New to forum new to rectal cancer...have questions

DulcimerGal

Great to hear from you Mike -

did you get your path report?
what stage did they finally decide on?

I just got home yesterday - will post report...

Cheers
DulcinerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

mike3 · Regular Joined: 03 Jun 2008 Posts: 25

Hey Everyone

I know it's been a while but the path report is Stage II T3, No, Mx. I going to see a chemo dr Thrusday. Also a radio dr I guess. I didn't have any treatment before surgery so I guess they want me to have it now. Does this sound right to you guys ?

REB

I had emergency surgery to save my life, so it was just over a month before I started treatment.

I went in today for my 3rd PET scan. I get to have them every 3 months for this first year.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

mike3 · Regular Joined: 03 Jun 2008 Posts: 25

Thanks for you reply Reb. That is about my time line, 5 weeks tomorrow. I don't think my case was like yours. I guess my dr is one that still does surgery first and the treatments after. There talking chemo and radiation both at the same time. Did you do that ? I'm ready for what ever it takes.
Thanks again

REB

No radiation for me. I guess it is because they removed all traceable signs of the cancer when they removed the tumor.

I am a little nervous about this pet scan. It is the first one I have done since I finished chemo. If it shows anything, that will be bad. It means I am Stage IV, not Stage III, and the chemo wasn't effective. So here's praying they don't find anything. I won't know anything until next Tuesday.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

BobNCalif · New User Joined: 28 Jul 2008 Posts: 7

Mike,

I had 75% of my rectum removed, but not via laproscopy. I too was told that elimination function is inevitably adversely affected, but my surgeon emphasized he has had patients who get back to near-normal, but it can take 2-3 years.

Yes, if you're like me, you can definitely expect much more frequent, smaller bowel movements. I posted a couple of replies to Goldie about this (her one that appears highest in the forum list). There are some things you can do to deal with it.

Regarding open surgery vs laproscopy for rectal section: I had a couple of large polyps in my upper colon, too, so my surgery was "open"; I don't know if laproscopic was even an option for my rectal tumor, since it was located very low; any lower and I would have had to have a permanent colonstomy.

I'm no medical expert, but I think there may be definite advantages to laproscopic in your case. Namely, less likelihood of severing nearby nerves that control urinary and sexual function. This happened to me. That area is packed pretty tight, so it is hard for a surgeon to work down there without doing some collateral damage.
_________________
Bob, N Calif

BobNCalif · New User Joined: 28 Jul 2008 Posts: 7

Am copying some stuff I had posted elsewhere, regarding bowel movement difficulties after LAR/rectal section.

I had a LAR with temporary ileostomy in July 07, via open surgery. The tumor was located 5cm in; any lower and I would have had to have a permanent colonostomy. About 75% of my rectum was removed. Accdg to my surgeon, this has unavoidable impact on elimination function, whereas colon resections "higher up" do not necessarily impact elimination. Surgeon told me any improvement would likely require years, not weeks or months.

After my ileostomy was reversed (Oct 2007), I experienced diffiulct bowel movements, with a lot of variation in what was going on. Instead of 1-2 "BM"s a day as I'd had before, I'd often have 20 or more, usually quite small, but nevertheless difficult to expel. Anal pain/bleeding would often result. Bowels seemed not to "shut down" as well at night, and so I also experienced frequent sleep disruption. I would often hope for a large BM to occur (instead of constant small ones), and if/when one DID occur, it was often quite painful. Anal/sphincter area would become painful/sensitive to the point that passing even a tiny, tiny bubble of gas would be very uncomfortable. Etc etc etc. "Things just aren't the same down there anymore!"

I was glad to be alive, but was sad that my QOL had been more affected than I had been led to believe. I almost wished I had had a permanent colostomy instead. I was very frustrated by inability of my Dr.s to help w these symptoms; they just kept saying I needed to give it more time, up to 3-4 years. They did encourage me to "experiment", and see what things worked. I watched my diet carefully, kept a diary, did experiments with Immodium and a variety of laxatives. Immodium could provide a day or two of relief (e.g. no BMs at all), but I would have to "pay the price" for that relief later.

Nothing seemed to work, at least not well/reliably enough. Until a couple months ago, when I had a very substantial improvement!

In my case, here are the main things I learned, which I think helped alleviate my discomfort and eventually promote some improvement. I think these things would most likely apply to you, too, if you are experiencing high frequency of small BMs, which lead to pain in sphincter/anus area.

(1) Use cottonelle baby wipes instead of normal TP. Softer, pre-moistened => gentler, less friction. Also facilitates good cleaning.
(2) If anal area is painful/bleeding, I use Aloe Vera gel with Lidocaine added, but no alcohol. You can find such near Suntan/Sun-burn lotion area of drug store. I put a dab of this on a Kleenex, and use that for "final"cleaning. It is soothing and provides some topical pain relief. I fold the Kleenex twice when using Aloe, to avoid "poke through".
(3) Sometimes the pain was severe. I got my M.D. to prescribe Delotid/hydromorphone (a morphine derivative). Lesser drugs such as Vicodin just were not enough. But when I had extreme pain, a 2 mg Delotid pill would usually provide enough relief that I could get a night's sleep.
(4) After much experimentation with Immodium and various laxatives, I finally found that -- for me -- MiraLAX (an osmotic laxative) works best. It is a mild laxative that can be taken every day (if needed), and which usually requires 2-3 days in a row before taking effect. It seems to have the effect of "keeping things moving" in a normal/good manner.
(5) Finally, AND MOST IMPORTANTLY FOR ME, I found that I MUST avoid all forms of NUTS and SEEDS. Of course, these were on the "No No" list during chemo/radiation/ileostomy, but I had (wrongly) decided that I could indeed eat nuts with no bad consequence. (I love roasted mixed nuts.) I did notice that they could contribute to especially-painful BMs when passed, as the nuts result in a gritty/sharp-edged residue. But I was having painful BMs anyway, and I love nuts, and I thought that once they had passed there were no further consequences. It took me many months to realize that just one serving of nuts could cause days, maybe even weeks, of continued BM difficulties. Once I gave up nuts/seeds altogether, THAT is when I experienced significant improvements. (It was about the same time I started using MiraLAX, so improvement was probably due partly to both.)
(6) I also learned to avoid eating large quantities of chips/crackers. In large quantities, the waste from these is similar to that of nuts: gritty, sharp-edged.
(7) If having a series of small, difficult BMs, I found that changes of body position can help. I have read posts on other LAR sites that others have found such "toilet gymnastics" can be a little helpful. Two that work best for me are: (a) lower head, raise buttocks - repeat; (b) lean way back, with area near tailbone pressing hard against the back of the toilet seat.

Other observations:

Surgeon had initially recommend a "mild" laxative, specifically Milk of Magnesia. I took me months to realize that Milk of Magnesia was an ESPECIALLY BAD laxative for me. In small quantity it just made elimination more difficult, in that the greasy/sticky stool was difficult to expel. In larger quantities it would produce a large/messy/violent BM.

Next I tried "Senna", which is sort-of a "reverse Immodium": it works by stimulating peristalsis. But despite repeated use, I don't think it actually ever had any noticeable effect.

The skin on the back of my hands got in bad shape, due to washing my hands 20-30 times/day. Use lotion if washing hands a lot.

I ran across an interesting medical term on one of my web-research sessions, which describes what had been one of my most common symtoms: "tenesmus". It was comforting just to know there's a word for it, and that it is not just "in my head".

I saw a recent study comparing QOL for post-LAR patients: those who had permanent colonstomy, versus those that were reconnected. Interestingly, the study showed no "significant" difference in QOL of life between the two groups.
_________________
Bob, N Calif

mike3 · Regular Joined: 03 Jun 2008 Posts: 25

Thanks Bob

I'm not really doing to bad a the BM.s. Its slowed down a little, and no pain when having a BM. Little blood now and then but I was told that was normal.

I'm starting chemo and radiation next week. I'm told that will change the BM's.

Thanks for your reply
Mike[/quote]

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