Just diagnosed

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May41
May41 Member Posts: 3

Ovarian, stage 4b.   Awaiting peritoneal tap, biopsies, then chemo.   Was told that i am not an immediate surgical candidate.  Pretty much in shock.  Began with vague abd. discomfort, 8 wks or so.  Then i noticed a mass. CT and here i am.

am hoping for another Christmas.  We'll see.

 

question for anyone who has undergone the ascites drainage.  Does it hurt enough to warrent requesting light sedation?  Seems like a silly thing to fixate on, but there you are.

 

any response from someone who's had this done so much appreciated!

Comments

  • yamster34
    yamster34 Member Posts: 75
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    I too was diagnosed with

    I too was diagnosed with stage 4 ovarian cancer.  I have had fluid drained from my stomach several times at the hospital. For mine, they gave me a local anesthetic, then put a needle through the muscle, opened the incision a little more with a small knife, and then inserted a small tube and started draining. There was a little pain and discomfort up until the tube was inserted. I could not feel the fluid being drained. After the first time, I was pretty sore following it, but it was not unbearable to me. Each time I had it drained, it became less painful. There was one time they nicked my intestine, which felt like a bad cramp. I was thankful to have gotten a PluerX catheter though. When I had the catheter put in, I was awake the whole time. Thankfully, the doctor strongly recommended that I get pain medication through an IV. This was an outpatient surgery. The first 72 hours after the surgery I had horrible and unbearable pain when I used the stomach muscles at all. There was a cramp that would not release. When I was laying in bed, the pain was not too bad. The day it was done, I was given the IV pain medicine and took 2 Tylonol with Codeine and 1 Oxycodone in 4 hours. All of that medication did very little to relieve the pain. The first 24 hours I rated the pain on a scale from 1-10 as 15. The next 48 hours it was closer to 9 or 10. Aside from having that much pain for a few days, now I love it. My husband and I drain my fluid at home easily and painlessly. Plus, you can clamp the drain briefly when needed. 

  • May41
    May41 Member Posts: 3
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    yamster34 said:

    I too was diagnosed with

    I too was diagnosed with stage 4 ovarian cancer.  I have had fluid drained from my stomach several times at the hospital. For mine, they gave me a local anesthetic, then put a needle through the muscle, opened the incision a little more with a small knife, and then inserted a small tube and started draining. There was a little pain and discomfort up until the tube was inserted. I could not feel the fluid being drained. After the first time, I was pretty sore following it, but it was not unbearable to me. Each time I had it drained, it became less painful. There was one time they nicked my intestine, which felt like a bad cramp. I was thankful to have gotten a PluerX catheter though. When I had the catheter put in, I was awake the whole time. Thankfully, the doctor strongly recommended that I get pain medication through an IV. This was an outpatient surgery. The first 72 hours after the surgery I had horrible and unbearable pain when I used the stomach muscles at all. There was a cramp that would not release. When I was laying in bed, the pain was not too bad. The day it was done, I was given the IV pain medicine and took 2 Tylonol with Codeine and 1 Oxycodone in 4 hours. All of that medication did very little to relieve the pain. The first 24 hours I rated the pain on a scale from 1-10 as 15. The next 48 hours it was closer to 9 or 10. Aside from having that much pain for a few days, now I love it. My husband and I drain my fluid at home easily and painlessly. Plus, you can clamp the drain briefly when needed. 

    OC stage 4

    Thank you yamster.  My doc is a gyn/onc.  I will ask for sedation.   am trying to stay calm and rational.   It's rather difficult.  I very much appreciate your help!

  • wholfmeister
    wholfmeister Member Posts: 315
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    Be British!

    "Keep Calm and Carry On."  Don't let your mind race too far ahead! You need to keep a level head these next few months...lots of appointments, new doctors, new words, decisions...you need to stay in the moment and not think dark thoughts.  There is every reason to believe you will have a joyful Christmas!  Most of us are not immediate candidates for surgery.  Most of us have three to six rounds of chemo before surgery.  It makes it much easier for the surgeon and it's your best chance for survival.

    I have not had to deal with ascites, so I can't advise you there.  But lots of women can Tell you their experiences with it.  We are all familiar with the dizzying fear and worry you are going through.  Just breathe, and ask questions.  You are going to see a better day!

  • Susan P
    Susan P Member Posts: 103
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    Be British!

    "Keep Calm and Carry On."  Don't let your mind race too far ahead! You need to keep a level head these next few months...lots of appointments, new doctors, new words, decisions...you need to stay in the moment and not think dark thoughts.  There is every reason to believe you will have a joyful Christmas!  Most of us are not immediate candidates for surgery.  Most of us have three to six rounds of chemo before surgery.  It makes it much easier for the surgeon and it's your best chance for survival.

    I have not had to deal with ascites, so I can't advise you there.  But lots of women can Tell you their experiences with it.  We are all familiar with the dizzying fear and worry you are going through.  Just breathe, and ask questions.  You are going to see a better day!

    juse diagnosed

    Hi I had a 4" tumor on  my left ovary & probably had 6+ drains of ascites - my first was 8 liters  I was always given a loclocal- numbing injection  in my side bwehore the y inserted the drain tube I have a high pain tolerence - don't mnd needles found it kind of interesting - not only did I need it done , I wanted it done because of the discomfort & the internal pressure  incresed my stroke-related incontenence.   Once the drain is inserted- you just lay there & visit & watch them change bags & bottles.

     

    After the 8 liters - I had a couple more fairky big drains before until the chemo started working  - thenh only 1 or 2 more before tx was done.

     

     

    As I saikd for me It wasn't a big deal - plus the liquid gave my gyne Onc patology info as to my particular cancer cells  for TTx

     

    decisions.

     

    Re surgery my doc wanted to treat the tumors & ashrink them as much as possible  thereby reducing the amount of tissue damage wheres he cut tumors out.  the best thing fore me aout this site was seeing that my Tx's pretty much matched  every one elses - & I was getting standard Tx for Ov Ca.

     

    I started with a CA # of 4,000. before surgery & chemo.  after my postr surgery chemo I hit 16-

    Apr 1 was my one-year anniversary of NED (nio evidence of disease.   cA # runs in the 30 rrange & I go every 3 months for check up.

     

     

     

     

     

     

     

    As with bything new - the first time is the worst even though it sounds bad - it really isn't .  it was certainly woth it to relieve the pressure & discomfort.

     

     

     

    Any more questions - come back & ask I've learned knowledge & understanding is power and that no amount of worry will change anything

    right mow the year odiof Tx & surgeryt is becoming just an old memory.

     

    Susan P  from southern Alberta Canada & TX & WY

     

    PS on your next post pls sign offwith your first name so we know what to call you.

     

     

     

     

     

  • yamster34
    yamster34 Member Posts: 75
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    We are always the most

    We are always the most nervous the first time we get anything done. It really is well worth relieving the pressure by getting fluid drained. Try not to worry too much about it. Once they get started it goes pretty quickly. Plus, the ladies I talked to in intervention radiology are all really nice and I enjoy talking to all of them. It will be easier and less painful than you think. It is just some soreness after the first time. 

  • May41
    May41 Member Posts: 3
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    Thank you

    For your kind responses.

    had the tap yesterday. 2 1/2 liters.  Had hoped for more, but.

    piece of cake. Silly to have worried but maybe its better to focus on littles and the large will take care of itself? 

    Waiting now now for first chemo appnt.  

     

    Am am swinging between calm, mature, and

    when in danger

    or in doubt

    run in circles, scream and shout

    please, what coping mechanism worked for you?

  • yamster34
    yamster34 Member Posts: 75
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    I can't help you when it

    I can't help you when it comes to treatment! Thankfully, instead of surgery, chemotherapy, and radiation, I chose to trust God and briefly ate a vegan diet! Now almost 8 months later, everyone tells me that I look better every time they see me. Praise the Lord! I hope every part of your treatment is as easy on you as having the fluid drained was!

  • Defying Disaster
    Defying Disaster Member Posts: 12
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    Why no surgery?

    Hi May41,

    I agree with the advice not to think too far ahead. I am an RN. My mother died of peritoneal cancer which is closely related to ovarian cancer. My sister was diagnosed with Stage 4 ovarian cancer in 2011. She is doing remarkably well.

    There are a few things that can make all the difference in your outcome. One is your physician being a gynecologic oncologist. Solid research shows outcomes are much better with gynecologic oncologists. Patients who undergo extensive debulking surgery and intraperitoneal rather than IV chemotherapy have much longer overall survival. Another is being treated at a non-profit specialty center such as a university affiliated medical center rather than a for-profit community hospital or cancer center. The specific cell type is another factor as is your own resiliance.

    Do not assume the worst. My sister's cancer was supposed to be untreatable but she had a 27 month remission after intraperitoneal chemotherapy which followed debulking surgery. She is doing very well, four years later even though the last two chemo courses were not effective. She is going to be evaluated soon at one of the top two cancer hospitals in the country, MD Anderson in Houston, Texas, where they have specialists in low grade papillary serous ovarian cancer.

    Google your doctor. Learn about his /her credentials, board certification, quality of the medical school attended. Again, much better outcomes with gynecologic oncologists. The Leapfrog group rates hospitals across the country on measures that really make a difference in patient outcomes. You can rely on their ratings.

    When you are ready, learn everything you can about your cancer. You will make many friends on this journey. You will find strength, support and love at the most unexpected times. Cancer humbles us but it does not defeat us. It helps us learn what is most dear.

    There is a long adventure ahead of you. Much love surrounds you. Remember that.

     

     

  • Defying Disaster
    Defying Disaster Member Posts: 12
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    May41 said:

    Thank you

    For your kind responses.

    had the tap yesterday. 2 1/2 liters.  Had hoped for more, but.

    piece of cake. Silly to have worried but maybe its better to focus on littles and the large will take care of itself? 

    Waiting now now for first chemo appnt.  

     

    Am am swinging between calm, mature, and

    when in danger

    or in doubt

    run in circles, scream and shout

    please, what coping mechanism worked for you?

    Coping mechanisms

    What coping mechanisms have worked best for you in your life so far? What comforts you? Seek comfort and love. Seek understanding. Own your feelings. If you feel like screaming, there is nothing like a good car ride out in the country where you can scream away at your heart's content. By all means, cry, rant. After all, this is not fair. Then do something you love. Eat something you love. Get into nature. Love life. You have been diagnosed with a terrible disease but you do not know anything else. The unexpected happens. There are new breakthroughs. By all means take good care of yourself.

    Cancer can freak people out so it is best not to expect outpourings of love and support from friends. Many people don't know what to say. That's okay. You will have the love and support you need. You can get some of that here.

    Get the best care you can. You will be in our thoughts.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
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    May41 said:

    Thank you

    For your kind responses.

    had the tap yesterday. 2 1/2 liters.  Had hoped for more, but.

    piece of cake. Silly to have worried but maybe its better to focus on littles and the large will take care of itself? 

    Waiting now now for first chemo appnt.  

     

    Am am swinging between calm, mature, and

    when in danger

    or in doubt

    run in circles, scream and shout

    please, what coping mechanism worked for you?

    May41, I cannot comment on

    May41, I cannot comment on ovarian cancer, I am a visitor from the Uterine board, but I wanted to assure you everything you are feeling is perfectly natural.  Trying to wrap your head around a diagnosis of cancer and what lies ahead is overwhelming. 

    Please try to take a breath.  If you are having problems sleeping ask for something to help.  I do agree the anticipating procedures and future are nerve wracking.  Many of us have gone through many of the things you will face in your future and are confident when we tell you, "you will be ok".  Unfortunately, it is easy for someone to say it  to you than you having to live it, so please know you will surprise yourself with how strong you will find you really are.

  • pandagypsy
    pandagypsy Member Posts: 113
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    IT'S ALL ABOUT YOU!

    Sealed I can't help but agree with a lot of the comments I've read so far.......do something for YOU ! It can be a very difficult time for you, but when you can, do something only you enjoy..........take a nap.....read a trashy book........eat WHATEVER, if you have a favorite and feel like eating.......scream & holler......everyone finds their own "thing"..........some find religion......some confide in friends........some have supportive family.  

    I was diagnosed stage IV in Feb. 2009. I was working for the first 6 months of chemo, before surgery.  Lucky for me I had a VERY understanding boss and not a very busy or stressful job as book keeper, since business was slow. Spent time e-mailing my sister, daughter and also a good friend; my sister said I should write a journal, but that is exactly what my e-mails were:  my feelings, emotions, eating binge descriptions, aches and pains, etc.  With my unique sense of humor, they enjoyed all of my crazy correspondenceFoot in Mouth A great way that I survived chemo treatments was the MP3 player............I would pick a favorite song and just put it on repeat for the duration; kind of puts you in a good trance!  Good Luck.........there IS life after diagnosis........you will find something that works for YOU Wink