What to expect?

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Foreveryoung
Posts: 7
Joined: Thu Jun 22, 2017 9:39 am

What to expect?

Postby Foreveryoung » Thu Jun 22, 2017 10:05 am

Hi - I'm new to the forum. I'm 33y/o and just went through a colonoscopy. My dr showed me the picture of a lesion and is quite large, he indicated that it's roughly the size of four fingers?

We sent this in for biopsy two days ago and still waiting for results. The lesion is located in my rectum.

My mother passed away with ovarian cancer at a young age, and no one in my immediate family has a history of cc.

Can someone help me with the questions I should be asking my doctor? I'm going in for a Ct scan next week to see if the cancer has spread anywhere.

Right now I feel pretty helpless, and I think it would help if I know what to expect. I'm scared that I would have my rectum removed and I need to carry a bag around for the rest of my life. I'm scared that I won't be able to have children after the surgery. I wish I knew there was something I can do at this point in time so I can cope with it.

Thanks in advance.
33 y/o M DX June 2017
RC lower

Volfan
Posts: 8
Joined: Sat Mar 11, 2017 7:58 am

Re: What to expect?

Postby Volfan » Thu Jun 22, 2017 4:50 pm

I've only been diagnosed since the first of March so I don't have a lot experience.
For me so far the waiting part for the first scan and seeing the oncologist the first time.
Since I've gotten into of a routine of treatment and see the doc on a regular schedule my emotional feeling is a lot better.
As for questions my wife and I wrote a long list down before we met with the oncologist. My doc is great. He literally spent over an hour with us the first time going over whatever we had questions about.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Lee
Posts: 4917
Joined: Sun Apr 16, 2006 4:09 pm

Re: What to expect?

Postby Lee » Thu Jun 22, 2017 5:03 pm

Hi and welcome, so very sorry for the reason you are here.

If you do indeed have cancer, more than likely you will probably do chemo/radiation prior to surgery for about 5 weeks. This help shrinks the tumor and helps the surgeon get clean margins. Following radiation, recovery 6-8 weeks. Then surgery. 6-8 weeks following your surgery (depending on staging) chemo, usually FOLFOX. If you are a stage 1 or II, chemo may not be necessary.

I would HIGHLY recommend a board certified "colon rectal surgeon" do the surgery vs a general surgeon. They have special/extra training and you want that extra training for rectal cancer. You will probably be on a low fiber diet for a while following your surgery.

If you should need a colostomy bag, really they are not that bad. I am a 13 yr survivor from rectal cancer. There has been a lot of advancement since my treatment. Radiation was very hard on me and destroyed 2/3 of my rectal muscle, thus I was tied to toilet for hours any time I ate. Not a life, I could eat anything until I was home for the day. May times that would be 3-4 in th afternoon. Please remember a lot of advancement have been made since I had radiation. Anyway getting the bag gave me my life back. I can be out all day, play in the ocean or go horseback riding. It does not hold me back. People don't know I have one until I tell them and I am very open and honest about it, I figure I can educate people about colon rectal cancer with my bag. Believe me there are MANY people out there who have a bag for MANY different medical issues and you do not know it. It is more common than you think.

Be sure to see an Ostomy nurse prior to surgery, they can educate you about colostomy and answer all your question and concerns.

This is a start, please ask any and all questions. You will find a wealth of information and support here. You are not alone here. We have all been in your shoes, thus we get what you are going through. right now.


(((Foreveryoung)))

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Jacques
Posts: 401
Joined: Sun Dec 28, 2014 10:38 am

Re: What to expect?

Postby Jacques » Fri Jun 23, 2017 1:25 am

Welcome to the Forum, and I'm sorry you have to be here.

There are lots of questions you could ask your doctor, and there are threads here that cover those topics. I'll just mention one question right now that you can ask: You can ask where, exactly, is the lesion is located. This is usually expressed as the distance from the anal verge. This will give you an idea of how low in the rectum the lesion is and how much of the rectum will have to be removed by surgery. Generally speaking, the lower the lesion is the more difficult it is to deal with the lesion.

Here is a reference to start with that addresses the issue of location as a factor in determining a rectal cancer treatment plan:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53147&p=419990#p419990

- -
PS: There's another question you should ask at the beginning: Have they tested your CEA tumor marker, and if so, what is your CEA level. This is important
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
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DarknessEmbraced
Posts: 2609
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: What to expect?

Postby DarknessEmbraced » Sat Jun 24, 2017 5:15 pm

Welcome to the group and sorry for the reason you're here.*hugs* I hope your biopsy results come back quickly. I'm sorry for the loss of your mother.
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 01/21/2016
NED 11/10/16

ozziej
Posts: 206
Joined: Thu May 21, 2015 8:35 pm

Re: What to expect?

Postby ozziej » Sun Jun 25, 2017 5:47 am

I just wanted to let you know that it is possible to have low rectal cancer and not have a permanent colostomy. I went into surgery not knowing whether i would have an ultra low anterior resection with a temporary loop ileostomy or an APR with a permanent colostomy. The surgeon said it was just too hard to say until he got in there. I awoke with a temporary ileostomy which I found easy to adapt to. I had my reversal 3 months later. I will be honest and say that there have been many times over the past 2 years that I wished I had my bag back. There are challenges whichever way things go. But life is generally good if you can retain a sense of humor. I agree with the advice already given. Find the best colorectal surgeon you can, and ask for a second opinion if you're unsure or uncomfortable about any decision you have to make. And don't hesitate to ask for support on this board, as there is a wealth of experience to draw from.
Breathe, then breathe some more. It's a marathon not a sprint.
Best wishes.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

Foreveryoung
Posts: 7
Joined: Thu Jun 22, 2017 9:39 am

Re: What to expect?

Postby Foreveryoung » Sun Jul 09, 2017 10:52 pm

Thank you all for your responses. The biopsys came back and it is cancer.

My GI doctor told me to get a CT scan of my pelvis area. Then my oncologist had me get a CT scan of my chest area in addition to an MRI of the pelvis. All with and without contrast. I am on a high deductible insurance plan, and those three tests cost me over $1000 in out of pocket deductible and my surgeon didn't even rely on them! Can anyone shed light on what tests are most cost efficient so I don't perform so many tests while undergoing chemo/radiation and before surgery?

I am seeing a colon rectal surgeon and he says the tumor is about 2mm away from my scphinter which he think s is more than enough for the ileostomy. He took a couple more samples to see if his team can determine if there is invasion. He believes this is the case and that it is stage 3.

I'm meeting with a radiation oncologist and a medical oncologist to go over chemo and radiation plans. How does the chemo make you feel? How is the radiation or chemo administered?

@ozziej - what do you mean you wish you had the bag back? What challenges are you speaking of?

@jacques - thank you for sharing the link. What is CEA testing?
33 y/o M DX June 2017
RC lower

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ocstacy
Posts: 45
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: What to expect?

Postby ocstacy » Mon Jul 10, 2017 2:05 am

My mom has a tumor lower rectum stage 3A. I researched for the best colorectal surgeon in the west and he is located @ Keck USC of Los Angeles.
I really loved him and all of his reviews. The GI let me know that most likely she will end up with a colostomy bag, I was torn.
So when we met with surgeon, he mentioned depending on my mom's sphincter muscles, he possibly could hand sew her a new one. I was very shocked.. like what?! "hand sew" that is what he said. I was so happy, but it all depends on how this tumor shrinks and stuff.

Did you all have to have chemo after your surgery? How many of you have colostomy bags? How do you change it? I had to give my mom an Anema, and help my mom with rectal preps prior for MRI scan so all that doesn't bother me. I had to sit in when the doctor was giving her a rectal exam. I really should have been a nurse. I will do anything for my mom and even though we laugh when I have seen her rectum, we both cry laughing cause she thinks it is funny and embarrassing. She feels ashamed and dirty where the tumor is located. She is constantly always in the bathroom at least 12 times a day and she can't go anywhere cause she is always running to the bathroom. I feel so bad.
Caregiver/daughter to dear mother age 77, diag.5/09/17
Rectal CA Stage 3A Low grade adenocarcinoma (1 lymph?) 6cm
Neoadjuv. Chemo/Rad. start date 07/10/2017
Xeloda 2600 mg daily Rad.Onc Mon-Fri (28 days) End 8/16/17 -2 mth break after
Colorect surgery @ KeckUSC, Dr Sang Lee-chief- 10/2017
Possible chemo post tx/surg
Prayers for "Complete Response" or "NED" I do not have the cancer but I am living the moment
My 1st colonoscopy 07/2017- age 39-hemmy's background- NERVOUS :? :roll: :|

Foreveryoung
Posts: 7
Joined: Thu Jun 22, 2017 9:39 am

Re: What to expect?

Postby Foreveryoung » Mon Jul 10, 2017 5:16 pm

I'm meeting with the radiation and medical oncologist next week to discuss treatment.

Does anyone share what radiation therapy or chemo will be like? Will I be able to work? Do I need to take time away from work? How will I feel? How to best cope with the after effects?
33 y/o M DX June 2017
RC lower

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kellywin
Posts: 472
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: What to expect?

Postby kellywin » Mon Jul 10, 2017 7:01 pm

So sorry that you had to join, but welcome.

Foreveryoung wrote:My GI doctor told me to get a CT scan of my pelvis area. Then my oncologist had me get a CT scan of my chest area in addition to an MRI of the pelvis. All with and without contrast. I am on a high deductible insurance plan, and those three tests cost me over $1000 in out of pocket deductible and my surgeon didn't even rely on them! Can anyone shed light on what tests are most cost efficient so I don't perform so many tests while undergoing chemo/radiation and before surgery?

The CTs are vital to check and see if it's spread to any nearby organs (lungs & liver). I also had an MRI to check and see how far the tumor had grown into the rectum wall. There will be more CT scans to come during this marathon, one possibly when they get you set up for radiation and possibly one a few weeks after radiation before surgery.

Foreveryoung wrote:I'm meeting with the radiation and medical oncologist next week to discuss treatment.
Does anyone share what radiation therapy or chemo will be like? Will I be able to work? Do I need to take time away from work? How will I feel? How to best cope with the after effects?

You'll find that peoples experiences and opinions are all different. But here is mine.

You'll probably be on Xeloda (oral/pill chemo) with radiation (maybe 5FU instead of Xeloda, personally I'd go with Xeloda). The Xeloda pills were really a non-issue for me, no real side effects. The radiation is the gift that keeps on giving. I was able to work full time, and didn't miss a single day of work during that time. Parts of radiation are the shits, literally. Biggest problems for me were urgency and toward the end it feels like razor blades are coming out. Fatigue is an issue as well.

Foreveryoung wrote:I'm scared that I won't be able to have children after the surgery.

I hate to mention this, but It's very very possible (likely) that radiation will put you into menopause. There were a couple of people on here a couple years ago that did a different type of radiation, a 5 day course, so that may be an option, idk, but typically it's 5.5 weeks/5 days a week. If you want to have children after this, you definitely need to speak with the Radiation Oncologist during your first appointment.

Since they're saying stage III, it's likely you'll have chemo after surgery, which would be either Xeloda or 5FU plus a heavier chemo Oxaliplatin = Xelox or Folfox. This chemo can be a lot harder, it did kick my ass. But I still worked full time throughout, I ended up taking a few days off right after each infusion. With the Xelox, it's a 3 week cycle, and I think if you want to continue to work, this is easier than the Folfox which is usually infusion every other week. The 3 week cycle gives you more time in between infusions and more time that you feel better (my personal opinion).

There's a lot of information to take in right now. I think you'll feel better once you get your plan down and know what's coming.
Kelly, mom 12 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2017 Clear CT!

Jacques
Posts: 401
Joined: Sun Dec 28, 2014 10:38 am

Re: What to expect?

Postby Jacques » Mon Jul 10, 2017 11:45 pm

Foreveryoung wrote:... Does anyone share what radiation therapy or chemo will be like? Will I be able to work? Do I need to take time away from work? How will I feel? How to best cope with the after effects?

Targeted rectal radiation - What to expect
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
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List of Forum Features
Colorectal Cancer Stages (TNM)

Chickspeed
Posts: 9
Joined: Sat Jun 17, 2017 5:16 am

Re: What to expect?

Postby Chickspeed » Tue Jul 11, 2017 6:57 am

as for radiation and chemo here is a extrapolation from my diary I have been keeping on my journey

I hope it helps

Feb 22nd 2017
Traveled to the Hospital to get ct scan of pelvic area to put 3 tiny tattoo marks in my waist area, one on my left hip, one on my right hip and one just above my groin.

March 6th 2017
I was booked to start chemoradiation for 5 consecutive weeks ending on April 7th. I had no idea what to expect but I have an intense curiosity and urge to understand whats going on around me. So I watched and followed and asked questions. Since most of what Dr Google could supply for information was and still is medieval in comparison (IMHO). And for a short foot note both oncologists suggested I stay away from google the information I will find is dated and not accurate.

So I completed 5 weeks of radiation and chemo coming away with a profound respect for the team charged with my care during treatment. Each treatment session took about 12 mins 10 mins to get you lined up with your tatoo markings by lazer and confirm positioning via mini CT scan then 2 mins to do the treatment. I would like to note that if my bladder was under or over full I had to deal with that before treatment would begin because they require your bladder to be as much out of the way as possible. The machine they used for treatment was a varian truebeam radiotherapy system. The first step is to get you on the machine and lined up to laser positions that match your tiny tatoos. Then out from the left and right side of the machine come 2 arms that rotate around you first clockwise then counter clockwise. Then after a pause of about 60 seconds you feel the table you are lying on move ever so slightly to line you up with the markings closely as possible. Then the 2 arms move out of he way and the round part of the machine which looks like an oversized camera lens off a cell phone (about 25 inches across) starts to make a strange buzzing noise, not real loud but you can hear it. The radiation machine makes 2 360 degree trips around your body one clockwise and one counter clockwise (about 1 mins each way) then your treatment is done for the day. You can see pics of the machine if you do a google search for varian truebeam radiotherapy machine.

|I had nearly no side effects to radiation or chemotherapy. Towards the last 10 treatments I had some diarrhea (imodium cleared it up) and some difficulty urinating and some burning when I did. This cleared up within 10 days of completion of treatment. I was expelling mucus in my stool after about 14 treatments but was told that was normal No other side effects at all. I was amazed considering what Dr Google spelled out for me.

I had a very very slight sun burn feeling about 3 days into treatment. I used glaxal base cream and it eliminated the feeling right away.

Chickspeed
Posts: 9
Joined: Sat Jun 17, 2017 5:16 am

Re: What to expect?

Postby Chickspeed » Tue Jul 11, 2017 7:46 am

To add just a little bit more to my post

my growth was 5-6 cm in size approximately 10 cm in from anal verge clinically a ct2 early t3 tumor.
at the beginning of chemoradiation. I cooled down for 10 weeks from treatment to surgery. Right after surgery
I had an update from the surgeon, he said when they went in at first they couldn't see the growth but did find it. so it shrunk from 5-6 cm to barely noticeable after therapy.

I was on radiation and xeloda (generic) on the days of treatment for 25 sessions.

Jacques
Posts: 401
Joined: Sun Dec 28, 2014 10:38 am

Re: What to expect?

Postby Jacques » Tue Jul 11, 2017 2:44 pm

Foreveryoung wrote:... @jacques - thank you for sharing the link. What is CEA testing?

CEA is one of the main tumor markers for colorectal cancer. It would be important to know if your CEA level is elevated right now, before any treatments or interventions are done. If your CEA is high (out of range) right now, it could mean that, for you, CEA is a very good predictor of cancer and that CEA tests could be used in the future to see how well your cancer is being controlled.

For example, you could do another CEA test after radiation, or after surgery, to see if the value changes.

There are many posts here on this forum about CEA, since it is the main tumor marker used in monitoring to detect if the cancer is coming back in the future.

Some CEA threads 2005 - 2015:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51836&p=404364#p404364
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
How to Select a Surgeon
List of Forum Features
Colorectal Cancer Stages (TNM)

Foreveryoung
Posts: 7
Joined: Thu Jun 22, 2017 9:39 am

Re: What to expect?

Postby Foreveryoung » Thu Jul 20, 2017 9:28 pm

Jacques wrote:
Foreveryoung wrote:... @jacques - thank you for sharing the link. What is CEA testing?

CEA is one of the main tumor markers for colorectal cancer. It would be important to know if your CEA level is elevated right now, before any treatments or interventions are done. If your CEA is high (out of range) right now, it could mean that, for you, CEA is a very good predictor of cancer and that CEA tests could be used in the future to see how well your cancer is being controlled.

For example, you could do another CEA test after radiation, or after surgery, to see if the value changes.

There are many posts here on this forum about CEA, since it is the main tumor marker used in monitoring to detect if the cancer is coming back in the future.

Some CEA threads 2005 - 2015:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51836&p=404364#p404364


Thanks Jacques and everyone else here.

I am going with Memorial Sloan for my treatment and just met with my oncologist. I'll be going on a four month treatment of FOLFOX followed by two months of radiation therapy. I'm going to opt for the pills and IV instead of the med port. Does anyone have any advice one way or another? I'm also eating a lot of "anti-cancer foods" (garlic, ginger, mung beans, shiitake mushrooms). My oncologist doesn't want me to take any supplements so I'll wait until after radiation to take curcumin supplements and serranol.
33 y/o M DX June 2017
RC lower


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