I have had endo for over 10 years, but now I have a 7cm cyst on my right ovary. I have had a uterine biopsy and ca 125 test last week.

[samantha94]

I am now really scared it could be ovarian cancer. I should get the results back this week, but the doctor said that until the mass is removed they will not know if it is cancerous or not. I also understand that with endo the ca 125 levels can be raised. How long are the waiting lists for surgery? Will I get a hesterectomy or just the cyst removed?

Would really appreciate any feedback if you have had a similar experience. Thanks in advance x

[Amb43]

So sorry that you are so worried, I bet you can't wait until this week is over. x

I am sorry I can't help you but what is a ca125 test and what is it for?

Sending you strength to get through this xxx

[Impatient in reply to Amb43]

CA125 is a blood test looking for cancer antigen 125. it's the same marker for ovarian cancer as for endo, but in the VAST majority of cases even elevated levels will just be endo. As Samantha already knows she has endo, her CA125 will probably be elevated because of that, regardless of any possible OC.

If the cyst looked to be complex on the scan (ie chocolate) then it is big enough for surgery to remove it being above 4cm, however as she already has an endo diagnosis, this will be much more likely a cysts resulting from endo and unless there are other significant worrying signs then it's just normal NHS waiting list for surgery. Could be several months waiting.

If she didn't yet have endo, and the CA125 result was elevated and there was a cyst then surgery would be much quicker because it would be treated as a possible cancer and therefore under the NHS guidelines she would be fast tracked.

Unfortunately already knowing she does have endo anyway, this means there is a known reason why the CA125 result is elevated (the endo) and speedy surgery is no longer a top priority.

It isn't really fair, but that's how the current system works.

No need for a hysterectomy for any benign ovarian cyst. They can be removed by lap op , though sometimes if they have grown round an ovary it might be easier to forfeit the ovary than to remove the cyst from round it.

I lost my left ovary to an endometrioma, the right ovary also had it's own endometrioma but was cleaned up and it still works.

You can quite happily survive with one ovary if you decide it is too troublesome to stay in there. Something to discuss with your gynae surgeon.

No ovary = no more ovarian cysts on that side, and half the chance of developing OC in the future.

[samantha94 in reply to Impatient]

Thanks for your reply, feel a bit calmer now. Its good to speak to someone who can put things into perspective for me x

[Amb43 in reply to Impatient]

Thank you Impatient, very informative as always. Very interesting. Hope you are doing ok today xx

[samantha94]

Thanks for your reply and your good wishes x

Its a test for an antigen for ovarian cancer, however women with endo can have raised levels also. I am normally very strong emotionally, but having a worrying time at the moment

[Amb43]

Thanks Samantha, it is obviously very worrying for you and as impatient says it's not fair how the current system works. Just because you already have Endo, it's not right that despite your reading, you have to wait. It certainly is a worrying time, and no wonder you feel you are not as emotionally strong as usual. Endo is a buggar for making us all feel that way, due to it's enigmatic nature. There should be far more research being done.

Once again, sending you the strength to get through this week, take a deep breath and it will be here before you know it. Take good care of you xxx hugs xxx

[Rufio]

Samantha I feel your pain, have been in similar situation, the mention of the "c" word is absolutely frightening. It is true they don't necessarily know what they're dealing with for certain until it's biopsied. My first lap for suspected endo turned out to be a borderline ovarian tumour as well as endo and at that time the cyst was removed. When I got the results, hysterectomy was discussed but not an option for me as I'm still hopeful I can have a child. I had another cyst grow back about 2 or 3 months later with my ca12 elevated again and given my history it was all taken very seriously. At that time I was referred for specialist surgery but the upshot was I had one of my ovaries and omentum removed (again, there was no way I was agreeing to a hysterectomy). Now I am monitored closely - scan, ca125 and consultant every few months. I hope this doesn't scare you just wanted you to know you're not alone x I must say the treatment I've received from the NHS has been excellent and things have happened quickly once I got referred to the hospital.

Another thing that helped me was having very understanding family, friends and colleagues who didn't mind me crying on their shoulder at any given moment! I hope you have a good support network to help you through this incredible stressful time. Let us know how you get on and if you want to talk further x

[samantha94 in reply to Rufio]

Thank you very much for your reply and I appreciate your honesty. I lost my best friend in November due to ov - and feel isolated and scared. I havent told my parents as they are older and would just worry. I am lucky to have a daughter, she is 18 and studying at uni and I feel she would be distraught if she knew what was happening. I have a fab husband and other good friends who know about my situation so I am going to think positively and hope for good test results and quick surgery.

I hope you continue to keep well and hope you are still able to have a baby. I will let you know how I get on. So glad I posted my question!

Take care xx

[Noorri]

Hi Samantha

I can understand your feelings, stress and worry.

Me too was found with an endo cyst with 8.5cms and a CA 125 around 1500. Thank god after laparotomy it has been found to be endo.

What I have learnt is that there are various other condition that contribute to an elevated CA125 such as inflammatory, appendice etc... and my doctor told me that CA 125 is not a good tool to detect OC but it is used to monitor OC after treatment.

Keep faith in God and am sure there wont be any thing serious

Take care

[samantha94 in reply to Noorri]

Thanks for taking the time to reply to me. I am glad that your cyst was endo. I am hoping that will be the case with me too x

[samantha94]

Just had blood results this morning, delighted to say that it was 24!! Biopsy results should follow in a few days x

[IggiePiggy]

Hi

I had a cyst on my left ovary in March last year. The hospital thought I and cancer as I had high CA 125. I had a lap and I found out I have endo luckily or me. It only took 22yrs for me to be diagnosed.

As the hospital thought it was cancer I was fast tracked for a lap, so it's likely you will be too.

I know it's easy for me to say but try not to worry. Sending you hugs

Angela X

[diww1]

I am so sorry you are going through this I am so similar had endo for over 10 years now got a 6.2 x 5 x 4 and I can't have surgery and I am lost meanapause are you post meanapause or not ? Your Gynaecologist will advice.on what they will remove .. I hope all goes.well.for you .. have you had a cyst due to endo before x

[diww1]

Sorry I just replied to your post and then saw it was 7 years old hope all is well now for you x