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Cancer: Rectal & Anal Message Board
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Old 07-05-2005, 02:25 AM   #1
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Thumbs up Rectal Cancer ..... pse help

Hi Friends

Was diagnosed with rectal cancer just a week ago. Hv undergone many tests and will find out on Friday at what stage the cancer is and when operation will take place. Obviously scared and emotions vary between shock, fear, sadness etc. I am 53 and have just recently moved to Cape Town....... an absolutely beautiful place to be....... if only I had more energy! Am SO tired most of the time. Every week I drag my body to work and vow that I WILL go for a long walk along the beach and just get rid of the cobwebs. But, alas, by the time the weekend arrives I'm just too exhausted to go anywhere and end up spending the whole weekend indoors, reading and just pondering on life.

How disfiguring is the operation? Does anyone know? My doctor drew me a rather graphic picture of how the operation would be done. He indicated that the anus, as well as the area around it, will be cut away and that the operation would be done by cutting through the stomach as well as the rectum and this area would then be sewn up!!! Must say I was terribly shocked. I know this may sound vain, but will I be able to still wear jeans & slacks with my "deformed bum'? Will it be noticeable?

All you folks out there, may God be with you in your attempts to find solutions/cures/answers for the myriad problems we all face. May life treat you and your loved ones kindly. Have faith and courage.

Kindest regards
Anne

 
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Old 07-05-2005, 03:15 AM   #2
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Re: Rectal Cancer ..... pse help

Hello Anne

So sorry to hear of your diagnosis but glad you came to these boards as there are so many people here who can chip in with advice and words of support.

I am unsure about how the op would affect the aesthetics of your behind but I know that you will almost certainly have a large vertical scar from above your navel, aroud the navel and down to your pubic area. I think most surgeons use staples. It does leave a scar but there are creams (vitamin K i think) that can help reduce its appearance. Scars do fade in time.

The surgery you are facing is a big one indeed. You need to make sure that you have a surgeon who is a specialist in this type of surgery so that they can preserve as much of you as possible.

Here in the UK, conventional surgery for rectal cancer used to involve a permanent colostomy bag in aprrox. 50 % of the patients. This was necessary because the anus itself was removed by the surgeon along with the rectal cancer. It is now increasingly accepted that precise specialist surgery (Total Mesorectal Excision or "TME") can achieve cure of the cancer without this sacrifice. The permanent colostomy rate by many UK specialists is less than 10%. Anyone faced with the prospect of a permanent colostomy might wish to know from their surgeon the answer to certain questions :

How many centimeters is the lower edge of the cancer from the anal verge ? If the answer is less than 3 cm then a permanent colostomy is almost certainly necessary. If more than 5 cm, then sphincter conservation and permanent colostomy is almost certainly possible.

Thus at least one half of those contemplating life with a permanent colostomy might be able to avoid this with speicalised surgery. Quality of life, as well as long -term survival, is therefore greatly enhanced. At all events a second opinion is sensible for anyone in this position.

Hope the above helps
ktee

 
Old 07-05-2005, 03:46 AM   #3
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Re: Rectal Cancer ..... pse help

Dear ktee

Tks SO much for taking the time to respond. Unfortunately I am not on a medical aid so my operation / treatment will take place in our local Government Hospital. Although the staff I have met thus far are lovely, compassionate folks, the hospital obviously only has funds to do lifesaving surgery / treatment and will not pay much attention to the aesthetic side. This I find frightening. All I know is that the tumour is about 2cm and in the "7 o'clock" position, whatever that means. I do understand it is quite close to the anus, so it would seem that I have to mentally / emotionally come to terms with the prospect of a permanent colostomy.

Tks again for your most informative reply, ktee. It is greatly appreciated.

Kind regards
Anne

 
Old 07-05-2005, 04:40 AM   #4
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Re: Rectal Cancer ..... pse help

Hi Folks

I just read the following:

"..... report that radiation therapy without surgery may be a reasonable option for some patients with rectal cancer. After an average of 54 months of follow-up, the tumour had not spread beyond the rectum in 63% of the patients."

It goes on to say " the survival rate after radiation therapy compares well with surgical results. " and if a patient with an operable tumour refuses to have surgery, it seems reasonable to propose a combined radiotherapy program, especially if the patient has stage II cancer."

I don't want to raise false hope amongst fellow sufferers, but I will certainly discuss this article with the doctors on Friday and let you know. At this stage I am willing to explore all avenues. It is not the quantity but the quality of life that matters to me.

Regards.
Anne

 
Old 07-05-2005, 06:37 AM   #5
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Re: Rectal Cancer ..... pse help

Osher

Hi there, I am replying here to your post in the End of summer thread.
Thank you for your thoughtful words, when you are tussling with your own and recent unpleasant news. It is indeed hard to grasp the full implications within the first few weeks. Like you I am recently diagnosed, and still remember the constellation of feathery thoughts that filled my mind. The snow storm of those thoughts has now settled, as will yours, and getting focused on recovery has become routine.

As to finding a soul mate, my doctors told me that it (colostomy) will not affect my sex life. At 71 and 35 years separated that was good news - can I now expect a sex life ? When you find your soul mate, it will be you, not your plumbing, nor the 'survivor' medal you will wear on your abdomen.

The messages from the folks in here have been a blessing in helping me to reduce my fears,to understand and to accept and realize there is a future - if we reach for it.

You have found the right place to vent, learn, and share. Your fear is natural and we all have known it. It's ok here to say so.

Wishing you comfort at this distressing time.

 
Old 07-05-2005, 06:53 AM   #6
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Re: Rectal Cancer ..... pse help

Mudlark, what an incredibly wise lady you seem to be. This forum makes me feel part of a team of survivors. I have isolated myself from people for the past 6 months, moved hundreds of miles away from terrifying family traumas and am virtually alone in this battle. I have started a new life and now this devastating news! But with the encouragement of people like yourself I know I will win this battle and.... live to tell the tale!

Tks for your comforting words and good luck to you.

God bless.

 
Old 07-05-2005, 11:22 AM   #7
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Re: Rectal Cancer ..... pse help

Osher, I know how terribly exhausting all this is. When I was diagnosed, I went into shock and have never felt such exhaustion, from all the tests and treatments and to just plain sheer emotional stress. Try to get as much rest as possible and drink alot of water and other fluids. This is a wonderful board for support and info. as you go through this process. I was diagnosed with colorectal cancer at barely 30. Fortunately, I was staged early, but I did have internal and external radiation. Generally, if the tumor has penetrated the rectal or anal wall at all, a resection plus chemo.&/or radiation is the best course of treatment. Keep posting, as you find out more info., because there are many people posting at various stages, with different treatments. With much empathy...

 
Old 07-05-2005, 12:58 PM   #8
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Re: Rectal Cancer ..... pse help

Hi Anne,

I agree with all the advice you are getting here, its helping me a great deal.
I'll add a different take.

I have rectal cancer, stage IV with mets to the liver and abdomen. I'm 45, married with 2 grown kids. The doctors have me on chemo only and have me down as incurable. The first few weeks are like a dream, trying to get a grasp and accept what has been dealt. I had a hard time also because so many people were calling that don't usually call, as if I had died. I got over all that, cried all the time, watched my wife, mother and lots of close friends cry.

This all started for me in May, when I was diagnosed. I'm getting my 4th chemo tomorrow. I was tired during most of March-May, in pain to the point that I couldn't sit, constantly running out of breath and bleeding on a regular basis.

Since chemo started, I have almost none of these syptoms. I was an avid runner and I'm back to running, although at a slower pace, 45 plus minutes 4-5 times a week. Sometimes even with the pump attached to me during the chemo days I'm not taking pain meds nearly as much and there is almost no blood when I go. My blood work looks really good, white/red blood cell count is normal, my CEA readings were 43 before my first chemo, then it went down to 19 before the 3rd. My oncologist doesn't get enthusiastic about any of this, but the other dotors I talked to say its all great.

What I have learned so far is; I'm not giving in to anything. People get past this all the time. I choose to continue laughing, smiling, loving and everything else I love about life regardless of what doctors tell me I have. I have this profound appreciation for everything I love and do in life. I have let go of anger and hate. I have forgiven myself. I live in the moment, which at times is hard when you have a disease, and I worry about my future, but being in the moment is when you are whole, healthy and complete. I have met survivors, some I refer to as angels, and they had worse cases than mine and are living and thriving. So I can do it too. I have made new friends, wonderful people have surfaced and showed me so much love and kindness.

Regardless of what anyone tells me, I only have the power of my mind and faith in myself to deal with everything. Just my 2 cents........

Last edited by bossan; 07-05-2005 at 10:19 PM.

 
Old 07-05-2005, 02:24 PM   #9
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Re: Rectal Cancer ..... pse help

Just your "2 cents"? It is SO inspiring and will help others recently diagnosed.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 07-05-2005, 02:39 PM   #10
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Re: Rectal Cancer ..... pse help

my brother had this operation in october of 04, he was very ill and weak like yourself no energy, they removed the entire large colon and rectum, he has a permanent colostomy he too felt disfigured at first but with the support oif family and friends he got thru this there was a lot of after surgery pain that has to be delt with until the staples are removed be sure that you request from the dr a pillow to sit on you will need it. trust me. be sure that you get your pain meds another important thing to have to ease the pain. you will have to learn a new way of eating because there are certian foods that will come out very thick in the bag you will want to avoid chocolate its not pretty. be sure to ask to see a dietiion or nutritionist to assist with your food choice because this is going to chnage your life forever you will make it thru this i will be saying prayers for you. now my brother never needed to have chemo or radation afterward as his was all contained in the surgery good luck also my brother is 57. my brothers was a 4 cm tumor and yes you should be able to waar jean now depending on the positionm of the bag you may have to wear the jean and slacks and short with the elastic waist band be sure to take like jogging pants with you to the hospital you wond be able to wear regular jean out of the hopsital you will want loose clothing for comfort.
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Last edited by delrae4753; 07-05-2005 at 02:45 PM.

 
Old 07-05-2005, 05:43 PM   #11
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Re: Rectal Cancer ..... pse help

I was just 51 when I was diagonosed. My cancer was also just inside my anus - visible from the outside. My surgeon originally told me I would have a permanent colostomy but then during surgery decided to try and "spare" me from the pouch. I awoke from surgery with a temporary ileostomy that was to allow the lower colon resection time to heal. Unfortunately the healing didn't go all that well and 6 months later I opted for the original permanent colostomy. I was able to talk my surgeon out of removing the anus so he stapled it shut from the inside. I was very fortunate not to have any pain and things have healed up very well - except for an incisional hernia which has appeared at the site of the temporary ileostomy that was closed 18 months ago! But that is another story. It will be up to what your surgeon feels is the best route to go to assure you the best possible outcome. Please don't be afraid of the colostomy as it hasn't slowed me down a bit. I currently have the "centrefold" article in Ostomy Canada on scuba diving with an ostomy - complete with pictures. I wear all the same clothes and it is impossible to tell I have an ostomy - except if I drink too much beer and my pouch balloons up like a little football! If possible, get a second opinion and do as much research on your own. This was a great place to start!

 
Old 07-07-2005, 06:53 AM   #12
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Re: Rectal Cancer ..... pse help

Dear Friends

Thank you all SO very much for your wonderful support and encouragement. Have been extremely busy at work (maybe not a bad thing as I have no time to dwell on my "condition"). Would have loved to have the time to answer each friend individually but I'm truly without a moment's rest. Your advice sure is food for the soul. The whole thing is not so terrifying anymore. Just knowing there are others who can share their experiences makes this heavy load so much lighter.

Getting results tomorrow i.e. stage of cancer etc and am rather scared. Pse pray for me - I really need it right now because there are other urgent issues (apart from my health) that also need attention .... and I simply do not have the energy for these issues right now. Maybe I am in denial?

Will keep you posted.

God bless you all, keep faith and thanks for being a friend.

Anne

 
Old 07-07-2005, 08:59 AM   #13
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Re: Rectal Cancer ..... pse help

prayers have been said for you my frined and best of luck keep us posted
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Old 07-07-2005, 09:15 AM   #14
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Re: Rectal Cancer ..... pse help

Anne, it is obvious you have been and are going through a very difficult time in your life. It seems that just as you started a new phase, this diagnosis presents itself to challenge your endurance even more. I am so glad the people on this board are here for you and can at least offer moral support.

I am sure hard work will help to keep your mind off your "condition" and I would not say you are in denial of anything. I remember when my husband was receiving radiotherapy and we went back to the UK for the treatment, friends of mine (psychotherapists!) said I was in denial. I guess this was because I did not fall apart, cry uncontrollably or suddenly lose it in public places! It was not that I did not feel like doing all of the above at times, but I had to hold it all together to deal with the practical issues at hand. There was no denial....I was quite aware of the implications, but nobody, including myself, would have benefitted by my not being able to cope.

We all find our own way of coping with situations. I hope all aspects of your life start to turn around soon but for the moment, your main focus has to be on receiving what ever treatment you need to get you on the road to recovery.

Do keep us posted on the results....we will be praying for you.

Love,
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Old 07-07-2005, 11:20 AM   #15
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Re: Rectal Cancer ..... pse help

Aliison touched on a thought I forgot to mention. When I describe to people what I'm gong through I simply say, my life as I had it ended and a new one has begun. I decide how to live it.

I still cry, I worry about test results, it never leaves my mind but its only been a few months. Stay focused on what's good. The doctors will be there to tell you what's wrong medically but there is so much more to this. I went in for a rectal exam, they found a tumor and few days later the CT scan found more spots. The doctor told me on the cell phone while I was driving to work. Anyway...the first few weeks were total schock and I was numb and crying all the time. Trust me, it settles. I suddenly find myself wanting to watch Seinfeld, Everybody Loves Raymond and Fraiser episodes since laughing does wonders for the soul. Smile, tell someone you love them at least once every hour. Dance, sing, bash Bush, oh wait, you're not in the US, that's okay, I'll bash him for you

 
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