What causes a high CA125 result?

[Slee123]

I have suspected endometriosis (haven't had surgery yet to confirm) with what originally was an 8cm endometrioma on my right ovary and a 3cm on left, however a second internal ultrasound by a gynaecologist has found it is in fact 10 smaller cysts on the right and 3 on the left. They also found adhesion of the left ovary which is situated behind my uterus and some uterine fibroids on the posterior wall. Blood tests also indicate possible PCOS.

My CA 125 went from 160 to 211 over a period of 2 months.

Any reason why it would jump up if it isn't cancer?

[Slee123]

I ended up getting an immediate appointment with Dr Lamaro for tomorrow. Are there any questions you can think of that I should ask the doctor tomorrow?

I have stated outright that I am not looking to change doctors unless I feel he can manage my case a lot better. The other thing is Dr Lamaro wouldn't be the actual doctor conducting the surgery. As I am going in as a public health patient, it will be Dr Lamaro supervising a fellow under his guidance... If I were to pay private fees amounting to over $3000, I would then have a better chance of getting Dr Lamaro to operate unless he is called away for an emergency.

Thanks :)

[ticked]

I will only say this because I advocate and have for a while that it is key to have an Endo surgeon who specializes in this disease. I had a 10cm endometrioma which at first looked like a complex mass but it was everything wrapped around my uterus. My surgeon fully removed the Endometrioma from the ovary without removing it. If anything you want to keep your ovaries for hormone reasons as it also puts you at high risk for osteo as well as early dementia.

I wish you the best of luck on whatever road you chose and I only speak what I do to help others not for any other reason. I don't wan't to scare you but to inform you of your options. :)

[Slee123]

I have contacted Dr Lamaro just in case he is willing to give see me and give his opinion.

[Slee123]

Unfortunately the issue with switching doctors is the waiting time which is generally a month. I am scheduled for surgery in 2 weeks now.

My gynaecologist today has spoken to me about surgery... due to the size of my ovary (9cm) and because there are 10 cysts either on or inside the ovary, plus the CA-125 being at 211, he has decided it is best to remove the right ovary.

Reason being, if there is any risk of the cysts being sinister, accidentally bursting one during the surgery is a greater consequence than having one ovary. He also believes that there is little "good" tissue left in the right ovary...

I do believe that my gynaecologist has tried to avoid making this outcome his ultimate decision, due to the tests and scans I have had done since seeing him. However, he has admitted the CA-125 is out of his comfort zone and does not want to take any risks that could cause anything sinister to spread.

I have read that having one ovary increases the risk of early menopause, ectopic or tubal pregnancies, downs syndrome pregnancies, emotional imbalances...

I'm just not sure what to do...

[ticked]

Oh if you are interested this is my blog. I update on everything I try as well as what is going on now to treat endo etc.

http://endendoforever.blogspot.ca/

I do a lot of articles for sites as well they are all under "articles I have written on my blog"

[ticked]

Oh wow that is cool. :) I had surgery done by dr. Leyland in Hamilton he is one of the best in Canada and because my first surgery was with him I got a lot of relief. However I ended up contracting an STD in 2010 which led to PID which caused more pain. It has been a rough journey since then because I do feel that if that had not happened I wouldn't be where I am right now and that is with lots of bladder and bowels issues. I am on marvelon which is a low dose bcp and for me it has been a miracle drug. I used to get so many migraines aura, cluster then diagnosed with Complicated migraines but since being on this the last 7 yrs I have had none. So it seems to work for some and not others because either you are one way or the other with the bcp.

there is this natural med that I have to get the name from a friend but I hear it is amazing and many endosisters take it and it helps them but I do believe that excision to begin with is vital.

There is this surgeon posted on the Endometropolis board as an Endo surgeon have you seen him yet? I can also ask around to see if anyone has had surgery with him if you'd like.


Dr. Vince Lamaro

St. Vincent's Clinic,
438 Victoria Street,
Darlinghurst NSW 2010
T: 8382 7180

[Slee123]

Btw, I had both blood tests done approx the same time of the month.

[Slee123]

Thanks ticked!

I'm in Sydney, Australia. My gynaecologist I have been recommended by another person who had the same issue and had surgery with him. He is the second gynaecologist I have seen, as the first one didn't seem to give a s***. We are discussing surgery options on Tuesday.

I had actually considered going to Toronto to do my surgery as I partially live there and notice you are from Mississauga! But as I don't have OHIP there yet, it was cost effective to come back to Australia to fix it up.

I would however be interested in more information from you re: post surgery endometriosis "maintenance" (for lack of a better word).

I am currently taking the Women's Sense Estrosense tablets as well as a low dose BC pill (microgynon 20) for pain. I am seeing a naturopath for diet. Anything you recommend to reduce the risk of cysts coming back? I don't particularly want to be on the pill as I am prone to migraines with aura.

[ticked]

Yes many things can elevate your ca-125. Endometriosis, adhesions, inflammation, adenomyosis and cancer. It also depends on when you get it done. Mine was 37 on my period and 78 when I was ovulating.

An endometrioma is an indication of moderate to severe disease so that is probably what is elevating it. I too had the same concerns about cancer and most Endo specialist don't go by the ca125 test.

I hope that helps :)

I should tell you like I tell everyone that comes on here that it is imperative for quality of life if your first Endo surgery is done by a skilled Endo surgeon not just a regular gyno or obgyn. I can lead you in that direction if you let me know where you live. There are only a handful of surgeons worldwide for 190 million Endo suffers so they are limited but you will be happy you went this route.