As in my recent post, my mom got the colonoscopy and they suspected cancer. Well, the results came back and indeed it is. I will be going with her to the surgeon next Tues to ask a whirlwind of questions. Looks like she will have to get her entire rectum removed and have a colostomy. Since its near her anus, it seems that they will have to take out the entire rectum. Doc said she may have to get radiation before surgery??? If there is only a tumor in her rectum and that is what they are removing, why would she get radiation first?? Wouldn't they remove it, see if its spread, then do radiation?? I am confused.

Thanks!

I'm so sorry to hear your bad news. Sometimes they do radiation before surgery to try to shrink the tumor before removal.

Yes, that is quite common practice. It is sometimes only when the tumour is very large and there is a possiblitly of blockage, that they operate before administering chemo/radiation. I have read posts when after radiation and chemotherapy, there is very little cancer left in the system. Hopefully, someone who has had that experience will post and encourage you.

Meanwhile, I can imagine what you are going through but keep up your spirits.

Hi to all of you,

I am very new to this so please bear with me! I have no idea how to do this so I hope I don't do anything wrong. My mother is 68 y/o and just found out that she has rectal cancer. She had no symptoms until 9/15 when she had a rectal bleed. She went for a colonoscopy and they were unable to advance the scope past the rectum - did a barium study which we have no results of yet. A digital exam revealed an "ulcer" approx. 3 cm just inside the rectum. It has perforated the wall and is against the tailbone but we don't know if it is inside the bone. She is scheduled for a CT Scan a week from Tuesday and is to call Monday to schedule a Endoscopic Ultrasound. Blood was drawn for cancer markers. She has had no pain, change in bowel habits, etc. Some pain in her tail bone > a year ago but no pain since that time. I am SO frightened and overwhelmed and my mother is REALLY frightened. All we can do is cry and reading the experiences of each of you has been such a big help to me. I would really like to hear from some of you who have been through the Endoscopic US - mom is really frightened of pain and doesn't know what to expect. The plan is to hit her hard with Radiation and Chemo to shrink it away from the tailbone and then go in and remove everything - scrape the tailbone - give her a colostomy. We haven't been told staging b/c she hasn't had the CT scan, etc. to determine met. Thank you all for being here!

I am so sorry to hear your news about your mother. I cannot give any information on Endoscopic Ultrasound but these days there seem to be medication to make every procedure as pain free as possible. I have found that the most scary time is before tests and treatment. When you have all the facts, it seems to give you more of a sense of empowerment....at least you know what you are dealing with. So the quicker your mother has the CT and other tests, the better it will be, not only physically, but mentally too.

Hang in there....there are many people on these boards who will give encouragement from their own experience of treatment and recovery, when all looked hopeless at the time of diagnosis.

Thank you so much Alison! We got mom on something for anxiety and she says she feels a little more relaxed. I agree that the "not knowing" is the hardest thing to deal with. I am a Pediatric nurse but have never worked Oncology so probably know just enough to scare me to death! Thank you all for being here! I am looking forward to getting to know you and hope that at some point I, too, can be of some comfort to someone here.

I am very sorry to hear of your Mothers.
My Father was diagnosed with rectal cancer in 2002. It was roughly a 3 cm tumor about an inch away from the anus. Consequently, he had surgery to remove the entire rectum with a permanent colostomy.
It is hard as a caregiver to see someone you love go through so much. I only walked along side of him, I can't begin to imagine what it would have been like to be in his shoes, in any of these brave peoples shoes for that matter.
We struggled as a family to accept and help him accept the idea of this change. He had radiation before surgery to give the surgeons better margins (shrink the tumor), along with Chemotherapy. Removal of the whole rectum when the tumor is that close to the anus is the the best chance for non-reoccurance, as far as his surgeon was concerned, there was "no other way" After his surgery, he had 6 more weeks of less aggressive Chemotherapy.
I strongly urge you, when you are ready, to get a book on ostomies. It helped us alot, knowledge is power, acceptance is essencial. The book I got is at my parents place but at your request I can certainly get the name and author.
My Dad has adjusted well with his colostomy, it "misbehaves" at times, as he calls it but he has learnt to just go with it. The surgery he once feared has turned into something he has grown to respect but it took time, alot of time. He is over 2 years now, cancer free.
Keep in mind to that a stoma nurse will be of great assistance, in first supporting and later teaching your parent about their colostomy.
From my experience, what you are going through perfectly normal and necessary and tears are certainly part of it. It is so hard.....my prayers are with you and your families.

Thanks for your reply. At this point, we still don't know what the protocol is going to be. They are going to "see" if they can cut out the tumor without the permanent colosomy, but it sounds kind of doubtful, as its close to her anus. But, my mom is holding onto hope that she may not have to get it, which I not sure is good for her. I just don't know how she will handle the colostomy if she gets it, so that's why I am worried. She thinks that there may be some miracle, that she may not have to get surgery at all. She is religious, so believes it may just "go away". I think she is still in denial about the whole thing.....Hopefully we will get some good news though...and soon!

Hoping4Best and klp54:

Just wondering how your Moms are doing. You are all in my prayers. I am going to see doc on Tuesday for rectal bleeding. Don't know yet what it could be but I'm scared out of my wits.

I'd like to know if either of your Moms ever had a colonoscopy prior to their diagnosis? If so, did they find any polyps or anything?

Keep the faith,
Annie

My mom never had a colonoscopy prior to her diagnosis....there was no need to, (so she thought) as NO cancer of any kind runs in the family. She did have blood in her stool for 1 year though. The doc told her it was hemmoroids, but after a year, she starting thinking that it wasn't. She went to see the gastrinologist on a Monday, got a rectal exam and he found "something" & suspected cancer. Then, she got rushed in for a colonoscopy that Friday and he was almost positive it was cancer, but still took a biopsy to confirm. I guess all rectal cancers start out as polyps, but can become cancerous. Usually when they start to bleed, it is a good indication that cancer may be present. Thanks for the warm thoughts....mine are with you as well... :angel:

As in my recent post, my mom got the colonoscopy and they suspected cancer. Well, the results came back and indeed it is. I will be going with her to the surgeon next Tues to ask a whirlwind of questions. Looks like she will have to get her entire rectum removed and have a colostomy. Since its near her anus, it seems that they will have to take out the entire rectum. Doc said she may have to get radiation before surgery??? If there is only a tumor in her rectum and that is what they are removing, why would she get radiation first?? Wouldn't they remove it, see if its spread, then do radiation?? I am confused.

Thanks!

Sorry to hear your news....sometimes they decide to do some radiation first to shrink the tumour and make it easier to operate. If the tumour is large and is in danger of blocking the rectum, then they would operate right away. Good idea to have your questions ready for the surgeon. There are also lots of people on this board who can advise and support you and your mother. All the best to you both!

Hoping4Best and klp54:

Just wondering how your Moms are doing. You are all in my prayers. I am going to see doc on Tuesday for rectal bleeding. Don't know yet what it could be but I'm scared out of my wits.

I'd like to know if either of your Moms ever had a colonoscopy prior to their diagnosis? If so, did they find any polyps or anything?

Keep the faith,
Annie

anniefannie and Hoping4Best:

I am so sorry that I haven't written for so long. My mother had never had a colonoscopy before the rectal bleed. Her rectal tumor was approx. 1.5" and had gone completely through the rectal wall and involves some lymph nodes. She has been dx'd a Stage 3. She started chemo (5Fu) on 10/12/04 and radiation on 10/13/04. Her chemo is a continuous infusion through a central line - she carries around a little IV pump. She has 7 more radiation tx's and they will stop the chemo at that time also. She is to rest for 4 weeks and then have the surgery to remove the rectum, muscle, lymph nodes, etc. She elected to go with the permanent colostomy b/c her physicians feel it will be a "cure" for her. She has no liver, pancreas, or lung involvement. CT scan was clear. She has done remarkably well with the chemo and radiation. No nausea or hair loss. She is a little weak and more tired than usual but has found that if she lays down for >15-20 min. she feels even worse. She has had diarrhea a couple of times but it has been related to what she has eaten so she is VERY careful with her diet. She is very compliant with physician recommendations also. This is all very emotional for her - she does much better with people around her. I live 15 hrs. away so is hard for me also. I am really dreading her surgery - will she be in a lot of pain? How long before she is feeling better? Will her poor bottom hurt really bad after surgery? I hope to be able to spend some time with her upon discharge so want to be there for the colostomy teaching.

Hoping4Best, how is your mother? I have thought of you often! Anniefannie - what did you find out from your colonoscopy? I go for mine on 11/17/04!! No symptoms - just evaluation b/c of mom's cancer.

Thinking of you all and anxious to hear. I will try to check back more frequently.

klp54

KLP - Great to see you to check in! Well, things are moving fast with my mom. She is undergoing radiation as we speak (for 5 days) then her surgery is scheduled for Nov 15th. She is doing ok with the radiation, but has been feeling a bit sick and she says that everything she drinks tastes like metal. Her body is sore too, especially her bottom. She is going to have to get the permanent colostomy...she is very scared and upset about it to say the least. They will be removing her rectum, anus and a few suspecious limph nodes. As with your mom, her CT scan, liver and lungs look clear, thank goodness. Not sure if she will have chemo yet, as they are doing a pathology after the surgery to see. They said that post-surgery, she'll be in the hospital for 7-10 days, then will have to be home for 8 weeks or so. I've heard that its really painful, and you can't sit comfortably for 3 months. Thankfully, my aunt (mom's sis) is coming down for 2 weeks to help with recovery. I don't imagine that she'll be able to do much more that get up and go to the washroom. The whole bag idea is freaking her out, as she's having a hard time coming to terms with it. It will just take time I guess. I think cause her anus is being removed too, its longer of a recovery.....We're in for the long haul!

Glad to hear your mom is tolerating chemo ok...it can be tough.

Wishing you the best!

Hoping4Best - Good to hear from you! Isn't it strange how all the treatments seem a bit different for each person? My mom had to have 23 radiation treatments and just finished her 17th one today. She hasn't lost her appetite and hasn't c/o the metallic taste yet. She says her insides feel just a little bit sore but not enough to take anything for pain. They gave her a bottle of Aloe Vera gel when she started the treatments and told her to "cover her butt" with it every time she goes to the bathroom - she has been doing that and her butt isn't even pink yet. It has really worked great for her. We don't know about the post chemo yet. Mom was the one that wanted the bag - mainly b/c she is SO scared of cancer. She just wants everything "down there" taken out. She is nervous about the surgery too - I told her to just take the pain medication every 4 hrs. whether she thinks she needs it or not!! We will all be glad when this is over - it has certainly changed her life! Make sure she meets with an ET Nurse BEFORE the surgery! They are specialists in colostomies and help in marking the colostomy bag placement, etc. Some surgeons just "place" them anywhere and can make it difficult to take take care of them. i.e. at the waist level - over an abd. crease, etc.) The enterostomal nurse will be a big help and comfort for her. She may even qualify for a home health nurse to come once a day when she gets home to help her take care of it. Please give her my best - I do think of you all often. What a wonderful support to have! Wishing you all the best also! KLP :)

KLP - She has seen a stoma nurse, but it wasn't much help. It still needs to be placed practically on her waistline, which she is not happy about. She is a trendy dresser, so all her pants sit lower. She's just going to get some longer sweaters to cover it.

I find it hard to believe your mom is getting so many radiation treatments. Maybe because my mom's cancer is early stages, they feel they don't need to do as much. Your mom sounds like a very stong woman, my mom is so tiny, she would have a very hard time with more radiation. I sure hope she doesn't get chemo. She's lived such a natural health life, that all the chemicals are really tough on her body. Its even a big deal for her to take Tylenol! Oh, how that is going to change! I'll keep you informed post-surgery. Wishing you and your mom the best...I've thought about you often too! Take Care...