New here, newly diagnosed, with many questions

lizard44
lizard44 Member Posts: 409 Member
edited April 2015 in Colorectal Cancer #1

Hi, I’m new here, newly diagnosed and have  a ton of questions. I’ve learned a lot from reading the posts here  and hope to learn more and hope that I can one day share what I’ve learned.

 I had been having  blood on my stool and pain in my rectum for nearly a year, but dismissed it as hemorrhoids until I realized that  hemorrhoids   don’t  hang around that long without letting up.  Went to my PCP in March and he referred me for a colonoscopy, which I had on April 8. The colonoscopy report notes mild diverticulosis in the sigmoid colon and rectosigmoid junction; two nodular polyps 15cm from the entry site, all polyps removed by hot biopsy polypectomy.  A tumor was found in the rectum. Four biopsies were taken. The gastroenterologist told my husband that the tumor was “huge” but did not note the actual size. He set us up an appointment with a colorectal surgeon for April 10.  The surgeon told us the pathology reports indicated the tumor was an adenocarcinoma, that because of its location I would most likely lose the sphincter and  need a permanent colostomy, but  he recommended neoadjuvant chemoradiation to shrink the tumor before surgery. He set me up for chest, abdomen and pelvic CT scans with contrast dye. When he phoned with the results he  said the scan showed that the lungs were clear but there were some tiny specks on  my liver but he didn’t seem to think they were a problem. When I asked  about staging and whether  he could tell how far the tumor had invaded the  rectal wall, etc and if  there was lymph node involvement he said  we wouldn’t know that until he did the surgery.  So I am to  meet with an oncologist this Wednesday to set up the chemoradiation therapy plan and then he (the surgeon) will insert a port for the chemo.  Should I know more than I’ve been told about the tumor at this point? What questions should I ask the oncologist?  I am  70 years old, have always been    small-  weighing about  85 or 86 lbs (I've lost a few  pounds since this started and am now down  to 83.6 lbs.), and other than childhood polio which left me with scoliosis,  and  IBS, I’ve been in good health without  so much as a cold in the last  five years or so. I’m not crazy about  the idea of the therapy, having my immune system screwed up and  possibly  experiencing  nasty side effects but am willing to put up with it if it can improve my quality of life and not just give me more time with little quality. In other words, my goal is to learn as much as I can, take a proactive role in  my treatment and not just blindly follow  the doctor’s advice and avoid becoming just another statistic on a mortality table. I would appreciate any wisdom  and advice you can offer to help me in that  goal.

Thanks,

Grace

Comments

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #2
    Welcome to the board

    You will find many people on this board that have followed the same path. I didn't have the same experience. I just wanted to welcome you to the site. 

    Yolanda

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Welcome, Grace

    I am sorry that you have joined our band of warriors, but you have made a good move, coming here for support and info. 

    My word, you are tiny. I would suggest, if it is at all possible, to gain a little weight. I'm sure your natural build is to be small, but if you can add something to it, I'm sure that would help, as chemo and radiation can be rough, very rough. 

    Of course, I'm not suggesting you eat like a mad woman, but if you can gain a bit with some healthy foods, well, I bet it wouldn't hurt. 

    I lost 25 lbs while going through treatment. I needed to lose weight, but it was not the best way to get rid of it. I have gained 10 of it back. 

    I hope you have a nice sturdy notebook for questions and answers. I never went to the Doctor without mine, thats for sure. 

    I know others will be answering your post over the coming days. 

    Good luck!

    Sue - Trubrit

  • Easyflip
    Easyflip Member Posts: 588 Member
    #4
    Hi Grace,

    I did chemo and I added a lot of integrative things like cannabis oil, supplements, exercise etc. I don't have any answers but I have advice. Stay positive, fill your life now with experiences and loved ones. Be grateful, listen to your doctors but keep asking us for our opinion, nothing like having been there. You can beat this and you can maintain a high quality of life. It's ok to be scared, mad and it's ok to cry. Good luck, best wishes, welcome to our family : )

    Easyflip/Richard

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #5
    Welcome Grace

    I was diagnosed with a rectal tumor over 5 years ago.  CT scans showed no other involvement.

    My surgeon offered me radiation/chemo treatments to shrink the tumor to possibly save me from having a perm colostomy.

    I chose to have only the surgery.  The colostomy is not hard to live with.

    Each person and situation is different.  If in doubt about how you want to proceed, get a second opinion.

    Wishing you the best with your treatment plan.

    Marie who loves kitties

     

  • lizard44
    lizard44 Member Posts: 409 Member
    #6
    Lovekitties said:

    Welcome Grace

    I was diagnosed with a rectal tumor over 5 years ago.  CT scans showed no other involvement.

    My surgeon offered me radiation/chemo treatments to shrink the tumor to possibly save me from having a perm colostomy.

    I chose to have only the surgery.  The colostomy is not hard to live with.

    Each person and situation is different.  If in doubt about how you want to proceed, get a second opinion.

    Wishing you the best with your treatment plan.

    Marie who loves kitties

     

    Thank you all for the welcomes and good wishes :-)

    It's most helpful to  know that others have  experienced similar circumstances and are willing to share their experiences.  I'm glad I found this "band of warriors" as Sue calls y'all :-)  I'm still learning how this message board works, so please bear with me if  my responses turn up  out of order or in the wrong place. :-)

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #7
    lizard44 said:

    Thank you all for the welcomes and good wishes :-)

    It's most helpful to  know that others have  experienced similar circumstances and are willing to share their experiences.  I'm glad I found this "band of warriors" as Sue calls y'all :-)  I'm still learning how this message board works, so please bear with me if  my responses turn up  out of order or in the wrong place. :-)

    Don't worry....

    when I first got here, I thought flagging was like liking on FB. Its a learning curve. 

    I know we have members who are similar in diagnosis as you are. I do beleive Laz is one of them, but he is jollying it up in England at the moment, and I'm sure he will have advice when he gets back.

    And the weekends always seem a little quiet. 

    Sue - Trubrit

  • danker
    danker Member Posts: 1,276 Member
    #8
    port

    Getting the port is easy.  It will be used to give you the chemo. Your age doesn't present a problem. I was 77 when diagnosed.  Currently 

    82 and NED(no evedence of disease).  So it can be beat!!!  If you end up with a colostomy, they too are doable.  Just hang in there and don't be afraid.  Best of luck to you!

  • NewHere
    NewHere Member Posts: 1,428 Member
    #9
    Welcome To The Board

    Sorry to see you here, but it is a good place to be with people who have reallly helped me along the way.  I have a different cancer, colon, so on some things others will be able to offer you more targeted advice.  The waiting for answers from tests results and the rest, together with worrying about the next steps, are often trying.  So when getting annoyed, frustrated or the rest, this is a good place to come and vent, discuss and the rest.  All of us know that feeling :)  And often the anxious/fear part (for me) has been worse (kind of) compared to the actual.  

    For me, I would ask about options and prognosis based on options just to get a sense of the playing field.  If some answers do not sound detailed enough for you, such as "huge" for tumor size, keep on asking until you get something which makes sense to you or gives you a guideline. And definately eat when you can.  I am about to go for my fourth session of chem and the first week of each session is where my apetitie drops, but I make up for it the next week as much as possible :)  So far I have been maintaining weight, after the initial drop from the surgery.  Had a couple of small dips, but keeping it going.  

    Good luck with it all and remember this place is full of us who are going through this all so hang out here and ask away.

  • John212
    John212 Member Posts: 116 Member
    #10
    Welcome to the funhouse!

    It's the mantra around here: sorry you had to come looking for us, but we're glad you did. As others have said, the more information you can get right now, the easier it will be to get comfortable with your decisions. I would not settle for language like "huge" if I were you. Call the hospital where your testing is done and ask for a copy of all reports on your tests. Your doctors will naturally compress the test results information into a single sentence or two to save time and - in their minds - save you from details you might not understand. Phoooey on that. Get the reports, read them, and underline or highlight every word or term you don't understand. Then search online for what these words mean and keep on searching until you have a basic understanding of everything in the report. Doing this will seve a number of purposes, but the most important is that you will be an equal partner in this new venture that is treating your cancer. And, if you're like me, all the time you spend looking up unfamiliar terms will keep you from watching daytime television or other depressing wastes of time, which will hurt you almost as much as the cancer right now.

  • lizard44
    lizard44 Member Posts: 409 Member
    #11
    John212 said:

    Welcome to the funhouse!

    It's the mantra around here: sorry you had to come looking for us, but we're glad you did. As others have said, the more information you can get right now, the easier it will be to get comfortable with your decisions. I would not settle for language like "huge" if I were you. Call the hospital where your testing is done and ask for a copy of all reports on your tests. Your doctors will naturally compress the test results information into a single sentence or two to save time and - in their minds - save you from details you might not understand. Phoooey on that. Get the reports, read them, and underline or highlight every word or term you don't understand. Then search online for what these words mean and keep on searching until you have a basic understanding of everything in the report. Doing this will seve a number of purposes, but the most important is that you will be an equal partner in this new venture that is treating your cancer. And, if you're like me, all the time you spend looking up unfamiliar terms will keep you from watching daytime television or other depressing wastes of time, which will hurt you almost as much as the cancer right now.

    Thanks for  the response,

    Thanks for  the response, John212. I'm planning on asking for the pathology reports, CT results, etc. for my records when I go to the hospital to meet with the oncologist tomorrow.  In reading through the  patient information booklet on patient's rights, this section concerned me a little: "The Right to Inspect and Copy Your Medical Information. You have the right to inspect and copy your medical information that we may use to make decisions about you. In limited circumstances, we do not have to agree to your request."  Has anybody run into any problems in requesting copies of their records?

    Meanwhile, about indulging in "depressing wastes of time"  I do  spend  a fair amount of time looking things up (I'm amazed at how many acronyms I've learned about  from this forum alone Smile ) but do try to be discriminating when consulting "Dr. Google" for  advice. I don't watch TV very much- mostly I stream or watch videos of British detective series or read cozy mysteries for escape.  My main  task this past week has been to try working around rain showers and storms to get our garden weeded, planted and adapted so that it will thrive on a fair amount of benign neglect should I  find myself not having the energy or enthusiasm to do much later on.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #12
    Hi Grace

    I agree with Sue, bring a notebook with you. Sit down before you leave and make a list of questions you want to ask. Here are some we asked when my brother went to his onc:

    1. what stage cancer is it?

    2. what is your plan to treat this (which chemo drugs)?

    3. what are the side effects of the chemo drugs and are there ways to help with the side effects?

    4. will I need surgery to remove the tumor?

    5. will I have radiation and chemo and will I get it before and after the chemo or just after/

    6. who are the doctors on my team? what does each one do?

    7. will I need an ostomy or colonoscopy? will it be permanent or temporary?

    8. is this type of cancer curable? treatable?

    9. how long is the treatment (months, years, indefinitely) and how log will I be in the office for treatments?

    10. will I lose my hair? what other side effects should I watch out for and which are serious enough to go to the hospital?

     

    These are just a few that come to mind.

    My brother had no issues with the placement of the port, but he developed clots from the port, so he has to take blood thinners and had an inferior vena cava filter placed in his leg to avoid clots, but this is my brother, it doesn't mean you will need it. The port has been a blessing for him because the nurses have issues getting blood from him.

     

    Good luck! Keep us posted.

    Lin

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #13
    lizard44 said:

    Thanks for  the response,

    Thanks for  the response, John212. I'm planning on asking for the pathology reports, CT results, etc. for my records when I go to the hospital to meet with the oncologist tomorrow.  In reading through the  patient information booklet on patient's rights, this section concerned me a little: "The Right to Inspect and Copy Your Medical Information. You have the right to inspect and copy your medical information that we may use to make decisions about you. In limited circumstances, we do not have to agree to your request."  Has anybody run into any problems in requesting copies of their records?

    Meanwhile, about indulging in "depressing wastes of time"  I do  spend  a fair amount of time looking things up (I'm amazed at how many acronyms I've learned about  from this forum alone Smile ) but do try to be discriminating when consulting "Dr. Google" for  advice. I don't watch TV very much- mostly I stream or watch videos of British detective series or read cozy mysteries for escape.  My main  task this past week has been to try working around rain showers and storms to get our garden weeded, planted and adapted so that it will thrive on a fair amount of benign neglect should I  find myself not having the energy or enthusiasm to do much later on.

    Way to go!

    I'm English, and excited to hear that you like British detective programs. Did you watch the one called 'Endevour'? It was Instector Morse as a newly trained officer. I loved it. Quirky!

    Sue - Trubrit

Discussion Boards