Newly diagnosed rectum cancer

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tater
Posts: 67
Joined: Wed Jul 19, 2017 5:53 pm

Re: Newly diagnosed rectum cancer

Postby tater » Thu Aug 23, 2018 9:06 am

rtcasper wrote:Thanks everyone, for your replies. Just an update. Had my MRI and CT. It would appear as though there is no spread, except to perhaps 1 node. It would also appear as though the tumor is a little father up than initially suggested by my colonoscopy. So, it may become classified as sigmoid. I will meet Dr. Matthew Kalady of the Cleveland Clinic on Monday, my surgeon, and he will make the call on how he would prefer treatment to take place, whether chemo/rad then surgery etc. Or surgery then follow up chemo. I will update occasionally as I go along, just to give any new diagnosed persons a general timeline of how things play out, in my case anyway.

I still keep you all in my thoughts and prayers every night!



That's good news if it is higher than expected. Even though the CT only picks up a single node they will want to remove more so the are assured that they have the clean margins.
Keep us up dated on your treatment plan.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018
Reversal Surgery 6/26/18

ValZen
Posts: 31
Joined: Fri Sep 08, 2017 8:16 am

Re: Newly diagnosed rectum cancer

Postby ValZen » Thu Aug 23, 2018 12:12 pm

That's very good news there's no spread and it's higher up than you originally thought! It's great to see an update from you and am glad you'll keep us posted as you get into treatment. You're in my thoughts and prayers too!

rtcasper
Posts: 23
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Wed Aug 29, 2018 11:42 am

Met with Dr. Matthew Kalady of the Cleveland clinic on Monday. Got a surprise enema and scope,was not expecting that, but he wanted to see exact placement for himself. Very confident, explained things very well, overall great impression. His initial thought was to treat it as standard rectal, but would put all the information to a panel of peers to see what they came up with.

Called me on Wednesday and has recommended short course radiation, 1 week, wait 7-10 days, then surgery to remove the tumor. I assume this will be followed up by "mop up"chemo for a time.

His reasoning for the short course is that the tumor is not very big and is in a good placement for him to retrieve laproscopically. I will have an ileostomy for a time, but otherwise I think that's good news. The less chemo and/or rad that I have to endure, the better?

I am getting genetic testing done and have donated my results to the current studies that he is doing regarding microbiomes. This certainly springs things forward a bit, as the surgery is very daunting to me, but onward we must move!

I hope everyone is doing well!
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation

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O Stoma Mia
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Re: Newly diagnosed rectum cancer

Postby O Stoma Mia » Wed Aug 29, 2018 11:41 pm

rtcasper wrote:(...) Met with Dr. Matthew Kalady of the Cleveland clinic on Monday ...Called me on Wednesday and has recommended short course radiation, 1 week, wait 7-10 days, then surgery to remove the tumor. I assume this will be followed up by "mop up"chemo for a time... I will have an ileostomy for a time, but otherwise I think that's good news. The less chemo and/or rad that I have to endure, the better? ...

Yes, I think you're right -- the less chemo/rad, the better -- that is, whenever this approach can be justified.

I just wanted to mention one other thing, though, that is not always covered whenever the topic of 'temporary ileostomy' comes up: When you have a temp ileo in place, the number of months that you have it in place is a critical factor. During all of this time the colon is "off-line" and not actively performing bowel movements. What happens is that the colon and the associated muscle groups then eventually become weak or lazy due to lack of use. The scientific literature mentions something like 4 months as being the "point of no return." If the patient does not do any pelvic muscle exercises at all to keep the sphincters and pelvic floor muscles in tone while the temp ileo is in place, then eventually the colon becomes quite dysfunctional and almost beyond rehabilitation -- i.e., after about 6 months of continuous temp ileo presence with no exercise, the colon as well as the sphincters, etc., essentially forget how to function, and then when the reversal eventually takes place it can be extremely difficult to train the colon how to behave properly. In essence, we then regress to the status of a being a toddler who has to go through toilet training from the very beginning

So, when the doctor or nurse suggests that you try doing some Kegel exercises, or squats, or vigorous power walking while you are on a temp ileo, this is probably good advice and is something that should be followed. It might help reduce future problems and frustrations.

The scientific studies show that patients who have temp ileostomies in place less than 4 months have significantly fewer bowel control problems during the post-reversal period than patients who have had to have their temp ileo in place a longer period of time

rtcasper
Posts: 23
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Thu Aug 30, 2018 6:01 am

Thank you for that information, o stoma mia! That is something that I will keep in mind as we plan for the process. Obviously, I would prefer to have it as short a time as possible, but of course, I want to be responsible in regards to the typical treatment time.

Question, has anyone had a reversal first, then followed with chemo?

Is this a potential option, I wonder. I imagine it would be based on the amount of spread a person has, if any, and whether they feel recurrence is a real possibility. Docs probably feel that if more surgeries are going to be a necessity, then u wouldn't want to keep cutting and reattaching. It'll be a question that I ask, though.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: Newly diagnosed rectum cancer

Postby lakeswim » Thu Aug 30, 2018 1:15 pm

Thank you, O Stoma Mia, for that information.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

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susie0915
Posts: 840
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Newly diagnosed rectum cancer

Postby susie0915 » Thu Aug 30, 2018 1:42 pm

rtcasper wrote:Thank you for that information, o stoma mia! That is something that I will keep in mind as we plan for the process. Obviously, I would prefer to have it as short a time as possible, but of course, I want to be responsible in regards to the typical treatment time.

Question, has anyone had a reversal first, then followed with chemo?

Is this a potential option, I wonder. I imagine it would be based on the amount of spread a person has, if any, and whether they feel recurrence is a real possibility. Docs probably feel that if more surgeries are going to be a necessity, then u wouldn't want to keep cutting and reattaching. It'll be a question that I ask, though.

I had a reversal before my adjuvant chemo. Four weeks after my resection I had a blockage. Was in the hospital for 3 1/2 weeks. I had an ng tube for a week with no food to see if the blockage would resolve itself. My surgeon told me if he had to do surgery to remove scar tissue he would reverse ileostomy, to avoid another surgery later. I had x-ray with barium to be sure no leaking. I had to have surgery so ileostomy was reversed 5 weeks after original surgery. Unfortunately, I did get c-diff in the hospital so that was not fun right after reversal. Once the c-diff was resolved and healed from surgery I started chemo about 6 weeks later. It was not bad, but I did deal with more diarrhea caused by the chemo, which is why originally my surgeon was not going to reverse until finished with chemo. But I got through it, and diarrhea did subside after chemo was finished. My oncologist gave me some meds to help.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

MissMolly
Posts: 557
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Newly diagnosed rectum cancer

Postby MissMolly » Thu Aug 30, 2018 2:12 pm

To anyone who may have need of a temporary loop ileostomy, there is certainly no critical juncture of 4 months as a make or break timeframe for a successful reversal and functional defecation process.

Individuals have temporary loop ileostomies for a variety of conditions that necessitate its presence beyond 4 months. Advanced endometriosis, a sever flare of Chron’s or ulcerative colitis, pelvic injuries due to an automobile accident may necessitate a temporary ostomy in the order of a year or more. Successful reversals with patent sphincter control and neuromuscular coordination is often the case.

Low rectal cancer with lower anterior resection (LAR) does add to the complexity of anorectal recovery. This is due to potential trauma to the autonomic and parasympathetic nervous system and nerve bundles that pass through the narrow condines of the pelvis. Men have a narrow anatomical pelvic structure than women and may be more susceptibile to LAR syndrome.

Adequate healing of the surgical anastomoses is imperative when deciding on a reversal date and reversal timeframe. Insufficient healing of lower intestinal tissue already frail from radiation can lend to a host of problems - fistulas, abscess, and leakage of intestinal contents among them.

“Exercises” to maintain tone of the voluntary sphincters (aka Kiegel/ exercises) is wise while a temporary ileostomy is in place.

The passing of “mucus poops” via the anus is a normal and expected occurance when one has a temporary ileostomy. Surgeons tend to neglect to inform patients about “mucus poops” which can lead to confusion and fear when it first happens. The diverted lower section of intestine continues to be alive and function as it normally would if it were connected to the upper digestive tract - secreting mucus, serous fluids, short chain fatty acids, and shedding cellular debris. This material needs to exit the body as it would normally with the passage of a bowel movement in an intact digestive system, via the anus. For most individuals, the passing of “mucus poops” will be an intermittent finding - maybe 1-2 times a week. Sitting on the toilet, without straining, often facilitates the passage of mucus poops.

Diversion colotis is the case where the resting lower intestinal tract becomes inflammed due to the lack of passage of normal fecal material. Fecal material actualky nourishes intestinal tissue. In the absence of fecal material, the resting intestinal lumen can become inflammed with an over growth of the bacterial flora. Symptoms of general malaise, pelvic pressure, and foul/putrid discharge may indicate disuse colotis. An appointment with your physician would be in order. Flagyl (antibiotic) or steroid suppository can be prescribed.

If anyone here does have need for a temporary loop ileostomy for a time frame longer than 4 months, do not feel that hope for a successful reversal is dashed.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

rtcasper
Posts: 23
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Tue Sep 11, 2018 8:35 am

Began first of 5 radiation treatments yesterday, short course radiation. I'm pretty sure they had the dial turned all the way up to 11. Felt a little flushed afterward, went back to work, ate lunch, finished the day and headed home. Felt a little tired, but wasn't sure if that was from the rad or the terrible nights sleep I had before. Ate a grilled cheese sandwich and apples for dinner and took a gas pill, felt a little bloated. Went to bed early but noticed the bloating was still present, uncomfortable. Burping up the food I had eaten. Noticed my entire gut was starting to feel very cramp, not painful but incredibly uncomfortable, and I was so tired. Took 1 imodium AD to help with the gas/cramping. It did alleviate the symptoms for a little while, and I would doze off, but they would return in waves. Got up, walked around, and the discomfort became more painful, layed on the couch for a bit, then realized I was going to throw up. Threw up what looked like everything I had eaten after treatment yesterday. I did immediately feel better tho, and was able to get a couple hours sleep. Trying to rehydrate this morning and eating very light, and did pass stool finally.

Wtf? I hope this isn't a nightly occurrence, even for 4 more days. It's almost like my intestines shut down for a while. I'll tell my doc today,get her thoughts. Meanwhile, light eating and much hydration.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation

ValZen
Posts: 31
Joined: Fri Sep 08, 2017 8:16 am

Re: Newly diagnosed rectum cancer

Postby ValZen » Wed Sep 12, 2018 10:32 am

Hi rtcasper, I'm sorry to read you're having a rough time with your radiation. The short course is a higher dose as I understand it...I had a co-worker who was treated for prostate cancer with the shorter course radiation and he went through the facial flushing and upset stomach that you're mentioning. I hope your doc has helped you out and you're getting through the last 4 doses okay. Hang in there.

rtcasper
Posts: 23
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Newly diagnosed rectum cancer

Postby rtcasper » Thu Sep 13, 2018 3:00 pm

4 doses down, 1 left to go. I haven't had any other issue like a had after the first dose, so I'm chalking that up to something viral or maybe something I ate. Pretty uneventful so far. I do notice a little fatigue slipping in around 3:30-4 each day, but no big deal. I really stepped up my fluid intake,especially powerade,for the electrolytes. I do not want that cramping sensation again. No issues with diarrhea so far, just my normal loosish stool. No skin issues, I apply a little lotion to my butt each night just in case. 1 day left and then we'll see how the weekend and next week goes in regards to any after effects. I'll update later.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: Newly diagnosed rectum cancer

Postby Caat55 » Thu Sep 13, 2018 7:22 pm

Wow, that sounds totally cool, five treatments. I actually think the radiation was the hardest on my body, skin down there so fragile, so short course sounds good.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

DarknessEmbraced
Posts: 3115
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newly diagnosed rectum cancer

Postby DarknessEmbraced » Mon Sep 17, 2018 10:14 am

I hope your radiation and surgery go well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17


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