Hopes4Cure

Congratulations on your husband's most recent news!  Am so glad the supplement regime was a factor to his success!  Is there a quantity of each supplement?  I'd like to see if it could work in my favor too.

Thank you,

Arlene

Parkgirl77 (Granger),

You may have already seen something like this, but forgot to send you this link of 3D Animation of Low Anterior Resection for Rectal Cancer in my previous message.

http://www.youtube.com/watch?v=HIbWD3ID1uI

Hello Parkgirl77 (Granger),

Thanks for clearing that up, as I thought you were considering getting the gastric sleeve surgery done.  However, what was the reason for the gastric sleeve surgery in the first place, if you have Rectal Cancer, T3N1, unless there is evidence of lymph node involvement near the stomach.  The N1 in your staging denotes there is 1 lymph node, but "where" is important to how it is treated. 

A rectal resection would be a completely different surgical outcome.  Without getting into too much detail, since the rectum connected to the anus, there are a lot of control issues that may occur after the resection is done.  The muscles of the stomach are smooth muscle (involuntary muscle) and so, we don't have voluntary control over them in the first place, hence you did well on the liquid diet and had no leaks.  However, the muscles of the rectum are skeletal muscle (voluntary muscle) and so some of that function will be impaired / tampered with, simply because of the surgery and a colostomy is required for that muscle to heal and or adjust to new bowel that's put in its place.

I have to agree with all 3 surgeons you've seen.  Did they explain the reasons for chemoradiation to be done BEFORE surgery?  Chemoradiation (chemotherapy and radiation that can be given together at the same time or separately) has become the standard practice in many colorectal cancer treatments.  The radiation will be pinpointed on the tumor as best as possible.  HOWEVER, not all tumors have a smooth surface and hence, by way of physics, not all rays from the radiation will be absorbed by the tumor --- some may bounce off and hit surrounding organs (which is a reason there could be many side effects).  It can also cause for free radicals to be released into the body.  To HELP sequester / destroy the free radicals in the body, is the purpose of the chemotherapy.  These two are recommended to be doen before surgery, so that whatever parts of the rectum or bowel they take out has the best chance of being completely devoid of cancer cells.  And yes, it is true what the 3rd surgeon has said ---- you run a higher risk of recurrence should you do the surgery first, due to unintended surgical "seeding", which means --- cancer cells accidentally spreading to surrounding organs during the time of operation.

Answering your questions:  No, as of late I haven't had bladder issues.  I understand that would be an issue for you, being a horse back rider.  I was treated at an oncology clinic in Virginia Beach, VA where I live, BUT am going to John Hopkins, Baltimore, Maryland for my surgery.   My radiation was 6wks for 5 days a week for a total of 25 treatments.   Some people may have 28 treatments, but it depends on calculations made by the radiation oncologist.  I wouldn't see you getting less than 25 treatments because of your stage.  I was on 5-FU but not oral.  I have a Mediport (also called Powerport, Infusaport) in my chest.  I had a 5-FU Pump that sent the medication thru an IV into my Mediport 24 hours a day, of course small doses at a time.  Yes, my cancer is adenocarcinoma, as confirmed by the Pathology reports.  But even without the Patho reports, most colorectal cancers are adenocarcinoma.

If I haven't mentioned it, my staging is also T3N1, possibly N2 -- suspicion of distal lymph node.  I completely understand your concern with the treatments as I too live a fairly active lifestyle, as I am a runner.  I did have my own hesitation about implanting the mediport and having the 24hr 5-FU pump and radiation at the same time.   But after I got into a routine, and stuck with it, it became manageable.  The only part that WASN'T and still isn't easy is that I am a Doctor as well and I know that medicine isn't a SURE thing.  I'm aware of how "BAD" or "GOOD" things can get, when there are major changes in bloodwork, diagnostic tests, and physical exams.

I know you mentioned you were staged at Anderson (in Texas), they are #1 in the US for Cancer Treatment.  If I could fly myself to Anderson, I would!  I live on the East Coast & don't have that option right now.  I'd really consider what your Doctors are advising you at Anderson, but it's your right as a patient to refuse as well.

I hope this message helps and apologize for it being so lengthy, but the more anyone knows about their condition, the better!

Sending positive healing your way,

Arlene

Hi Parkgirl77,

What is the stage is your cancer? I understand your unwillingness for chemoradiation, given the side effects that come with it during treatments and possibly years down the road.  I'm 38 & was diagnosed Stage 3 Rectal Cancer in June and have just finished chemoradiation 3 weeks ago.   I was anxious about starting chemoradiation but have tolerated it in the beginning, but started getting mucosal irritation & painful bowel movements, near the end of my treatment time.

I've consulted with 4 surgeons and wasn't given the option of surgery without an ostomy.  I'm scheduled for surgery on Oct. 18th and will be getting a temporary ostomy.  I don't like the idea of an ostomy... no one does... young or old.   And I anticipate going through weeks of adjustments.  I won't be getting a reversal anytime soon, as I'm also set-up for 6 months of high dose chemotherapy.

Did you ask your surgeon about the Stomach Gastric Sleeve?  Did they guarantee that the "benefits of the procedure would outweigh the risks?".  I understand the mechanism, where most of the stomach would be removed & hence you'd get a feeling of "fullness" earlier, which would also slow down your intestinal activity.  But, it is usually done for weight control, hence most, if not all colorectal & surgical oncologists would opt against doing the procedure.

But being a doctor (and patient at the same time) myself, I know that these standard forms of treatment (chemo, radiation, & surgical resection) can give a 78% survival rate from this disease. 

Any other procedures less invasive could work, but why take the chance?  That was something I told myself from Day 1 of diganosis and keep telling myself now, just to push myself forward in treatments.  Ask all the questions you can think of, address them to all involved in your case --- doctors, nurse practitioners, PAs, & other specialists, etc.

Hope to hear of your progress!

Arlene

Sorry for the typo... Thank you for sharing your experience, as my story is quite similar to YOURS and I hope TO have the same positive outcomes are you did.

Thank you for sharing your experience, as my story is quite similar to your and I hope for the have the same positive outcomes are you did.

Was diagnosed this year June 2012, Rectal Cancer Stage 3, with 1-2 positive lymph nodes. Did CT Scan, MRI, & PET -- all were negative.  Went & completed 6 wks of radiation & 5-FU 24hr infusion pump.

I'm now 2 1/2wks into a 6 wk healing period, but not without consequences of pain during bowel movements and fears of eating anything more solid than soups, cottage cheese, yogurt, skinless fruits, and white bread.

I've got surgery set for Oct 18th, for a low anterior resection with temporary colostomy.  I'll then have 6 months of Folfox and reversal to follow. 

I'm so glad to hear your reversal was a more positive experience for you, despite the posts.  I've read many of those as well. 

May you be blessed with many more healthy outcomes in your continued journey!

Arlene

I just mentioned the smart toilet seat to my husband. And he's more interested in it for his own external hemorrhoids.  Thanks for letting me know of the cost! 

I so understand what your husband has to go through, by having to finish all bathroom trips before going that's not 10 ft from a bathroom.

That's good to know that it's pear-like in flavor.  There's a mexican market not to far from me and will look for the Sour Sop Juice there. 

I wish your husband continued luck and well-wishes in his Journey!  God Bless!

Wandalein,

Again, thank you for sharing all this information. I never knew about the "smart" toilet.  And it does sound like something I would be able to benefit from.  I still go through sitz baths before and after bowel movements.  And my whole morning routine is focused on allowing ample time for it all.  :( 

I'll look more into the Sour Sop fruit, as I'm told, I cant have fresh fruits with skins or seeds in them.  Have yoou tried it yet, since this posting? What other fruit can you compare it to?

Thanks,

Arlene

Hi Mimi15,

After being diagnosed in June 2012.  In August, started 25 treatments of radiation (5 times a week) with concominant 5-FU by mediport.  I just finished both last week!  I can say that I didn't experience many side effects during week 2-3.  I made sure to stay hydrated throughout my treatment weeks and slowly saw less rectal bleeding during my bowel movements. I also experienced some fatigue with the 5-FU, but glad to say, nothing else.

However, I began having PAINFUL bowel movements during week 5 -6 due to inflammation from the radiation, a patch of peeled skin on my vagina, & occasional shooting, mini electric shock-like pain in my anus.  I complained about it to the Radiation Onc., & I was given Silvadene creme and Lidocaine 5% topical creme.  It takes minutes to take affect on the pain.  I have Percocet as needed, but only take it at night, when back pain or the rectal shock-like pain keep me from sleeping.

I too was very nervous before radiation started.  Ask as many questions of your radiation therapists and doctors to help guide you through the process!  If I can be of anymore help, please post your questions.  I'll be "around", waiting for 6 weeks of healing time before surgery.

Good Luck & God Bless you in your Journey!

Arlene

Hello,

I'm finishing-up radiation tomorrow, but not without consequences in my last week.  I've gone excruciating pain during bowel movements and have limited my food intake, by quantity and by texture, trying not to eat anything solid. 

I've met with a Nutritionist a few weeks before this pain began and she recommended Ensure Plus.  Right now, I don't even want that, as it just burns and feels like I ate chili peppers with razors in them!

I'm glad to hear your husband looks and feels better!