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Newly diagnosed rectal cx

Denise66
Posts: 74
Joined: Aug 2018

I am posting for a friend who was just diagnosed on Friday with rectal cancer. she was diagnosed during a colonoscopy. She had a ct scan which was unremarkable. The doctor is advising her to have radiation first to shine the cancer than surgery.  I would like to know questions for the oncologist. For example are there any blood trst tumor markers she should get before treatment starts to obtain a baseline?  How anout the markup of the tumor?  What mutations makeup Colon cancer?  also for those who had radiation and then surgery, what do you wish you would have known?  Were you able to work during rads?  Anything help with the side effects of radiation?  Do you wish you had someone drive you to and from radiation?  

thank you so very much for any information. 

 

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

Welcome to the forum. 

What a lovely friend, to reach out for help.

I will answer a few of your questions, to the best of my ability.  Other questions I will leave to those who are more knowledgeable. 

One of the blood tests we all get is a CEA test - Carcinoembryonic antigen test.  While it is a reliable marker for some, for others, not so much or not at all.  

I had radiation after surgery, due to the size of my tumour, so I'll leave that quesiton to others. 

Radiation itself was not a walk in the park for me.  For others, they breezed through it. Side effects vary considerably. I seemed to get every horrific side effect known to man. It was a very trying time.

I defintiely could not have driven myslef anywhere, let alone to radiation.   Others here, probably did just fine. 

When the patient goes into radiation, the area must be clean with absolutely no creams or unctions of any kind on the skin, as they can mess with the radiation beams. 

Radiation burns seem to be a side effect which most suffer from.   Mine got really bad and then worse.  There are several OTC creams or gels that help, and others that the Radiation Oncologist can prescribe.   I found that a pure Aloe worked well for me. Not that it stopped the burn, but took the sting out of it. When it got to the point of weeping, my GP suggested non-alcohol Witch Hazel, which worked like a dream.

Depend underwear saved my bacon on many occasions, as radiation caused uncontrolable diarrhea - no matter how many thousands of times I have typed that word, I will NEVER learn to spell it.  

A sitz bath and/or a bidet are life-savers or butt savers.  Post treatment, I could not live without my bidet - I found a relativly cheap one on Amazon. 

OK, enough from me.  Others will mosey along across the days. 

I wish your friend well, and look forward to seeing you here again. 

Tru

 

 

 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

All of the above questions you asked and get a 2nd opinion before anything to make sure she is on the right track.  If opinions vary, weigh it.

Expanded bloodwork (more than min SOC) is very important in my opinion.  Back read bloodwork posts to see what all to ask for nicely or firmly :)

pbiflyer's picture
pbiflyer
Posts: 6
Joined: Jan 2021

I would agree with the second opinion. There were very differvent opinions on the path and even the diagnosis.

My primary doctor did the genetic testing but I was told that it was for subsequent treatment, not for primary treatment. So, not a worry now.

 

NYVET's picture
NYVET
Posts: 9
Joined: Apr 2021

 

I am being treated at MSKCC for stage 3 rectal cancer, my cancer is probably a little more advanced than what your friend has. I did 5 months of chemo and then radiation, I'm now waiting for surgery.

Initially I thought they would cut first and then do chemo and radiation but the Dr's explained to me they have a better outcome doing chemo/radiation first-it kills what cells might have escaped and stops the tumor growth.

I was told that after chemo I would either have one radiation session each week for 5 weeks or 5 treatments in one week depending on how my tumor responded. I ended up with the 5 treatments in one week beginning the end of this January.

The treatments themselves were not bad. They warned of radiation burns which I never got. They also warned about all of the other radiation side effects, increased urgency for bowel movements, increased diarrhea, incontinence, stool leakage, and having the urge to defecate even though you were empty. My understanding is the radiation also damages some of the other muscles in the area, they are injured and spasming causing these side effects. The radiation oncologist said they usually happen 2-4 weeks after your last treatment and last anywhere from 2-4 weeks. 

Not me, I got some of them the day after my treatment ended and they lasted about 2 weeks. The urgency was horrible, the moment you feel like you have to go you need to be heading to the bathroom. You will not be able to hold it.

Also feeling you had to go when you do not was horrible, sitting on the toilet straining like you are constipated but there's nothing there. In many aspects radiation side effects were worse than the chemo side effects.

I could work during treatments, and I drove myself to and from the treatments, driving in NYC. But working during the side effects is a different story. In this covid-work at home environment, yes, I could work. But I doubt that I could work if I needed to go into the office. If you need to go into the office, you'll probably need to use depends or similar products. You will need unfettered access to a bathroom.

I was prescribed hyoscyamine which helped a lot. My side effects were much worse in the morning, I suspect the drug needed to build in my system each day as my symptoms were much better the days when I woke in the middle of the night before and took the drug. But that is my lay opinion.

I also had some hair loss, fortunately it was below the belt. I did have some thinning of the hair on my head but that was probably due to chemo, the radiation oncologist assured me the targeted radiation they used would not affect the hair on my head.

Just a heads up, you will be more susceptible to get blood clots. They an indirect cancer side effect and have nothing to do with chemo or radiation. I’ve always had great cholesterol and similar blood numbers and was never at risk for clots. Suddenly I got a blood clot out of the blue. The hematologist explained that the tumor makes us more susceptible for clots. So, pay attention to your body. It felt like a horrible leg cramp/charley horse.

Best of luck.

G

 

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Sorry to hear about your friend, and it sounds like they have a great friend in you to search out answers for them.  Radiation is pretty much doable for some to drive back and forth but it is cummulative and it will burn terribly by the time your friend is done.  Make sure to keep some type of barrier on the anus as this area will be targeted and will get very sensitive to bowel movemens.  Getting a sitz bath will help tremendously.

CEA is a cancer marker but it is not always beneficial for everyone.  Mine was normal all the way through so some doctors don't rely on that, but it's a good place to start if the marker is high.

You can read my "About Me" page to get a brief history of what my journey was and that might give your friend a little bit more to go on and what to expect.

Your friend is lucky to have you.  Come back here with any other questions you might have. 

Wishing her well.

Kim

RudiTuesday
Posts: 14
Joined: Jan 2021

For me, the biggest radiation side effect was fatigue. I  was also on  oral chemotherapy pills while receiving radiation treatment so that may have contributed to the fatigue. I  was able to drive myself to and from my treatment. My appointments were always first thing in the morning, I would drive to the hospital, drive back home, and go back to bed. I did not work during radiation treatment. My treatments were 5 days a week for 5 weeks. I did not have any burns. Toward the end of the 5 weeks, the skin on the bottom of my feet began to peel. I did have hair loss, but that might have been from the chemo. I did not have diarrhea or nausea. Given a choice, I would choose radiation treatment over chemotherapy. Of course, everyone's experience is different. I hope all goes well. 

Denise66
Posts: 74
Joined: Aug 2018

Thank you so very much everyone.  She has an appointment with a hematologist oncologist in Athens GA this week. Is this typical to be seen by a hematologist oncologist?  Do they over see her radiation from a radiation oncologist and then direct her to a surgeon?  

Have your doctors told you what caused up your cancer?  should she ask about genetic mutations?  Also, I assume rectal cancer is graded 1 through 3? Also, What Would you like to have known when you were first diagnosed? 

 

Thank you so very much. 

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

My Oncologist is a Hematologist specialist.  Love that man! 

Tru

darcher's picture
darcher
Posts: 297
Joined: Jun 2017

Sorry for you having to be here. When I had radiation it was in conjunction with chemo. I had 28 sessions on a near daily basis one after the other. Everyone is different as far as how it affects them. There will likely be radiation burns that fade after a while. I still have some of the tell tale red band even after 3 years. I had other things going on that likely impacted it so my situation was "different".

I'd recommend drinking cranberry juice because the radiation will affect the bladder and cause burning while peeing. For a guy, it can also lead to functional sterility (retrograde ejaculation) and there may be something similar in women with the ovaries in close proximity. It might be a good idea to go with her to begin with to see how she copes with it. She may walk out feeling nothing or be doubled over in pain. I've seen both extremes so it's a roll of the dice.

As to what I wish I knew before? I wish I were told about the cranberry juice to begin with. Not after I felt like it was burning off when I did #1 and scared out of my mind not knowing what was wrong. I'd ask them to run a DNA test for Lynch syndrome. That's the genetic marker for susceptibility to colon cancer. If it's not that then it's likely environmental. That would require going back decades looking for the culprit. Mine was and it was from where I grew up and was gone from for 40 years. Yeah, it took that long to to materialize. They will do a biopsy so the answer as to which variant it is should be known fairly soon.

I tried working for a while but with everything else going on it became impossible. There was much more than just colon cancer I had to contend with. Again, my situation was unique but if it were just radiation, I probably would have been ok to keep working through it. For me, the radiation was the most minor part of the entire ordeal.

LSU2001
Posts: 28
Joined: Dec 2017

Good Morning,

Like others have said before me, I am sorry that you are here looking for answers, but since you are here, you couldn't find a better place for some answers. 

I was diagnosed with Stage IV (metastatic) rectal cancer on April 4, 2016.  I was in a good deal of pain at the time due to the rectal tumor growing through the colon wall and pressing on nerves that created a pain very similar to lower back and hip pain.  In fact, I thought for months that my pain was due to arthritis from a disc removal and spinal fusion in 2010.  Come to find out it was cancer causing the pain.   My oncologist decided that I needed palliative radiation treatment prior to any other treatments.  I had 28 radiation sessions along with wearing a 5FU pump 5 days a week.  So I would get the chemo pump on Monday, then get radiation treatments Monday through Friday and the pump removed Friday after my radiation treatment.  

Within 2 weeks the buttock and hip pain was gone and I was able to get off of the Morphine the doc had prescribed.  My experience with Chemo-Radiation treatment was similar to what others have said.  First, they had to measure everything and place tiny tattoo dots on my hips and pubic bone area.  These tattoos were necessary to align and aim the radiation beam to help prevent damage to other tissues and organs in the area.  I had very little surface irritation from the radiation but internally it was a different story.  about 3 weeks into treatment, I began to have a ton of pain around the anal area due to radiation burns and irritation.  I purchased a cheap cold water bidet and a squatty potty stand so I could get my feet up higher while sitting on the toilet.  This helped me defecate easier with less straining and the bidet cleaned everything up without rubbing toilet paper over the already inflamed anal tissue.  It also really aggravated the already existing hemorrhoids so that area was very painful.  I tried everything I could find to help relieve the pain and the only thing I found that worked was taking some of the lidocaine cream (prescribed to numb my port) and some cortisone cream and mixing the two together and applying to my anal area.  The lidocaine cream numbed the tissues and the cortisone helped reduce the irritation and inflammation.  I also found that sitting in a warm to hot bath several times per day helped as well.  

By the end of the six-week treatment period I was dealing with a ton of pain and using the creams and warm baths helped me deal with it.  It took about two weeks after treatment was finished for the area to heal up and the pain to go away.  However, I was left with some fairly significant radiation damage to my rectum, and about a year or so after the treatment ended I began to have rectal spasms and this caused/causes severe pain internally.  Doctors prescribed Fentanyl patches to wear 24/7 and I ended up around 175 micrograms per hour along with oxycodone for breakthrough pain.  This didn't even touch the pain on bad days so I have been suffering this pain for several years now.  Finally, I decided to try our medical marijuana program here in Louisiana.  I take 30 milligrams at night before bed and the number of painful days has really been reduced.  The medical pot has reduced the pain to such an extent that me and my oncologist are trying to wean me off of the Fentanyl patches.  Hopefully, I will be able to get completely off of opioid painkillers.  At least that is our goal, we will see how that works.

After I was done with the radiation treatments, I began my full chemo regime consisting of Folfox + Avastin.  Of course, this started a whole new set of side effects but it was and is much easier to deal with than the radiation pain. I am currently on Folfiri + Erbitux and it seems to be working very well.   I was initially told that since I so many tumors (20+) on my liver that covered both lobes that I was inoperable and probably only had about two years to live.  That was some hard news to take but I kept at my treatments and continued to seek out other surgical opinions.  Finally, MD Anderson Cancer Center decided that they could operate on my liver by doing a two-stage resection.  First, they went in and removed the tumors from the left lobe, followed two weeks later with a portal vein embolization, which forced my left lobe to grow larger than normal, then six weeks after the first liver resection, they went in and removed the entire right lobe.  This gave me a much longer lifespan and brought the possibility of getting to the famous NED. (No Evidence of Disease)  Unfortunately, I have not gotten to the NED point yet due to a reoccurrence in my liver about six months after my surgeries. Here it is five years into this battle and I have 5-6 very small lesions or tumors on my liver and they are currently inactive/stable and they can find no other signs of cancer.  The radiation, which was supposed to be only palliative, ended up totally killing the primary rectal tumor so I did not have to have a lower bowel resection.  

I am not going to paint a rosy picture of all of this treatment, it was damn hard and continues to be fairly rough with the chemo side effects, but despite the pain and suffering caused by the treatments, I am still above ground and fairly healthy considering the original prognosis.j

About blood tests and genetic tests, most oncologists will order genetic testing to ensure that the chemo chosen will work with the mutations.l  Some chemotherapy drugs do not work with certain genetic mutations so doctors have to know what these mutations are prior to choosing a chemo drug.  I also get regular CEA tests to monitor the tumor activity.  This has been a very good predictor for me.  When it goes up, I know I have more activity and they usually find a tumor growing or progressing despite the chemo.  That has happened twice and both times they were able to use microwave ablation to burn out the growing tumor and the CEA levels went down.  I know for some the CEA is not a good measure but for me, it has been very accurate at predicting cancer growth and progression. 

I am still on chemo and will be until it quits working or I die, whichever happens first.  The statistics show that only 11% of people diagnosed stage IV live five years and I have lived 5 years with cancer so I am beating the odds.  I guess my point is that as scary and as hard as a cancer diagnosis is, there is a ton of hope now days.  The treatments they have today can usually manage cancer as a chronic disease for a good while and with all of the pre-meds they can give you before chemo the side effects are not nearly as bad as they used to be.  

I hope this helps and if you want to know any more about my experiences all you have to do is ask.  It was through talking to people on this forum along with great doctors that I was able to learn as much as I can about my disease and to learn how to cope with all of the unpleasant side effects of treatment.

Tim

Edit to add: I think most Oncologists are also hematologists as well.  I know most if not all of the docs at my local cancer center are both. 

 

danker
Posts: 1275
Joined: Apr 2012

I assume your friend is much younger than me.  I was 77 when diagnosed, Look at my history to see what i went through.  Soon to be 89 and am NED(no evedence of disease).  If I could beat Cancer at my age ,so can your friend!  Just take it a day at a time and always expect the best result.  Good luck to her!!!

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