borderline mucinous tumour

[Suki271]

Hi. I had a hysterectomy 5 years ago, but elected to keep my ovaries to avoid HRT. Eight weeks ago, I had a huge ovarian cyst removed, (16cm by 12cm), which turned out to be a borderline mucinous tumour. My Consultant met with other medical specialists who decided not to give me chemotherapy, but to monitor me again in 6 months time, when I will have an ultrasound scan and CA 125 blood test. Although the Consultant has told me not to worry and that I don't have cancer, having read information about having borderline mucinous tumours, it seems that they are more serious than he is depicting. I am now worried about waiting another 6 months for these further tests and worry that I may end up having to have chemotherapy anyway. Can you please tell me a bit more about the likelihood of this and what the purpose of having these tests? Oh and I don't have my appendix as I had that removed years ago! Thank you. Suki.  

[Suki271]

Thanks Julie - I think I will make an appointment to discuss again with my GP. The reason I was concerned is that my CA 125 test results were in normal range even before I had the surgery and diagnosis - which is what has made me suspicious. Good luck to you - keep in touch and let me know how you're doing. Suki.  

[westajul]

Hi,
I was diagnosised with a  mucinous borderline tumor apr07 and I had a complete hysterectomy and my ovaries removed. My local doctor here recommended a ct scan, cea test and a ca-125 test every 3 months for two years. I went to MD Anderson for a second opinion and they agreed with my local doctor. I don't want to scare you but for me OVCA has returned...my dcotor at MD Anderson was very surprised that my OVCA had returned but fortunately because of my CEA test results and my ct scans the metasized(sp?) cancer was caught very early and my prognosis is very good. I would really push for ct scans every 3 months and include a cea test. My ca-125 tests were still in the normal range and wasn't showing much change. It was the big change in my CEA test ( even though it was still in the normal range) that combined with the ct scan results concernered my doctor. Julie

[Suki271]

Thanks. I did have a CA 125 test before surgery and I think again afterwards, which they said was OK, but I don't know what the levels were - I wouldn't know what a good or bad level was even if they told me! It seems to me from reading comments posted on this site that you get a lot more information given to you in the States than we do here in the UK - and I had my treatment done privately as I have private health insurance! I think I will be asking more questions. Thanks for your comments - they are really helpful.

[Casey06]

Hi, nyc lady is correct about the recommended follow-up. It is considered a very slow growing form of ovarian cancer, which has low incidence of recurrence, but can happen after 10 years or more, so it is important to be monitored for many years. I suggest that you get a second opinion on the pathology to be certain it is only a borderline tumor, because it can be a tricky pathology. Also, did they do a CA125 blood test before or immediately after surgery to see what the value was? This is the typical test used to monitor, but is only good to know the relative value from when the tumor was present. Mine was at 400 and dropped and stays at 8 post surgery. TVUS and CT are also test used to monitor as needed. Good luck.

[nyc lady]

There are a few women diagnosed with BLMP cancers that will hopefully come along and let you know about their experiences.  Here in the States, I believe that the follow up is every 3 months for 2 years, then every 6 months for the next 3 years and than down to once a year.  BLMP cancers can recur but, the odds are against it.

Best of luck to you.