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Old 09-22-2006, 10:06 AM   #1
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update and rectal surgery

Hi, gang. As you may recall, I am fairly newly diagnosed, rectal cancer, stage 2 based on all the scans but of course only surgery is definitive.

I am nearing the end of a phase that was 28 radiation zaps and book-ended chemo - 24 hour pump for 5 days at the start and at the end. Next week I do my other chemo week.

I just had blood work done, cea dropped, I appear to be a little anemic and my white and red blood cells are low but in the normal range.

I have several questions as I near surgery. After next week, I will have about a month off to recover before they operate. I am having the abdomino-perineal resection with the colostomy. I understand that the gold standard for rectal surgery is something called Total Mesorectal Excision, or TME, and that this surgical procedure is what really increased the success of rectal cancer treatment when it was introduced.

All you rectal cancer folks, is this the type of surgery you had ? Did any of you NOT have this kind of surgery ? Did any of you have "extra" tissue/organs removed as a precautionary measure, and if so, was it just a precaution or in your case did the dr have a reason, ie, something looked fishy in a scan or something ?

I am having nightmares where they let the resident intern who looks like he's 10 years old do the surgery, and me, running from the hospital screaming.

I know I must cover these questions with my surgeon, but you guys give me so much good input that my questions are always better.

I meet with my oncologist today, too.

Also - I would like to get a flu shot. I realize that I cannot get a flu shot when the Big Chemo starts around Xmas or January, but there will be nearly 3 months from the end of the chemo/radiation until the Big Chemo, and I would like to think I recover enough to get one. I do have young children and would like to avoid getting really sick come January.

I know that Chip's dr told him to get a flu shot, however, he had not had any chemo/radiation before hand.

Also -- I am not taking any supplements at all, should I be, such a multivitamin with iron ??

I have done really well so far. Bum only slightly sore, and only just now, very well handled with creams. A slightly itchy vagina due to extra secretions, also well managed. Husband and I still able to have sexual relations. Very minor fatigue and only for a short time, very minor nausea that is dealt with by sucking a mint.

Thing is, I have felt a lot better since starting treatment. My rectal cancer HURT badly, and kept me from sleeping. The 2nd or 3rd day of my treatment, the pain was gone, it was remarkable. So I actually have far less fatigue now than I did before the radiation. I also have not had any diarrhea beside one day, took an Immodium, never had it again.

I realize it won't be like this on Big Chemo, but I am glad this part went so easy.

Thanks for tolerating my long message, thanks even more for the replies, and thanks the most for the support.

jeni

 
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Old 09-22-2006, 12:15 PM   #2
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Re: update and rectal surgery

All you rectal cancer folks, is this the type of surgery you had ? Did any of you NOT have this kind of surgery ? Did any of you have "extra" tissue/organs removed as a precautionary measure, and if so, was it just a precaution or in your case did the dr have a reason, ie, something looked fishy in a scan or something ?

During surgery, typically surgeon will ensure that all boundaries of the resected parts are cancer free. If not then they may cut more.


Also - I would like to get a flu shot. I realize that I cannot get a flu shot when the Big Chemo starts around Xmas or January, but there will be nearly 3 months from the end of the chemo/radiation until the Big Chemo, and I would like to think I recover enough to get one. I do have young children and would like to avoid getting really sick come January.

Ususally depends on oncologist. 50% recommend the shot 50% don't. Data study has not been able to establish any advantage or disadvantage either way. So go with what your onco recommends.

Also -- I am not taking any supplements at all, should I be, such a multivitamin with iron ??
Same as abve. Studies has not established any advantage or disadvantge. My onco also didn't have any preference and he left it to me. So I decided to take it regularly.

On the flu, just side note. Once I got a severe flu during rest period of the chemo. On the day of chemo I had running nose, running eyes, mild fever .... But as soon as chemo started, it started going away. Believe it or not, by the time chemo was over (about 4 hrs), flu was totally gone. Guess the chemo has killed virus within minutes.

Do not get worried about getting sick with flu in future. Take it as it comes.

 
Old 09-22-2006, 03:13 PM   #3
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Re: update and rectal surgery

Dear Jeni,

Good luck on your up coming surgery.

Regarding the flu shot, I got mine while on chemo (ie I got it during my week off, it did not seem to phase me, or effect the chemo treatments).

I had my surgery 2 yrs ago for stage 3 rectal cancer. I today have a colonostomy bag and will for the rest of my life. By choosing the bag, I gave my surgeon carte blanche to get it ALL the first time. I had a colon rectal surgeon do my surgery. I am sorry to say, I'm not exactly sure what type of surgery I had (I do have the zipper scar on my stomach). A lot of information came to me at once, what you mentioned does sound familiar, so probably so. I do have all my records, but I REFUSE to look at them. Somthing about ignorance being bliss.

I did get my female reproductive organs taken out also at the same time. My surgeon did it for me. I wanted them out because 1) I was scared of the cancer popping up there, 2) I had already been advised a few yrs back to get them out in 10 -15 yrs anyway, thus avoided a 2nd surgery there.

Do not take any supplement/vitamins without your doctor's prior knowledge/concent, sometime these supplements are counter productive to the chemo treatments.

Hope this helps some, again good luck, you will make it.

Lee

 
Old 09-23-2006, 05:57 AM   #4
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Re: update and rectal surgery

Hi Jeni

I had surgery for rectal cancer in March 2004. I had no lymph node involvement. My cancer also hurt, I did not know what was causing the pain in the rectum. I was beginning to have problems sitting down and it also felt like a ache at times.

The cancer was very low in the rectum, 4 inches up. I did not have to have radiation first. Surgery was done, a resection and I was given a illeostomy for 12 weeks after surgery. The reversal was done in June 2004. I still have many bathroom issues but things are slowly improving.

I did not need chemo as the rectal cancer was at a very early stage but I did need chemo for uterine/fallopian tube cancer. At that time I was told not to have a flu shot and not to take any supplements. I know people who have done both and they are also doing well. I think this is a decision for your oncologist to make.

I found recovery from surgery took some time, mainly I was tired. With all ht meds for pain I was always very comfortable.

Good luck and remember to make a list of all the questions you ned answered when you see the surgeon/oncologist. I found at times I would forget questions.

Good luck....

 
Old 09-23-2006, 09:37 AM   #5
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Re: update and rectal surgery

Lee, why did you get your female organs removed too ? Was it just recurrence fear ? You also mention " I was told I would need to get them removed in 10 - 15 years anyway " - was there a separate problem or do all female rectal cancer patients need to get them removed ?

When I talked with my surgeon earlier about maybe removing additional tissue, she didn't sound supportive. What would be the indication that this extra measure should be taken ? Appearance of the tissue ? Or just a general suspicion of where it might return ?

Does organ removal mean it doesn't have a place to land ? Or does organ removal mean you already believe a microscopic spot may already be there, so let's get it out now ?

Any other female rectal cancer patients also remove other organs in anticipation of potential recurrence ?

Lee, what depth was your tumor, do you know ? Mine has gone thru the wall but according to the endorectal ultrasound, ct scan, pet scan, no nodes, no other organs touched. Of course, only surgery will be definite there.

I am okay with the colostomy. I truly, truly am.

As some of you can tell, I am trying to get all my ducks in a row, and may want to get a second opinion.

I am finding myself very anxious about the surgery.

Thanks Lee and everyone for your responses. I pray for all of you all the time.

Jeni

 
Old 09-23-2006, 11:34 PM   #6
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Re: update and rectal surgery

Jeni,

I had my female reproductive organs removed because of my history of preg/miscarriages (10+ confirmed). My last preg. was bad, had a fibroid, which the doctor had to remove thru surgery. Because I was still having periods then, we decided only to have my tubes removed then, but he adivsed me to get everything removed in about 10-15 yrs.

While this type of cancer is not suppose to show up in the reproductive organs, there was another chat line where is did happen to a couple of women, and I could see it happening to me also. Also I was trying to avoid a 2nd surgery down the road as far as getting them removed. I'm sure they test it for cancer, and nothing was found.

I believe part of the reason my surgeon agreed to remove them is because she was already in the area as far as my tumor was concerned. I have problems today down there, scar tissue, radiation, etc. I see a special therapist and GYN to address this issue. My surgeon has already told me surgery is NOT an option to correct this problem.

As far as specific information regarding my tumor, I'm afraid I don't remember. I chose to focus on fighting it.

Hope this helps.

Lee

 
Old 09-24-2006, 04:59 AM   #7
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Re: update and rectal surgery

I had rectal cancer and eventually developed uterine/fallopian cancer.

This was not a spread of colon cancer but two primary cancers. I have the HNCPP gene which does give me a much higher chance of developing uterine cancer along with colon. I was also on Tamoxifen at the time of dx.

The surgeon now says I should have had a hysterectomy at the time of my colon surgery. If you are past child bearing years Ithis is an option that some doctors suggest, I wish mine had. Instead it was a year later I had to have surgery again.

I was 48 at the time of the hyst,I have not gained weight but do suffer from
hot flashes and night sweats. Not too difficult to live with.

After 4 cancer dx in 3 years I am a firm believer of prevention at all times. It is better to be cautious than sorry.

Good luck....

 
Old 09-24-2006, 09:32 AM   #8
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Re: update and rectal surgery

Lee and Annie, thanks so much for detailed replies ... this is just the sort of question I will have for my surgery and I am thinking of getting a 2nd opinion at Fred Hutchinson Cancer Center.

The last time my surgeon and I spoke, she was not keen on removing extra tissue as a preventative measure. It seems to me that it may make sense, but I want to get more info on it.

As for all folks with rectal cancer, men or women, did any of you have "extra" tissue or nodes removed just as a precautionary measure ?

I read somewhere - only one place and no, of course, I cannot recall - that sometimes nodes in the pelvic area are also removed as a protective measure.

Anyone else have any input on this ?

Jeni

 
Old 09-25-2006, 09:52 AM   #9
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Re: update and rectal surgery

Jeni,

I also had a total mesorectal excision, appendectomy, total hysterectomy, and temporary ileostomy last November. My colorectal surgeon was the one that suggested taking out the uterus etc. He said there is a link between colorectal cancer and uterine and/or ovarian cancer. Since the radiation and chemo put me into menopause already...why not? I am glad I did it as that is one less thing to worry about ... Not having a period isn't so bad, either! I take hormones to help w/the menopause hot flashes, mood swings, etc. I would try to get a referral to a gynocologist oncologist. She can give you all the info you need...

With the TME my doctor took out about 10 inches of my colon in order to get the nodes he needed.

I did get my flu shot - I believe I was in between radiation/chemo and surgery when I had it...probably late October. I would leave that up to your oncologist's discretion.

Hope that info helps some!

Take care and good luck!
Cats

 
Old 09-25-2006, 11:23 AM   #10
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Re: update and rectal surgery

Quote:
Originally Posted by Jeni61
Hi, gang. As you may recall, I am fairly newly diagnosed, rectal cancer, stage 2 based on all the scans but of course only surgery is definitive. Hi Jeni. Welcome to the boards, though I am VERY sorry for your diagnosis. Stage 2 is manageable, as you know, and I hate statistics, but I'll just say that you have a very good chance of recovery/remission; though Rectal Cancer DOES have a higher rate of recurrence for some reason. I was diagnosed three years ago with Stage 3C Rectal Cancer with 7/10 positive nodes. It gets harder to remember exact numbers as time goes by and you receive more and more treatment!

I am nearing the end of a phase that was 28 radiation zaps and book-ended chemo - 24 hour pump for 5 days at the start and at the end. Next week I do my other chemo week. I too did radiation first with chemo (continuous 5FU/Leucovorin and a drip of oxaliplatin).The combination made me extremely tired, gave me SEVERE mucositis (sores in my mouth), and towards the end, external burns around my anus and genitaila. But it DID work to shrink the tumor.
I just had blood work done, cea dropped, I appear to be a little anemic and my white and red blood cells are low but in the normal range.

I have several questions as I near surgery. After next week, I will have about a month off to recover before they operate. I am having the abdomino-perineal resection with the colostomy. I understand that the gold standard for rectal surgery is something called Total Mesorectal Excision, or TME, and that this surgical procedure is what really increased the success of rectal cancer treatment when it was introduced. The procedure NOW that has been tested,etc. has been proven to be the TME. This allows for clear margins, nerve preservation, and sphincter preservation. At the time of my surgery just 2 1/2 years ago, there were NOT many colorectal surgeons trained in this technique. Because my tumor was SO low (2-3 cm from the anal opening, the ONLY technique they could do was a colo-anal pull thru procedure. This is where they transect and then strip the inside mucosal linings of the colon, and what's left of the rectum, and sew the two ends together leaving a cuff. Then they make a temporary ileostomy for close to six months. After I had my ileostomy reversed, we discovered how strictured the anastamosis became. I was left to painfully dilate my anus daily and liquefy the contents of my stool as the opening dilated was as big as your pinkie finger. This was EXTREMELY frustrating, disappointing, depressing, etc. and after a LONG year and a half, I ultimately ended up with a permenant colostomy. I did not have a true APR, however, where they remove your entire rectum through a perineal incision, because I had SO much scar tissue that they were afraid they would not be able to determine where nerves or blood vessels were and told me that their concern was that I would "literally bleed to death on the table." At 33 with a wife and 2 kids, this was not a risk I was willing to take.

Radiation does EXTREME damage to your tissue... damage that you don't see, but might recognize later on with hip pain, sexual dysfunction, early menopause,etc. and also wreaks havoc with your healing. If you are having an APR with colostomy, MAKE SURE YOU SPEAK WITH YOUR COLORECTAL SURGEON about using a VAC device. Plastic surgeons having been using them for ages and it will help healing faster. He/she may say you don't need one, but be forceful and just say that you will find another colorectal surgeon then. This was recommended to me by the Lahey Clinic.


All you rectal cancer folks, is this the type of surgery you had ? Did any of you NOT have this kind of surgery ? Did any of you have "extra" tissue/organs removed as a precautionary measure, and if so, was it just a precaution or in your case did the dr have a reason, ie, something looked fishy in a scan or something ?

I am having nightmares where they let the resident intern who looks like he's 10 years old do the surgery, and me, running from the hospital screaming.
Unless you are using a non-board certified general surgeon, there is NO WAY that a colorectal surgeon will let a resident do much of anything. If there is a fellow available, this is a little different, and I would trust your surgeon's judgement. He/she will not let a brand new fellow do an APR with colostomy. I don't know ANY colorectal surgeon, and there are not that many board certified ones out there, that would allow a even a fellow to do much without extensive training with him/her first.

I know I must cover these questions with my surgeon, but you guys give me so much good input that my questions are always better.

I meet with my oncologist today, too.

Also - I would like to get a flu shot. I realize that I cannot get a flu shot when the Big Chemo starts around Xmas or January, but there will be nearly 3 months from the end of the chemo/radiation until the Big Chemo, and I would like to think I recover enough to get one. I do have young children and would like to avoid getting really sick come January. This is up to your oncologist, and you should ask prior to your procedure.

I know that Chip's dr told him to get a flu shot, however, he had not had any chemo/radiation before hand.

Also -- I am not taking any supplements at all, should I be, such a multivitamin with iron ?? Many oncologists will tell you to take VERY high doses of Zinc (220mg/day) due to it's ability to clean up free radicals. These are pieces of damaged cells... which you have plenty of after chemo and radiation-- even after stopping the regimen. So this is the one that is often recommended. Talk with your oncologist or oncology nurse.

I have done really well so far. Bum only slightly sore, and only just now, very well handled with creams. A slightly itchy vagina due to extra secretions, also well managed. Husband and I still able to have sexual relations. Very minor fatigue and only for a short time, very minor nausea that is dealt with by sucking a mint.

Thing is, I have felt a lot better since starting treatment. My rectal cancer HURT badly, and kept me from sleeping. The 2nd or 3rd day of my treatment, the pain was gone, it was remarkable. So I actually have far less fatigue now than I did before the radiation. I also have not had any diarrhea beside one day, took an Immodium, never had it again.

I realize it won't be like this on Big Chemo, but I am glad this part went so easy.

Thanks for tolerating my long message, thanks even more for the replies, and thanks the most for the support.

jeni
GOOD LUCK, and feel free to ask any questions you have.

Warm Regards,
CancerDad
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Old 09-25-2006, 11:57 AM   #11
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Re: update and rectal surgery

Hey CD,

What is a VAC device?

Thanks,
Cats

 
Old 09-25-2006, 04:58 PM   #12
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Re: update and rectal surgery

Jeni,

Update, I saw my SPECIAL GYN today regarding my special problem. She was looking over my records from my surgery, I had the TME approach. Seems my surgeon listed the reason for removing my female reproductive as "painful periods". When my gyn asked about my painful periods, I told her that was just an excuse. She understood.

lee

 
Old 09-25-2006, 07:04 PM   #13
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Re: update and rectal surgery

Hey Cats:
I hope you are healing well and taking it slowly!

A VAC or Vaccuum-Assisted-Closure Device promotes healing in large abdominal wounds or ANY wound for that matter and fights infection following surgery. It is especially useful in compromised patients succeptible to infection. I was told by a colo-rectal surgeon at the Lahey Clinic in Boston that should I have a complete APR, and have my entire rectum removed that I should definitely have the surgeon use a VAC.

Hope that answers your question. Also I'm hoping and praying that you are feeling better and recovering nicely.

Fondly,
CancerDad
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Old 09-25-2006, 08:55 PM   #14
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Re: update and rectal surgery

Quote:
I am having the abdomino-perineal resection with the colostomy.
Dug out my Operative report, I had abdominal perineal resection. Reading through it I see they were quite satisfied with themselves in being able to remove the entire rectum in one piece.

The pathology report states that the entire specimen of rectum and anal skin was in one piece.

tumour was 4.2 cm in diameter and occupied 40% of the total luminal circumferance( inner surface rectum at that spot I suppose)

I did not look to see how many lymph nodes were taken out but I do recall being told that there was no lymph involvement and that no cancerous cells were found on the outer surface of the rectum. The only other tissue that was removed was anal tissue 1" to one side of the anus and 2" to the other side in order to ensure good margins. this means that when sitting I have less muscle and fat between the chair and my coccyx than other people and consequently sitting for long periods on hard chairs is downright painful. I cannot sit crosslegged on a hard floor at all.

Oncology reccomended that I do not get a flu shot but I was already in chemo in June and flu shots were available in August so I was already in a compromised immune system situation.

I washed my hands religiously while on chemo. Still, I managed to contract tonsillitis for only the second time in my life. Otherwise I had no infections that I recall.
Diareha was a problem a few times and I took immodium. Sometimes it took 4 or 5 tabs to shut the gates. Get a prescription for generic equivalent (loperimide if I recall correctly) it is waaaay cheaper, they'll give you a couple of dozen for the price you'll pay for 8 Immodium off the shelf.

Last edited by jaydees; 09-25-2006 at 08:57 PM.

 
Old 09-27-2006, 07:30 AM   #15
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Re: update and rectal surgery

Everyone who took the time to reply, thanks so much, it helps me form my questions to my surgeon and consider things that might not be apparent to me otherwise.

Cancer Dad, do I read your post correctly ? Were you give Oxipalitan as part of your neoadjuvant therapy, during the chemo/radiation phase ? Correct me if I am reading that wrong. I have never heard of that. If I am reading this correctly and it was given to you prior to surgery, can you tell me why ? Was it considered more effective, to guarantee greater success with the surgery ?

I have 3 zaps left, after today. Little chemo pump churning away. I have had a very easy time with the radiation/chemo regimen, altho I expect mouth sores by Saturday ( I do have a prescription steroid paste that worked fabulously last time). My bum is a tiny bit sore but not at all bad, and once again, the cessation of pain that I felt once I started treatment last month was remarkable. A little burning sensation when I defecate is teensy-weensy compared to the feeling that I was sitting on the pointed end of a glass cowboy boot, which is how I felt before.

I don't expect the rest of my treatment to be this easy, I know I am facing some hard stuff. And I am getting really, really anxious about the surgery.

Your questions and responses help me tremendously -

Jeni

 
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