Had CT Scan suggesting cancer...looking for hope

leesag
leesag Member Posts: 621 Member
edited March 2014 in Ovarian Cancer #1
Hi,

I've not been officially diagnosed yet, but I had a CT Scan today and my doctor called me within two hours. Apparently the CT scan indicated "carcinomatosis" and "probable metastic ovarian cancer." All routine blood work was completely normal. I had a transvaginal ultrasound and will see my GYN on Monday. Any advice/words of hope from anyone with a similar pre-diagnosis report?

I'm scared, but still hopeful that all will be well and looking to develop a plan of action. The first thing I plan to ask for is a CA125 test!

Thanks for your help! Everyone here seems so brave and upbeat, reading through the posts already has boosted my spirits!

L

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Lee, you are in a good place
    I am relatively new, but the people here are just the best, and they totally understand whatever you might be going through.

    I was pre-diagnosed via a phone call from my PCP, too, following the trans vaginal and abdominal ultrasound. My cancer is stage 3c, the most common stage at diagnosis. I had no family history or risk factors and no long-term symptoms.

    You want to be treated by a GYN Oncologist - a specialist within a specialty. Studies show that women treated by a doctor who specializes in female reproductive cancer live longer than those who elect treatment by a general oncologist.

    Standard treatment is either debulking surgery, followed by chemo, or chemo, then the surgery, then more chemo. Some doctors place an IP port during surgery and administer a "belly wash" of chemo after recovery.

    Most of us are on, or have been on, Carboplatin and Taxol for the first line of chemo defense. You can Google those two drugs and find out more about their side effects, etc.

    My CA125 prior to surgery was 4,000 and after 4 chemo sessions, it was 19. However, recurrance 6-12 months after completing initial treatment is common with OVC.

    I am not particularly brave, but I am stubborn.

    Carlene
    I am not afraid of storms; I am learning to sail my ship....Louisa May Alcott
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    scared, but still hopeful
    Dear Lee, There is always Hope whether it proves to be cancer or not. Not sure what sent you to the Dr but great doc to do a ctscan right away. My only words of advice at this point is have someone with you for the dr visit, they hear things you miss or sometimes even a bit different. Sending you lots of prayers and hugs Bonnie
  • Mawty
    Mawty Member Posts: 133
    #4
    BonnieR said:

    scared, but still hopeful
    Dear Lee, There is always Hope whether it proves to be cancer or not. Not sure what sent you to the Dr but great doc to do a ctscan right away. My only words of advice at this point is have someone with you for the dr visit, they hear things you miss or sometimes even a bit different. Sending you lots of prayers and hugs Bonnie

    Best advice
    Bonnie, you really hit the nail on the head. Having someone with you is so important. I know I've forgotten or misheard things my doctors have said. My friend or my husband are there to take notes and be a second ear, and that has saved me from many panic sessions because I've only heard the worst things and not the other parts that say there's hope and all kinds of drugs to help this disease.

    Marty
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    Write questions
    Take written questions with you. I had the CT first. Take a note pad and someone to take notes with you too. Ask where you should go for treatment. You need a gyn/onc for the surgery regardless. Outcome is much better this way. I had to have chemo before the surgery to shrink the tumors. This will be a long weekend, but keep busy doing fun stuff. We are here for you should you have more questions or anything.
    (((HUGS))) Saundra
  • leesag
    leesag Member Posts: 621 Member
    #6
    saundra said:

    Write questions
    Take written questions with you. I had the CT first. Take a note pad and someone to take notes with you too. Ask where you should go for treatment. You need a gyn/onc for the surgery regardless. Outcome is much better this way. I had to have chemo before the surgery to shrink the tumors. This will be a long weekend, but keep busy doing fun stuff. We are here for you should you have more questions or anything.
    (((HUGS))) Saundra

    What questions should I ask?
    Thank you all so much. I keep saying out loud that we don't have a definitive diagnosis yet, but in my head, "cancer" is the word that I'm hearing. This site has been a tremendous source of hope for me any time I start to feel overwhelmed. (As those of you on the east coast might be able to tell since I'm posting at 4 a.m.)

    Right now, I'm just feeling very lost and bloated. No one could tell me where to go to get Paracentisis for my ascites on Friday. What kind of doctor do I call for that, by the way? This patching together of doctors and tests on my own is very frustrating.

    Also, if you could suggest some questions that I should ask, I would be grateful. I just can't seem to get my head around things.

    Again, thank you all so very much. You have touched my life and given me more in the two days since I got CT results, than most people can ever imagine!

    Thank you, thank you, thank you!
  • Barbara53
    Barbara53 Member Posts: 652
    #7
    leesag said:

    What questions should I ask?
    Thank you all so much. I keep saying out loud that we don't have a definitive diagnosis yet, but in my head, "cancer" is the word that I'm hearing. This site has been a tremendous source of hope for me any time I start to feel overwhelmed. (As those of you on the east coast might be able to tell since I'm posting at 4 a.m.)

    Right now, I'm just feeling very lost and bloated. No one could tell me where to go to get Paracentisis for my ascites on Friday. What kind of doctor do I call for that, by the way? This patching together of doctors and tests on my own is very frustrating.

    Also, if you could suggest some questions that I should ask, I would be grateful. I just can't seem to get my head around things.

    Again, thank you all so very much. You have touched my life and given me more in the two days since I got CT results, than most people can ever imagine!

    Thank you, thank you, thank you!

    where to go
    How confusing all this must be! As Saundra said, you should locate a specialist if surgery is recommended, because this is a complicated disease. From there, his or her team will set you up with various resources. I think most stick with a primary hospital, so that most of the tests and procedures are done in one place. I've heard of paracentesis being done in office, but when I asked my Mom's oncologist's nurse, she said it would be done in the ultrasound outpatient department at the hospital. I accompanied Mom when she had a cyst drained there, and it was painless and interesting because you got to watch so much on the screens.

    We need a shorter phrase for oncologist's RN, because they become a crucial member of your team for information and referrals.

    You will feel better soon when fear of the unknown is replaced by information you can use to keep living well for a long, long time.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #8
    leesag said:

    What questions should I ask?
    Thank you all so much. I keep saying out loud that we don't have a definitive diagnosis yet, but in my head, "cancer" is the word that I'm hearing. This site has been a tremendous source of hope for me any time I start to feel overwhelmed. (As those of you on the east coast might be able to tell since I'm posting at 4 a.m.)

    Right now, I'm just feeling very lost and bloated. No one could tell me where to go to get Paracentisis for my ascites on Friday. What kind of doctor do I call for that, by the way? This patching together of doctors and tests on my own is very frustrating.

    Also, if you could suggest some questions that I should ask, I would be grateful. I just can't seem to get my head around things.

    Again, thank you all so very much. You have touched my life and given me more in the two days since I got CT results, than most people can ever imagine!

    Thank you, thank you, thank you!

    Very scary
    Hi,
    I know it is very scary and alot to absorb. I think I was in shock for the first 2 weeks. I can't believe your doctor couldn't recommend where to get a paracentisis. I would definately make an appointment with a gyn who specializes in cancer. I, personally, would prefer to go to a major cancer center. Try not to do too much reading on the internet - it is very scary!!!! Have you had an bowel issues? With your ca125 and ct results find a gyn oncologist and take it from there. I'm really not sure what questions to ask. They will probably give you the basic information you need. Good luck and keep us updated!!!
    Nancy
  • twocatsandjack
    twocatsandjack Member Posts: 1
    #9
    CT suggesting cancer
    I've been there and done that. I just could not believe it. I found that my obgyn and my family were very helpful when it came to finding the best oncologists available. You can get through this
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #10
    twocatsandjack said:

    CT suggesting cancer
    I've been there and done that. I just could not believe it. I found that my obgyn and my family were very helpful when it came to finding the best oncologists available. You can get through this

    Paracentisis
    Any doctor can order a paracentisis thru the hospital where he has privileges. Mine was done pre-surgery, at the hospital, but I don't remember if my PCP or the GYN Oncologist, whom I had only seen once, orderded it.

    They drained 3 liters of fluid from my abdomen and I did feel much better afterward. Generally, they wail until a week or so before your surgery to do this, as the fluid comes back quickly. Chemo stops the ascites from recurring.

Discussion Boards