New diagnosis - kind of scared

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VickiCO
VickiCO Member Posts: 917
edited March 2014 in Colorectal Cancer #1
During what I thought was a routine colonoscopy on Wednesday (10/22) I was diagnosed with a malignant mass in my rectum. I have a CT scan tomorrow morning, and an EUS imaging later this week. My gastroenterologist is a wonderful doctor, and I trust him to find me the best team, but what should I expect? I am not sure I even know all the questions to ask...

BTW, I am 58, own my business and am usually reasonably intelligent. This has rendered me less sure of my own knowledge. I can read the words, but understanding is something else! LOL!
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  • blverrette
    blverrette Member Posts: 9
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    I've been there
    Vicky,
    I was 36 years old when I had my first Colonscopy, and they found a cancerous mass 1/2 cm from the base of my rectum. Let me tell you a little bit about my journey with this, and that might tell you something. On 9/11/06 I was diagnosed with colon/rectal cancer. The mass in my rectum was 4" x 2 1/2". On 9/25/06 I started 6 weeks of radiation, and 5FU chemo infusion. I would go in every day Monday through Friday to get what I called "get cooked" by the radiation. And, on Monday mornings I would go into the chemo center to get a chemo pump put on that I wore 24/7 for the entire Monday through Sunday. On 11/1/06 I finished, and they let my body heal until my surgery on 12/21/06. You will get burns inside your rectal folds. It will be a little painful to wipe after a bowel movement, but there are creams that can help. You have to make sure you tell your radiation oncologist everything you are experiencing. During my surgery they removed my entire colon, and my rectum. I had a disorder called FAP. FAP is where you have polyps in your colon at a very early age. So, my colon was very diseased. Don't know if you will have to have it removed. But, with all the damage the radiation caused and where the mass was located I have been given a permanent Ileostomy. On 2/12/07 I started my second round of chemo, because 25% of the lymphnodes they removed were tested positive for cancer. So, the cancer had started to spread. I went through 12 chemo treatments over the next 7 months. So, I would say one question to ask is how close is the mass to the base of the rectum? Will I need to go through radiation before the surgery to try and reduce the size of the mass? One thing that the CT scan will be able to tell if it has traveled anywhere else, and mastesized. Talk to your doctor about Colostomy or Ileostomy. Also, if he tells you they will do a Rectum Ultrasound ask to be put under. I went through one, and due to how close the mass was to the base of my rectum it was very painful. I am a big guy, and it took my wife, 3 doctors and 2 nurses to keep me on the table. I am sorry to be so blunt, but I believe knowledge is power. Also, you need to remember a couple of things. One, I made it through it and it has not stopped me at all. If for anything it has empowered me. Second, you are NOW a SURVIVOR. The definition from ACS is that you are a SURVIVOR the day before you are diagnosed. So, keep up the fight. If you want to talk more in depth you can e-mail me at blverrette08@cox.net

    Brian
  • jenjerandkatesmom
    jenjerandkatesmom Member Posts: 37
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    Sorry about your diagnosis
    I am so sorry to hear about your diagnosis. You must be in shock to get this news after having a routine screening but thank God that you had the colonoscopy. If you have never had a CT scan before I can let you know it's really not much of a concern. You will need to drink some contrast liquid that tastes better if it's cold. They will also give you an IV contrast which also is not much concern. The IV contrast causes a warm sensation to go through your body and this lasts just a minute. The entire scan (chest, abdomen and pelvis)takes about 20 minutes. The rectal ultrasound prep is just a fleets enema right before the test. The probe is uncomfortable for a little bit, but this test is quick too. The ultrasound and the CT give the docs the information they need to "stage" the cancer which helps them determine the treatment plan.
    You might be feeling like you are on an emotional roller coaster right now which has absolutely nothing to do with intelligence..it's just part of being human and dealing with a situation with a lot of unknowns. I can tell you that I felt better after I knew my options for treatment. Also need to tell you that this message board will be sooo valuable to you as you take this journey. Take it a day at a time and don't forget that life will have it's wonderful humorous moments that it's always had. Sending you a hug and will keep you in my prayers.
    -Sharon
  • VickiCO
    VickiCO Member Posts: 917
    Options

    I've been there
    Vicky,
    I was 36 years old when I had my first Colonscopy, and they found a cancerous mass 1/2 cm from the base of my rectum. Let me tell you a little bit about my journey with this, and that might tell you something. On 9/11/06 I was diagnosed with colon/rectal cancer. The mass in my rectum was 4" x 2 1/2". On 9/25/06 I started 6 weeks of radiation, and 5FU chemo infusion. I would go in every day Monday through Friday to get what I called "get cooked" by the radiation. And, on Monday mornings I would go into the chemo center to get a chemo pump put on that I wore 24/7 for the entire Monday through Sunday. On 11/1/06 I finished, and they let my body heal until my surgery on 12/21/06. You will get burns inside your rectal folds. It will be a little painful to wipe after a bowel movement, but there are creams that can help. You have to make sure you tell your radiation oncologist everything you are experiencing. During my surgery they removed my entire colon, and my rectum. I had a disorder called FAP. FAP is where you have polyps in your colon at a very early age. So, my colon was very diseased. Don't know if you will have to have it removed. But, with all the damage the radiation caused and where the mass was located I have been given a permanent Ileostomy. On 2/12/07 I started my second round of chemo, because 25% of the lymphnodes they removed were tested positive for cancer. So, the cancer had started to spread. I went through 12 chemo treatments over the next 7 months. So, I would say one question to ask is how close is the mass to the base of the rectum? Will I need to go through radiation before the surgery to try and reduce the size of the mass? One thing that the CT scan will be able to tell if it has traveled anywhere else, and mastesized. Talk to your doctor about Colostomy or Ileostomy. Also, if he tells you they will do a Rectum Ultrasound ask to be put under. I went through one, and due to how close the mass was to the base of my rectum it was very painful. I am a big guy, and it took my wife, 3 doctors and 2 nurses to keep me on the table. I am sorry to be so blunt, but I believe knowledge is power. Also, you need to remember a couple of things. One, I made it through it and it has not stopped me at all. If for anything it has empowered me. Second, you are NOW a SURVIVOR. The definition from ACS is that you are a SURVIVOR the day before you are diagnosed. So, keep up the fight. If you want to talk more in depth you can e-mail me at blverrette08@cox.net

    Brian

    Thanks Brian
    I am a realist, so I appreciate bluntness. It's the not knowing that I struggle with. And my doc also said I should be sedated for the ultrasound. I have developed hemorrhoids due to all the tests so far (I probably had them before but they didn't bother me - now they do!) Yes, I am a SURVIVOR. I had both cervical and uterine cancer in 1994, 100% cured by surgery. I am told this looks like a new cancer, not an endometrial recurrence - aren't I lucky? They say things come in threes!

    For now I just wait for the staging. On Nov 4 I meet with an oncologist and we'll have everything put together in a plan. My gastro doc calls me with each new test, so that I don't have to wait & worry. I like this guy...

    Thanks for the support.

    Vicki
  • KathiM
    KathiM Member Posts: 8,028 Member
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    53 here, small business owner, 2" tumor in first rectal fold....
    4 years ago (I was 49...blush), I sat where you are sitting. Add supporting 2 disabled kids to that.

    Take heart, you will become an expert at the lingo (sadly). First and foremost, ALWAYS carry a notepad...write down questions, etc for the doctor. AND never be afraid to ask when you don't understand...YOU are the MOST important part of your treatment team!

    Take someone with you when you visit the doctor, if possible..."You have cancer" seems to mess with our hearing...lol.

    Ask for a copy of all of your labs/test results. Even if YOU don't understand them, that way you have a full medical record you can ask others about.

    Remember that this is just something to get thru....I had chemo/radiation first to shrink the tumor (it was so close to the spinchter that surgery needed to wait), and then a bowel resection that removed my rectum, sigmoid colon, and made a new rectum out of part of my descending colon.

    BUT this is NOT about ME! THIS is about YOU!!! Give yourself a hug, RIGHT NOW!!!

    Come here frequently, post questions (AGAIN, not a one is stupid!). We are one of the best tumor boards around (TeeHee!).

    I am about to round 4 years since diagnosis. Not only am I cancer free, but my 'rectum' can stand up to almost anything, including a severe bout of stomach flu.

    Hugs, Kathi
  • VickiCO
    VickiCO Member Posts: 917
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    Thanks Everyone
    It helps to know others are here and that I have someplace to turn to. I am trying very hard to retain my sense of humor. I named my tumor Fred so that I have someone to fight against. My doc put that in my chart.

    I'll post again tomorrow after the CT scan. At least then I'll know what stage it ISN'T.

    Vicki
  • VickiCO said:

    Thanks Everyone
    It helps to know others are here and that I have someplace to turn to. I am trying very hard to retain my sense of humor. I named my tumor Fred so that I have someone to fight against. My doc put that in my chart.

    I'll post again tomorrow after the CT scan. At least then I'll know what stage it ISN'T.

    Vicki

    This comment has been removed by the Moderator
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    VickiCO said:

    Thanks Everyone
    It helps to know others are here and that I have someplace to turn to. I am trying very hard to retain my sense of humor. I named my tumor Fred so that I have someone to fight against. My doc put that in my chart.

    I'll post again tomorrow after the CT scan. At least then I'll know what stage it ISN'T.

    Vicki

    Hugggs Vicki!
    Hey Vicki... just thought I'd jump in and welcome you to the Board, as much as I wish we didn't have to. But now that you are here, settle in and we'll all be here with you as you go on the journey.

    I got a chuckle when you said you named your tumour Fred... I called mine Chuck because I had every intention of chucking him right out of my body. Good riddance to bad rubbish, or whatever that saying is :) The doctors surgically removed Chuck and so far, he has not returned... although, the little booger did leave a few offspring in my right adrenal gland and my lungs. Active little devil, wasn't he??? So, as much as I do love children and small critters, I'm afraid Chuck's kidlets are going to have to go too.

    So you give Fred a stern talking to... tell him he is going to be evicted and to not even think of leaving any of his family behind :)

    Huggggggs!

    Cheryl
  • kimby
    kimby Member Posts: 797
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    VickiCO said:

    Thanks Everyone
    It helps to know others are here and that I have someplace to turn to. I am trying very hard to retain my sense of humor. I named my tumor Fred so that I have someone to fight against. My doc put that in my chart.

    I'll post again tomorrow after the CT scan. At least then I'll know what stage it ISN'T.

    Vicki

    Fred
    I named my infusion pump, "chemo to go", Fred. I always knew he was a man because he thinks that since he brings me drugs he can sleep with me, shower with me.....I'm looking for better drugs next time!

    Let's both ditch our Freds!

    Kimby
  • Kanort
    Kanort Member Posts: 1,272 Member
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    Welcome!
    Hi Vicki,

    It sounds like the next few days will be filled with testing and scans. Gathering additional information is very important so that your medical team can decide on your best treatment plan. Of course you are "kind of scared" so come here often for cyber hugs and support. Please keep us posted on your plan of action.

    Hugs,

    Kay
  • vinny3
    vinny3 Member Posts: 928 Member
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    Hi Vicki,

    As much as we hate to welcome more people to this board, we are glad you found it. I was diagnosed with rectal cancer in 2005. Until you get the results of the EUS and CT scan it is hard to tell exactly what your treatment will be. Surgery will surely be part of it. Chemo or chemo plus radiation may be as well. You can find out alot of information about the cancer, staging, treatment, etc on the website of the National Cancer Institute (www.cancer.gov). But please let us know how your tests come out and we will try to tell you our experiences with the recommended treatment. As Kathi indicated, take notes and it is wise to have someone with who can do the same and you can compare the notes later. Feel free to seek another opinion as to treatment options once your doctor has given them to you. You may not know all the questions to ask but feel free to ask your doctor and to ask here. We are hoping that you are at the earliest stage as that makes the treatment simpler.

    ****
  • hopefulone
    hopefulone Member Posts: 1,043 Member
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    Ask questions and be your own advocate
    You've gotten some great advice already. Most important thing is to ask questions and be your own advocate. What you don't understand, ask again until you do understand it and are satisfied with the answers. Welcome and wishing you the best of luck and keep the faith.
    God Bless
    Diane
  • butterfly23
    butterfly23 Member Posts: 256
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    VickiCO said:

    Thanks Everyone
    It helps to know others are here and that I have someplace to turn to. I am trying very hard to retain my sense of humor. I named my tumor Fred so that I have someone to fight against. My doc put that in my chart.

    I'll post again tomorrow after the CT scan. At least then I'll know what stage it ISN'T.

    Vicki

    Polly
    Hi, I'm gald to hear I'm not the only crazy one naming things! I names my port "POLLY" I also told my dr. and it is in my chart! Like you said you have to keep a sense of humor! Also Positive Attitude!!! Good luck with everything! We will be praying for you!
    Karyn
  • VickiCO
    VickiCO Member Posts: 917
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    Ask questions and be your own advocate
    You've gotten some great advice already. Most important thing is to ask questions and be your own advocate. What you don't understand, ask again until you do understand it and are satisfied with the answers. Welcome and wishing you the best of luck and keep the faith.
    God Bless
    Diane

    Survived the CT Scan...
    I had my CT scan this morning. The contrast made me sick (severe nausea), so I have been dealing with that all day. And the doctor promised to talk to me today about it, but the hospital still hasn't sent my files over to him, so I guess I have to wait until tomorrow. That's the hardest part - waiting. Tomorrow morning I will have my first hissy fit if he doesn't have the info.

    Thanks for all the support. It means a lot.

    Vicki
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    VickiCO said:

    Survived the CT Scan...
    I had my CT scan this morning. The contrast made me sick (severe nausea), so I have been dealing with that all day. And the doctor promised to talk to me today about it, but the hospital still hasn't sent my files over to him, so I guess I have to wait until tomorrow. That's the hardest part - waiting. Tomorrow morning I will have my first hissy fit if he doesn't have the info.

    Thanks for all the support. It means a lot.

    Vicki

    CT Scans and MRIs......
    Just prior to starting post op chemo I had an MRI done and ask the tech how long it would take to get a reading on it. He told me they would have the reading and send it to my Oncs office in a couple of hours. All well and good except for the fact that my Oncs office told me that they would call me with the results in 2-3 days......WRONG.....Right after the Cat Scan I walked back over to the Oncs office and told them what I had been told at the Imagery Clinic and also let them know that I wasn't leaving until I knew what the outcome was. I was treated very cordially and they informed me that they would call me that evening with the results, I told them thanks and that I would be waiting on the call. At 4 pm I received a call informing me of my readings. An encapsulated benign tumor about the size of a BB (Meningioma), relief at what I thought was going to be brain lesions... You are in control of a lot of things if you keep your head up and listen and if you don't like what you hear, speak up about it. Its your journey to make, make it as simple as possible for yourself.........God Bless ya
  • kmygil
    kmygil Member Posts: 876 Member
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    Genetics
    Hi Vicki,

    I'm so sorry about your diagnosis, but you have proved that you are a SURVIVOR!!! Everyone here has super advice and gives wonderful support, so you are at the right place.

    I just wanted to add that you may be carrying a gene which causes HNPCC (hereditary non-polyposis colon cancer.) Folks who have this gene (and I really hate statistics, but....) have an 80% chance of developing colon cancer, ~ 75 % chance at uterine cancer, a somewheat smaller chance at ovarian cancer, bladder cancer and kidney cancer. There are also brain cancers associated with this gene. The point of all these numbers is to encourage you to get genetically tested. If you are carrying the gene, this has impact on your family and they should get tested, as well.

    I know you'll come through this, too, but you certainly don't have to do it alone. This board saved my sanity on more than one occasion:)

    Praying for you,
    Kirsten
  • VickiCO
    VickiCO Member Posts: 917
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    Well, here we go
    I just got a call. There is lymph activity in my pelvic area, and spots and fatty deposits on my liver. What does this mean? I'm not sure. I have to undergo quadrant ultrasound tests ASAP, and probably a whole host of other stuff. My head is reeling. My doctor is away until tomorrow morning, but his assistant is rapidly becoming my lifeline. I do know that the sense of urgency in her voice has increased...

    Pray for me. Vicki
  • KathiM
    KathiM Member Posts: 8,028 Member
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    VickiCO said:

    Well, here we go
    I just got a call. There is lymph activity in my pelvic area, and spots and fatty deposits on my liver. What does this mean? I'm not sure. I have to undergo quadrant ultrasound tests ASAP, and probably a whole host of other stuff. My head is reeling. My doctor is away until tomorrow morning, but his assistant is rapidly becoming my lifeline. I do know that the sense of urgency in her voice has increased...

    Pray for me. Vicki

    The spots:
    I have 3 spots on my liver that are identified on every CT scan I have done. They were checked out, both at the beginning with Ultrasound, and later during my resection surgery. They are what they are...fatty cysts.

    I also had one 'interested' lymph node...that's what earned me stage III....

    By the time my chemo/rads were over, everything removed during the surgery was cancer free. My grandfather died from colon cancer, my mom had endometrial (uterine) cancer, and my sister was dx with anal cancer after my dx. Probably genetic, although I never had the test.

    Take a deep breath, we ARE here...

    Hugs, Kathi
  • VickiCO
    VickiCO Member Posts: 917
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    KathiM said:

    The spots:
    I have 3 spots on my liver that are identified on every CT scan I have done. They were checked out, both at the beginning with Ultrasound, and later during my resection surgery. They are what they are...fatty cysts.

    I also had one 'interested' lymph node...that's what earned me stage III....

    By the time my chemo/rads were over, everything removed during the surgery was cancer free. My grandfather died from colon cancer, my mom had endometrial (uterine) cancer, and my sister was dx with anal cancer after my dx. Probably genetic, although I never had the test.

    Take a deep breath, we ARE here...

    Hugs, Kathi

    Spots
    Thanks Kathy,

    My Dad had colon cancer, my Mom uterine, I had uterine and cevical, my sister had uterine...the list goes on. I am supposed to talk to a geneticist, for my daughter's sake. Right now I just want to curl up and cry - and I probably will very soon.

    Vicki
  • KathiM
    KathiM Member Posts: 8,028 Member
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    VickiCO said:

    Spots
    Thanks Kathy,

    My Dad had colon cancer, my Mom uterine, I had uterine and cevical, my sister had uterine...the list goes on. I am supposed to talk to a geneticist, for my daughter's sake. Right now I just want to curl up and cry - and I probably will very soon.

    Vicki

    I know, my daughter hates me....lol!
    I'm also a breast cancer survivor, my mom also.

    So my daughter has the double whammy. She will be mammo'ed and colonoscopy'ed starting at age 30. She says "Thanks alot, mom!" (with a smile). Her dad's family has diabetes and developmental disabilities (she got the disability). So, I laugh and say "You know, sweetheart, you have a septic tank for a gene pool". She is a sweetheart, and was my caregiver....She is still very grateful that I brought her into this world, as I am sure your daughter is also.

    You can do nothing about your ancestors, but you can make your daughter safer by being aware. She will not discount symptoms that others might. I have some sleepless nights worrying about my daughter, but most moms do anyway.

    I am sending you warm, comforting hugs from someone who shares your tears...

    Hugs, Kathi
  • ldot123
    ldot123 Member Posts: 272
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    VickiCO said:

    Well, here we go
    I just got a call. There is lymph activity in my pelvic area, and spots and fatty deposits on my liver. What does this mean? I'm not sure. I have to undergo quadrant ultrasound tests ASAP, and probably a whole host of other stuff. My head is reeling. My doctor is away until tomorrow morning, but his assistant is rapidly becoming my lifeline. I do know that the sense of urgency in her voice has increased...

    Pray for me. Vicki

    Fatty spots
    Hi there,

    I also have what is termed a "fatty" liver. The fat deposit has not changed for a year so apparently no worry there. This discussion board is great! I have only had positive support from everyone here. Hang in there, you can make it through this and we are here for you.

    Cheers, Lance