Newly diagnosed with rectal tumor - lots of questions and fear

Jvana06
Jvana06 Member Posts: 17
edited December 2019 in Colorectal Cancer #1

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...

 

 

«1

Comments

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Welcome Joy

    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
    Jvana06 Member Posts: 17
    edited December 2019 #3
    Trubrit said:

    Welcome Joy

    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

    Thank you Tru, I so

    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
    SnapDragon2 Member Posts: 646 Member
    Completed 6 wks chemo/rad 3

    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
    Jvana06 Member Posts: 17

    Completed 6 wks chemo/rad 3

    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.

    Thanks

    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
    SnapDragon2 Member Posts: 646 Member
    If you just live 5 minutes

    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
    SnapDragon2 Member Posts: 646 Member
    edited December 2019 #7
    Im in the surgery waiting

    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
    SnapDragon2 Member Posts: 646 Member
    OH,  for me alcohol free

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

  • Jvana06
    Jvana06 Member Posts: 17
    edited December 2019 #9

    OH,  for me alcohol free

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

    Great info

    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
    Real Tar Heel Member Posts: 290 Member
    Hi,

    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.

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    I went from 126 lbs to 109

    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
    Jvana06 Member Posts: 17

    Hi,

    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.

    Thanks

    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??

  • Jvana06
    Jvana06 Member Posts: 17

    I went from 126 lbs to 109

    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.

    How are you working on gaining weight?

    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
    Jvana06 Member Posts: 17

    I went from 126 lbs to 109

    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.

    Question

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

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    I had chemo and radiation at

    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!

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    They would not stage me, said

    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.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Welcome

    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

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    Yes, Kim is right about not

    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
    Jvana06 Member Posts: 17

    I had chemo and radiation at

    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!

    Glad to hear you’ve gained

    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.

  • Jvana06
    Jvana06 Member Posts: 17

    They would not stage me, said

    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.

    I have same sized tumor, T4

    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.

  • Jvana06
    Jvana06 Member Posts: 17

    Welcome

    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

    Such enormous knowledge, thank you
    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.