vey confused!!

rsmwhite
rsmwhite Member Posts: 6
edited March 2014 in Ovarian Cancer #1
My daughter is 28 yrs and a single mom. She has had 2 opnions and the last Dr. wants her to see an oncologist. Her CA-125 was 290.. she has all the syptoms of ovc. Is it true that they won't really be able to tell if its cancer until surgery? There is so much that we don't understand... Both of the other doc's have told her that it looks like its stage 3... Can anyone help with some information on all this.. What can we expect?????

Comments

  • kathie687
    kathie687 Member Posts: 41
    #2
    some of the other ladies on this board will be able to answer your questions much better than i will but i do want you to know that i will keep your daughter and you in my thoughts and prayers. i was dx in jan. 07 but have not had my surgery yet ( i will have it on the 18th) but my cat scan showed turmors, i had fluid that had to be drained and my elvated ca-125 was enough for us to start chemo. do your doctor's want to do chemo first before surgery? also is your daughter seeing a gyn/onc. if not you will want to have one on your daughter's case and you will want them to do the surgery. there are several sites that will give you a lot of information. i looked at the information on the md anderson site and also look at the posts on the john hopkins ovarian discussion board. i have really found a lot of comfort from reading the posts of the ladies on this board.(csn) they have helped me know that i am not alone in this illness.i have not posted on the john hopkins board but the ladies there all seem to care about each other also - i have just received more detailed information on this board. feel free to email me at any time.
    kathie
  • jamilou
    jamilou Member Posts: 200
    #3
    Hi
    I am so sorry that you are having to go through all of this worry. Maybe we can help. First has she had a Petscan , Transvaginal ultrasound, or ct scan? Sometimes you can have a false positive CA125 from a benign tumor or ovulating cyst. If she has had an ultrasound or ct scan what were the results? Some doctors prefer to do the scans before surgery and others will do surgery without scans if they feel it is urgent. I would definately see a oncologist/gyn. right away and let them know her CA125 level so she can get in right away. Good luck and prayers and hugs to both of you!
    Jami
  • duckcreek
    duckcreek Member Posts: 14
    #4
    I too was dx in Sept.07 and had my debulking surgery Oct4. I would not have anyone but a gyn/onc. do the surgery. The debulking surgery left me pretty weak. I then started 3 weeks after surgery IP and IV chemo. IP chemo is very ruff but they are seeing good results with it. I now have a CA-125 of 4.7 and I too was in the 200's. Feel free to email me
  • rsmwhite
    rsmwhite Member Posts: 6
    #5
    kathie687 said:

    some of the other ladies on this board will be able to answer your questions much better than i will but i do want you to know that i will keep your daughter and you in my thoughts and prayers. i was dx in jan. 07 but have not had my surgery yet ( i will have it on the 18th) but my cat scan showed turmors, i had fluid that had to be drained and my elvated ca-125 was enough for us to start chemo. do your doctor's want to do chemo first before surgery? also is your daughter seeing a gyn/onc. if not you will want to have one on your daughter's case and you will want them to do the surgery. there are several sites that will give you a lot of information. i looked at the information on the md anderson site and also look at the posts on the john hopkins ovarian discussion board. i have really found a lot of comfort from reading the posts of the ladies on this board.(csn) they have helped me know that i am not alone in this illness.i have not posted on the john hopkins board but the ladies there all seem to care about each other also - i have just received more detailed information on this board. feel free to email me at any time.
    kathie

    Thank you for your prayers.... she has her first appointment with a oncologist on the 22nd. So I guess we will know more than about what they want to do. Your right reading these messages have been very good and some useful info. Just knowing that we are not alone in this fight has been very helpful. I will be praying for you also... Thank You
  • rsmwhite
    rsmwhite Member Posts: 6
    #6
    jamilou said:

    Hi
    I am so sorry that you are having to go through all of this worry. Maybe we can help. First has she had a Petscan , Transvaginal ultrasound, or ct scan? Sometimes you can have a false positive CA125 from a benign tumor or ovulating cyst. If she has had an ultrasound or ct scan what were the results? Some doctors prefer to do the scans before surgery and others will do surgery without scans if they feel it is urgent. I would definately see a oncologist/gyn. right away and let them know her CA125 level so she can get in right away. Good luck and prayers and hugs to both of you!
    Jami

    Hi...She has had 2 Transvaginal ultrasounds, the first doctor was an emergency doctor that told her that without treatment she wouldn't live long (nice huh!) and her regular ob/gyn retested and told her basically the same thing. She was able to see the ultrasound as they were doing it (she worked in the medical field) and she could see the cavities (or the black areas).She is seeing an oncologist on the 22nd of this month and hopefully we will know more. Thanks to all the wonderful people here, for not being afraid to share what information that you know and what you have been through. I will also be praying for you.
  • mopar
    mopar Member Posts: 1,972 Member
    #7
    I'm so sorry we must meet this way, but so glad you have found this site. Many have already offered assistance, and I agree with them. Be sure it is a GYNECOLOGIC ONCOLOGIST. What state are you in? A PET scan also proves valuable in diagnosis. And yes, the CA125 is a tumor marker, but can fluctuate for a variety of reasons. I am a two-time survivor of OVCA 1C. My thoughts and prayers and with you, your daughter, and family. Please let us know what you find out and then we can be more specific in answering your questions,if need be, regarding chemo, surgery, etc.
    (((HUGS)))
    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #8
    So sorry your daughter has to go through this, but at least the Dr she has referred her to a gyn/onc. Try not to read too much about the outcomes of others, each person is different and each stage is different. Write a list of questions you have for the Dr and bring it to the appointment, I still do this.

    Praying for all of you. Bonnie
  • floridajo
    floridajo Member Posts: 480
    #9
    Hi, first let me say how sorry I am that this monster has touched your daughter life's. They can usually tell that it ca, just by looking at the ct scan (at least my gyn/onc could) The surgery is needed to properly stage the ovca, and what type of ovca cell it is. Also patholgy will grade the tumor, which has to do with the growth of the ovca...grade 0 thru 3. This info is so important for the onc to know so he can decide on the chemo plan of attack. I was dx. 11/04, and am currently having treatment for a second recurrence. MY ca-125 at surgery was 204, but the girls are right...there are so many conditions that can and do elevate the ca-125 test. The most important thing right now is to get a gyn/onc on board...not just a oncolgist..the gyn/onc are specialists in this type of cancer..and from what I have read your daughter will have a better chance using the GYN/ONC....good luck..my prayers are with you...Joanne
  • saundra
    saundra Member Posts: 1,370 Member
    #10
    I was diag. 2/28 and am taking 6 chemos before debulking surgery. I have read a lot and encourage you to seek a GYN/ON for
    the surgery. That is the most expert surgeon for this disease. Stay in touch with this group because they are encouraging and informative. I had CT scan and needle biopsy before starting chemo and since the cancer has spread to my liver, Stage IV. The hardest part for me is waiting on the next appt., the next test, and on and on. My CA125 went from 2888 to 288 with 2 chemos of taxol/carboplaten so I am responding well to the chemo. Keeping you in my prayers.

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