2 ultrasounds CA 125 came back in 300s??? Help please

[Chris94]

Ca 125 came back in the 300's had 2 previous ultrasounds in my first one got told should clear the cyst up within 6 weeks on its own 2nd scan showed cyst has grown and shown abnormalities GP told me could be cancer and now been sent for urgent referral to a gyne specialist... GP very concerned as there is a lot of swelling

[Tesla_7US]

chris94, Get to a Gyne specialist asap. Ultimately, if you need surgery, an experienced Gynecological Oncologist/Surgeon should be able to get you to R-0 aka "no visible macroscopic residual disease present". Before any surgery might be needed they will order scans-- CAT, MRI, PET, whichever is best for you. FYI, simple ultrasounds cannot be relied upon to spot ovca. I had TV ultrasound and because my cancer was epithelial (grows on OUTSIDE of ovaries/organs) it could not be picked up. Take this one step at a time, that's as fast as any human can run. Hugs, T

[Thannah in reply to Tesla_7US]

Tesla_7, I was wondering how they detected your cancer if the TVU did not pick it up? TIA

[Tesla_7US in reply to Thannah]

I started bloating and within 30 hours swelled up to about an 8 month pregnancy! Diagnosed in the Emergency Room from a CAT scan. CA 125 was 786.

[Thannah in reply to Tesla_7US]

Oh wow! that's fast! Did you have symptoms before that? Did you have a TVU before the ER visit? Thanks for the reply.

[Tesla_7US in reply to Thannah]

yes, about a year before. Went to a urologist, an internist, a gastro and GP who was useless and didn't even run a CA test. My gyn onc said I had had it for years, more than two. I am not trying to scare you. I am in US. No awareness here.

[Thannah in reply to Tesla_7US]

Tesla_7 I too am in the US and agree with you 100%. I had an MRI and the RESIDENT who read it had inconsistencies and errors in the report....a report that the MD supposedly reviewed. The gyn onc won't go back for second look and is saying it's the gold standard, nothing was seen, goodbye. Now I am left looking for a second opinion.

[Tesla_7US in reply to Thannah]

Thannah, When you say "second look" does that mean you've already had surgery? or a second look at your MRI? I went to 4-5 Doctors looking for help with my symptoms. They each ran their "specialty" tests and probes examining only the INSIDES of organs for which they specialize. When all tests for their "specialty" were negative, they became dismissive. Male and Female Docs alike! I was not familiar with ovarian cancer symptoms. None of these doctors ordered a CAT scan or connected the dots!! The worst experience I've had was with my OWN female oncologist who treated me when I had breast cancer. When I went in complaining of armpit pain and exhaustion she offered me a tissue when I started crying, didn't do ANY bloodwork -"It's been so long since you've been in it really wouldn't tell me anything" and dismissed me with no instruction whatsoever. Get yourself a second and THIRD opinion. Doctors make mistakes. Listen to your inner voice and advocate for yourself because no one else will.

[Thannah in reply to Tesla_7US]

Thanks for your reply! I realized after that this thread was from 3 months ago! Second look with MRI....and I know what you mean about dismissive. So far the gyn onc has been the worst!!! The dismissiveness is wearing me down, but you are right. They make mistakes and only I can advocated for myself. Hope you are doing well.

[Tesla_7US in reply to Thannah]

Thannah, I am doing very well. 13 months in remission. I found a gyn/onc who is not burned out and who dares to care deeply for his patients. His remarkable surgical skill, my loving husband and massive chemo saved my life. I wish the same for you.

[Thannah in reply to Tesla_7US]

That's great Tesla-7. So glad to hear that. And thank you. All I ask for is answers to matter what they are.

[Chris94 in reply to Thannah]

Yeah my original doctor kept passing me of with a UTI changed doctors and told him I knew there was a cyst I could tell he sent me for my first scan got told the cyst should destroy itself within 6 weeks went to a&e witH server pains in my tummy they took bloods then and before I knew it i was sent a letter for a gyne appointent meant to be on 25th July but when I went for my second scan found out the cyst has grown and tripled in size and large amount of swelling around it so got sent for emergency blood tests which then showed my levels were in the 300 Mark I have not got to a specialist on 10th and will find out more then so now it's just the waitig game

[Thannah in reply to Chris94]

Good luck to you. The waiting game is so hard. How long did GP keep passing you off with the UTI?

[LesleyGreengran]

It's good that your GP is proactive. But you do need to see a gynae consultant soon. Inhad a friend who had something like this. She was painfully swollen but she's ok now that she's recovered from the op (and back on a loaned horse) though the wait for the op was tough as her boss expected her to keep working. Mine was diagnosed by the CT scans though and my CA125 was in the 1000s (in 2010).

[chrissapam]

I was in a similar position...my GP not so on the ball...get him or her to chase up that referral...today if poss. Chris x

[thesilent1]

It sounds to me like your GP is on the ball and has most likely red flagged you. I do hope so as that will men you should be seen fairly quickly,nice within 2 weeks of referral. Don't go lifting anything heavy in the !meantime. Ann xx

[diww1]

Chris I see this is an old post that came up when I did a search

.. did you get the answers you needed and how are you doing x