CancerCompass message board discussion started by Snowmom60 on 7/5/2007 http://www.cancercompass.com/message-board/message/all,14058,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi I was just told yesterday that I have rectal cancer.  I have to have an endocopic ultrasound next Wed. and then meet with the surgeons on Friday.  I'd appreciate any information on what to expect.  I'm actually a Registered nurse and with this I wish I wasn't because (not an oncology nurse) I know just enough to scare myself.Thanks for any help!  Terry Snowmom60 Thu, 05 Jul 2007 00:00:00 GMT  On 7/5/2007 Snowmom60 wrote:Hi I was just told yesterday that I have rectal cancer.  I have to have an endocopic ultrasound next Wed. and then meet with the surgeons on Friday.  I'd appreciate any information on what to expect.  I'm actually a Registered nurse and with this I wish I wasn't because (not an oncology nurse) I know just enough to scare myself.Thanks for any help!  TerryI am a 69 yr old female diagnosed with rectal cancer in January.  After CT scans, a PET scan, and numerous tests I started chemo and radiation treatments.  A chemo port was installed under the surface of my skin and I wore a pack that administered the chemo continuously 5 days a week, 24 hrs a day.  At the same time I had 28 radiation treatments all in the hope that the combination would shrink the tumor.  After these treatments I was given another CT scan (I was quite nauseous and my bowel movements had changed) and it was discovered an inflammation in my small intestine thought to be from the radiation.  On May 21 I had rectal surgery as well as the section of the colon removed (it turned out to be cancerous so good thing it's gone).  I spent 10 days in the hospital and needed 4 units of blood.  A device was implanted in my spinal cord that administered the morphine and that was wonderful.  At no time did I feel the pain of surgery.  The gas pains, however, were uncomfortable but since pain management is uppermost in the hospital guidelines, I was kept comfortable.  It has been 7 weeks since surgery and I have had numerous problems with diarrhea but that is subsiding.  I will see my oncologist next week and he will prescribe further chemo for prevention of a reoccurence as I understand.  Hope this hasn't been too lengthly and it was somewhat informative.  I was spared the stoma (bag) which I was pleased with and look forward to an active life after rectal and colon cancer.  I wish you all the luck in the world. Jnette Thu, 05 Jul 2007 00:00:00 GMT Thank you so much that is very helpful.  I'm the type that wants to know what to expect.  Can I ask what stage and what kind of cancer you had.  I was just reading about adenocarcinoma mucinous and since I have had a lot of mucous I'm a little worried it might be that kind.  I know I need to probably quit reading so much.  How long between your colonoscopy to find out you had cancer and seeing your surgeon?  How did you pick your oncologist?  I'm sorry to ask so  many questions but I live in  a very small town and I don't know to many people up here that have had experience with cancer (I use to live in the city). Thanks again, Terry Snowmom60 Fri, 06 Jul 2007 00:00:00 GMT  On 7/6/2007 Snowmom60 wrote:Thank you so much that is very helpful.  I'm the type that wants to know what to expect.  Can I ask what stage and what kind of cancer you had.  I was just reading about adenocarcinoma mucinous and since I have had a lot of mucous I'm a little worried it might be that kind.  I know I need to probably quit reading so much.  How long between your colonoscopy to find out you had cancer and seeing your surgeon?  How did you pick your oncologist?  I'm sorry to ask so  many questions but I live in  a very small town and I don't know to many people up here that have had experience with cancer (I use to live in the city). Thanks again, TerryI was never told what stage or type (and I was a bit afraid to ask).  I see my oncologist in a couple of days and will ask at that time and relay the info to you.  I too had a lot of mucous right after diagnosis and wore a pad constantly.  That worsened with the radiation but not unbearable.  I was diagnosed in the latter part of January and saw my surgeon within probably a week or two. Then the tests (scans) started and then the 28 chemo/radiation sessions after that.  After these treatments a waiting period of at least 6 weeks before surgery is normal so my surgery wasn't until May 21st!  Seemed like an eternity.  As far as picking my oncologist, we have 1 at the hospital where I live and he is excellent.  Couldn't hope for anyone better.  And there are 3 surgeons but the one I chose specialized in colon/rectal area cancers and I am also pleased with him.  Be patient because there are so many tests you have to go through to get the proper staging, etc., and when the surgery takes place the surgeon doesn't want any surprises.  The one area in my colon that looked inflammed (CT scan) due to radiation (my doctor thought) was found to be cancerous and so that was removed at the same time as my rectal tumor was removed.  Glad this was caught with the scans so I didn't have to go back for a second surgery.Hope this helps you and we will keep in touch.  Jeanette  Jnette Fri, 06 Jul 2007 00:00:00 GMT Thank you for all of the information, it really does help to talk to someone who has been through it.  I don't want to talk to much around my family, my 16 year old is having a tough time with this and my husband gets angry about it.  I'll keep you posted.Terry:) Snowmom60 Fri, 06 Jul 2007 00:00:00 GMT Now, many people are receiving Xeloda, a medicine which is converted into 5FU inside tissue.  It has compared favorably with the IV method and may even be more targeted since the enzyme (polymrase) that converts it into the chemo is in higher concentrations in cancer tissue. (because of rapid division) Witchdoctor Mon, 09 Jul 2007 00:00:00 GMT Thank you for that information!   Can you tell me anything else?  How do I know if I'm picking the right doctor? Snowmom60 Tue, 10 Jul 2007 00:00:00 GMT treatment and prognosis for rectal cancer depend upon the stage, which depends on how far the tumor has penetrated.  In early stage disease surgery and/or RT is usually enough.  Once you get to stage II where the tumor has penetrated the bowel wall, then you can add chemo to the mix. Oncrx Tue, 10 Jul 2007 00:00:00 GMT Yeah, that's kind of what I figured, but it's going to be stage zero or one (I like to think positive)! Thanks for the info.!Terry Snowmom60 Tue, 10 Jul 2007 00:00:00 GMT It sounds like my husband is trailing right behind you - he was diagnosed only 5 weeks ago and is in day 14 after having had chemo - He also has the port.  We don't know what stage he is in, only that the cancer is encapsulated within the tumors ( called kissing tumors )   Can you tell me, does it get progressively worse with each chemo?  Do you become completely exhausted or do you regain a bit of energy just before it's time for another drip?  snooksiam Sat, 14 Jul 2007 00:00:00 GMT Actually, I'm trailing right behind your husband it's not quite two weeks since I've been diagnosed.  July 3rd to be exact.  Right before the holiday so I couldn't find anything out.  I haven't started chemo yet, is he really tired!  I met with the surgeon Friday and he said 4 wks of chemo, 6 wks of radiation and then he said either 4 wks of chemo again or 4 wks of rest before the surgery.  The surgery is going to be awful I think.  Mine is so low they can't reconnect and they have to remove everything and I mean everything! Snowmom60 Sun, 15 Jul 2007 00:00:00 GMT  On 7/15/2007 Snowmom60 wrote:Actually, I'm trailing right behind your husband it's not quite two weeks since I've been diagnosed.  July 3rd to be exact.  Right before the holiday so I couldn't find anything out.  I haven't started chemo yet, is he really tired!  I met with the surgeon Friday and he said 4 wks of chemo, 6 wks of radiation and then he said either 4 wks of chemo again or 4 wks of rest before the surgery.  The surgery is going to be awful I think.  Mine is so low they can't reconnect and they have to remove everything and I mean everything!I'm so sorry - I know it's going to be a long road for you guys, but I want you to know that I'm here if you need me for anything.  All I can tell you is that YES, he was knocked out for about a week after chemo - could get up only to go to the bathroom.  Little or no appetite - just wanted to sleep.  On day 10 he wanted Pizza, so I knew we were going to go up hill after that.  Each day got gradually better in every way except with his energy, but today we are going to lunch with the senior citizens.!!  LOL!!  Do you have rectal tumors or is it inside?  The surgery won't be fun, but you will have great pain meds to see you through.  Just take it one day at a time.  Hope you will have the energy to continue to post. I will keep you close in prayer. snooksiam Mon, 16 Jul 2007 00:00:00 GMT Thanks snooksiam,I had a 2cm polyp.  It's not quite in the muscle yet and the endoscopic ultrasound showed no sign of it being in the lymph nodes.  Until I have surgery and a MRI or PET scan whichever they do I won't feel comfortable with that (no lymph node).  The doctor didn't think the polyp was cancer either, sooo.  I'm a little bit younger so perhaps I won't be quite as tired.  My biggest problem is the amount of travel I have to do for all of this, it's an hour and fifteen minutes each way.  I can't remember what you said, did your husband get the bag and have to have the rectum, muscle and anus all removed?   It still seems unreal, I guess when I start chemo in the next week or so it will get real REAL fast!  Thanks for all of your information and for listening.  I don't want to say to much around the house because my 16 year old daughter is having a tougher time than I am with this.  I just thank God I have God!Take care,Terry Snowmom60 Tue, 17 Jul 2007 00:00:00 GMT Hello,Have you found out anything and have you had surgery yet.  I just read your post today.  I help with my dad, he was diagnosed Feb. 2006.  Do you have lymph nodes involved?  He had 13 involved, he had surgery, chemo and radiation.Cynthia  cynthia1 Fri, 27 Jul 2007 00:00:00 GMT Hi Cynthia,No, I'm having chemo and radiation and then surgery.  Because the cancer is so low in my rectum I'm going to have to have a colostomy permanently.  I just met with the radiologist today and have a CT scan and a medaport placed for chemo.  Tuesday I start chemo and later in the week radiation simultaneously.  I have been staged so far at stage II with no lymph node involvement using an endoscopic ultrasound which is about 75% accurate.  I wish it was 100% but only surgery is that.  I will have surgery in approximately 10 weeks then I will have the Folfox regime for six months every two weeks.How is your father doing?  Is he having radiation?  From what I heard today the radiation is going to be worse than the chemo.  What stage is your dad, III?  I can't wait to get the CT results so I know it's Not in any other organs.  That would be bad if it was.Thanks for writing and I'll keep your dad in my prayers.Terry Snowmom60 Sat, 28 Jul 2007 00:00:00 GMT Terry,Not sure what stage, I think 3.  He finished chemo and radiation in Dec. 06.  He had his ct scan of abdomin and pelvic area and a chest xray.  It was all clear.  But, when they did the ct scan of abdomin the ct picked up bottom of lungs and the doc saw some small spots, he was going to compare them to the other ct's he had in hospital last year to see if they scanned the bottom of lungs and see if they were there then.  If not the doc wants to do another type scan to check it out.  That was a little over 2 wks. ago and not heard anything from doc.  His next appt. is Aug. 2nd.  But, he is doing great, except he never knows when he is going to be going to bathroom all day, but that is from the surgery.  He had a resection in Feb. 06, luckily he did not have to have a colostomy.  His was pretty low also.  Yes, the radiation was worse than the chemo.  Be sure not to put any creams on and leave it before radiation, be sure all creams are washed off before radiation.  I know you probably know that, But a lady was telling us that she would put cream on before radiation and it cooked her alot sooner and alot worse.  I hope your treatments go well and the surgery.  Keep me informed.Cynthia  cynthia1 Sat, 28 Jul 2007 00:00:00 GMT Good morning, Terry,I'm sure that the anticipation isn't pleasant for you  and  it only adds stress, which you don't need right now.  I think it's easier to deal with "what is," rather than what I don't know.  When is your CAT scan scheduled for?I understand how you feel about all that traveling - do you have someone that can help you?  You're going to need it.  We've been able to find help through the American Cancer Society - they actually have volunteers, so that's truly a blessing.  Even though you are younger I'm afraid it is still going to knock your socks off, so I just hope you'll be able to get the help you need.My husband hasn't had any surgery - he has 2 tumors on the outside, and already the chemo has reduced their size immensely.  Radiation will begin in 2 weeks, and we aren't looking forward to that as it's a daily trip into San Antonio - about 40 minutes one way on the crazy freeway. Yikes!!  I haven't driven on the freeway for over 10 years.  I have severe Fibromyalgia, and up until 6 months ago, I wasn't able to drive myself anyway.  Now I'm just well enough to take care of my husband, and I give all the glory to God.I just lost my only son to suicide nearly 3 years ago - It still seems like yesterday, so that didn't help with my health issues.  But God has been so good to me since I started becoming closer to Him.  I just wonder how people survive with Him in their lives!! ( my daughter, for one )Hang in there, girlfriend - I'm so sorry for your daughter right now.  I'll keep you both in my prayers. BIG hugs,  snooksiam Sat, 28 Jul 2007 00:00:00 GMT  On 7/28/2007 snooksiam wrote:Good morning, Terry,I'm sure that the anticipation isn't pleasant for you  and  it only adds stress, which you don't need right now.  I think it's easier to deal with "what is," rather than what I don't know.  When is your CAT scan scheduled for?I understand how you feel about all that traveling - do you have someone that can help you?  You're going to need it.  We've been able to find help through the American Cancer Society - they actually have volunteers, so that's truly a blessing.  Even though you are younger I'm afraid it is still going to knock your socks off, so I just hope you'll be able to get the help you need.My husband hasn't had any surgery - he has 2 tumors on the outside, and already the chemo has reduced their size immensely.  Radiation will begin in 2 weeks, and we aren't looking forward to that as it's a daily trip into San Antonio - about 40 minutes one way on the crazy freeway. Yikes!!  I haven't driven on the freeway for over 10 years.  I have severe Fibromyalgia, and up until 6 months ago, I wasn't able to drive myself anyway.  Now I'm just well enough to take care of my husband, and I give all the glory to God.I just lost my only son to suicide nearly 3 years ago - It still seems like yesterday, so that didn't help with my health issues.  But God has been so good to me since I started becoming closer to Him.  I just wonder how people survive with Him in their lives!! ( my daughter, for one )Hang in there, girlfriend - I'm so sorry for your daughter right now.  I'll keep you both in my prayers. BIG hugs, Hi snooks,My CT was yesterday and I see the oncologist on Tuesday to start chemo so I should get the results then.  I feel it's going to be contained in the rectum.  I felt I had the rectal cancer so hopefully this feeling is right also.  I also met with the radiologist yesterday to get things going for my radiation which I think is going to be worse than the chemo from what they told me and I had a powerport put in.  Someone on here said to have the port put in while your asleep but I was awake through it and it wasn't bad.  I was given Fentnyl and versed so I probably should have been sleeping but just like the colonoscopy it doesn't work that way for me.You have some driving to do to.  I'm sure your nervous about driving on the freeway since it's been so long, just take your time and it will come back to you.I don't know how you get through losing a child!  I would rather go through this than lose a child.  You've had your share of problems but remember the glory you will have when you get to heaven!  Don't give up on your daughter in time she may come to see the Lord.  My 25 year old son isn't even close to being a christian either, luckily my two girls both are.  But, my mom felt the same way about me and I came to Christ eventually and I was REAL wild in my younger days so don't give up on her.One of my friends from Milwaukee came up on Thursday and made some meals and froze them and hasn't let me lift a finger all weekend (I wish she would turn to God also).  I have been receiving offers to help from people at church and friends in the community.  If there is one good thing from this, I have found out how truly, truly blessed I am and I did not realize it before this.  Hang in there and stay strong and God be with you and your family.Talk to you (or write to you) later!Terry   Snowmom60 Sat, 28 Jul 2007 00:00:00 GMT  On 7/28/2007 cynthia1 wrote:Terry,Not sure what stage, I think 3.  He finished chemo and radiation in Dec. 06.  He had his ct scan of abdomin and pelvic area and a chest xray.  It was all clear.  But, when they did the ct scan of abdomin the ct picked up bottom of lungs and the doc saw some small spots, he was going to compare them to the other ct's he had in hospital last year to see if they scanned the bottom of lungs and see if they were there then.  If not the doc wants to do another type scan to check it out.  That was a little over 2 wks. ago and not heard anything from doc.  His next appt. is Aug. 2nd.  But, he is doing great, except he never knows when he is going to be going to bathroom all day, but that is from the surgery.  He had a resection in Feb. 06, luckily he did not have to have a colostomy.  His was pretty low also.  Yes, the radiation was worse than the chemo.  Be sure not to put any creams on and leave it before radiation, be sure all creams are washed off before radiation.  I know you probably know that, But a lady was telling us that she would put cream on before radiation and it cooked her alot sooner and alot worse.  I hope your treatments go well and the surgery.  Keep me informed.Cynthia Hi Cynthia,I hope your dads CT results are good news.  I had my CT yesterday along with meeting the radiologist and getting my port put in for chemo.  As far as your dad going to the bathroom, that is one thing I like about getting the colostomy, you won't have urgency and accidents.  The guy that did my CT had rectal cancer and he said sometimes he wishes he would have had the colostomy.  I cried when they told me I would have to have one but as active as we are with snowmobiling and such I've come to the conclusion it's an alright thing.  I will definately irrigate and get mine trained once it's healed.I was told yesterday about the creams.  OUCH, boy that radiation sounds horrible.  I have to drive and hour and a half and sit on my you know what everyday.  It's going to be rough but I'll do what I have to.Good luck to you and your family.  Let me know how your dads results came out.Terry  Snowmom60 Sat, 28 Jul 2007 00:00:00 GMT Sorry this is so long!I have  a lot in common with you guys. I was diagnosed July 3rd with rectal cancer. The tumor is only about 8 cm. up into my rectum. They feel confident that they will be able to hook me back up after six months of healing from the surgery. I am only 42 so this was a huge unexpected illness. My tumor is 2 cm. and was ulcerated. That is my blessing... because it was ulcerated it bled early. my cancer is the poorly dif. mucus producing adenocarcinoma stage 2. They say it could be in my lymph nodes but they have not found anything to prove that. They did a ct scan and a PET scan which they tell me is the best one.. it shows a lot more and will sometimes show up the lymph nodes but not always.I just finished radiation and chemo on Wed. The chemo was 24/7 with the pump (5 FU) continueus feed. Please excuse my spelling..  that is one of my struggles these days and I think its maybe the chemo brain I have heard about. who knows...  ;) My radiation onc. did tell me if they were to do a biopsy of the tumor now it would likely not show any cancer cells. BUT they still have to do all the other steps because of high reoccuring rates with this type of cancer. My CEA levels went from 4.7 in the beginning to 3.7 last week. They say you cannot compare that to anyone elses because there are a LOT of things that factor into that... age, illnesses etc etc. They want to give me 6-8 weeks to get to feeling better before they do surgery. They plan to just remove a section of my rectum and colon. I will have a temp. colostemy so that the risk of infection is less and just to let things heal better. Six months later they will hook everything back up and hope it all works. My doc is confident that he can do this. He is a colorectal specialist surgeon. I think it's very important to have doc who is a specialist in this field. During those 6mths I will have adjuvent chemo... same way.. continus pump but only for 3 days a week every other week for 4 mths. It will be 5 FU plus another new one called eloxatin. Seems it has a few more side effects than the 5 FU, so I am not sure what to expect.I do believe the radiation is what was hardest on me. I first must tell you I already had lots of stomach problems for years before the cancer. I have GERD and also IBS with diarrhea. So I was like a loaded gun going into all this.  In the beginining tiredness was the worst sympton and still is. But diarrhea has been difficult but not all that hard to keep under control. I have been lucky on that, I only got dehydrated once and have to have liquids through an IV.Up until a week ago my worst problem was being so tired and also trying to figure out what I could eat. I have had no apetite... Food tastes totally different to me. I get frustrated because I have a cabinet and ref. full of stuff that I thought I could eat and then when I tried I couldn't due to smell or bad taste. Due to the diarrhea I am limited to what I can eat. I haven't had red meat for just over 4 weeks now. It would go right through me. I eat very little and have to force that in. I have lost 11 lbs and for me that's a lot. I am 5'9" and weighed 144 going into this.  About a week ago I started with severe stomach cramps from the top of my pubic bone to the bottom of my rib cage. I get bloated, my stomach feels tight and swollen... seems some of it is gas but not all of it. It is like my colon and stomach are contracting and spasming. I asked all my docs about this and they say that is not a normal problem with rad. and chemo. So they think the rad. and chemo have caused my IBS to get MUCH worse. They gave me bentyl and lortab. This past Sunday things got really bad and the only thing that would work is taking bentyl every 6   hours along with 2 lortabs... I tried one and it just did ok... with 2 my pain almost completely subsides. I don't have to watch the clock for when to take my meds because my stomach reminds me. I hate taking so much pain meds. all that still doesn't make me real sleepy. I wish I could sleep more.  I finished chemo and rad. on Wed. and was hoping to see a change by now but nothing has except the bad taste in my mouth is less. I feel worn out all the time. I know this is partially because I am not eating enough. But there are very few foods that don't make my cramping worse or either cause bad diarrhea. I have to make myself eat, and I feel full all the time. I only drink water because everything else tastes bad. I tried ensure but it made my bloating and cramping worse. I am one of the rare few who can't drink ensure. It is lactose free and I should be able to but can't. I think by the time they weigh me on Monday i will have lost a few more lbs. I read constantly looking for ideas to help me eat but haven't found anything to help. If anyone here has any suggestions please share them with me. I am really getting depressed and frustrated. I am tired of feeling bad but I realize I still have a long way to go. I must say that even with all of this as of today I still feel this has yet to be as bad as I was afraid it would be. It's been bad but not horrible. When my stomach cramping gets out of control it's pretty horrible then until I get it back under control with meds. A warm bath and a warm water bottle on my tummy helps as well.I am glad to have found this DB, no one else understands what I am going through, even the docs and nurses. I will beat this and one day be able to say it wasn't so bad. But for now I will just keep trying to find something I can eat and keep looking to God for strength. In the beginning my faith was strong. Unfortunately, all this has worn me down and it is at times difficult for me to focus on God and spend time with Him. I know He will get me through this... I just gotta give it all to Him. I wish the best to each of you. We are all connected in a very unfortunate way but we can lean on each other through this all. I will try to post as I progress through this. I hope to hear more of your stories as well. Thanks for letting me ramble.Anita Life is worth the fight Fri, 24 Aug 2007 00:00:00 GMT