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

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

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

Postby HappyNao » Mon May 13, 2019 11:23 am

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.
Last edited by HappyNao on Fri Jun 21, 2019 12:14 pm, edited 1 time in total.
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

Gravelyguy
Posts: 199
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Mon May 13, 2019 2:22 pm

Hi,

Sorry that you are here but this is a great place to get info. If you look at my signature you can see that I had short course radiation followed a few days later by surgery. We all react differently to LAR surgery and radiation. I am coming up on a year since reversal and am at a place that if it doesn't improve anymore, my quality of life is most days just fine. This with all of my rectum removed.

I wish I knew why I was doing ok and others not so much. My theories include: short course vs. long course radiation, A really good surgeon, health pre-cancer diagnosis, lots of people praying for me, and luck.

I currently take a really good probiotic at 3 times the regular dosage and a supplement that contains magnesium. I also take a good multi-vitamin and a supplement that is supposed to reduce inflammation. The early days post reversal were tough and I think they are for most people. Today, 11 months out, I usually go in the morning and maybe a few times in the evening. but fewer and fewer times in the evening. So, pretty manageable. I know enough to know that this won't help everyone but for me it does.

With your situation of having a higher tumor, your chances are better than mine in having fewer side effects. Just want you to know that there are people out there who have gone through all you are going to go through and it turned out ok.

Hang in there!

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

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

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

Postby Caat55 » Mon May 13, 2019 2:45 pm

I am sorry you find yourself here. The whole thing is a shock and menopause on top of it is just not cool. As you can see from my signature, I am older but with same staging as you.
I wasn't told by my doctor that my periods would stop but by the radiation tech when I came in on my period, he said," this will be your last." I was shocked and asked the radiation oncologist about it and she confirmed what he had said. There is alot they don't tell you. They always recommended aquaphor but there are several creams you can use during radiation to protect your skin, Miaderm is an over the counter one I found, and once I mentioned it to them that I had purchased it, they at appointment, they offered me a free tube and said it was great. There was also BIOFINE, a prescription thing that again wasn't offered to me, "many insurances wouldn't pay for it" but mine did. Both of these protect sensitive skin during radiation. I am very fair skinned and that could be why I was so badly burned.
I just completed my reversal, 3 weeks out. I am managing fine, I watch what I eat and know where restrooms are when I go out. The ileostomy didn't interfere with my job, travel, etc.
This is the place to come for honest answers.
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

Cmarie03
Posts: 29
Joined: Sat Feb 16, 2019 6:35 pm

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

Postby Cmarie03 » Mon May 13, 2019 8:00 pm

I am sorry you have to go through this. I am a stay at home mom of a 3yo and 10mo. I was diagnosed stage 3 rectal cancer. Read the thread on here about vaginal stenosis. Search for it - good info and these women helped me a lot. Get a good set of dialators or stay sexually active (obv post surgery you will use dialators when you are recovered and able to). I am a few weeks out from radiation - radiation was tough for me (nausea and lost weight) but everyone is different!!

I went to GYN today and got the estrogen cream I heard about from vaginal stenosis thread on this. It is true not all the docs will tell you about side effects but ask!!! And find a good gyn to help you deal with menopause. I had my last period first week of radiation and haven’t had one since. My dr ordered bloodwork today to see where my hormone levels are at.

Sorry if this is rambly. I feel your pain!! Hang in there.
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

NHMike
Posts: 2212
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue May 14, 2019 7:48 am

I had the full 28-day course of radiation and neo-adjuvant chemo before surgery and didn't have any permanent issues with the radiation but results may be all over the place on that. They will recommend drinking a lot of water before the radiation and that's definitely important as the water absorbs radiation.

The ileostomy requires some training and this should be provided at the hospital but I found that I still had difficulties. They give you a pouching solution but it may not be the best one and it can take some trial and error to find the best solution (there are several different vendors and each vendor has multiple products). I found that it was easier to do the bag changes with help. I think that I only changed it once by myself.

I recommend building a small emergency bag with supplies in case you need to change things on the road. Coloplast sent me a small bag in a sample kit and I used that to hold supplies for an emergency change.

It is good news that the tumor is higher. The lower the tumor, the worse the odds of being able to control things after the reversal. I do have difficulties with LARS (Low Anterior Resection Syndrome) and I'm at Dana Farber in Boston right now waiting to see my surgeon about LARS and obstructions due to scar tissue at the ileostomy site.

There can be difficulties with this stuff though you're stage II which is earlier than many of us. We can answer questions, especially the type where you ask what happens next.
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

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

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

Postby HappyNao » Tue May 14, 2019 1:39 pm

NHMike wrote:I had the full 28-day course of radiation and neo-adjuvant chemo before surgery and didn't have any permanent issues with the radiation but results may be all over the place on that. They will recommend drinking a lot of water before the radiation and that's definitely important as the water absorbs radiation.

The ileostomy requires some training and this should be provided at the hospital but I found that I still had difficulties. They give you a pouching solution but it may not be the best one and it can take some trial and error to find the best solution (there are several different vendors and each vendor has multiple products). I found that it was easier to do the bag changes with help. I think that I only changed it once by myself.

I recommend building a small emergency bag with supplies in case you need to change things on the road. Coloplast sent me a small bag in a sample kit and I used that to hold supplies for an emergency change.

It is good news that the tumor is higher. The lower the tumor, the worse the odds of being able to control things after the reversal. I do have difficulties with LARS (Low Anterior Resection Syndrome) and I'm at Dana Farber in Boston right now waiting to see my surgeon about LARS and obstructions due to scar tissue at the ileostomy site.

There can be difficulties with this stuff though you're stage II which is earlier than many of us. We can answer questions, especially the type where you ask what happens next.


Thank you! I'm going to Dana Farber too, and I live in southern NH! Sorry we have to meet under these circumstances, but I'm grateful for the advice.
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

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

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

Postby HappyNao » Tue May 14, 2019 1:43 pm

Cmarie03 wrote:I am sorry you have to go through this. I am a stay at home mom of a 3yo and 10mo. I was diagnosed stage 3 rectal cancer. Read the thread on here about vaginal stenosis. Search for it - good info and these women helped me a lot. Get a good set of dialators or stay sexually active (obv post surgery you will use dialators when you are recovered and able to). I am a few weeks out from radiation - radiation was tough for me (nausea and lost weight) but everyone is different!!

I went to GYN today and got the estrogen cream I heard about from vaginal stenosis thread on this. It is true not all the docs will tell you about side effects but ask!!! And find a good gyn to help you deal with menopause. I had my last period first week of radiation and haven’t had one since. My dr ordered bloodwork today to see where my hormone levels are at.

Sorry if this is rambly. I feel your pain!! Hang in there.


OMG with a 10 month old, I can't imagine. How did you do during your treatment with taking care of the kids? I'm not too worried, because my oldest is in school and my youngest had been going to daycare two days a week, and they were willing to let her come more if I need to rest, but it's definitely been a concern. Thanks for the info about the vaginal stenosis thread, it was great.
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

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

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

Postby Surroundedbylove » Tue May 14, 2019 6:32 pm

I’m sorry that you are having to go through this but glad you found this board - it was a great support to me during my cancer treatment journey. As you can see from my signature I am an almost 11 year survivor of stage 3 rectal cancer. I was told all of the things mentioned in the posts above but not necessarily in a way that I could absorb the information in the fog of a cancer diagnosis.

A couple of important things I’ve learned since that time - radiation makes the rectal surgery safer (in terms of risk of spreading cancer during surgery) because it shrinks the tumor and the area in which they are operating is small, tight and full of blood vessels. It also helps preserve function after surgery because when the tumor shrinks they can minimize how much healthy tissue is removed in the “margins”.

The other thing that has happened over the last 20 years is how rectal cancer is treated. 20 to 10 years ago and then 10 years ago until now. Over that time there was a huge improvement in survival rates for stage 3 patients and they think that huge improvement could be related to the radiation intervention. As such, they’ve been doing more radiation for stage 2 patients than perhaps was previously done (it had been done - just not always). As such, while all decisions regarding treatment choices are yours and yours alone, I fall in the camp of “in favor of recommended radiation” but then with all the support you can find here.

Some important things - get a set of silicone, vaginal dilators and use them daily during and after radiation. There is lots of info on here about them. They are far more comfortable than the rigid ones the radiation oncologists give you.

Harvest eggs if that is important to you. It is hard coming to grips with an immediate ovarian menopause when not expecting it and harvesting eggs may give you some options.

Hang in there and I wish you the best.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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 » Wed May 15, 2019 12:38 pm

HappyNao wrote:.... Any thoughts and encouragement are much appreciated, thank you.

Two thoughts:

  1. You have been assigned to a 5-day short course of radiation therapy. According to NCCN, your daily dose for each of the 5 days will be 25 Gy. This dose level is two and a half times that of the daily dose level given to patients who are assigned to the 25-day long course of radiation therapy. Thus, you might expect to have greater immediate, daily, short-term radiation effects than those patients assigned to the 25-day long course of radiation. Keep this in mind when you are reading about radiation experiences of patients who have been on the long course of therapy. Your experiences might be different because their daily dose is only 40% of what you will be receiving .
    "Short-course radiation therapy (25 Gy in 5 fractions) with surgery within 1 to 2 weeks of completion of therapy can also be considered for patients with ultrasound or pelvic MRI stage T3 rectal cancer. ...
    Reference https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf REC-D, page 32

  2. You have not reported your MSI/MMR status (Microsatellite Instability). This information is needed before they can decide which kind of chemotherapy (if any) to give you after surgery. In the USA, MSI testing has been required of all rectal cancer patients since January 1, 2018.
    Microsatellite Instability (MSI) or Mismatch Repair (MMR) Testing
    • Universal MMR* or MSI* testing is recommended in all patients with a personal history of colon or rectal cancer...
    Stage II MSI-H patients may have a good prognosis and do not benefit from 5-FU adjuvant therapy.
    • MMR or MSI testing should be performed only in CLIA-approved laboratory...
    Reference https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf REC-A, page 25

    If you haven't yet been tested for MSI status, then you can ask your oncologist about the requirements for scheduling a test.

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

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

Postby HappyNao » Wed May 15, 2019 1:55 pm

Thanks Green Tea.

Do you know anything about the long term side effects of the short course compare to those of the long course? Something to ask the radiation oncologist I suppose. Honestly those are what I'm most worried about, I can deal with a lot if I know that it will eventually end.

I don't know about MSI status, I'll ask. The oncologist said that there's a chance he won't recommend chemo but that we won't know until they analyze the tumor, so I suspect he's on top of it, but now I know what to be asking so that helps a lot, thank you.
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

boxhill
Posts: 337
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Wed May 15, 2019 4:09 pm

I have colon, not rectal, cancer, but if I were a sexually active young woman of your age with stage 2 I would think long and hard before consenting to radiation. Frankly, I also wouldn't pay much attention to the experiences of male patients, who are trying to be helpful but simpy don't have the body parts. Women seem to report FAR more long term and unpleasant effects of radiation, including vaginal stenosis, vaginal wall thinning and tearing, and menopause, none of which apply to men, obviously.

Do you really need radiation before surgery? What is the point of it? Is it to shrink the tumor to theoretically preserve more of your rectum? How much can it realistically save? How much of a difference can that make? Is it to theoretically avoid having a permanent colostomy? If so, what are the realistic chances that you can do that with and without the radiation?

I don't want to make you feel worse, but I have over the past year increasingly heard from SO many women who were NEVER fully informed about the longer-term implications of radiation by doctors, to the point in my opinion of virtual malpractice, since in doing so they completely failed to inform women of steps they could take before and during treatment to try to preserve their fertility and their sexual function. It is clear that many if not most of them do not want women to be involved in making the decision. It is your body and your life. If I were you, I would ask a lot of hard questions and demand actual clinical stats based on studies.

Best of luck to you.
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

NHMike
Posts: 2212
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 15, 2019 5:23 pm

I've noticed far more problems reported by women as well. But I know other men that reported more problems than I had. To my knowledge I don't have any permanent effects from the radiation. I think that doing the water contributed to that along with holding absolutely still. But that's the limit to what you can do to prevent damage to other things. Women do have more parts that can get damaged.
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

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

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

Postby HappyNao » Thu May 16, 2019 8:46 am

Oh, boxhill, you've hit the nail on the head. I have been agonizing about this decision for the past two weeks, and every time I think I've come to terms with it something happens and I start second guessing again.

My understanding is that the goal in my particular case is to reduce the chance of local recurrence, and that's all. There is a whole bunch of playing with statistics involved, but what it boils down to is a 5-7% lower incidence of local recurrence with the radiation, depending on which study you cite. So their logic is that recurrence is very bad, and they want to do everything possible to reduce risk. The also feel that in my case, because the tumor is quite large, that they would end up recommending radiation after surgery anyway (again to reduce risk of recurrence, although I haven't asked if the statistics are different in this case), and outcomes are generally better when it's done before surgery.

I am not convinced that 5-7% is worth premature menopause and the possible damage to my vagina. There is also a possibility that if I decline the radiation I will avoid the ileostomy altogether, the surgeon says it depends on how the surgery goes, she may feel that everything needs a couple of weeks to heal without waste passing through and I'll have it anyway.

I did have to push in the beginning (they weren't going to give me a gyn appointment until like a month AFTER my surgery!) but after I started pushing everyone started backing off and saying that while they do recommend I do it, it's my decision (and the radiation oncologist said this on the phone with me last night) that the 5-7% benefit is small enough that they won't object if I decline. UGH.

I had a moment of clarity last weekend, and realized that if I didn't have small children, I would have declined already. But I'm not sure I can throw away any percentage points, however small, because I damn well intend to be here to help them grow up.

As of right now the plan stands, and I have the last set up appointment tomorrow morning when I will get the schedule for next week. 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. She's about my age, and has kids about my kids' age too, and she also said yesterday on the phone that she wasn't sure what she'd do in my position... This is so, so hard.

I did order the silicone dilators that were recommended on the vaginal stenosis thread, I've already talked to the gyn about hormone replacement, and I'm taking full advantage of the integrative therapies that they offer, so I have a few acupuncture appointments next week to hopefully help mitigate side effects as well, plan to drink lots of water, etc. etc. but as I said I'm still second guessing.
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

NHMike
Posts: 2212
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu May 16, 2019 9:01 am

HappyNao wrote:Oh, boxhill, you've hit the nail on the head. I have been agonizing about this decision for the past two weeks, and every time I think I've come to terms with it something happens and I start second guessing again.

My understanding is that the goal in my particular case is to reduce the chance of local recurrence, and that's all. There is a whole bunch of playing with statistics involved, but what it boils down to is a 5-7% lower incidence of local recurrence with the radiation, depending on which study you cite. So their logic is that recurrence is very bad, and they want to do everything possible to reduce risk. The also feel that in my case, because the tumor is quite large, that they would end up recommending radiation after surgery anyway (again to reduce risk of recurrence, although I haven't asked if the statistics are different in this case), and outcomes are generally better when it's done before surgery.


I had the long-form (28 days), and the main benefit for me from the radiation was the tumor shrinkage. My tumor was over 100 cubic inches and it shrank to under 10 cubic inches. I assume that this greatly improved the odds on saving function and made the overall surgery easier. In some cases that I've heard of, the radiation shrinks the tumor to the point where it is very difficult to find. I do not recall if a Complete Pathological Response is possible with just radiation.

I recall when I first started that I wish that a surgeon would just cut the thing out of me but none would operate without chemo/radiation first and the reason is that the radiation can greatly shrink the tumor. I actually felt great after the radiation side-effects wore off. But there was still a tumor there so I did the surgery to get rid of it. We stage 3 folks also have to make decisions on Adjuvant Chemo - number of cycles, strength, which drugs. It's a tough decision as you want to minimize the chance of recurrence weighed against the risks of treatment and quality of life. I have some side-effects which look to be permanent right now.

The decision is much harder if you're younger.
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

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 9:32 am

HappyNao wrote:... Do you know anything about the long term side effects of the short course compare to those of the long course? Something to ask the radiation oncologist I suppose...

No, I don't have any experience with short course radiation. However, I would encourage you to prioritize all of your questions and then ask the radiation oncologist.

I had long course chemo/radiation after surgery and while I was on temporary ileostomy, and I asked lots of pointed questions. The radiation oncologist even showed me the console of the linear accelerator with my scan profile loaded. It showed which organs would be irradiated and which zones would be blocked from radiation. Very interesting.

You could ask questions about which creams or ointments to use and which ones not to use, for example. There is something that you can do to prevent really bad radiation burns to the external skin, for example, and that is to avoid any kind of cream that contains Zinc Oxide. Be sure to read the label before you buy any kind of product like adult diaper rash ointment. This is important. Also, avoid eating or drinking anything spicy or acidic in nature because this is likely to cause skin problems, too. Ask your oncologist about this so that you can be better prepared to endure the treatment sessions.

You can also ask about the precise location of your tumor: How far is it from the anal verge, and on which side of the rectum is it located: ventral(front), dorsal(back), left side or right side. Ask how close it is to other organs, because this is where the radiation collateral damage is likely to occur. You can always ask. They can always say they don't know, but there's always a chance that you will get some good information if you just ask.

Some links:
https://www.webmd.com/colorectal-cancer/news/20101102/short-course-of-radiation-fights-rectal-cancer

Also:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59776&p=475246#p475246


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