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Old 07-13-2004, 02:18 PM   #1
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Question Rectal CA surgery pending- support/advice?

I've been reading the posts from veteran CA patients and caregivers. I'm relatively new to the board in that I just came across it. I prob could have utiilzed more earlier. Anyhow, my story: f/42, diagnosis rectal ca 4/12. This came following 4/8 colonoscopy with "considerable" (their word) finding, subsequent biopsy and result learned the day after Easter. I'd volunteered in March to raise money for cancer in memory of breast cancer patient and friend. Didn't think I was volunteering for anything like this!!

Have already endured 5 weeks of Mediport IV Infusion 5FU chemo/radiation to shrink tumor. Thought being, that treatments are going to happen regardless, why not make it easier on the surgeon and make it a smaller issue upon surgery. Treatments ended 6/17, and am now on "rest period" b4 7/27 resection surgery. It is located in the extreme bend of the sigmoid and surgeon has termed it rectal ca. Got through the chemo/radiation, but won't go into details unless someone else can benefit from my experience, which I would be glad to share. Been there - done that kinda thing. My new focus: surgery and subsequent follow up chemo (5FU and lucovorin).

Surgeon is colon specialist. Upon resection, he wants to remove ovaries, which doesnt bother me really. Feels that if ca is to return, they are prime targets, and at 42 and having had tubal ligation, they will not serve me further. Will also remove appendix while there. Believes he can resection without colostomy.

My debacle is keeping uterus and risking other cancers with hormone replacements as risks increase with estrogen and progesterin, which is needed if uterus is kept intact. Has anyone out there had a hysterectomy at the same time of a resection? My Gyn is concerned of a fistula forming and that being more of a mess. After reading all your posts of surgery pain, recouperation experiences, I'm thinking I must be crazy to even consider further invasiveness. Although, if I'm not utilizing ovaries, I'm not utilizing uterus, so why not do it all at the same time?

I just know that I don't want to encourage any revisit or spread of the ca. Diagnosis was not able to determine if it is a stage II or III. Will see what pathology report finds following surgery and removal of portion of colon. When surgeon goes in, it might be clear to do full hysterectomy, but all other organs seem to look okay in CT scan, which was done with the reactive IV.

I'm actually feeling pretty blessed to not have the ca in other locations. However, I'd like to do what makes sense from here on. Doctors are being very non-commital and saying there's risk in either direction.

Would appeciate any thoughts, comments, experiences, etc. that anyone is willing to share. This is driving me nuts, esp. with surgery 2 weeks away

Cancer sucks! <shouting it out!>

My very best wishes to all of you who are fighting the battle. God Bless.

Julesss

 
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Old 07-13-2004, 08:00 PM   #2
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Re: Rectal CA surgery pending- support/advice?

Ok, not to sound bad, but lungs and liver are prime targets for spread too, why not remove them also??? YIKES!! Surgeons do make money removing extra organs. That's my first thought to all this. Though, with that said, maybe they are just looking out for your well-being; it is true that pelvic organs are also prime targets for spread.

By the way, I'm m/31 dx w/stage 3C rectal cancer. Did the continuous 5FU/Leucovorin/Oxaliplatin with Radiation pre-op, and because some positive nodal involvement did chemo post but made me too sick, and after a cycle and a half (7wks) decided not to continue. I started post-op chemo late after ileostomy was reversed, so for 6mos. was negative on all CTs/PETS/and CEA's went from 0.8-0.7-0.6.

Anyway, having been through rectal surgery and all, and still experiencing pain, I can't imagine if they had suggested removing my testicles on top of everything else, just in case. You may be done with your uterus and ovaries, but they both continue to secrete amounts of progesterone/estrogen, which will be noticeable should you have a total hyst.

I don't mean to sound harsh, but I'm just appalled that they suggested all this, and personally wouldn't consent to it. I would consent to a colon/rectal resection/ lymphadnectomy with removal of peri-rectal fat pad/and temp ileostomy if necessary. Also, IF they found any other ca, but you say your tests have all come back neg. for mets. Of course, this is an individual decision, and I wish you the best of luck with your surgery. Please keep us posted.

Regards,
CancerDad (aka James)

Last edited by CancerDad; 07-13-2004 at 08:02 PM.

 
Old 07-14-2004, 12:18 AM   #3
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Re: Rectal CA surgery pending- support/advice?

Thank you, James for your insight. You do not sound harsh at all. I much prefer someone telling it like it is rather than blowing smoke. (got enuff things going on up there!! LOL) -- sorry, never pass up an opportunity for a snicker along the way.

If you don't mind, I have a couple of questions re: your post. You say that you are still experiencing pain How long has it been since your re-section? I am figuring it to be a lengthy recovery, however, I'm a bit surprised that others on the board have said 6 weeks and they are still feeling the pain. Also, you mention CEAs -- what exactly is that? (newbie, sorry!) You said you discontinued after 7 weeks on post-op treatment because you got so sick from it -- just curious as to whether or not you had reactions from pre-op chemo treatments as well. I had some issues with the chemo during pre-op and had to break for one of the 5 weeks, and the radiation knocked me hard during the last few treatments and hardest following the 5 week regimen, which I am still feeling, altho better each day. I am not at all looking forward to post-op chemo, which they are recommending for 4/1 month cycles; one week of injections, 3 off; repeat for a total of 4. It is a lighter dose of the same 5 FU.

I know absolutely about what you are saying about removing organs needlessly. If it was not so difficult to diagnose ovarian cancer, it would be less of a fear. And, it was my idea to contemplate the uterus. Call me an alarmist, but it seemed (depending on the moment of contemplation) a bit more discomfort would be better than a further ca issue or risk.

I can also relate to what you are saying about surgeons. If you think about the "business" end of cancer, it can be upsetting and stir some strong suspicions. However, I do have great faith in my surgeon in that he is well-respected and travels the world teaching laproscopy methods of colon surgery. He has developed specific methods in this area and has been recognized for his brilliant work. (seriously). He totally has left the ball in my court for making the decision about what the surgery will entail -- obviously within the realm of reason. He and I both know what is necessary, and what is preventative. I am just investigating, trying to make an informed decision by sharing information and talking to the people who have been in the same or similar shoes. In fact, I have an appointment this afternoon with a Gyn Oncologist, just to get another perspective.

This is all so new to me, and I don't know what your specific experience has been, but many kinda freak out to hear this happened to a woman of 42. Perhaps for you as well, since you are only 31 -- unless it is a hereditary issue. For me, I don't believe it is, but I have limited reference in that area.

I am happy to share my experience with anyone who is interested. It was so much of a transparent issue prior to my diagnosis that I had to pinch myself every day throughout my pre-op treatments because I kept wondering "how did/could this happen?" I was having discomfort and knew something was not right, but never imagined it to be ca. It seems to me being the "cancer dad", that you are a sharing kind of person, and if anyone hasnt thanked you for that lately, please allow me to. Thank you!! Thank you for taking the time to care and share.

I don't know too many people who havent been touched by ca through diagnosis of a friend or relative. I did find out that there are some not touched because they had no problem walking away from the opportunity to make a small donation via a $2 purchase when I was doing cancer fundraising in March.

Cancer sucks! <shouting again!>

Wow, guess insomnia and nervousness has made me awwwfuwwy wordy!

Thanks again......until later, Julesss

 
Old 07-14-2004, 06:42 AM   #4
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Re: Rectal CA surgery pending- support/advice?

Hi Julesss:
Let me double what you said... Cancer does SUCK! <shouting LOUDLY!!!> And can I tell you, the insomnia and nervousness continues... at different levels, but nonetheless continues. Get some Ambien and an anyxiolitic (like xanax or klonopin) from your onc if you haven't already.

Let me see if I can answer all your questions... you too I believe will find this board very therapeutic.. so ask when you have questions, and state when you feel like stating.

First off, I was resected (originally a 3-4cm tumor 2-3 cm up from the anal verge before radiation and chemo) beginning of Jan. 2004. I had my ileostomy reversed the end of May. I still have rectal pain, and referral pain to my hamstrings and buttocks, hips and lower back. We believe this is because the way they struggled to save my rectum-- 2 colo-rectal surgeons doing this open (the tumor was WAY too low to do lap) expected a 3 1/2 hr case... it ended up taking them 7 1/2 hours. They ended up doing a spincter sparing colo-anal pull thru technique in where they resected the tumor, scraped the inside of the intestine (mucosal lining), pulled the top end into the tiny piece of rectum left making a cuff, and painstakingly suturing by hand the reconnection (anastamosis). They also removed the nodes surrounding this area (6/10 were positive). There are a TON of nerves down there that wrap around the rectum, and I have had other problems-- urinary dysfunction, impotence, fecal incontinence, stricture or narrowing of the reconnection... just hasn't gone like I planned. Even though I knew the surgeon I ultimately chose, and had seen him perform many cases in the OR. I especially chose him because of his reputation for removing and reconnecting REALLY low in the rectum. Most surgeons wouldn't have been able technically to save my rectum. I wanted a surgeon who could try to make me normal again. And I held out hope, and still do, that things will get better as the nerves recover from the trauma.

CEA stands for Carcino Embryonic Antigen, and is a protein secreted by any tumors. It's tracked thru bloodwork. It's very a VERY important diagnostic and follow-up prognostic factor... the onc. will track this number after the tumor has been resected and after chemo to make sure it doesn't rise again. If it does, it means that there is a recurrence, or metastisis, and means you need to go in for more scans and possibly chemo. ASK what your CEA was when you were dx and what your CEA is now?

This play into your ovaries... if you get mets to the ovaries, your CEA level will rise. You run the risk of another surgery if you don't have them removed, but I still have trouble removing something now if there's nothing wrong with it. But, like I said, only you can decide what's best for you... and hopefully you have family or a partner and kids, whatever, who can help you reach this decision. But ultimately know that the decision is yours.

I did have side effects from the pre-op chemo... incredible mouth sores, fatigue, problems from the oxaliplatin.. numbness in my hands etc. I also had radiation burns on my buttocks, scrotum and penis. I was able to complete the cycles as difficult as it was.

This time around, I was on a chemo regimen called the Saltz Regimen, which nearly killed me. I got sicker and sicker with each dose. Oncs really like to bash the heck out of younger people, so I'm told. The Saltz regimen uses Irinotecan, 5FU, and Leucovorin. Everyone reacts differently to the agents used too.

Are you/your surgeon in the US? If so, do you feel comfortable sharing his name and where he practices? I'm just curious, I had a lot of surgeon contacts in the career I lost to this (for now).

Good luck with the GYN onc. and thank you for your kind words. I'm glad my story can help someone else. This has been an incredible experience for me, my wife, and two boys 5 & 8. Like I said, helping someone else get thru is strangely rewarding and helps in the healing process.

Best of luck... sorry for babbling.

Regards,
James

 
Old 07-14-2004, 07:34 PM   #5
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Re: Rectal CA surgery pending- support/advice?

Julesss:

Hey, Julesss, I'm a new one to rectal cancer, too. I'm a 37 yoa male with a tumor beginning at 3 cm above the anal verge. Ultrasound T3N1?M0. I'm in my second of six weeks of radiation and continuous infusion 5-FU. Things seem to be going tolerably well so far, other than the pain in my a** (ha ha), which is the reason I went to the docs. That pain has been made a little worse by the radiation. Not too much in the way of side effects yet, other than some tiredness, and I do take pain meds--usually one 5/500 Vicodin at bedtime. I sleep better since I've started the neoadjuvant, probably because of the tiredness. Surgery probably in September, and the surgeon thinks there is a high probability of a colostomy, but we'll see. The treatment regime is just getting started for me, and I have no idea what will happen. There were some diarrhea issues at first, but the radiation oncologist said to stop with the fresh fruit, and that has really helped--although it is the best season for nectarines right now.

I defer to Cancerdad in all things technical, in that I am a lawyer. As a lawyer, though, I've cleaned up many messes made by other people. Not to sound cynical, but double-check everything and accept nothing until you can confirm it with another source. Everybody makes mistakes sometimes, and there are no exceptions.

I'm very interested in any comments you have about the rad/chemo and how to tolerate it, or what might make it better. The rad onc recommended I hit the protein pretty hard, and I've replaced all the fresh fruit I used to eat with MetRX protein bars.

My best to you, and James, and all here. Hang in there, as you have and will. We are all warriors.

Cheers,

Kevin

 
Old 07-17-2004, 06:48 AM   #6
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Talking Re: Rectal CA surgery pending- support/advice?

Hey Kevin! ...and everyone.... It is nice to hear from you. I so wish that I had found this board prior to my treatments as I felt so alienated, misunderstood and victimized. So different from the world around me, with the exception of the medical staff I saw on a regular basis.

Firstly, as a follow up to the 2nd surgical opinion I received on Wednesday, I have made the decision to have a full hysterectomy. I know this is not really something that as men, James and Kevin have to be concerned with, but it raises some questions about how it might affect your particular circumstances. The doctor confirmed that my ovaries are shot from the pelvic radiation field and will never function correctly. There is no reason whatsoever to hold onto them. Removal of the appendix was fine also, since it was also in the radiation field, and we all know that it is a commonly removed element by non ca patients, so it should not be missed. My worry about keeping the uterus was because it would require the combination of estrogen and progesterone for hormone replacement, which increases the risk of breast cancer and other cancers when taken in combination. To keep the uterus from becoming cancerous, progesterone is given to keep the lining at a manageable and healthy thickness. If not managed, the lining can build up to thicknesses that would encourage ca growth. And, I was not opposed to giving up the uterus since I do not plan to use it for its intended purpose anytime soon -- in fact, not at all at this point. My regular gyn was concerned that the healing might cause a fistula, which would cause the healing tissues to kinda heal and bond together. This could mean the colon or the bladder would latch onto the vaginal wall and create new passages of travel, if you get my drift. Certainly not a situation I would like to see happen, but not necessarily something absolutely destined to happen . Only a risk. The gyn oncologist I saw said the tissue that has been treated with radiation will never be the same, and it would be better to have the uterus removed now, because it will only be more difficult to work with later in that the tissues are more workable now. He said that he continues to argue with doctors who do resections (on women) that come back to him 3-5 years later for ovaries/uterus and he says "why didn't you take care of that whilst you were there?" Also, since I do not have a good line of hereditary reference, so I cannot place weight on that. He did suggest that if I had any doubts at all, I could see a geneticist and be tested for a gene having to do with HNCPP (Hereditary Nonpolyposis Colorectal Cancer). It apparently is the most common form of hereditary colon cancer and there is a test that can identify inherited mutations in genes. (This would also be valuable information to my siblings.) I am trying to get in for this testing, and if feasible, will do so. Kind of a clincher to my already-made decision. If it works out I can get the test, great, otherwise, maybe later. Since Wednesday, I've felt like a great weight has been lifted and I have felt really good. (even tipped a glass of wine!)

Just for the record, my ca was termed rectal by my surgeon. It is about 7 cm up from the verge. The diagnosis was StageII/III (not able to make firm determination). Also, James, you were asking -- my most recent blood test showed my CEA at 0.7. I don't know what it was prior to my treatments. This seems low according to the range given on the report.

As for my treatments, I had some side effects that really did not show up till mid-way through the 5 weeks, and immediately following. I left a post on one other thread that I mentioned some of the issues I experienced. But, for you Kevin, I will tell you that the rad onc stressed the importance of having clean skin for the radiation treatments (no lotions,etc. until following treatment). I had my treatments 1st thing in the a.m. -- basically right out of the shower, and I downed 24 oz. of Ice Mountain water on the drive over. I never experienced external skin discoloration or external burns. They gave me Aquaphor ointment (any drugstore, etc.), which is good for dry anything. Somewhere I read not to use anything petroleum based. The Aquaphor can be used on the bum, on your tatoo areas, in the crack and even just inside your little tender void area.

I developed mouth sores, mostly on my lower lip, but if I'd gone much longer, I felt they were beginning toward the back of my throat. They said to keep my mouth as clean as possible because it was altering the good bacteria. They gave me a bunch of sponges on a stick for swabbing during the day. Also something called Gelcare that tasted alot like licorice to rinse mouth. It was ukky at first, but I learned the relief outweighed the taste. I also broke open vitE capsules and used on lips. Biotene gum, mouthwash and toothpaste helped too (drugstore items). I experienced some shortness of breath where all of a sudden I would just kinda gasp. I also had some nosebleeds. I never really took pain meds because my rad onc mentioned that he didn't want me doing that because they didn't want me to get constipated. Me, trying to be the "good patient" and doing my part, fought that temptation.

Talk about temptation,,,,,,,,the diet part was hard, and you're right esp the fruits of the season are a temptation, for sure. Just remember it wont be forever, and it is best to keep your diet to a low-residue, low-fiber basis. Definitely things you need to avoid. Your medical staff should have given you a booklet outlining this diet plan and/or had you talk to a dietician. If they haven't ---ASK!!!! Every hospital has one on staff.

I never really took any Rx meds during the treatments. They told me to take Immodium for the diarrhea, which I did. I found a good balance of 1/2 pill once in the morning and once at bedtime. I do have a single port mediport which I take 1mg coumadin daily to alleviate any clot issues. The most difficult side effect for me was the pain in the feet and hands. The bottoms of my feet felt like they were on fire - -- and my hands got swelled, turned bright red, were hard to bend, and began cracking from dryness. The bottom side of my thumbs just ached. I couldn't grasp a doorknob and make it turn. Overall, it was kinda like wherever I had callouses, thats what the chemo was targeting. The tender spots got tenderer and if it wasn't a tender spot, that chemo was destined to make it that way!! They recommended 300 mg of Vitamin B6 daily and a high percentage of lanolin based ointment (try 100% lanolin for breast feeding mothers-at the drug store baby isle -pricey at $10 but worth it). Use straight (kinda sticky, but you can work it with the warmth of your fingers) and/or mix with lotion/hand cream. I also schmeared up my feet at nite time with the stuff, wore baggies then socks over feet so that the stuff would soak in.

During the day, I wore what looked like those rubber garden shoes or clogs (many of the doctors wear them). Theyre made by Cherokee and called Rockers. I think Keds makes them too. They had a bounce to them that helped a great deal in getting around. I had them in my closet from last year and intended on using them for gardening. Aside from the Eyeore periwinkle color blue , I blessed those shoes daily. (the nurses loved them too!)

I didn't want to be home pouting, laying around feeling victimized, so I did all that I could to keep my daily routine and work schedule. I also became a really good Walgreens customer (shoulda kept that stock!) If you cant pamper yourself as a ca patient --- when the h*ll can you? Figured I owed it to myself to try anything that would help me. Toward the end of the regimen, the radiation -- which I otherwise rather enjoyed because it felt like it was knocking the tumor back (how sick does that sound?) began to take its toll as it does have a cumulative effect. I found great relief in the bathtub. I'd come home from work and draw a tub. Kitty kept me company (amazed with water). I'd come out for dinner, and go back to the tub. That was only in the last few days, and a few days followup however. I did feel shooting and fleeting pains to the nerve endings up and down the hamstrings, through the bum and found the elastic on the legs of my undies to be too much pressure. Go without at night if you are comfortable doing so. A little fan is a good idea too. The most relief I found was resting in a laying down position to relieve the pressure and weight on the areas and sleep sleep sleep. Your body heals when it sleeps. Do not rob yourself of the rest you need. You'll know when you've had enough. Listen to your body. Don't discount anything you feel and mention all things to your medical staff. Everyone reacts differently with body chemistry, different meds, etc.

BLAH BLAH BLAH. --- jeez, once I get started! All good wishes to you and everyone out there! Tick tick tick -- the 27th quickly approaches....... <yikes! -- nervous!>

Cancer Sucks!! <<<<Shouting from the Rooftop!!>>>>again!

[ removed ]

Note to James: I live in No. Illinois. I am curious to know what your career path has been as you seem so knowledgeable. [ removed ]

Good Bless all.......... Keep positive thoughts close -- We CAN all fight our battles, and together we will!!!

Last edited by moderator2; 07-21-2004 at 09:23 PM. Reason: Use this board anonymously, only - no emails.

 
Old 07-17-2004, 09:15 PM   #7
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Re: Rectal CA surgery pending- support/advice?

Quote:
CANCER SUCKS
Hi, my name is Jeff and cancer sucks. (ala AA meetings)

Perhaps it should be a mantra for us.

Kevin, I have a permanent colostomy. If it comes down to you getting one and you want advice I'll try and help. Same goes for anyone else reading this.

One thing I will say. If you have a hairy belly ( I resemble Austin Powers ) ask(tell) the surgeon you would like to investigate permanent hair removal around the site of the stoma. I wish I had thought of it before the surgery, it would've made things a little easier.

 
Old 07-26-2004, 01:57 PM   #8
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Re: Rectal CA surgery pending- support/advice?

Hi All~ Just thought I'd poke my head in before tomorrows surgery. It's happy resection day!! I haven't been around too much lately - enjoying some freedoms since the end of first round of treatments. It's nice to remember that life can still be good......and so many people have reminded me how wonderful it is to have people to care about and love.

For those of you struggling with the treatments, please be strong and remember there is life on the other end (oopps - pun again).

I drove by a church today and there was a message that said "everything that happens has a spiritual reason". I don't know what that reason is, but I wanna be tough and strong and get through this. I am hopeful I can do it and that the surgeon will have positive findings when the pathology comes back.

Wish me luck and say a prayer . ..... Off to pour up another Phospho-Soda cocktail! I'll check back with ya'll as soon as my butt will allow me to sit at the computer for a few mins.

Cancer Sucks!! <BIG BIG SHOUTS!!>

Best wishes and prayers to all, Julesss

p.s. Kevin, I hope you are doing well with your treatments. I've prayed especially hard for your strength to kick into high gear.

 
Old 07-26-2004, 02:43 PM   #9
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Re: Rectal CA surgery pending- support/advice?

Hi Julesss:

God time flies! Time for the resection already, huh? Don't worry, you will do great. It is nerve wracking handing your body over to someone to take care of for a while. But don't worry, it's only temporary, and you are in good hands. I never replied to one of your earlier messages.... sorry
<CHEMO SUCKS!!!!>

I finally stopped the chemo... couldn't go on b/c I got so sick from the Camptosar and the regimen w/5FU/Leucovorin. I figured it's been seven months now since the resection and I'm still clean... I am hopeful the cancer is gone....

<CANCER SUCKS!!!>

Anyway, couldn't give you my e-mail--against board policy!!! Although would have loved to answer your questions/any questions in a private forum... Moderator-- bring back e-mailing!!!

Anyway, the worrying sucks too!!! Every sneeze. Well, enough of me... you will be great. Don't be afraid to ask for more meds if you feel pain. I think you said you were doing PCA for the first days post op. Don't be afraid to push the button if you are uncomfortable.

And I never commented on your decision with the Hyst... Congratulations!!! That is a decision only you can make, and I'm certain you made the right one. Everything will go smoothly, and I'm confident you will get thru this great.

Hang in there and let us know how it went when you are up to it. Our thoughts and prayers are with you Julesss.

Regards,
James

Last edited by CancerDad; 07-26-2004 at 02:50 PM.

 
Old 08-01-2004, 04:39 PM   #10
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Re: Rectal CA surgery pending- support/advice?




I'm home -- I'm home -- I'm home!!!!!!! That was probably the hardest, and longest 5 days of my life. I've never been in a hospital overnight before. It is so good do be home.

I prayed for gas and I joked with my hospital roommate last night that after she was released I would get so much gas I would fly around the room blowing gas.

Well, that didn't happen until 4:00 a.m. No matter - it happened. Some small bowel movement at first then - ta da - almost like potty training -- GAS! Yipee! I walked the halls of that hospital until they literally got tired of seeing me. It helped a great deal to have the catheder removed because that on top of the IV had me trucking to pee (on my own I might add!) every hour on the hour. I just knew I couldt call a nurse every time THAT happend.

Anyhow checked out about 3:30 and home for a nice hot shower in my humble abode that I missed greatly. My arms are bruised to beat the band. The IV in the arm was fine until they gave me 2 injections one on top of the other (and sorry, James, I cant even remember what they were). I'll remember in the next day or two. Finally one nurse came to run a new IV tube and she said what is going on here? I said btw, did you want to use my port? YOur what? She said don't tell me -- your surgeons are blah, blah? I said how did you know? For whatever reason they use ports only for chemo and believe that is their purpose.

All is well, and I will elaborate more tom'w -- or later. Weak and tired now.

Praises to all of you! Thanks for your reply James. It helps know you folks are out there. I didn't have time to look for posts from Kevin - hope this note finds you well, my dear.

Off to my own little pillow...........zzzzz

(CANCER SUCKS!!) <meager shout, too pooped four too much loud shouting!>

Wishing you all Strength and Blessings , Julesss

 
Old 08-02-2004, 09:05 AM   #11
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Re: Rectal CA surgery pending- support/advice?

Quote:
Originally Posted by Julesss



I'm home -- I'm home -- I'm home!!!!!!! That was probably the hardest, and longest 5 days of my life. I've never been in a hospital overnight before. It is so good do be home.

I prayed for gas and I joked with my hospital roommate last night that after she was released I would get so much gas I would fly around the room blowing gas.

Well, that didn't happen until 4:00 a.m. No matter - it happened. Some small bowel movement at first then - ta da - almost like potty training -- GAS! Yipee! I walked the halls of that hospital until they literally got tired of seeing me. It helped a great deal to have the catheder removed because that on top of the IV had me trucking to pee (on my own I might add!) every hour on the hour. I just knew I couldt call a nurse every time THAT happend.

Anyhow checked out about 3:30 and home for a nice hot shower in my humble abode that I missed greatly. My arms are bruised to beat the band. The IV in the arm was fine until they gave me 2 injections one on top of the other (and sorry, James, I cant even remember what they were). I'll remember in the next day or two. Finally one nurse came to run a new IV tube and she said what is going on here? I said btw, did you want to use my port? YOur what? She said don't tell me -- your surgeons are blah, blah? I said how did you know? For whatever reason they use ports only for chemo and believe that is their purpose.

All is well, and I will elaborate more tom'w -- or later. Weak and tired now.

Praises to all of you! Thanks for your reply James. It helps know you folks are out there. I didn't have time to look for posts from Kevin - hope this note finds you well, my dear.

Off to my own little pillow...........zzzzz

(CANCER SUCKS!!) <meager shout, too pooped four too much loud shouting!>

Wishing you all Strength and Blessings , Julesss

Hi there

Congrats on your speedy departure from the hospital. Brings back fond memories of my husband's "Old Fart's Ward" where every passing of wind was accompanied by a rallying round of applause.

He also had similar experience with the port. Part of the "big sell" by the oncologist was that it would save having all those needles stuck in you. Hah! what a con.

Anyhow. Take it easy. Keep up with the gentle walking, its the best exercise.

Regards
Ktee

 
Old 08-07-2004, 04:59 AM   #12
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Join Date: Jul 2004
Posts: 26
Julesss HB User
Thumbs up Re: Rectal CA surgery pending- support/advice?

Hello Again Ya'll! Well its Saturday, I've been home since last Sunday night. It has been 10 full days since my surgery, and I have to say that I am really getting along pretty well. I had my approx. 45 staples removed on Thursday, and the most wonderful pathology report that I could hope for. Surgeon said (and gave me written copy) that there were only 2 small nests of residual tumor remaining in the section of the colon he had removed. The pre-surgery chemo and radiation shrunk the tumor by at least 95%. All parts that were removed had "no abnormal indications" including the uterus, ovaries and appendix. Out of the few lymph nodes he removed, only one showed slight presence, but the others were clear. He told my family that he did a good physical inspection of my liver and it looked just great, saying that is the best news possible. Asked me how my urination was, which I have no complaints, and he indicated he was careful to leave the nerve bank along the bladder as undisturbed as possible. My hero!

I'm still in quite a bit of discomfort, but am managing with the assistance of the pain meds. Also taking Ambien to help me get good rest at night because I was having terrible nightmares, assumed to be side-effect from the epidural and the fact that the administration of it had its faults and I ended up pretty dosed-up. That's another story. My husband can explain better as he was right there watching the nurses and the (duh) anesthesiologist try to figure things out.

Have been up and moving as much as possible and had lots of visitors come by to see me which is good to keep me busy and not laying around remembering how uncomfortable I am! Hardest thing is the belly hang. It pulls down the stitches and all that gravity stuff makes things worse. Try to walk as much as possible, and found out that lemonade is not a good substitute for cranberry juice (what was I thinking!). Was just looking for "something different", and it was wayyyyy too acidic. (live n learn).
Have had a couple of minor "accidents" in that things are so soft, they can slip out without you even being aware. I believe that to be getting better though and it has not happened since Wednesday.

I've had so many supporters-friends family and neighbors that have helped me along. They have an incredible prayer network going, and I feel that has been a powerful force.

Another follow up with surgeon in 2 weeks and about 2 weeks after that, will begin the final leg of the journey - 4 mos. of chemotherapy treatments. Not really looking forward to it, but hoping that my body will remember what its about and the addition of the leucovorin will make it easier. They said that is a vitamin B type med. to help with fatigue. NO MORE radiation!

My very best wishes to all of you. I was also very curious about Kevin and how he is doing also. I've been checking back to see if he's been around, and not seen him. I continue to pray for your strength Kevin. Be strong.

Until later..........God Bless All Take good care of yourselves!

Julesss (CANCER REALLY DOES SUCK!)

Last edited by Julesss; 08-07-2004 at 05:02 AM.

 
Old 08-07-2004, 06:51 AM   #13
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Join Date: Jun 2003
Location: Nassau, The Bahamas
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Nassau one HB UserNassau one HB UserNassau one HB UserNassau one HB User
Re: Rectal CA surgery pending- support/advice?

Wow, it sounds like you are douing really well! Especially as it is only 10 days since surgery. Those four months of chemo will pass amazingly quickly, particularly as you are assured that things are looking really good for you....that will be your motivation, together with the wonderful support system you have around you. I always feel so sorry for those who go through this on their own...it must be unbelievably lonely. That is why the boards are so good too...to be able to vent and share experiences with those in a similar situation. It helps us carers too who are so afraid for our loved ones but cannot always express that to them in fear of causing them even more anxiety.

All the best to you!
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 08-20-2004, 05:17 PM   #14
Junior Member
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Join Date: Jul 2004
Posts: 26
Julesss HB User
Re: Rectal CA post-surgery

Well, I've been reading some of you all's recent posts. I am hopeful that someone will give me some help in understanding this drainage thing.

You see, as I last mentioned all was going well.........until I began feeling some greater than usual pain and they flung me back into the hospital last wednesday - I returned home day before yesterday so I was there a full 7 days as they were treating me for an abcess, which they suspected and confirmed after blood test and contrast CT. Everything seems(ed) to be mending in the abdominal area okay, except the colon, which is a bit tender yet. I've been on flagyl and another kind of antibiotic (not good with names) throughout the hosp stay, and for the first 2 days was just on saline IV. They switched me to liquid IV nutrition in the hosp, and now I am continuing it at home with a nurse who comes in on a daily basis to hook me up. I cannot get around without some assistance, but the IV infusion and pump are in a backpack that I have in a little cart that allows me to wheel it around the house, however the stairs I do need help. My husb is on fam med leave and we opted for the full term of 12 weeks in case of complications. (good for us.)

Monday I go back for a CT scan to review the abcess and see if it has gone away. (Do they just "go away"?) The catheter for the drain is in my lower right back/upper buttock area. A good shot to the muscle! I am finding that my pain management in the hospital was like a dog chasing his tail, and was not at all adequate. My home nurse came in, talked to the doctor and I now have a 72-hour morphine patch with oxicontin for break thru. In the hosp I had laudenen injection 1mg. every 2 hrs., which had me watching the clock in anticipation of the next fix. I never got any real rest. When I did fall off, they came in to stick my finger or take vitals. If I knew then what I know now!

My home nurse is an angel sent from heaven, and until I got home I could not apply any pressure on the catheter without going past the rooftop. I couldnt sleep on my side because my heavy belly would pull down the abdomen. Rolling out of bed to stand required a mid-cycle sit which was another shot into orbit. My arms are a mess from the IV sites that went down, and anything on the left was stressed and strained due to the fact I had to use that arm to get up on to get out of bed. Thank God for the mediport for the IV infusion of TPN (liquid nutrition).

Anyhow, even b4 I left the hosp on wed, there has been no measurable drainage from the catheter. They may remove it on Monday following CT scan. I am fearful of something further developing as a result of this abcess. They say the tissue is so thin from radiation and I think they actually use the word "fried" as a medical description.

Any words of encouragement or related experience would be helpful. I almost feel silly asking because there are so many of you (Ca D, etc) that are experiencing far greater issues with pain, etc. (have you looked into a pain patch?) It is a wonderful thing.

Signing off for now. I feel like I've rambled alot, for which I apologize, but my brain has been so out of focus. May strength and healing beams be sent to all of you........ I believe in angels! (although cancer still does suck! )

Until later, Julesss Good night all and take good care.

 
Old 08-22-2004, 02:53 AM   #15
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Join Date: Oct 2003
Location: England
Posts: 705
ktee_uk HB User
Re: Rectal CA surgery pending- support/advice?

Hello Juless

It's good to hear you are getting more comfort from being at home. You may have my comments in other threads about my husbands drainage probs after his liver op. He took 3 weeks to stop and this was on his right side where they took most of the liver from. When he finally stopped he was allowed home but took an infection straight away and had to have another 3 weeks in a more local hospital on IV antibiotics. Cause of infection was probably combination of liver leaking/backflush of bacteria when they took the original drain catheter out/general infection. He was in a lot of pain and could not bear to be touched.

What kind of drainage catheter do you have? Husband started out with a tube draining into a carry bag type thing which hooks on end of bed, then when volume of drainage reduced he had the tube shortened and a bag stuck over onto his skin. When the second tube was pulled out it looked like a corkscrew !!! Maybe yours has got kinked up somewhere. Can they do anything to alter it or even put another drain in? It might be a painfull procedure but may ultimately allow you to rest more comfortably. Worth asking the question maybe.

I came across the morphine patch when caring for my mum. It worked really well for her and it also meant we didnt have to wake her up to give her meds. We ultimately had to switch to a morphine pump towards the end. If I or husband ever have to have serious pain relief in hospital I will in future ask for a patch although I gather they are relatively expensive in the UK.

Good luck with your scan. Best news will be that you have stopped draining because you are healing well. Once your drain comes out you will feel so much better I am sure.

Best wishes
ktee

 
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