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Old 12-06-2008, 11:37 AM   #1
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threeedogmedia HB User
New to board - just diagnosed with rectal cancer

I just got the horrible news that I have rectal cancer last week. I'm only 56.... This shouldn't be happening! I'm still in a fog and really need to start some more research so I become educated with everything that will be happening. The worst information was that the tumor is so close to the muscle that I will most likely have to have a colostomy. I haven't cried this much in my life. I begin 6 weeks of chemo and radiation next week and then will have surgery sometime 8 to 10 weeks later. I've decided to let the surgeons do a total hysterectomy at the same time so it can't come back there..... Do any of you know of any web sites that might be of benefit for me to look at regarding rectal cancer or colostomy procedures? I am so scared.

I have been having a colonoscopy every three years for the last 9 years. They have removed little polyps each time I've gone in and all in the past had been fine. This tumor wasn't there the last time so I can't begin to stress the importance in getting checked. I was due for my 3 year recheck and noticed bright red blood on the outside of the stool and had thought that it might be an internal hemorrhoid. GET CHECKED if you have problems. My PET/CT scan shows that it has moved to other organs yet and they gave me a number of T2 for depth of the tumor. We still don't know if the lymph nodes are involved and won't know for sure until the surgery. If they are, then I begin chemo again after the surgery.

Any information that you provide would really be appreciated. I know I have a great team of Doctors but if I don't become educated, I won't really know what to ask them.

Thanks in advance
Karen

 
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Old 12-06-2008, 12:01 PM   #2
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Re: New to board - just diagnosed with rectal cancer

Dear Karen, I know my information may be ignored at this time, but I just can't help saying that there IS cure for cancer, and it's not found in conventional medicine. I know you trust your doctors now, and I do hope you'll be cancer-free very soon. Anyway, if anything goes wrong with the 'treatments' they offer, just don't lose hope, don't give up (and I'm sure you won't!). Just go alternative. There are, for example, treatments with iodine, sodium bicarbonate, etc. I know this can sound outrageous to many doctors, but I also know how much cancer patients need real help/cure when conventional medicine fails. So just keep in mind that THERE IS CURE FOR CANCER, no matter where it is!

Last edited by peace4health; 12-06-2008 at 12:02 PM.

 
Old 12-06-2008, 03:07 PM   #3
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idunno HB User
Re: New to board - just diagnosed with rectal cancer

Hi karen,
I was dx with st3 colon ca at age 48. It was very aggressive and into 6 lymph nodes. I had suegery and a year of chemo. Next month will be the start of year 12 ca free. It can be beaten,best wishes Ron.

 
Old 12-06-2008, 04:03 PM   #4
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Re: New to board - just diagnosed with rectal cancer

Hi Karen, I am sure Ron will have encouraged you. My husband too was dx over 5 years ago with Stage 111C and is doing well today. He was told he would need a colostomy but they managed to avoid that. The only side effect he has is urgency.

There are people on this board who live normal lives with colostomies so do not be too disheartened if you have to have one. Of course, it is scary but you will adjust. I am sure someone will post soon to encourage you with that.

I hope your treatment and surgery go well. Please post again with any questions or concerns you might have. We are not allowed to include links on this forum but if you search around you will find advice and information on both rectal cancer and colostomies.

Your feelings of fear and anxiety so soon after diagnosis are very normal and understandable. That is why we are here to help in whatever way we can.

Alison

 
Old 12-07-2008, 06:12 AM   #5
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Re: New to board - just diagnosed with rectal cancer

good morning. i was one month shy of my 50th birthday when i was diagnosed with stage 3 rectal cancer. after 6 weeks of chemo and radiation i had "j pouch" surgery. this surgery was to not only remove the rectum, but to save the spictor muscels. i did have to have an illiostomy until the colon healed from the surgery. i then had 6 more months of chemo..but then after the loop closure the ilisotomy was removed and i now use my new "rectum". i have some issues with urgency and diarrihia...but better then a permanent iliostomy pouch. i would suggest a surgeon who specializes in colon cancer. the first surgeon i met with was a general surgeon and told me i would probubly loose my spinkter mussels and have a permenant ostomy pouch. not so when speaking with the colon specialist. find a surgeron who knows the j pouch proceedure. i have been working for 2 years to get to this point...and my new normal is allowing me to live a full life.
hang in there. you'll get there. keep your eye on the prize. God has Blessed us.

 
Old 12-07-2008, 10:26 AM   #6
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Re: New to board - just diagnosed with rectal cancer

Hi Denise - thanks for the information. The surgeon I met with is a specialist in colo/rectal sugery and he said because of the location of the tumor (approx 1 cm away from the sphinctor) it just wasn't enough room to be able to remove the tumor and attach the tissue and save the sphinctor. He said it would come back if he doesn't give a buffer of room...... He knows I would rather go into a field and kill myself rather than have this procedure. I can't seem to get past this and haven't really even considered that I have cancer. Isn't that pretty stupid? I know there are people out there who have an ostomy that can cope and even thrive but I don't know that I have that kind of strength.

I love my oncologist and the radiologist - they are truly very special caring people but this surgeon was just plain insensitive and almost to the point of being rude when he gave me the news. I will probably seek a second opinion at some point while I'm going thru chemo and radiation. Everyone says that the surgeon is very gifted as it pertains to his specialty but he should never be allowed to talk to a patient! At the very least, he could have said that as he was doing the surgery, he would try and do everything possible to excise the tumor without damaging the sphinctor.

I'll research the J Pouch and see what I can find. Thank you for the information. I was on emotional overload yesterday while researching all of this. I just can't seem to stop crying and I know I need to get to a point where I'm mad so I can start figuring out what to do.

Karen

 
Old 12-07-2008, 05:03 PM   #7
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Re: New to board - just diagnosed with rectal cancer

Karen, you are going through the normal responses to the news that you have cancer. None of us will forget that moment, I am sure. Allow yourself to go through the emotions that come over you. It is great you like your oncologist and radiologist...those are going to be two of the most important people in your life for awhile! My husband and I have the same oncologist as we both have/had cancer and I love him dearly. As to the surgeon, some have a way of saying the most upsetting things. Can you imagine when I got my diagnosis of lymphoma, one said to me "Will it kill you? Well. possibly but probably not for some years yet"!! Luckily, he was not the one who first gave me the diagnosis. Unbelievable!

You may have to weigh up the fact that he is so well skilled in his speciality against his total lack of bedside manner.

It is good to research but try not to overload yourself...it can be so overwhelming.

Alison

 
Old 12-08-2008, 04:55 AM   #8
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Re: New to board - just diagnosed with rectal cancer

karen. you will find the strenght to fight. i really like this quote:
anyone can give up; it's the easiest thing in the workd to do. But to hold it togetherr when everyone else would understand if you fell apart, that's true strength."

please explore the possiblility of having the j pouch proceedure...and finding a new surgen. i had mine done by dr. ludwig. he moved to teach; therefore i had dr. mantye, do the closure. he was dr ludwig's partner. both these surgeries where done at duke university medical center in durham nc. my tumor was so low in the rectum, the dr could feel the tumor through physical exam. that is how low my tumor was. and how close it was to the shinker.
i also didn't look for a specialist until i "got my head together". this was during radiation and my first round of chemo. i would suggest look as soon as possible, before the treatments make you weak.
maybe researching my dr will lead you to a specialist in your state.
as far as the ostomy goes...i hated it...but, it would have been fine if i had to have had it forever. a person can adjust. and if it is choosing between an ostomy and my family..no contest!
focus on your inner peace. and find your Blessings. then trudge forward. you'll get there.
peace

 
Old 12-08-2008, 05:01 PM   #9
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Re: New to board - just diagnosed with rectal cancer

I'm so sorry to hear of your diagnosis. I am your age and was diagnosed almost 6 years ago with rectal cancer as well. I had a temporary ileo for 6 months with hopes my colon would heal and it would be reversed. Unfortunately due to previous issues my colon did not heal and I decided to have the ileo changed to a permanent colostomy. That was in Nov. of 2003 - actually the same date as my 25th anniversary! After a few months of learning to adjust I can assure you that a colostomy does not slow you down. I have always been very active and continue to travel - golfing, scuba diving, hiking, biking, running, swimming, cross country skiing and weight training as easily as before. I also wear exactly the same style of clothing as before. ( removed ) The more you know about treatments and surgery the easier it will be for you and you will feel more confident and positive about your outcome. If a colostomy is recommended, please see an ET (stoma/wound) nurse for information before your surgery. I'm sure you'll do just fine!

Last edited by moderator2; 12-21-2008 at 07:47 PM. Reason: do not direct off board searches

 
Old 12-08-2008, 06:49 PM   #10
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Re: New to board - just diagnosed with rectal cancer

West Coast Girl - I see that you are from Vancouver and we live in Brinnon (south of you on Hood Canal) in Washington. How is it possible to wear the same clothes? Won't it show through? How will I go swimming? We cruise a lot and sometimes lay by the pool. Won't I have to be in one of those granny type suits? I've seen some stuff on the web that scared the heck out of me and now I'm confused. One video had someone giving a demo on a big plastic thing that looked like a garbage bag girdle with a vacuum pump on it. I just about lost it on that one. What's new huh. Confusion and tears seem to be a part of every day now that I was diagnosed......

My husband had his colonoscopy today and all was fine. While I was there, I spoke with his doctor. She gave me the name of a couple of colo/rectal surgeons who she says might either give me some hope or at worst confirm what the other doctor said. I know I should feel lucky that it hasn't spread but that may take a while.

I haven't yet gotten over the part about the colostomy to even begin to start to worry about the cancer. I hate this.

I guess I'll have to look at the rules for posting again to make sure I don't violate the board with my comments or questions.

Thank you all for your kind words. You have no idea how comforting it is to hear from someone who's been there.

Karen

 
Old 12-08-2008, 07:49 PM   #11
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Re: New to board - just diagnosed with rectal cancer

Karen - My stoma sits 3" below and 3" to the left of my belly button. I have an incision that starts slightly below my belly button but is not very obvious. I wear a regular two-piece suit that is a "hipster" style. You can get ostomy appliances that are so thin, soft and flexible that when empty no one would ever know anything is there. It is important, as I already mentioned, that if you do require a colostomy to have the stoma placed low enough if possible to still wear "non-granny" jeans, etc. I do know of some people in my support group that seem to go out-of-the way to wear the most baggy and unattractive clothes - as if it is now required. Totally wrong!! But then at my age I probably shouldn't be wearing two-piece swimsuits but I do anyway. I'm but sure what video you saw but it is definitely not like that anymore! There's a very famous (well here in Canada anyway!) climber by the name of Rob Hill who started a group called "No Guts Know Glory" who is climbing the world's tallest mountains. He has an ileostomy - a real inspiration! ( removed )

Last edited by moderator2; 12-21-2008 at 07:46 PM. Reason: disallowed use

 
Old 12-09-2008, 09:00 AM   #12
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threeedogmedia HB User
Re: New to board - just diagnosed with rectal cancer

West Coast Girl, I just spoke with my oncologist regarding the names of the additional colo/rectal surgeons I obtained yesterday. I wanted to see if he knew of them.... Although he says it's fine to get a second opinion, there is no hope that they can spare me from a colostomy since the sphincter muscle is basically involved and even if the tumor shrinks, there isn't a chance in #$% that they can save the muscle. For a few hours at least, I had some hope. Now I'm back to the depression I was in yesterday morning. I'll try and find the support group you belong to since I know I need to move forward - it's just so darn hard when you don't have anyone to talk to. My husband, bless his soul, just can't help me with this one.
Karen

 
Old 12-09-2008, 03:06 PM   #13
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Re: New to board - just diagnosed with rectal cancer

Karen - Please check out local ostomy support groups. ( removed )Time and asking lots of questions will get you through this. The learning curve is very steep. After all this surgery is a life-saver. You need to get your husband more involved - the sooner the better. They can be a big help in this area!

Last edited by moderator2; 12-21-2008 at 07:48 PM. Reason: do not post personally identifying information

 
Old 12-09-2008, 06:57 PM   #14
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threeedogmedia HB User
Re: New to board - just diagnosed with rectal cancer

I found one support group that seems to have some active members. It's small but that's ok if I get some advise from people who have been there. I'll keep looking at others too. Ya know, I have bad hours then once in a while, I get a good one and that's what keeps me going. I cried and had a belly laugh at one posting by an individual who was trying to show a family member his stoma. God Bless this person because he managed to help me laugh.

I try and involve my husband in my fears and concerns and he listens and tries to help but I'm still fearful that he's going to just pass out when he gets a look at what happens. I should give him more credit but it's my old fears of not being good enough coming thru. Sometimes those old childhood feelings just haunt me.

Thanks for taking the time to give encouragement! You have no idea how valuable that is right now.
Karen

 
Old 12-27-2008, 04:56 PM   #15
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Re: New to board - just diagnosed with rectal cancer

So this is the last place I ever expected to be, posting to a rectal cancer chat board. But I am..... I just found out at the end of November that I have rectal cancer. I am a 44 year old female and there is no history of this in my family. My doctors have really moved on this, I began oral chemo and daily radiation on Dec 1, and I have 2 weeks left of this course of treatment. I then have to have surgery to remove the tumor. They are classifying this as Stage 3, as my surrounding lymph nodes are enlarged, however they did not light up on the PET scan. So, at this point I will not know how involved until the surgery. After surgery, and I hope they can save the sphincter I will then start Folfox IV therapy. Does anyone know about this? The oral chemo has been a breeze for me, I have not experinced any major side effects and I an scared to start IV Chemo. I am trying to be postive, but I don't know of anyone else with rectal cancer, and I could sure use a friend right now.

 
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