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ca-125 results

Last summer , while I was vacationing in Greece I received an urgent fax from my husband. A letter came for me suggesting to do a pelvic follow-up as soon as possible, because the CT scan I did in Toronto before my trip, revealed a epithelic lesion on my left ovary. I was in a lot of pain for the last 2 years,and they couldn't discover why until that amazing doctor saw it last year at the emergency department. The gynecologist who saw me in Greece did a vaginal ultrasound and immediately send me for a CA-125 test. Now a year later, I still suffer from exrutiating pain, I'm losing work days, I ended up at the emergency Department where they discovered what it seems to be, but they are not sure, endometrioma....and did again a CA-125 test yesterday. My fear is that if it is ovarian cancer, the CA-125 is not always accurate at the first stage of the cancer and that might be the reason it was below 30 last summer. I went to my gynecologist as soon as I came back to Toronto, told him everything and that I also lost for no reason 15 pounds in a month, and his reaction was you are in early menopause, your hormones are all over the place, that's why you are losing the weight"here take HRT and come and see me again in 3 months". I said to him I can't have hormones
I just had an operation few months ago for breast cancer, and I know I am not the right canditate for HRT please can we do something about my pain and check out the ovary? He said not to listen to the rumors about HRT, to do what he told me and see him again in 3 months. I was shocked, dissapointed and the result is now I am in a waiting list for urgent operation, my family doctor said they are suspecting cancer and I live in agony until I get the results from CA-125 few days from now. I am 46 years old, I have 2 kids, the youngest one is only 11, there is a history of ovarian cancer in my family and I'm afraid that if it is ovarian cancer because of all this delay, that it might have spread outside the ovary, cause I feel totally weak, horribles pains everywhere(lower back, rectum, legs, thighs, pelvic pain, gas, bloated, bleeding and can't even sit anymore. What do you think. Am I right about CA-125 results, not always accurate at the beggining of ovarian cancer? How fast does ovarian cancer progress in a year?
Yours sincerely
8 Responses
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415684 tn?1257329318
I totally agree with all of the above .. get yourself to a GYN/ONC .. and do it now.  Judy
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272338 tn?1252280404
  I cannot tell you whether or not you have ovarian cancer, but I can advise you to look for either a second opinion or another Dr completely. As the others have said, this is your body and you know that something is not right. Do not let a Dr tell you any different. Forget that waiting for three months. If he will not see you before that, then find one who will. But whoever you see, tell them your suspicions and fears and tell them you want them to rule out ovarian cancer. Insist that they do this. And if you should have to find another Dr, it would be a good idea to find a gyn/onc. And no, the CA125 test is not always a good indicator of ovarian cancer.
So please, first and foremost, insist your Dr do something now and if he won't ten find one who will.
        Chris
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Avatar universal
How did they diagnose you in such an early stage?
Chopps
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Avatar universal
Hi Sunshine,
My mother, surgery yesterday for primary peritoneal cancer, (they say to call it ovarian cancer for all intensive purposes).

She had symptoms.  CA 125 was 4 (low) a year prior, vaginal ultrasound didn't show anything a year prior and a CT scan 2 year prior showed nothing.

2 weeks ago, 1 year to the month her CA 125 was 290 (below 35 is normal), and a CT Scan showed stage IIIC primary peritoneal cancer.  She had the CA125 after the CT Scan showed stage IIIC cancer.

The symtoms are there, but the tests don't show it early.

Request a CT scan or a PET/CT scan.    Tell them you know something is seriously wrong and that time is of the essence.  Also, put everything in an email to the doctors.
If they deny you, you will have everything documented.  If they deny you, change your doctor.

Good luck and my thought are with you.
Chopps
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Avatar universal
hi sunshine
i had an operation at notre dame hospital in montreal on july 15. They took everything out
my CA125 was very high in june it was 161 before the op.a week later it was 307
another week later it was 353 after the op on august it was 156 so i had chimio on sept 3
after it was 156 the day before the chimio. i had another treatment yesterday on sept 24
they took ca125 again before and it was 56 so i guess before the 3rd one it will be normal i hope i have chimio until dec. but if on the 4th treatment it is normal again
i will stop chimio...it is bizarre the your gyneco do not send you to an oncologist i think you should go very soon ...my grade was grade 1 stage 1C at this grade they perform chimio for prevention and for now it is working good.
let me know what you will do.
bonjour et bonne chance
Helpful - 0
238582 tn?1365210634
You are right. Ca125 for small percent of OVCA patients is always in the normal range even at late stage.  You need to act fast and i totally agree with Anne.  You need to find a Gyn-oncologist to perform your surgery, be very aggresive since it is your body and you know the best.


Please keep us posted.

Peace and Love

jun
Helpful - 0
Avatar universal
Ask your g.p. and/or gynocologist for an immediate transvaginal ultrasound and a ca125 test If you get the runaround, phone a private medical clinic in Toronto and make an appointment. The cost will be around a thousand dollars. If you don,t have the money, borrow it. This could save your life .Be aggressive and don,t accept patronizing behaviour.
I had to go the private route because I am from a small ontario town and needed access to experts.
Anne
Helpful - 0
421683 tn?1233438087
I couldn't tell from your post if you are already seeing a gynecologic oncologist, but if not, you might want to consider it. I can't say one way or the other about the CA-125 results not always being accurate with early ovca. Someone else on here may know the answer. I also don't know about cancer progression. My understanding is that progression depends on the individual circumstances. I am sorry I couldn't be of more help to you, but you will find a lot of caring and supportive ladies in here.

Kelly
Helpful - 0
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