Newly Diagnosed Rectal Cancer - Looking for Support


I was diagnosed with rectal cancer 3 days ago. I had been having intermittent rectal bleeding since 10/2016 and I have a history of chronic constipation. Thought for sure it was just bad hemorrhoids, diverticulosis, or a rectocele, but I guess I couldn't be that lucky. I think the worst part right now is not knowing anything! All I know is that I have a large ulcerated rectal mass. I will see the colorectal surgeons on Wednesday to determine if I will have surgery first or need chemo and/or radiation first. No one can tell me what stage the tumor is or how much tissue is affected until I have surgery. I am frustrated, scared, and trying not to let my imagination run wild. I am looking for support and any advise on what to expect, how to deal with treatment etc.

A little personal information about myself. I am 45 yo, and have 4 children (22, 18, 14 & 8 yo). My husband passed away of a massive heart attack 2.5 years ago. I thought making it through his death would be my biggest struggle, but now I guess I have to fight cancer. I feel horrible for my children. No child should have to bury their father, then have to watch their mother battle cancer. It just all feels like a cruel joke! I am having a hard time wrapping my mind around the diagnosis.

They did do a CT scan, and it does appear that there is no metastasis. They did find a mass in my uterus, which they believe is a fibroid. Seeing the OB/GYN to verify that on Monday. They also found 3 nodules on a lung that they just recommend a follow up CT in 3 months, although I guess I will have a PET scan sometime anyway. They don't believe the nodules are cancer. I do have a history of a deflated lung and had a past lung surgery. Most likely it is scar tissue, but that also needs to be ruled out. Overall, the doctor said the the CT scan looked really good. This leads me to believe that the cancer is strictly localized to the rectum, but not knowing anything is horrible! My imagination keeps running wild, so any help you guys could give me would be greatly appreciated! Thanks for your help! 



  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Welcome and sorry you are here

    Such a trial for one who has already suffered so much.  I am sorry to hear about your husband's passing. You are right, it does seem cruel that you and your children now have to face this challenge. 

    Roll with the feeling you are having. It is a trememdous shock to mind and body. These first weeks are filled with dark thoughts and trepidation. What does the future hold? Is there a future? All of these feeling are normal, and you are allowed to wallow in self pity if you want, to grieve and and to cry and hide and roll up into to ball.....for a while, and then move past that and get ready for the fight.  

    I promise you, once you get a firm plan of action, you will jump right into fight mode. Knowing that you are moving forward and doing something about this disease is great help.  Once the plan is set out, surgery, followed by treatment or treament followed by surgery, you will be fighting full on. 

    Being positive (once you have allowed yourself that time to absorb the shock) is a huge bonus. For some of us being positive is easy, for others it takes a bit of work, but it is important. 

    My biggest bit of advice as you move forward is to take this one day at a time. Don't jump ahead. If surgery is the plan, then concentrate on that and on recovery, and then, when its time for treatment, you can put your energies into that. 

    Good luck with your future appointments. Let us know how they go and what the paln is. We are here to support you all of the way. 


  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited February 2017 #3
    So very sorry

    First of all I'm so very sorry to hear of your recent diagnosis.  No one ever wants to hear that they have cancer and it's the hardest to hear especially when you have lost your spouse just a couple years ago so that secondly, I'm sorry for your loss.  It's good that there doesn't seem to be any metatisis and that it possibly could just be localized.  I've got a full history of my story on my "about me" page as I've also had rectal cancer.  I've had my rectum removed and ended up with a j-pouch so maybe you could see if you would qualify for this.  I'm wish you the best outcome.  Maybe reading my story might help give you some answers.  This is a great group and can help you get through this.

    If you don't like the answers from your doctors, or don't feel they understand you - get a new one.  They should allow you a second opinon.

    You are not alone - we are here for you. Kim

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I'm so sorry that you're here

    I'm so sorry that you're here but glad you found the forum. It can ground you like nothing else can. There's nothing anyone can say that will make you feel better at this point, it's something you have to get through. And you will. The shock will wear off, the fear will be lessened when you get more information, and you'll just buckle down and prepare for the fight. Be careful of Googling because you will get all kinds of wrong or outdated information and it will scare you with old or inaccurate statistics.

    You will find a number of stories on here about people with stage four cancer that have survived and are doing well. Of course, one thing you will discover is that the treatments and the response to them varies widely so you can't go by someone else's experience and expect it to be the same as yours. It would be so much easier if that were the case.

    In your case I'd expect that they'll either do radiation and chemo to shrink it and then surgery or surgery first depedning on the size of the tumour. Mine also wasn't graded until I had surgery and they couldn't tell me if it had spread at all. I just went along with what the doctors told me and did what I had to do. I wasn't on this board yet and I'm not good at researching things so I had no other resources. Just remember what my surgeon told me at the start of this. You make the decisions and you don't have to do anything you don't want to.

    Best of luck with this.


  • mozart13
    mozart13 Member Posts: 118
    edited February 2017 #5
    Not easy!

    Sorry to hear that, waiting doesn't make it any easier.

    When it comes to staging, mine was donne with MRI, it looks like yours will be donne with PET scan, CT scan is more to detect foreign cells in the reast of the body, where MRI or PET scan is focused on one specific area.

    Here is the link to couple of web sites about staging and treatment, one is Canadian, the other American, actually same site as this forum, approach is simillar, at the end I think the surgeon is the one that makes final dessicion:

    I just finisfed rad/chemo 25 sessions, T1 T2 rectal cancer, stage 1 as per staging, my surgeon is treating it as higher stage, I am gratfull for that, I want that thing out of me permanentlly. Operation is next than chemo, than reversal of first operation.

    What ever they suggest, go for it, better to over treat it than under treat it, your age is on your side, it is easier to go through that staff when in good shape.

    Wish you good luck, if you have any question about rad/chemo feel free to shoot!

  • zx10guy
    zx10guy Member Posts: 273 Member
    Sorry you have to joing the

    Sorry you have to joing the club that noone wants to be a part of.  You didn't put in your post about how they found this ulcerated mass, but I assume it had to be through a colonoscopy.  What were the biopsy results from this procedure?  Was it the biopsy results that resulted in the cancer diagnosis?  Also, do they plan on having an MRI done?  I didn't have rectal cancer just colon cancer.  But from those I have been following who have had rectal cancer, I think all of them have had an MRI of the area in question.  An MRI is better at imaging that area to get a better sense of depth of penetration and if there might by any lymph node involvement.  From what I've read, it's the MRI results which provide their doctors the basis on pre staging you for rectal cancer.  Rectal cancers seems like the only colorectal cancer which a person will get prestaged.

    While, it's good news the radiologist and your doctor think the lung nodules are not metastasis or cancer, I would be pushing to get a PET scan done; more importantly the MRI should be the priority.  While a PET scan isn't a definitive diagnostic tool, it provides another data point in your treatment.  It's good to have it prior to any treatment as a baseline just like the CT scan and definitely an MRI.  Also, you haven't mentioned any CEA tests being done.  You need to get this done now too.  Many people don't know what their CEA was before surgery and treatment so there's no initial baseline on where you were prior to surgery and treatment and if CEA is a good indicator for you.

    So please push to get an MRI and CEA test done as your first priorities and then see if you can also get a PET scan after bringing up the prior diagnostic procedures.

  • Bethers1010
    Bethers1010 Member Posts: 6
    I am sorry that you ahve to join us

    Like you my mom was just diaganosed with stage 3 rectal cancer on 1/10/17 and started chem/radiation today, 5 days a week .  She is taking Xeloda(in pill form) for chemo right now( we are too early to see if she gets the side effects).  she had a PET and MRI done, and the MRI upgraded her from a  stage 3 to stage 4.  She also had noded in her lungs, turned out to be nothing.  she does have lymph node involvement near the groin and the rectual tumor has pentatrated the wall.  I can tell you that the next couple of weeks will be a whirl wind of appointments, but with each new appointment you will get more information.  My biggest suggestion is take someone with you to all your appointments, two ears are better than one. 

    My mom also lost her husband(my father) to a massive heart attack about 11 years ago , so i also know how you feel there, but trust me your children will help.  The biggest thing is keep positive and always have a fighting attitude.  That is what i do for my mom, becuase like you her imagination took off( how could it not).  i will not let her google search anything,  i make her write down her questioins and then we talk to the doctors together.  she will do 31 treatments(about 6 weeks) of chem/radiation and then surgery to remove the tumor and then another 6-8 weeks of "clean up Chemo". 

    I did all the doctor research for my mom, we live at the verry bottom of NJ and there are no colrectal surgeons newar us, we travel 2 hours one way to see her colrectal surgeon every 3 weeks.  I would drive to Ohio if had to to have the best, and you need the best. Your insurance company my be able to help with finding a doctor of cancer center. I also am the one to keep track of all my mom's appointments, labs, tests and results, so the only thing she has to focus on is the fight. I will keep you updated as we move through our journey and I wish the best of luck with yours.

    Ps. this is a great forum for information and support.

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
    "welcome" to the group

    We all welcome you, but we know that no one wants to be here.  But here you will be safe and loved and have those that have gone before to help you on the path.  

    The first few weeks are the roughest.  We all went through the fear, devistations, sorrow, etc of it.  Let yourself feel whatever you need.  It is all normal.  And if you need to ask if something is normal, ask us.  Nothing is a silly question.  Once you get your treatment plan, if you are anything like me, you will feel like you have a path and something you can do.  You will know that you are helping to keep things going. 

    I too am a single parent, I have a 10 year daughter but I am sorry for your loss added into this.  I can only imagine how much that is making this more difficult.  I know how scary it is with them having to face this as well.  Keep things simple for them.  Be honest but just keep it simple.  Kids are strong and you will be amazed what will happen.  For me, it made me even more grateful and in love with my child.  I really started cherishing every single moment.  She and I are so close because of our cancer battle.  And it is "our" battle because she is there helping.  Just love on your kids as much as you can!!  They will appreciate it (maybe not as much the older ones, but deep down they do) and they will remember that.  They will know how awesomely strong their mom is.  They will know too how to be strong. 

    Please post anything you need.  Post what areas are concerning you.  We are here for you! 

  • Colonchick
    Colonchick Member Posts: 36 Member
    Welcome! I just wanted to let

    Welcome! I just wanted to let you know you're not alone... This is a wonderful site with wonderful people who will laugh, listen, and cry with you through the whole journey!!!

  • blessed39
    blessed39 Member Posts: 90 Member
    edited February 2017 #10
    Newly Diagnosed

    Know that you are not alone even if you feel like it. Many of us have had the

    same feelings and emotions that you are now feeling. I was diagnosed with stage four colon cancer, but

    I'm still here. I actually wrote my story "How I Beat Stage Four Colon Cancer." If you want to read it. It's on my blog.

    I pray my experience will give you some hope and comfort.  blessed39

  • lp1964
    lp1964 Member Posts: 1,239 Member
    edited February 2017 #11
    Dear Friend,
    Feb 13, 2017 - 2:04 pm

    The mindset that helped me the most is that I'm not my cancer. I'm the same person as I was before I was diagnosed. I have my life, my personality, my skills, my wisdom, my power, I just happen to have cancer. You will feel much better mentally once you have all the information and start treatment.

    We all pray for you and giving you amazing support,

    Laz (52 yo male, stage 2-3 rectal cancer 3.5 years ago and joyful as heck now!

  • Cammy
    Cammy Member Posts: 2
    edited February 2017 #12
    About staging cancer

    Hi there,, I had colo/rectal caner.  There is clinical staging via Ultrasound, cat scans... that do indicate if the tumor has went through the colon wall.  Then there is pathological staging with surgery and test ran on surrounding tissue and nodes taken from around the tumor.  They will most likely treat you with chemo and radiaion to shrink tumor mass and kill the cancerous cells before surgery.  Then you should take 'after chemo' to kill any micro cells that may have traveled elsewhere.   I was scared, uncertain....  But let me tell you, though no one is the exact same in their experiences, I can't believe how well I tolerated my treatment.  I was stage 3, in pain, and thought I was going to lose the fight.  But I am here,, still have my hair, still doing the after chemo.  They got all the cancer out, and I believe this will be a distant memory.   You can beat this cancer.   I was treated with Xeloda pill form along with radiation, then surgery, now 'cleaning up' with my adjevant chemo (after chemo)  You have to get 'meaner' than your fears.  You have so much to live for.  The first thing I did was go to my minister and asked for prayer and annointing,, I asked not that the cancer just be 'taken' away, but that God would give me the grace, strength to fight, and peace to get through the darkvalley.   He did just that.   God bless you, stay strong.    ~Cammy

  • ellend
    ellend Member Posts: 109 Member
    Sorry about your diagnosis

    My treatment plan was similar to Cammy's. Radiation and Xeloda followed by surgery, then mop-up chemo. I just recently had surgery to eliminate the temporary iliostomy from the original surgery. The radiation/chemo pre-treatment did it's job and shrunk the tumor until it was mainly just an ulcer. This is not an easy course of treatment and I hope you have some good support to help you through some of the rough patches. Each stage of treatment has its own set of challenges. I have been fortunate in that it appears they got all of the cancer out during surgery and the lymph nodes they removed were clear. The scan done after the mop-up chemo also came out clean. 

    I wish you the best and the people here are very helpful in answering any questions or concerns you might have and sharing their experiences.