New here - rectal cancer, very nervous about radiation (update: tell me about xeloda!)

Please feel free to read, share your thoughts, your stories and connect with others!
Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: New here - rectal cancer, very nervous about radiation

Postby Caat55 » Thu May 16, 2019 11:15 am

The radiation shrunk my tumor almost completely, there was just scar tissue when they went in for surgery. My staging was considered high 2 by one, but another said 3. As I mentioned Miaderm and prescription Biafine were great. There is a study from Wash U Barnes Cancer Hospital published last October that found many creams safe to use during radiation. Published in JAMAICA Oncology.
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: New here - rectal cancer, very nervous about radiation

Postby Green Tea » Thu May 16, 2019 12:49 pm

Caat55 wrote:... As I mentioned Miaderm and prescription Biafine were great. There is a study from Wash U Barnes Cancer Hospital published last October that found many creams safe to use during radiation. Published in JAMAICA Oncology.

Thanks for the reference to the new study!

It’s safe to use skin creams before radiation therapy
https://medicine.wustl.edu/news/its-safe-to-use-skin-creams-before-radiation-therapy/

Rock_Robster
Posts: 280
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: New here - rectal cancer, very nervous about radiation

Postby Rock_Robster » Thu May 16, 2019 6:12 pm

Hi HappyNao, my case is a little different to yours (long-course radiation and male), however I just posted a brief recap of my experience on the large “Surviving radiation for rectal cancer” thread. Best wishes for the treatment - I’ve definitely heard short-course can be better in terms of tolerability (and if nothing else, it’s over faster!).
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

Rock_Robster
Posts: 280
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: New here - rectal cancer, very nervous about radiation

Postby Rock_Robster » Thu May 16, 2019 6:31 pm

Also just two things to look into for your background:

1. A recent study suggesting short-course radiation may actually lead to better outcomes and fewer side effects than long-course:

https://www.ascopost.com/issues/april-1 ... -outcomes/

And

2. Have a look into the PROSPECT trial underway (an article below to start from), looking at the potential for selective use of radiation in some rectal cancer cases:

https://www.ncbi.nlm.nih.gov/m/pubmed/24419115/

As a resectable stage IV patient with a locally advanced primary tumour (T3b) and initially tight margins, for me doing the radiation was an easy choice - but I can see how it may no be so straightforward for others.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: New here - rectal cancer, very nervous about radiation

Postby Green Tea » Thu May 16, 2019 10:57 pm

HappyNao wrote:... I've got one more appointment with the surgeon for tomorrow morning as well, to talk about the surgery in general because we haven't done that yet, but I'm also going to get her take on how the radiation affects surgical outcomes. ...

Good luck with your meeting with the surgeon today. Do you have all of your questions written down and prioritized? Are you bringing a notebook to write down all of the answers? Be sure to ask for explanations about her approach to Sphincter Sparing Operations (SSO), and Total Mesorectal Excisions (TME). Is the surgery going to be "laparoscopic", or is it going to be "open"? Also ask about possible collateral damage resulting from using a circular stapler to staple the anastomosis junction.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60707&p=480762#p480762

There are many, many questions that could be asked. Sometimes some of the most important ones are never asked because the patient doesn't yet know enough about rectal cancer surgery to ask the right kinds of questions. For example, member chrisca has posted these comments about questions he wished he had asked before his surgery:

Inferior mesenteric artery (IMA). Image of the inferior mesenteric artery

And there are many other cases like that one - - questions that patients, in retrospect, now wish they had asked in the beginning, before surgery ever took place.

NOTE:
One of the big problems that many newly diagnosed patients are faced with is inadequate basic bloodwork before the first major treatment (see link to rp1954's post below). In your case, the first major treatment will be your 5-day short-course radiation.

The question is: Did your doctors do all of the tests/biopsies/pathology analyses necessary for having a comprehensive baseline of bio-markers before the start of your first radiation treatment? If not, then when are they planning to do deal with the missing data items? What if they haven't yet tested your CEA tumor-marker level? Have you asked these questions of your doctor?

Here are some major problems that most colon cancer patients don't overcome and cost them dearly:
1. Day 1, day of diagnosis until first major treatment
A. Inadequate "basic bloodwork", add $75 - $300; I advocate even more bloodwork.
The most commonly missing initial "basic bloodwork": CA199, hsCRP, LDH, 25-hydroxy-vitamin D.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61741&p=487962#p487962

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: New here - rectal cancer, very nervous about radiation

Postby kellywin » Fri May 17, 2019 11:41 am

I think most people have said a lot of what I'd say to you, but I'll add my 2 cents anyway. Coming from someone who was stage IIIC in 2012. My personal feeling, I wanted to do whatever I had to do to be alive for my daughter. Statistics mean nothing, you don't know which group your going to be in, whatever needs to be done so that I can live, I had to do it.

With that said, are there side effects? Yes. Do they suck? Yes. But I am here and I don't regret it. Arm yourself with all the knowledge you need to prevent any possible side effects. Get an amazing gynecologist who gets it. Get the dialators, premarin, whatever. Something that I don't see mentioned and I suffer with is the damage done to the muscles in my hips/gluts - so get a physical therapist and get some really good stretching - I didn't know this and mine are shot.

With surgery, find the best colorectal surgeon you can, if the tumor is high enough you very well might not need a temp ileo - mine wasn't too high and I didn't need one.

This forum is invaluable with the knowledge everyone here provides. So many people helped me when I came here and that's why I like to come by from time to time to see how I can repay that.

I know how scary this is. Thinking positive thoughts for you.
Kelly, mom 14 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

NHMike
Posts: 2180
Joined: Fri Jul 21, 2017 3:43 am

Re: New here - rectal cancer, very nervous about radiation

Postby NHMike » Fri May 17, 2019 11:46 am

kellywin wrote:I think most people have said a lot of what I'd say to you, but I'll add my 2 cents anyway. Coming from someone who was stage IIIC in 2012. My personal feeling, I wanted to do whatever I had to do to be alive for my daughter. Statistics mean nothing, you don't know which group your going to be in, whatever needs to be done so that I can live, I had to do it.


The treatment decisions on more preventive vs fewer side-effects are commonly discussed here. Do you go with 6, 8, 10 or 12 cycles of adjuvant chemo? Do you go with 5FU or 5FU+Oxaliplatin? Some Stage 2s have the option for watch and wait. Some people that go with less treatment wind up getting a recurrence and then second-guessing their original decision. Those that go with more treatment can at least say that they did everything that they could at the time.

I went with more treatment but it is a hard decision. I have side-effects which very well may be permanent and they wouldn't have been there with less treatment.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

boxhill
Posts: 335
Joined: Fri Apr 06, 2018 11:40 am

Re: New here - rectal cancer, very nervous about radiation

Postby boxhill » Fri May 24, 2019 12:50 pm

HappyNao, I've been thinking of you and wondering what you decided to do.

Hope all is going well.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: New here - rectal cancer, very nervous about radiation

Postby Green Tea » Mon Jun 03, 2019 1:30 am

HappyNao wrote:...Recommended treatment is short course radiation, which is currently scheduled to start on May 20, followed by surgery on June 6 which will result in a temporary ileostomy as well...

You must be finished with your short course radiation by now. How did it go? Any continuing side effects?

Are you still scheduled for surgery this week? Let us know how things are going.

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: New here - rectal cancer, very nervous about radiation

Postby Green Tea » Thu Jun 06, 2019 7:40 am

HappyNao - Good luck on your June 6 surgery.

Deep
Posts: 32
Joined: Thu Nov 01, 2018 6:10 pm

Re: New here - rectal cancer, very nervous about radiation

Postby Deep » Mon Jun 10, 2019 8:03 am

HappyNao wrote:Hi everyone, I was hoping to introduce myself and get some feedback (or maybe just encouragement) about my situation.

I'm a 38 year old stay at home mom of a 3 and 8 year old, my husband works 12 hour days, 5 days a week.

I started noticing blood in my poo probably 6 months ago? Figured it wasn't serious, decided to ask my doctor about it at my annual physical if it was still an issue. Of course it was still happening, so she sent me for a colonoscopy, which thankfully I managed to schedule for only about a week later. Woke up from the colonoscopy to the news that they found an 8-10 cm mass, plus a couple of polyps. Referred me to a colorectal surgeon who said it was cancer (he didn't say what kind, at that point I was assuming it was in my colon) and he scheduled me for an operation to remove it. All of my friends were telling me to get a second opinion, so I saw a colorectal surgeon in Boston who said that it was rectal cancer, and that she wanted me to talk to an oncologist before we discussed surgery.

They did CT scans and a pelvic MRI, results from those are that it's stage IIa, T3N0M0. It's pretty high up in the rectum, I don't know exactly how far, but the surgeon could barely touch it during one of the most aggressive rectal exams I've ever had (and I've had more than a few in the past month...)

Recommended treatment is short course radiation, which is currently scheduled to start on May 20, followed by surgery on June 6 which will result in a temporary ileostomy as well.

I am terrified of the radiation, not so much the side effects during, but I'm terribly afraid that there's going to be all kinds of permanent damage and that my quality of life will suffer... The news about menopause was a shock, too, that I'm having a hard time processing. Also lots of worries about the ileostomy and subsequent reversal, that it will leave me with bowel issues forever.

Any thoughts and encouragement are much appreciated, thank you.


I made it through radiation and chemo with almost no side effects. Just make sure you go in there with a full bladder each time and everything should work out, hopefully like it did for me.
11/29/18 Diagnosed T3N1 Rectal Cancer (Age 39, Male, no family history)
01/02/19--02/7/19--- 25 rounds radiation/chemo (Capecitabine 2000 mg)
04/15/19 Surgery, temp ileostomy
7/8/19 Chemo (8 Rounds) Folfox

HappyNao
Posts: 12
Joined: Mon Apr 15, 2019 2:30 am

Re: New here - rectal cancer, very nervous about radiation

Postby HappyNao » Tue Jun 18, 2019 1:15 pm

Thanks for checking back in, GreenTea. I had a rough couple of weeks and needed to take a break from the internet.

I did ultimately decide to do the radiation. I read the MRI report, and had some really in depth conversations with the surgeon and the radiation oncologist, and the Friday before it was due to start I finally had a really strong feeling that it was the right thing to do.

Radiation week itself wasn't bad at all, I was a little tired and out of it, but part of that was from driving to Boston every day (an hour with no traffic, 2+ if during rush hour.) The week after radiation I started going steadily downhill with bathroom issues, they think the radiation caused some swelling and I was very backed up. It never got bad enough that I was completely blocked, but it was excruciatingly painful and I didn't eat anything for about 3 days leading up to the surgery. Went in to the emergency room twice but there wasn't anything they could do other than send me home with stool softeners and laxatives and tell me it would be better after surgery...

Surgery went well. Pathology came back this morning, tumor was confirmed to be T3, and no evidence of disease in lymph nodes (YAY!) I forgot to ask how many she removed, but it was just a quick phone call this morning, I have a follow-up up appointment with her on Friday so I'll know more then. Don't know if they're going to recommend any adjuvant chemo yet or not, that appointment is currently scheduled for next week, but I'm trying to get it moved to Friday also so my husband only has to take one day off from work.

Recovery has been up and down. This is the first time in my life I've had surgery, so ouch. Last week I was a wreck emotionally, and exhausted from the not eating and barely sleeping. My sleep is almost back to normal, and all of the bathroom issues before surgery made the ileostomy seem like a good idea so there's that, although I was surprised how much it bothered me the first week - I'm coming to terms with it now, managed to change the bag by myself yesterday and that helped.

My kids are doing amazing with everything, although the three year old is asking every day when I'll be able to pick her up again. She's had a fever for the last three days so no daycare, but my dad is staying with us this week so my husband can work. My eight year old and I have had a lot of very detailed philosophical conversations about cancer and how he wishes it weren't a thing.

Just hanging in there. Thanks to everyone for all of the support and insight.
38 year old stay at home mom to 8 and 3 year old

Stage 2a rectal cancer diagnosed April 2019
Short course radiation May 20-24
Surgery June 6 - LAR with temp ileo
Starting xeloda July 11 for 6 months

Pathology - clear margins, t3n0m0, grade 2

Punky44
Posts: 348
Joined: Mon Oct 01, 2018 4:29 pm

Re: New here - rectal cancer, very nervous about radiation

Postby Punky44 » Tue Jun 18, 2019 2:37 pm

Just seeing your post for the first time but glad your surgery and radiation went well and you’ll be in my prayers!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

NHMike
Posts: 2180
Joined: Fri Jul 21, 2017 3:43 am

Re: New here - rectal cancer, very nervous about radiation

Postby NHMike » Tue Jun 18, 2019 3:45 pm

Thanks for the report on how things went. It sounds like you're taking the challenges in stride.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Caat55
Posts: 671
Joined: Sat Dec 23, 2017 6:01 pm

Re: New here - rectal cancer, very nervous about radiation

Postby Caat55 » Wed Jun 19, 2019 5:58 pm

You are doing great. Yes, in some ways the ileo is a good but it does wear on you. It gets easier, more predictable overtime. When you do find out about adjunct chemo? Ask about a port. With small children and lifting I could not have managed if it had been in my arms.
Your attitude and your family will keep you going.
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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: MeAndMine and 36 guests