Question and need a pick me up.

jbeans888
jbeans888 Member Posts: 313
For all you ladies who have or have been going thru chemo did you get scans during the process? My oncolgist told me that after my 6 rounds of chemo they will then give me a scan to see if the coast is clear. My gyn/ onc said they got the big stuff just some residual left on my liver and the chemo will kill it. I have 2 more chemo left and I think I am going crazy. I want to know, I want to know now. I have been getting so anxious even anxiety pills hardly work. Even though I lost 25 lbs I constantly think I am bloated and every day I wonder if I pee too much. What is normal amount to pee anyway? I read statistics and commets on the bored and I feel like am sentenced to a life of constant cancer worry even if I do get ned for awhile because they statistics suck. I just want peace of mind.

Comments

  • tjpt16
    tjpt16 Member Posts: 27
    Hang in there
    Just think that those two more chemos will give the medicine more time to work. It is hard to live with this, but one thing that works for me is doing all my normal day to day activities.

    Teresa
  • srwruns
    srwruns Member Posts: 343
    scanned 3 weeks after chemo
    scanned 3 weeks after chemo to give the final chemo a chance to do it's stuff also. Are you having CA125 done during chemo? I had one every time...that can give an indication as to your status. Yes, I peed ALOT because I drank water constantly. Still do.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    I did not get a scan until
    I did not get a scan until my 8 rounds of first line chemo were finished. Then I got one at the end of maintenance - a year later.

    You probably aren't bloated. The bloating is a sign of ascites and it's unlikely you would have ascites while on chemo.

    Your urine output is not indicitive of anything. Urinary urgency - the feeling that you need to pee - can be a sign of OC, but it is also a symptom of urinary tract infection. Usually, with urinary urgency, you don't pee a lot - you just think you have to pee every 5 minutes, but nothing comes out.

    Now that I have said all that, I must confess that a couple of months ago, I called my family together and gave them "the bad news" - I was convinced I had a recurrence. I was suffering intense urinary urgency and I had a pain below my sternum, just like before I was diagnosed. I was scheduled for a CT scan and fully expected the worst. Instead, my CT revealed a hiatial hernia - the source of the pain - and a UA showed a really bad urinary tract infection. And my CT scan? The doctor said it "couldn't have been better."

    Moral of this story....it's not always about the cancer.

    Carlene
  • jbeans888
    jbeans888 Member Posts: 313
    Ca125
    I have had my ca125 read every time also, but from the beginning it was only at 75
    with stage IIIc. My oncologist said because it was a low high It's not a great tumor marker, but it is something. But last time they checked it was at 13 after my third chemo. At least it is going down so I guess that is good they seemed okay with it.
  • Tethys41
    Tethys41 Member Posts: 1,381 Member
    jbeans888 said:

    Ca125
    I have had my ca125 read every time also, but from the beginning it was only at 75
    with stage IIIc. My oncologist said because it was a low high It's not a great tumor marker, but it is something. But last time they checked it was at 13 after my third chemo. At least it is going down so I guess that is good they seemed okay with it.

    Worrying is a tough habit to break
    Jbeans,

    Telling you not to worry won't really help, I know. But stress is not your friend, especially now. It appears that no CT scan until after chemo is the norm. It's scary not knowing, but it wouldn't really help you now to know if there is still something in there since your treatment is not over. The chemo is still doing it's work, and you really won't know the outcome until the treatment is done.

    You could ask your doctor if (s)he will add the HE4 test to your CA-125. This test measures a protein associated with cancer and may be a more helpful indicator when the CA-125 alone is not. Aside from that, my advice would be for you to find some way to reduce your stress. Do things you enjoy that shift your focus away from your fears. I don't know what works for you, meditation, taking a nice bath, exercise, but do something to reduce your stress. It wasn't until I got past my worry that my condition started to improve. During chemo, I wondered whether I would always live with the fear of recurrance, but it has been easier than I thought to eliminate my fear. There is a book you may be interested in reading called "You Can't Afford the Luxury of a Negative Thought."

    Whatever you do, don't dwell on the statistics. Statistics are not YOU.

    I hope you find peace.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    Tethys41 said:

    Worrying is a tough habit to break
    Jbeans,

    Telling you not to worry won't really help, I know. But stress is not your friend, especially now. It appears that no CT scan until after chemo is the norm. It's scary not knowing, but it wouldn't really help you now to know if there is still something in there since your treatment is not over. The chemo is still doing it's work, and you really won't know the outcome until the treatment is done.

    You could ask your doctor if (s)he will add the HE4 test to your CA-125. This test measures a protein associated with cancer and may be a more helpful indicator when the CA-125 alone is not. Aside from that, my advice would be for you to find some way to reduce your stress. Do things you enjoy that shift your focus away from your fears. I don't know what works for you, meditation, taking a nice bath, exercise, but do something to reduce your stress. It wasn't until I got past my worry that my condition started to improve. During chemo, I wondered whether I would always live with the fear of recurrance, but it has been easier than I thought to eliminate my fear. There is a book you may be interested in reading called "You Can't Afford the Luxury of a Negative Thought."

    Whatever you do, don't dwell on the statistics. Statistics are not YOU.

    I hope you find peace.

    EMDR might help you
    JB: Have you read the Anticancer book? There is a chapter in that book that talks about something called EMDR (eye movement desensitization and reprogramming). It sounds like you would really benefit from EMDR therapy.

    Although I am not a therapist, I did have EMDR done for post-traumatic stress (to deal with being raped many years ago) and it was AMAZING! No words can describe the difference the therapy made in my life. Before the therapy, I was stuck in fear and now I feel like EMDR really changed my life.

    It sounds to me that you have post-traumatic stress from your recent experiences. I don't think you have recovered from the orginal shock of being told that you were going in for dermoid cysts and coming out of surgery with not only the cancer diagnosis but also the loss of your fertility. That was an unbelievably HUGE shock and I don't think anxiety pills can really heal you. From what you have shared with us, it sounds like it has been one shock after another, too.

    I totally understand where you are coming from and I wish that I had x-ray vision to see what's going on in my belly...I am always palpating and massaging my belly so that I can get to know it really well. The area where I have the bowel resection sometimes acts up but then it calms down again.

    You have an ileostomy and I don't know what that is like so I can't comment on whether or not you are bloated. If you had a return of ascites, you might pee in small frequent amounts or have the feeling like you still need to urinate even after you empty your bladder. Like Carlene said, the symptoms are the same if you have a urinary tract infection...it isn't always about ascites coming back.

    Thank you for sharing with us and for letting me share with you.

    (((hugs)))

    LQ
  • msfanciful
    msfanciful Member Posts: 559
    Hi there,
    I didn't have my

    Hi there,

    I didn't have my first cat-scan until after my 8th round of chemo (about 3 weeks after).

    From that point until the present I have had several scans throughout the years (since 2007); and have just had my first pet-scan (about 2 weeks ago now).

    During my treatment/maintenance process, every 3-months lab work would be done and depending on the ca-125 numbers (as long as they remained under 35) I was considered in remission. As a note I have been in remission at least 3 times to date. One thing though as a stage iv ovca patient, we knew that my numbers would always rise to some degree, my oncologists' issue was how fast they rose (i.e., doubling or tripling) when they rose. If it seemed suspicious to her, she would order a cat-scan immediately.

    Usually, her suspicions were right on the money and another/new round of chemotherapy would be ordered which always threw me back into remission for a period of time. This most recent remission for me currently is now almost 8 months!

    Now, I am having radiation treatments to treat these 2 para-aortic nodes that keep presenting themselves when my treatments are completed.

    Chemo does clean up tumors (most times) pretty well and it will make you feel like you have just lost everything human about yourself, but stay strong and don't let it kill your spirit.

    I'm keeping you in my thoughts

    Sharon
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member

    Hi there,
    I didn't have my

    Hi there,

    I didn't have my first cat-scan until after my 8th round of chemo (about 3 weeks after).

    From that point until the present I have had several scans throughout the years (since 2007); and have just had my first pet-scan (about 2 weeks ago now).

    During my treatment/maintenance process, every 3-months lab work would be done and depending on the ca-125 numbers (as long as they remained under 35) I was considered in remission. As a note I have been in remission at least 3 times to date. One thing though as a stage iv ovca patient, we knew that my numbers would always rise to some degree, my oncologists' issue was how fast they rose (i.e., doubling or tripling) when they rose. If it seemed suspicious to her, she would order a cat-scan immediately.

    Usually, her suspicions were right on the money and another/new round of chemotherapy would be ordered which always threw me back into remission for a period of time. This most recent remission for me currently is now almost 8 months!

    Now, I am having radiation treatments to treat these 2 para-aortic nodes that keep presenting themselves when my treatments are completed.

    Chemo does clean up tumors (most times) pretty well and it will make you feel like you have just lost everything human about yourself, but stay strong and don't let it kill your spirit.

    I'm keeping you in my thoughts

    Sharon

    had my scan after 6 rounds of chemo
    I think this is normal for most dr. If they see anythink you would get more chemo. hink positive and enjoy everyday. A good friend of mine told me " don't worry until you have to" and I think he is right...val
  • Tethys41
    Tethys41 Member Posts: 1,381 Member

    EMDR might help you
    JB: Have you read the Anticancer book? There is a chapter in that book that talks about something called EMDR (eye movement desensitization and reprogramming). It sounds like you would really benefit from EMDR therapy.

    Although I am not a therapist, I did have EMDR done for post-traumatic stress (to deal with being raped many years ago) and it was AMAZING! No words can describe the difference the therapy made in my life. Before the therapy, I was stuck in fear and now I feel like EMDR really changed my life.

    It sounds to me that you have post-traumatic stress from your recent experiences. I don't think you have recovered from the orginal shock of being told that you were going in for dermoid cysts and coming out of surgery with not only the cancer diagnosis but also the loss of your fertility. That was an unbelievably HUGE shock and I don't think anxiety pills can really heal you. From what you have shared with us, it sounds like it has been one shock after another, too.

    I totally understand where you are coming from and I wish that I had x-ray vision to see what's going on in my belly...I am always palpating and massaging my belly so that I can get to know it really well. The area where I have the bowel resection sometimes acts up but then it calms down again.

    You have an ileostomy and I don't know what that is like so I can't comment on whether or not you are bloated. If you had a return of ascites, you might pee in small frequent amounts or have the feeling like you still need to urinate even after you empty your bladder. Like Carlene said, the symptoms are the same if you have a urinary tract infection...it isn't always about ascites coming back.

    Thank you for sharing with us and for letting me share with you.

    (((hugs)))

    LQ

    Bowel Resection
    LQ,
    When you say that sometimes the area where you had the bowel resection acts up, what are your symptoms when this happens? I sometimes get a burning sensation around the two upper resections I had, and now, while exercising, if I "fold over" in just the wrong spot, I get a really sharp pain around the left one.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    Tethys41 said:

    Bowel Resection
    LQ,
    When you say that sometimes the area where you had the bowel resection acts up, what are your symptoms when this happens? I sometimes get a burning sensation around the two upper resections I had, and now, while exercising, if I "fold over" in just the wrong spot, I get a really sharp pain around the left one.

    Yeah, like you describe--
    Yeah, like you describe-- the area just seems inflamed at times. But then it settles down and feels normal again. I think about adhesions sometimes & attempt to keep them from tightening up around my bowels (both large & small) by doing massage.

    Now I am using essential oil of Rosemary as I read that it had antiangiogenesis properties. I would never have used it within 6 weeks of surgery as it might have delayed the healing of the colon resection.

    LQ
  • jbeans888
    jbeans888 Member Posts: 313
    Thanks ladies for the
    Thanks ladies for the responses you all are the best. I have been having a tightness in my stomach so I called my gyn/ onc i go tomorrow. I hope it's just scar tissue and nothing serious. I am getting the anti cancer book. Trying to postive but it's hard lately. I love this site because when I need the support you are here. Thank you.
  • geek_girl_JW
    geek_girl_JW Member Posts: 2
    living with it
    Hi jbeans,

    My doctors have relied on my CA-125, since it was around 16,000 at the worst point, and now it's in the normal range, so it's a good indicator. I say forget about the statistics, stop reading them, they cannot accurately predict what YOUR future will be! To me, the real battle with cancer takes place in the mind. I too tend to worry and obsess, so that's what I really had to go to work on. A friend who went through cancer before I did told me "it's hard to explain, but you will learn to live with it." I found that with time, the obsessing over cancer lessened, and I too learned to live with it.

    Reading the Bible, praying, and talking it out have all helped me tremendously. I don't know how you feel about the Bible, but I have found that it is very true what it says about having hope - that hope is "an anchor for the soul" - Hebrews 6:19. Here are some of my other fav's that encourage a positive mental outlook:
    Proverbs 17:22 - "A heart that is joyful does good as a curer, but a spirit that is stricken makes the bones dry." 
    Proverbs 14:30 - "A heart at peace gives life to the body."
    Proverbs 24:10 - "Have you shown yourself discouraged in the day of distress? Your power will be scanty."

    I hope this helps you on the road to find peace!
  • kikz
    kikz Member Posts: 1,345 Member
    jbeans
    It is normal to stress about everything at first but I think in time you will start to take things in stride. I had three scans during treatment but it was not the normal procedure. I ended up in the ER for severe pain after my first chemo then for low blood count and finally for low electolytes. Once I was finished with chemo I had the scan that told how it all turned out. I think about my situation every day, every other minute but I find that most of the time there is not a lot of emotion attached to it. Once in a while I may cry for a few minutes but I refuse to let cancer control my life. I work very hard to remain upbeat. I do it for myself and for my family and friends who deserve to have the real me not the cancer victim in their lives. Best of luck on your treatment.

    Karen
  • Mwee
    Mwee Member Posts: 1,338
    statistics
    Those d*mn statistics used to haunt me day and night. Your CA-125s are fab and heres a factoid for you..... I was diagnosed 3C in May 2006. This may sound silly, but I always tell people that I'm very healthy except for cancer :). Your anxiety sounds very normal to me. I wish I could tell you that you will go back to the same peace of mind that you once had. You will find a new normal.
    (((HUGS))) Maria
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    It takes time
    I thought I handled everything well the surgery ,the diagnosis the chemo. But now that I look back it was a process. My thoughts were always on cancer everytime I looked in the mirror I thought cancer. I still stress about my numbers and tests and scans but it dosen't take over my whole life . I am now living with canccer instead of just having cancer.
    Give it some time you will find it getting better , you have been thru alot your mind a nd body need to heal and process what has happened. You are still in chemo try to relax ( I know its not easy ) do someething you really enjoy, spoil yourself a little. Take Care it does get better !
    Colleen
  • MK_4Dani
    MK_4Dani Member Posts: 314

    I did not get a scan until
    I did not get a scan until my 8 rounds of first line chemo were finished. Then I got one at the end of maintenance - a year later.

    You probably aren't bloated. The bloating is a sign of ascites and it's unlikely you would have ascites while on chemo.

    Your urine output is not indicitive of anything. Urinary urgency - the feeling that you need to pee - can be a sign of OC, but it is also a symptom of urinary tract infection. Usually, with urinary urgency, you don't pee a lot - you just think you have to pee every 5 minutes, but nothing comes out.

    Now that I have said all that, I must confess that a couple of months ago, I called my family together and gave them "the bad news" - I was convinced I had a recurrence. I was suffering intense urinary urgency and I had a pain below my sternum, just like before I was diagnosed. I was scheduled for a CT scan and fully expected the worst. Instead, my CT revealed a hiatial hernia - the source of the pain - and a UA showed a really bad urinary tract infection. And my CT scan? The doctor said it "couldn't have been better."

    Moral of this story....it's not always about the cancer.

    Carlene

    UTI and scans
    Yep, I thought it was back too when I had the classic symptoms of a UTI. I had to chuckle to myself that I had a "normal" ailment.

    I did not have a scan until all chemo was complete. It is tough to wait for the scans because it is such a pivotal milestone in the battle.

    Hang in there,
    Mary