotherapy.

Anyone have any advice on must ask questions for my surgeon and (radiology and medical) oncologists? I am worried that I may have missed something.

tootsie1's picture
tootsie1
Posts: 5016
Joined: Feb 2008

I know this has been a nightmare week for you and your wife. I have not had rectal cancer, so someone else can probably advise you better on that (I'm colon cancer, Stage 1). I just want you to know that you'll find solace here.

*hugs*
Gail

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

I had stage 2 rectal cancer and was treated for it over two years ago, apparently successfully (knock on wood). I have a couple of suggestions for questions, but they are sort of theoretical, since personally I didn't ask questions -- just followed my doctors' recommendations. One is to ask about your stage, 1, 2, or 3, since it will help to keep oriented about your treatment. (They will learn more about your staging after surgery.) Another is to try to make sure all your specialists are on the same page in regard to your treatment. If you get the same story from your oncologists as from your surgeon, that's good.

And you'd probably like to know whether your surgeon will need to remove your anus, making a colostomy necessary.

-Greg

nudgie's picture
nudgie
Posts: 1480
Joined: Sep 2006

First off, welcome to best family on the web you will every meet. We will be here for you throughout the entire process and into the future. Ask any question, vent as often as necessary, and keep us posted every step of your journey.

I was DX with Stage II colon cancer in 7/06 by having emergency surgery. Did your GI Doc give you any indication of what he/she found during the colonoscopy? Some GI Docs can basically let you know, but the pathology report will actually tell you everything from which Stage 1, II, III or IV, if it spread to any lymph nodes (NO, N1, N2, etc) and if it spread to any other organs (M0, etc). It will also tell you what type of cancer and the differential of the tumor. Make sure you get a copy of this report.

In addition, I found out taking charge of your health and health care is very important during this journey in your life. I have a 4" ring binder that has all my papers which include, pathology report, bloodwork reports, medical bills, cancer info, CT Scan reports, misc imaging reports, etc.

If you don'f feel comfortable or get a good vibe from your current doctors, onocologist, radiolist, etc., a second opinion is never out of the question.

Sandi1's picture
Sandi1
Posts: 277
Joined: Aug 2008

I agree with Nudgie, you must research this disease. Ask alot of questions, and get copies of everything and keep everything together. My husband was diagnosed with Stage 4 colorectal cancer on Aug. 13th. Like you, we have had a very stressful time. We finally got into see the surgeon and my husband will be having surgery on Sept. 15. The surgeon suggested that we have surgery first then chemo. Email me if you need more information. Things are going to be alright !!! Believe me, I felt exactly like you - but now that we have a plan I feel much better.

Sandi

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

Hi,
I know your week has been tough on you and your family but I know it will get easier when you get through the appointments. I was diagnosed Stage 4 in Oct. 2005, my rectal cancer had spread to my liver. I did 6 weeks of radiation and 5FU chemo before surgery to remove the primary rectal tumor. I had an endorectal ultrasound done before any treatments for staging purposes and to decide if I needed radiation and chemo first because the doctor could not get around tumor during the colonoscopy. I also keep a pocket notebook filled with questions appointments etc. in case I forget to ask my doctors things that I have wondered about. I had my primary tumor removed March 2006, liver resected May 2006, and lung nodule removed June 2008 ...as I type this I feel great and have a good attitude and outlook for things ahead. Please know that you will be in my thoughts and prayers and let us know what the doctors say about treatments, surgery or just to ask advice. Hugs to you, Audrey.

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

I was diagnosed with Colorectal cancer on March 24th through a Colonoscopy exam. The tumor was low in my rectum and was given a 30% chance of saving my rectum. After 5 weeks of radiation and chemo I was told that even though the tumor had shrunk down greatly it was still to low to save my rectum so on July 15th my inner spincter muscle, rectum, and about 8" of my colon was removed. I am now using an ostomy for life but everyday its getting easier to accomodate myself. The surgery was textbook and recovery was great although sitting is just now getting comfortable enough to do it for long periods of time. I feel great and am fixing to start a regimen of Folfox for 6 months. My work is allowing me to come back as I feel like I can and so far (knock on wood) I feel great. The treatments will start this month so time will tell on how that goes but so far so good...
You can look forward to dr appointments almost everyday for 3-4 weeks. They might also want to place a chemo port into your clavicle area to administer chemo and medicines. You will be poked and prodded to no end but you will get use to it. I did go to a surgeon to have the surgery done but after thinking about it I got a second opinion and ended up at Vanderbilt-Ingram Cancer Institute. My surgery was done on Tuesday the 15th of July and I was dismissed that Friday at 11 am...
The major obstacle for me was depression, I took care of that with Fluoextine (Prozac) to allow me to not dwell on the bad but to stay positive. I always had trouble with control issues but with this disease you have none, other than your treatment regimen. This gave me back a little of the control that I needed to make me feel better. It is a mind game that you will win when you make your mind up to allow it.....good luck to you I am about 2 months in front of your progress right now and you as well as I will be fine...just look for ordinary days and enjoy the ones that don't have a Dr appt with them.....

teacht
Posts: 4
Joined: Aug 2008

Hi! I'm just a couple months ahead of you. I was diagnosed with rectal cancer on May 16, 2008. I am 42 years old and have a wonderful husband and two awesome boys(8,10). Like you, this was a big shocker as rectal cancer is not common for people our age. I went through test after test. When everything was completed I learned that I was a stage 1. I went in for rectal resection on June 12, 2008. Surgery went well and after probably 6 weeks I was pretty much back to normal with the exception of a temporary colostomy. I have had a couple bumps in the road, but I am scheduled for a reversal at the end of September. If you are looking for questions, the ACS posts different questions that are recommended to ask your doctor. I would recommend printing them out and taking them with you to your appt. I wish you the best of luck and remind you to take a day at a time. You may have some rough times, but you will beat this and come out on the other side. Keep the faith!

Lilbit1
Posts: 3
Joined: Jan 2008

Hi everyone,

I was diagnosed with colrectal cancer in 01, I had radiation and chemo treatment, 6 weeks of radiation and 2 weeks chemo. I had a resection and several surgeries. In 04 I started having leg and buttock pain,I can not not walk far before the pain starts and I have to stop. I am tired all the time from fighting the pain. My vascular Dr. said it was poor circulation from smoking, but then a saw a nero Dr.. and he found nerve damage from the radiation. I have all sorts of other problem in my pelvic area. I have spent years trying to find out what is wrong, it has been a very long process. I was doing better after my cancer surgery than I am doing today, all from the cure. Would I do it again, I do not think I would.
My heart goes out to you and yours. The only advise I can give you is, always have someone with you at all times when seeing your doctors, as it is so much information and so very hard to keep track of when in pain and on meds.

Sincerely

Lilbit

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi,

I am glad you have found this forum so early in your journey. You will find a wealth of information here as well as a group that knows what you are going through like no other. I am sure your wife will accompany you on your doctors' visits. I found it helpful to have someone take notes because the appointments move so quickly and so much new information is being given you, it's hard to remember it all.

I am sorry about your diagnosis. We will be with you every step of your way.

Hugs,

Kay

jams67's picture
jams67
Posts: 927
Joined: May 2006

There is a wealth of information on this forum and unfortunately many as young as you are. I am 3 years out with no evidence of disease (NED)from stage iv. Find a good hospital and doctor you can trust, get a second opinion about treatment. There are people here from everywhere so someone may be able to help with a recommendation. Good luck and let us know what is happening.
Jo Ann

Jimbob-'s picture
Jimbob-
Posts: 50
Joined: Jan 2008

Hello AC;

I am a 66 Year Old man; On April 24, 2005 I noticed rectal bleeding, Red Alert!!!, Went to Doc, had Colonoscopy, Found Tumor, Biposy, Cancer. Tumor overlaped the Rectum and part of the Colon. On 29 April I had Surgery, Was unable to save the Rectum. Therefore permanent colostomy.

Good News in all of this is that I am the Poster boy for early detection. I had syage One, No Lymphnodes were affected, No colon perforation. No Chemo or Radiation was required.

So I was very lucky , Except for the colostomy. Which is not a problem and the reason I am writing.

If you end up requiring a colostomy, believe me it is no big deal....Nothing in my life has changed. I Play Golf, Walk, Ride a bicycle, attend many dances and Balls, particularly around Mardi Gras time. And When I can talk the wife into it, the occasional private time. Wink/wink.....

With todays modern appliances there is no Odor, easy to change, if you are able there is the irrigation option which is basically doing an enema every so often to clean yourself out eliminating any Poo in the Bag.

Hopefully you will not need a Colostomy, but I am writing just saying it is not a bad thing. You will still be a Father and a husband, and believe me. It is better to wear a Bag than to be in a box.

Jimbob

ac
Posts: 84
Joined: Aug 2008

I just want to thank everyone for the well wishes and prayers. I am most likely stage 3 at this point. I feel much better now emotionally now that I have accepted the news.

I just started 5 weeks of neo-adjuvant radiation and chemo (first day today). I am on Xeloda and was wondering when the side effects would kick in if anyone was on the same treatment?

Andrew

taraHK
Posts: 1961
Joined: Aug 2003

Hi Andrew,

Good luck with the Xeloda. Everyone reacts differently -- to any chemo or chemo regime. So it is a little difficult to say when the side effects will kick in or even which ones you will experience. Generally speaking, it seems xeloda is considered to be a relatively easy drug, in terms of side effects. I am taking it now but in combination with oxaliplatin. I have had some fatigue and some nausea, but it's a little difficult to say which drug is related to what at this stage. I don't have any other symptoms yet (one week) but my feet are a little tingly and my finger pads a little sensitive. Good luck with it! Tara

taraHK
Posts: 1961
Joined: Aug 2003

Hi. As others have said, I'm sorry you have occasion to be here, but you have come to a great group. My diagnosis was similar to yours: I was diagnosed with Stage III rectal cancer. Your general treatment plan sounds very similar to mine, and to what I understand is usually recommended for Stage III rectal cancer these days. That is, presurgical chemoradiation followed by surgery followed by more chemotherapy. I can't think of any obvious questions you have overlooked so far. It is good that you had presurgical ultrasound -- useful for staging. Others have mentioned the issue of colostomy (temporary or permanent). Your surgeon may not be able to make a final decision until during the surgery itself, but it is worthwhile having a early discussion about likelihood. Also, I read in your second post that you are having xeloda as your presurgical chemo. Do you know what chemo regime you will be on for post-surgical? It might be worth a little discussion with your docs about that -- which regime are they recommending and why. I would want my doc to be able to tell me why she/he is recommending one regime over another (recent research evidence, current best practice guidelines). It sounds like your docs are right on top of everything. I wish you all the best and please don't hesitate to ask questions about any aspect of this journey. Tara

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