New here - rectal cancer, very nervous about radiation

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Caat55
Posts: 655
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

Green Tea
Posts: 175
Joined: Mon Oct 24, 2016 10:48 am

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: 91
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 years; Melbourne, Australia
10/2018 Dx: 3.5 cm rectal adenocarcinoma, 10 cm from verge. Well/mod diff (G1-2), T3bN1bM1a.
3 enlarged local lymph nodes and 4 liver lesions.
MSS, MMR-proficient, mutated in NRAS (G13R).
CEA: Oct-18 = 12; Nov-18 = 14, Mar-19 = 2.4
11/18 - 6 cycles neoadjuvant FOLFOX
12/18 - DVT, started clexane
3/19 - Liver resection, R0
4-5/19 - Long-course pelvic chemoradiation (45 Gy w/ Xeloda)
07/19 - Planned restaging scans and ULAR w temp ileo

Rock_Robster
Posts: 91
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 years; Melbourne, Australia
10/2018 Dx: 3.5 cm rectal adenocarcinoma, 10 cm from verge. Well/mod diff (G1-2), T3bN1bM1a.
3 enlarged local lymph nodes and 4 liver lesions.
MSS, MMR-proficient, mutated in NRAS (G13R).
CEA: Oct-18 = 12; Nov-18 = 14, Mar-19 = 2.4
11/18 - 6 cycles neoadjuvant FOLFOX
12/18 - DVT, started clexane
3/19 - Liver resection, R0
4-5/19 - Long-course pelvic chemoradiation (45 Gy w/ Xeloda)
07/19 - Planned restaging scans and ULAR w temp ileo

Green Tea
Posts: 175
Joined: Mon Oct 24, 2016 10:48 am

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: 1964
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: 236
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 hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

Green Tea
Posts: 175
Joined: Mon Oct 24, 2016 10:48 am

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.

Green Tea
Posts: 175
Joined: Mon Oct 24, 2016 10:48 am

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: 28
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


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