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Newly diagnosed with rectal tumor - lots of questions and fear

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Hi, my name is Joy and I learned on Nov. 15th that I have rectal cancer.  I am 49 years old and have been experiencing rectal bleeding and symptoms for a while.  I went to a gastro specialist last year and they advised I may have IBS, checked that I wasn't anemic and felt my abdomen for tumors and advised I should schedule a colonoscopy just to check things out.  That was last year and I had one scheduled but cancelled it when I figured I could adjust my diet and get feeling better.  I had waves of good days and bad days over the past year and figured I must have IBS or IBD.  Fast forward to this past October when I scheduled another colonoscy locally and they didn't have an opening for almost 5 months.  I found a place in Seattle where I got in within two weeks and they discovered the tumor.  They got me immediately in for a CT scan and learned that it had luckily not spread to lymph nodes or vital organs.  The next week had an MRI and the tumor is at Stage 2 and is a T4 according to Oncologist and Surgeon.

As soon as I got the diagnosis I got insurance in place, but it doesn't start until January 1st.  The Oncologist is working with me to minimize costs in December and still be proactive prior to starting on Chemoradiation in January.  From what I understand I may have one or two chemo treatments in December and then I will be mapped on January 6th and then start chemoradiation for 5 1/2 weeks, wait for 10 weeks, surgery with temporary Iliostomy for 8 weeks and then reconnect surgery and then possibly clean up chemo.  I think I've understood this is the process??

My question is about assistance I may need.  My husband works during the day and my two youngest boys are both away at college.  Will I need some in home help during chemo/radiation, rides there or help after surgery?  Just trying to think ahead and who I might reach out to for assistance.  If someone has a similar experience it would be helpful to know what to expect...

 

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I am sorry for your diagnosis. 

It sounds like you have a plan, and are moving forward. Be prepared for changes becasue sometimes it just doesn't go to plan. 

We all react differently to treatment, thus, I can give you advice based on how I handled it, and someone else will give you advice based on their experience. 

My timeline went a little differently than yours - Surgery, chemo, chemo & radiation - But I did have radiation, and thus this is what I will tell you. 

For me, radiation was like living in Hell, or maybe even worse.  I could not have travelled to it by myself.  I spent most of my time on the couch or on the toilet.  I was so cold I went into rigors. I slept allot, and the pain was worse than the C-section I had without anesthetic. 

So, I think it would be good if you at least found a backup driver, but you could start off driving yourself.   You will not know how easy or hard it will be on your body until you are there. 

There are some other things that you might want to look into, to help you thruogh the radiation. A bidet (I got an inexpensive one from Amazon, and have used it many times every single day for six years.) A Sitz Bath. Soft, soft blankets to sit on. I tried a whole slew of unctions on my burns, and found that pure organic aloe was best for me.  

So, you have the horror story from me, now others can add their experiences which for the most part, are not so horrific. 

Stick with us, and we will help you through. 

Tru

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Thank you Tru, I so appreciate your advice.  I am nervous about the radiation.  I will work on the schedule to ensure I've got my husband available to drive me then.  I will look into getting a bidet for sure.  Do you have one with a wand or spray from the seat?  Curious what I should be looking for.  And, you pegged it... I am a planner and like to know what to expect and clearly this was not planned, nor will the coming months.  I know I will have a lot of questions and anxious thoughts in the coming months.  It's all so much to take in.  I so value the experience of those who have gone before me.

I hike with my dog regularly and so hope I can maintain this healthy activity for as long as possible throughout treatment.  We both love the outdoors and the exercise, even in the snowy winter months.  I am looking forward to exclaiming this new word, NED!  One of my boys raced on a 4x100 team and they won the State competition their Senior year.  They affectionately named the baton they handed off to one another NED.  I'm looking forward to the handoff of that baton to win this race!!!

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

Completed 6 wks chemo/rad 3 weeks ago.  I learned taking an anti-inflammatory on a regular schedule controlled the inflammation, wearing loose fitting clothes, pure aloe for the skin irratation, soaking in a warm sitz bath with baking soda was heaven, having a portable fan (for your butt) on the way home after rad. treatment (just don't let the truckers see you, haha), andwalk walk walk.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Hi SnapDragon2, thanks.  I will keep that in mind, good thing my drive home is only 5 minutes!  That is a funny visual, a portable fan!! ?  Hoping to find out your next steps and how you're doing now?  You're a couple months ahead of where I am.

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

If you just live 5 minutes away from treatment clinic, you got that part.  Depending on how your body reacts to chemo/rad, you might need extra help with housework, grocery shopping, etc.  This is where your husband gets to show out!

 

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

Im in the surgery waiting stage.  I am trying to gain weight back as I will definitely need it for surgery and recovery.  Looks like I will have a permanent colostomy because of how low my cancer is.  Not looking forward to a life of that but having my life is the most important.

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

OH,  for me alcohol free witch hazel wipes were a must have staple in the bathroom.  Toilet paper is the enemy.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Thanks, glad to know I may be okay with the driving.  I'll see how it goes.  I'll get some of those witch hazel wipes for sure.  Did you lose weight during the radiation/chemo?  I've already gone from 135 to 110 in the past year.  I finally realized that something was really wrong when I started dropping weight unintentionally and my hair thinning a few months ago.  I am hoping I don't lose much more in the coming months.  Also, I am hoping if the rectal tumor shrinks then BM'a will be easier and less painful.  It seems in the past 6 months I've struggled with that.  I am hoping that by having the tumor shrink during radiation it will help.  But, sounds like I'll have a host of other pains to worry about...

 

Real Tar Heel
Posts: 104
Joined: Nov 2019

Hi,

I was diagnosed CRC. I'm having adjuvant chemo (the tumors were removed surgically). I've not lost weight at all, in fact I'm getting fat because I've been too tired to exercise. My chemo is likely far less debilitating than your radiation treatments. I had a friend who had CRC and had to have a complete colectomy plus radiation.

Chemo has made BMs a problem, some have described it has trying to pass shards of glass. I've taken a few stool softeners and used an ointment.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Real Tar Heel,

Lots to learn, hoping the nursing staff and Dr's will be able to assist with problems that arise.  Shards of glass sounds pretty painful.  But, if there is a light at the end of the tunnel it will be worth it.  I've been struggling for a while.  I know this will be a painful journey and hoping through communication in this group there will be some guidance.

How many more chemo treatments do you have to go??

Real Tar Heel
Posts: 104
Joined: Nov 2019

Hi, sorry for the late reply. There was some confusion regarding my treatment schedule and I didn't have one for a month. I'm back on schedule now but they let me take the week off for Christmas. So then, I'm not sure whether they will end it on the scheduled week or whether I will go for an additional 6 weeks. I'm guessing the later.

I don't like that painful part but for me it's momentary, a little Prep H and I move on. I've been most bothered by the anemia/fatigue. YMMV.

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

I went from 126 lbs to 109 lbs while being treated for hemmroids by my family dr.  Then he ordered colonostomy and found cancer.  I now weigh 101 lbs after the chemo/rad.  Some of it also I think is that I cleaned up my diet even more.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Hi SnapDragon2,

How are you doing gaining weight? I, too, cleaned up my diet with low sugar, dairy and gluten.  The weight fell off really quickly.  But, how to gain weight while still eating healthy?

Looking forward to hearing if you've had success gaining weight.  I'm worried about losing much more.  Were you able to eat okay during radiation?

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Curious what stage is your tumor?  Have they re-staged it since radiation or do they re-stage after surgery?

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

I had chemo and radiation at the same time, so hard to tell.  I have gained 2 lbs back so far.  Healthy fats and high protein intake is my focus for gaining weight back.  You could try to eat small meals at least 3-4 times a day and eat healthy fat snacks in between such as walnuts, pecans, almonds with some dried fruit or other healthy snacks.  I aim for 1500-1800 calories a day but haven't made it there yet (getting closer).  I write everything down in a book to keep up.  And WOW at Real Tar Heal, thats amazing you gained weight.  Way to go, you are doing something right!

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

That's a great idea keeping a food journal.  I'll have to remember that.  Are you exercising now?  I'm hoping I can get back to the gym and feel gain some muscle and weight before surgery.

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

I have to be careful with the port in my chest but Yes, I am doing core strength training along with walking.  We have a rolling pasture so walking the dogs around it is about a mile. 

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

They would not stage me, said I would be staged after surgery but I do know the tumor size is a T4, no lymphnode involvement at this point.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

I will be looking forward to hearing how your surgery goes.  My tumor is the same, so far no evidence of lymph nodes enlarged on the scan, although it sounds like during surgery this is confirmed.

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

Welcome to the group you never wanted to join, but you have come to a wonderful, caring bunch of people that can help you get through all of this.

Your situation was similar to mine.  At first the radiation wasn't so bad but after a couple weeks fatigue set it about week 2 1/2, but there are people that take themselves and do fine.  Actually, I'd taken myself a couple times when my husband wasn't available and did fine, so it all depends on how you tolerate it.

The radiation burn is going to get you though so please be prepared.  A sitz bath and some good anal barrier (Calmoseptine behind the counter, but not prescription) was my go-to favorite friend.  It hurt like He** to go the bathroom with the acid burning the now raw anal area, and going diarrhea 35 times a day was common for me.  I'm not here to scare you, but tell you my exerience, but not everyone has the same.

You can get through this, and we are here to help all the way.

My diagnosis was shortly after turning 50 and in a post that was just posted about my "11 years ago" was about this same time for you.  Read my "about me" page to get more information about my journey.

Wishing you the best and always feel free to ask anything on this board.  We have already been humiliated by every doctor poking and prodding at us so no question is off the wall.

Once again, welcome to the board.  You will do just fine.

Kim

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Hi Kim, it was so helpful to go to your page and read through your detailed timeline of your journey. That is exactly what I needed to see, it gives me a lot of hope.
I’ll definitely pick up some calmoseptine. I’m going to have a whole arsenal of supplies at the ready thanks to all of your advice.
I had my first “digital” exam by the surgeon last week with an apprentice by his side and a nurse. They were very respectful. I had struggled to sleep the night before thinking about it and feeling distressed, but, it was over and done with quickly. You are right, the dignity kind of goes out the window with all the poking and prodding, enemas and all... thank you for offering up advice regardless of how personal it feels. We’ve either all gone through it or are currently going through it. So thankful to have your advice.

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

Yes, Kim is right about not being embarrassed.  I'm not easily embarrassed anyway but did tell the radiologist that he can't just out of the blue say "I need to check your skin".  He has to give me a days heads up on that because if you have to go to the bathroom at the clinic before your rad time and forget your wipes from home, let me tell you that the public toilet paper is John Wayne toilet paper "don't take crap off nobody" and probably leaves dingle berries and don't want him writing in my chart something like "that woman had 53 dingle berries today."  My radiologist got a kick out of that logic and we came to an understanding that day :)  

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Omg!  I love this.  Thank you!  With such a personal and unsexy diagnosis it is so valuable to have humor.  I will never go to radiation or any appt for that matter without wipes in my bag!  Thank you!!

I had my colonoscopy over in Seattle, three hours from my home and we stayed in a hotel and during the prep I recall the paper thin, industrial toilet paper in the hotel and it was a nightmare.

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I've always brought my own TP when staying in hotels as the paper is just to scratchy for my behind even now.  Don't be afraid to carry it in yourself.  Even when visiting my father, he knows to buy me special (my brand) of TP (God Bless him) because he uses the icky kind.  You will find this tip another good one.  You will do everything to spare your hiney after radiation burn.

Kim

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

When I am travelling or hiking, I use bio-degradable WIPES they are super soft and gentle, and leave the skin soft.  

I must remember to take a loo roll with me as well.  

Tru

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

and it still does. 

I'm glad to hear that you walk. I think it is one of the best exercises out there. It is not only good for the body, but it is good for the spirit. 

After Radiation, I had uncontrollable bowels. I could not leave the house. Then I discovered this wonderful little canyon, not far from home. While I live in the desert, this little canyon offered a few trees and some big sagebrush and not too many people, thus, I when I had (and still have) emergency 'I want to go and go NOW' BMs, I just found myself a hidden spot - or somewhat hidden - and dropped my britches and went - Of course, I totally clean up the area, and leave no trace -  I can tell you right now, this saved my life. My daily walks, which turned into hikes, keep me alive, I know they do.   

So, get yourself - if you don't already - some of those biodegradable doggy bags, wipes, and plan on walking just as much as you can.   I would suggest that, during treatment, you don't go too far afield. As Kim mentioned above, after a while, fatigue may set in, and if it is bad, you will find you suddenly cannot move (I have literally crawled to the couch, many time).

Keeping a very detailed journal will also help. Maybe two. I kept a journal of everything that I felt, every pain, niggle, every single thing, and questions also. At my next appointment I would go through the list of questions and anything that I wanted to talk about with my Oncogist. I also kept a journal of everything that went into my mouth. That way, I could tie certain foods to certain reactions - diarrhoea, constipation, sickness. 

And I am sure your radiation oncologist will tell you when you go in for mapping, that he does NOT want you to loose or gain weight. It messes with the markings. You may get little tattoos, I got stickers.  My Rad Onc re-mapped me during treatment, because I lost seven pounds one week. He was not happy, and had to move the stickers. As you know, there is no moving tattoos. 

Here is the link to the bidet I purchased Bidet .  I bought mine in 2013, and use it several times a day. It has never broken. I gave it five stars.  You can get ones that are plumbed into your hot water. I personally like the freezing cold blast of water, especially in the morning, it wakes me up.  I use special towels afterward, laundering them sperately of course.  This is the Sitz bath I used Sitz Bath, very basic. I see they have some nicer ones on there now. 

I tried sitting on one of those Donut things, but it was even more uncomfortable than sitting on my bum. I went through a few different pillows until I found one that positioned me, so I wasn't sitting on the painful spot.  If it gets bad, you will find a way to make it less bad. 

Still, I really do hope that you are one of the lucky ones who just breezes through treatment.  

Tru

 

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Yes, I've got some nice areas to hike and it is a lifesaver for sure.  I also enjoy biking, but it sounds like that activity will come in time.

Thanks for the links to the bidet and sitz bath.  I'll look into those.

Thanks for sharing your knowledge.  I know as I progress I am in good hands here with so much knowledge.

danker
Posts: 1253
Joined: Apr 2012

I was like you, only I was 77 at the time!!I used RASDIA gel from wallmart to soothe my bunn.  When my colon was reconnected I developed a fistula.  That meant 6 more weeks on a bag, but the fistula healed itself from the inside out.  A colonoscopy the following year showed I wasNED!!! Been that way ever since and am currently 87.  If I could do it at my age, you can certainly do it at yours!! It may be a bumpy ride, but it is doable.  Best of luck to you!

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Hi Danker,

So great to hear your story and success!  That is what I'm needing right now.  I have four boys aged 18-26.  One is getting married this summer and I want to be there for them and watch grandchildren grow and watch all my boys launch out into the world and be there for them as they progress through the milestones of life.

Being on this site and reading stories has been so encouraging.

So appreciate those who have stayed on this site after their diagnosis and recovery providing hope and encouragement to those of us just beginning this journey.

SnapDragon2's picture
SnapDragon2
Posts: 312
Joined: Nov 2019

Hi Joy,  I hope you are having a great day!  I sent you an email through this site.  I didn't know you could do that until yesterday so just wanted to pass along an experience/information with radiation.

SoCal42
Posts: 78
Joined: Jul 2017

I am also a planner, and it's always hard (and frustrating!) to plan when things are kind of unpredictable. I had a low rectal tumor three years ago. Had chemoradiation x 5 weeks, 9-10 week break, then APR surgery with a permanent colostomy, followed by six cycles of FOLFOX chemo.

Radiation starts out easy and then the side effects increase over time. I drove myself to radiation treatments (about an hour one-way), but towards the end, I definitely started taking Immodium before leaving the house to help control the diarrhea. I bought a little plastic squeeze bottle to use for washing up. Towards the end of radiation, I found it helpful to go on a temporary clear liquid diet off and on for a day at a time, just to get a break from the diarrhea. You can google low fiber diets for the same purpose. I didn't really need extra help at home until maybe the last two weeks of radiation and the week after treatment ended. They will usually warn you that the radiation side effects can continue or get a little worse even after treatment stops, and then it calms down.

 

annie4145
Posts: 182
Joined: Jul 2018

Hi, I actually had anal cancer but besides that, I can identify what you are going through now.  I was 51 when I was diagnosed, with two kids at home (ages 10 and 12), as I started my family late.   I also had bleeding previously that I could have checked out earlier but I didn't because I didn't think it was a big deal.  Well the colonoscopy discovered it was, and I was diagnosed at stage 3a.  Lucky it was caught there instead at stage 4.   You can't second guess things, just be happy that they caught it at stage 2.   That is better than what it could have been. 

So as far as treatment, I had radiation, 5FU and mitromycin(?).   Don't go buying a whole bunch of creams ahead of time.  My hospital ended up providing me everything I needed and they didn't want me to use anything else.  I did buy a bidet and really liked it.  I also bought a very soft toothbrush and special toothpaste.  The other thing that I ended up needed towards the end was adult diapers (as I had really bad diarrhea and had an accident once trying to walk from the car to the hospital and towards the end it was the worse part of treatment.)  It is a good thing that you are so close, you won't need someone to drive, or you could just get uber and be there in a couple of minutes.  Although treatment is no fun, some people are able to handle it better than others, and what some people perceive as painful, others do not.  Being younger may help you during the recovery.  I know that I have recovered more fully and with less long term problems than some other people, but I could have just been lucky.  You probably can handle the day by yourself during the chemo and radiation.   I was in a hotel by myself (because I lived 2-1/2 hours from the hospital) for the first 4 weeks of treatment. The 5th and 6th week my mom joined me,  You won't want to do any cleaning or shopping or getting mail or cooking though during the first 4 weeks.  I found it helpful to have someone around at the end,  especially the 6th week.  I had extremely bad diarrhea at tha time.  I mainly rested and took a nap every afternoon.   Please let me know if you have any other questions. The treatment will seem like a really long time when you start, but it will go by quickly.  I did lose 30 pounds but I was quite a bit overweight when I started and could lose that much and still be overweight.  But unfortunately, I have gained it back after treatment.   The doctors will not want you to lose weight during treatment, so you have to make sure that you eat even though your appetite might not be normal.

SoCal42
Posts: 78
Joined: Jul 2017

That is a specific thing with radiation therapy, they want you to avoid losing or gaining too much weight during treatment, because it could change your treatment positioning. They put a lot of work into determining your precise body position for treatment. They want to duplicate that position every day of treatment because they'd like to hit the tumor every day without damaging too much of the surrounding tissues.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

SoCal42, thanks.  I will try really hard to keep eating good during treatment.  Don't want that radiation beam radiating something else.  I know there is a spread out and it's not totally direct, but, I am going to work really hard on keeping weight on.

I just read through your about me page and treatment plan you've been working through.  How are you doing?  Had your scan this month yet?  Sounds like you'll be taking a break from chemo?  Hope your scans showed shrinking of the tumors.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I have radiation damage to my hips, especially the right hip, and chronic vaginal stenosis also.  I think even a good Radiologist is going to hit some extra spots.

Tru

SoCal42
Posts: 78
Joined: Jul 2017

Yep, all these treatments sure do create a lot of collateral damage! I had stereotactic lung radiation which was a much more precise process than the rectal radiation.

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

Ditto with Tru with radiation damage.  I've had two hip replacements, and even sometimes wiping can cause bleeding in the vagina area because the radiation has thinned out my skin so much.  My radiologist made sure that my bladder was full everytime for treatment so that the bladder was less targeted.

Kim

SoCal42
Posts: 78
Joined: Jul 2017

Thanks for asking! Right now, I have one more week of planned chemo, then a CT scan is scheduled right after that. If my two lung mets look stable or smaller, and there are no new mets, we plan to stop chemo and monitor every three months by CT, and wait and see what happens.

Jvana06's picture
Jvana06
Posts: 17
Joined: Dec 2019

Annie4145,

Thank you so much for detailing your experience, that is very helpful.  When I go to get mapped on Jan 6th I'll ask about the creams and supplies they'll be able to provide, that is good to know.

How are you doing now?  I have a friend who's sister was diagnosed with anal cancer and we've been talking.  She is going in Dec. 18th to find out after waiting 6 months whether the cancer is gone.  She had the chemo and radiation but there were still traces of it left.  They decided to wait 6 months and she'll be going in to find out if she'll need surgery and a permanet colostomy bag.  She is very worried and hoping it's all gone.  I know if she has to have surgery she's prepared and ready, but she is really hoping for good news.

 

annie4145
Posts: 182
Joined: Jul 2018

Thanks for asking.  I was diagnosed with stage 3a, but I have been very fortunate.  I have recovered well from treatment.  I don't have anything that hinders my day to day life, and I have been fortunate to only have side effects which I can live with without major issues (bowels still don't work regularly like they used to!).  But I know that some people have a much more difficult time in recovery so I am lucky.  I get scanned regularly and it looks good so far.   what part of the country is your friend's sister at?  Is she treating at a major hospital, such as a teaching hospital?  Hopefully the new scans are good!  The board for anal cancer is good, but sometimes doesn't have a lot of posts.  But there are some regular posters there if she is interested.  Sometimes it takes some time to have a full response to treatment, so I hope that it is all it is.  If she can get it into NED (even if she needs surgery), my doctor assures me that the statitics are much better than what are published, and as a woman, HPV+, HIV-, the statistics are very good long term.  I hope that she can fall into that category. 

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