Fibroids or the C word! Transvaginal ultrasound then... a phone consultation?

Hello folks

Bit worried for my girlfriend.

Quite a large (grapefruit size!) lump has grown in her abdomen over the last few months. She kind of didn't pay much attention to it as she was in the stressful last few months of completing her PhD, and then there were even more stressy issues surrounding an admin error with her student visa (she's from Taiwan).

Anyway, she went to her GP who was quite concerned, mentioned the possibility of cancer or it could be a fibroid.

There's no history of cancer in her family, but she has been diagnosed with endometriosis, and all three of her sisters have had issues with uterine fibroids - so I tentatively think that is the more probable culprit.

Anyway, she had a blood test, which apparently showed a very high CA125 index - alarming, but apparently endo/fibroids can also be associated with a high CA125 index. Many years ago she had a blood test which similarly showed high CA125, and there was no cancer then.

2 days ago, she went for an urgent transvaginal ultrasound.

Today, she had a phonecall from the hospital saying that her next appointment was next tuesday afternoon. But it's a phone consultation!

Can that be right?

Obviously we're laypersons but it seemed to us that the big scary priority was to rule out cancer so we figured the next appointment would be some kind of biopsy.

What are the implications of a phone consultation? Does this seem normal for this chain of events? Should we be alarmed?

I know it's only a few days to wait but it just seems weird. She expected a meeting with someone who would show her the ultrasound, point out and explain what all the different areas mean, and then a biopsy. Or something.

Aaargh!

It would be great to hear some thoughts on this!

Thank you

  • Hello, and thanks for your post,

    I can understand how unsettling it can be waiting to find out the cause of your girlfriend's symptoms. 

    The CA125 is not a test on its own for cancer but it does indicate that there is a swelling in the abdominal area that could be fibroids or an ovarian cyst which tend to be benign (not cancer). 

    I am not sure why the Consultant is phoning rather than seeing your girlfriend in person. There can be any number of reasons such as not being able to fit her into a busy clinic.

    I am sure that the Consultant may want to see her at some stage to discuss what her next steps are in treating her swollen abdomen. Do encourage your girlfriend to ask why she was not able to have a face-to-face appointment when they phone her.

    Try if you can not to overthink what it all means.

    If either of you would like to ring and chat to one of the helpline nurses then you are more than welcome to do so.

    Our number is Freephone 0808 800 4040 and we are here Monday to Friday 9 am to 5 pm 

    All the best,

    Catherine

  • Hi

    please update if you’re able to, I also have a pelvic mass I am currently waiting on a scan for. Out of my mind with worry!

    I hope it is good news x

  • Hi, I’m so sorry to hear you and your partner are going through this. I’m in a very similar boat and know just how worrying it is.

    I also had a raised CA125 result and was sent for an ultrasound. I had both an abdominal and transvaginal ultrasound and my followup appointment was in person. The Dr went through my scans and explained they found a large cyst which they need to determine if it’s cancerous or not. I was referred for an MRI and the outcome of that will determine if I need a CT scan too.

    This has been my experience so far and I hope that helps you out a bit. Hopefully you’ll get information during the telephone consultation. 

    Wishing you the best

  • Hi Tasha, and thank you for posting. 

    I am answering your post in case Jamieboo doesn't come back to you. But, even if they do, it is good to remember that everyone's situation is different.

    There other reasons for a pelvic mass other than cancer, like cysts or fibroids, but it is important for them to be investigated. 

    Waiting for scans and results is so hard and it can be easy to think of nothing else. Unfortunately it is only your hospital team who will know what is happening once you have this scan, so although others stories may sound similar, the outcomes are individual to them.

    Take care Tasha, and I hope you will know more about your situation soon

    Sarah.

  • Hi Tasha, and thank you for posting. 

    I am answering your post in case Jamieboo doesn't come back to you. But, even if they do, it is good to remember that everyone's situation is different.

    There other reasons for a pelvic mass other than cancer, like cysts or fibroids, but it is important for them to be investigated. 

    Waiting for scans and results is so hard and it can be easy to think of nothing else. Unfortunately it is only your hospital team who will know what is happening once you have this scan, so although others stories may sound similar, the outcomes are individual to them.

    Take care Tasha, and I hope you will know more about your situation soon

    Sarah.