New here-stage 3c Fallopian tube cancer

Freckles0808
Freckles0808 Member Posts: 4
in Ovarian Cancer #1

Hello everyone. I was diagnosed with stage 3c tubal cancer during an emergency csection on march 10th, 2014 at 35 wks pregnant. the doctors thought I had ovarian, but the primary site was found to be in my right tube. I had a TAH/BSO and debulking surgery after they took the baby. We were trying to wait til 37 wks to take her, but the ascites was so bad. I had one paracentesis arpound 34 wks where they removed 3L of fluid (can you imagine this on top of being 8 months pregnant?!) By the time she was born a wk later, another 4L was removed during surgery. I had multiple paracentesis after her birth and eventually a drain was put in so I could remove the fluid myself. 2 weeks after she was born, I began chemo. I did 17 wks in a row, once a wk, of carbo/taxol/avastin. I couldn't get my last wk of chemo due to low counts. I had a CT done in august which was clean and my CA-125 dropped from over 3000 before surgery, down to less than 20. I'm considered in remission, but I'm absolutely terrified of recurrence. It seems inevitable. Is there anyone here who has been stage 3c and stayed in remission? I should mention I'm only 29 yrs old, have a 3 yr old son and 7 month old daughter. I'm really struggling with life post cancer and dealing with all the trauma and loss. I go for my first follow up with my oncologist this wk. I'm terrified. Any words of advice or encouragement would be greatly appreciated. Thank you.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #2
    Freckles, please, take a

    Freckles, please, take a breath.  You have been through so much and it is very scary.  You really sound amazing and have some beautiful children to focus on but this new normal takes time.  Is there someone you can talk to?  A pastor or counselor?  Someone who is going to listen and hold your hand as you figure out the next steps?  Cancer of the fallopian tubes is very rare to boot! 

    I wish there was something more I could say to you and hope some of the other wonder women can help.

  • debrajo
    debrajo Member Posts: 1,095 Member
    #3
    Hi!

    You have been through so much, but you  did get to have your baby come into the world alive and well.  You might get a better answer to your questions over at the Gynicology{not Ovarian or Uterine} board or even at the Rare Board.  They do move slower since they are unusal and rare, but they would know info on the tubular cancers.  I am amazed you tolerated the chemo, and so much of it so close together, and were able to stay in one piece !  I moaned and groaned over Taxal/Carbo once every three weeks!  I don't know the answers , but it sounds like they treated the day lights out of you!  I can't tell you  not to worry about reacurance, That never goes away, but at your age I think you are ahead of the game!  Love those babies, breath deep , enjoy life, and take each day as the gift it is!  Best, Debrajo, Uterine Board

  • Freckles0808
    Freckles0808 Member Posts: 4
    #4
    Thank you

    Thank you for the replies. My oncologist was very aggressive with chemo due to my age and staging. I had 6 cycles-so 18 wks total. I got taxotere weekly (had an allergic reaction to taxol the first time), and every third wk, I received taxotere, carbo and avastin. I hope that makes more sense...so 18 doses of taxotere And 6 of carbo and avastin.

    I did look at the rare cancer board, but it does appear very slow. My chemo nurse basically said I'm lumped in with ovarian. Since it presents similarly and is treated like ovarian, I think I could get a lot of support here if that's okay.

    I have started counseling, and it seems to be helping a little. I know I have a long road ahead of me.

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #5
    Freckles0808 said:

    Thank you

    Thank you for the replies. My oncologist was very aggressive with chemo due to my age and staging. I had 6 cycles-so 18 wks total. I got taxotere weekly (had an allergic reaction to taxol the first time), and every third wk, I received taxotere, carbo and avastin. I hope that makes more sense...so 18 doses of taxotere And 6 of carbo and avastin.

    I did look at the rare cancer board, but it does appear very slow. My chemo nurse basically said I'm lumped in with ovarian. Since it presents similarly and is treated like ovarian, I think I could get a lot of support here if that's okay.

    I have started counseling, and it seems to be helping a little. I know I have a long road ahead of me.

    Good advice

    ....take care of yourself.  yes..take one day at a time and enjoy your good days. You have a wonderful family and good support.  You are young and strong and you will get to remission. Come back and let us know how we can help..stay strong....Val 

  • Susan P
    Susan P Member Posts: 103
    #6
    poopergirl14052 said:

    Good advice

    ....take care of yourself.  yes..take one day at a time and enjoy your good days. You have a wonderful family and good support.  You are young and strong and you will get to remission. Come back and let us know how we can help..stay strong....Val 

    Fallopian tube cancer

    Hi Freckles - welcome -you have made an excellent choice coming to our group - knowledge & understanding from those in your shoes are great tools in dealing with this cancer journey

     

     

    soo many questions - it was great for me to seemy doc's choice of treatment & drugs was pretty much the same as every one's thus showing me they were following protocol for OV ca tx

     

    I was 60 when dx'd with 4" tumor on left ovary stage 4 CA 125 = 4,000 before chemo & dropped by about 50% with each tx  I was toitally blessed with how well I responded to the carbo/platin

     

     after debulking surgery & 1 year of chemo, I was declared as NED  CA= 36( no eidence of disease  April 2014. My second 3 month check up will be Dec 4.

     

     

    In view of knowingthat it is very common for OvCa to rear it's ugly head again.  I'ds like to shareatwo obserevations of mine  - that I revisit if I get worried about recurrance

     

    (1) no amout of worry will change anything

    (2) there are bzillion people out  there growing tumors without their knowledge - whereas I am being closely monitoted  & if/when it recurrs , it will be caught early due to my vigilance & onc's care ..already being in the system will fast track any future cancer care.

     

     

    Best wishes & come back often as you can with a baby

     

    Susan from Alberta Canada & TX & WY

     

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #7
    Fallopian Tube

    Sorry you had to find us but welcome, I also have fallopian tube but it is treated exactly as ovarian so here is a good place for info there are so few of us with fallopian tube that's why those boards are "slow".

    I have been in treatment since June of 2010 and am 60 years old, I can't imagine having little ones to take care of in addition to treatment but your age is on your side. But don't try to be superwoman ask for and accept any help you can get.

    A reoccurance if it happens is not the end of the world, just deal with what you have now and enjoy your life and your children ! Good luck at your check-up !

    Colleen

  • wholfmeister
    wholfmeister Member Posts: 315
    #8
    You are a super person...

    ...but don't try to be super human!  Take just a moment to think about all you have lived through just in the span of a year!  A pregnancy with an early emergency C-section.  Major, MAJOR surgery.  Sudden menopause.  Post-partum hormones, or lack there of.  18 weeks of strong chemo.  Two precious children demanding as all normal children are.  And a whole lot more!!  Any one of those taken by itself is a HUGE life adjustment!  Give yourself credit for making it this far and honor the strength you have!  You are going to make it!

    i am truly amazed by you!

    inquire at your oncologist's office or chemo center about a support group for gynecological cancers. It really does help to have a safe place to utter those scary inner thoughts and to know other women with similar struggles.

    I have a good feeling about your survival!

  • seatown
    seatown Member Posts: 261 Member
    #9
    You're amazing!

    What a lot you've been through, at such a young age! I admire you so much. I too visit this ovarian cancer site because I have a different, but related, rare cancer--primary peritoneal cancer. I was told that both OvCa & PPC arise from the same epithelial tissue, & I'm guessing that might also be true of Fallopian tube cancer. Further, my PPC is treated the same as OvCa. In fact one of my docs once said to me I should tell people I have OvCa, because nobody ever heard of PPC.

    Recurrence is always in one's head, I have to admit. But my docs have repeatedly said I should think of my diagnosis as a chronic disease to be managed. They've said they have had patients who have lived for many years with careful management, & I know that's true from the posts I've seen on this site. I also have another chronic disease--rheumatoid arthritis--which was diagnosed when I was younger than you are now. I have to say, living a life with rheumatoid arthritis was more difficult on a day-to-day basis than living with my cancer has been these last 2+ years.

    Take the wise advice you've read here--don't be afraid to seek help and don't try to be a superwoman. You know doubt will have many challenges, but you sound like you are well equipped to meet them. Best wishes always.

    Should you be interested, I've written about my cancer journey at 

    http://www.CaringBridge.org/visit/CaroleSeaton

  • Freckles0808
    Freckles0808 Member Posts: 4
    #10
    Thank you

    I wanted to say thank you for all of the kind words and encouragement. I had my first follow-up last week. My CA-125 went from 13 down to 9. I feel like I've gotten over the first big hump post remission. I was terrified I had relapsed. I am breathing a big sigh of relief and find myself not as obsessed with thought of recurrence as I was.

    having the support from other women who know what I'm going through is priceless. So, thank you again.  :)

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