Scared & confused. Borderline ovarian cancer diagnosis.

[Lou1968]

Hi, I'm Louise. Have recently been diagnosed with a borderline ovarian cancer. This was found when I finally had surgery to remove a 15cm ovarian cyst. I have an MRI scan booked for 3rd Jan, but then have to wait another 2 weeks to see oncologist to discuss results and further surgery. I'm so frustrated that it all takes so long. I so want to get on with whatever treatment lies ahead NOW! Going out of my mind trying to be normal for my son, while my brain has so many unanswered questions.

[Cropcrop]

Hi Louise, isn't it rubbish having to wait for results?

The MRI will show what they need to see to be able to give you a full and detailed plan for moving forward. It's better to have all this information to hand before the oncologist sees you next so they are able to discuss the future plans fully. Rest assured that if they find anything that needs speedy intervention they will contact you.

Do try to be patient with the process, your ovary cyst was borderline so that negates a little of the urgency and the wait also gives your body a chance to recover before further surgery is carried out if, indeed, it is actually necessary. The scan may show no need for further intervention. They will be looking for any further disease in your pelvis and could potentially find none.

Have you had bloods done? If so did they do the CA125 test?

I do understand your frustration. You will know what you are dealing with in 3 weeks which in the whole scheme of things isn't a very long time, so try to be positive in the interim.

Good luck with the MRI scan.

Take lots of care in the meantime and let us know how you get on. Fingers crossed for you for good news ❤xx Jane

[wendydee]

Louise

It's rubbish, the waiting, isn't it? Have a look at the ovacome.org.uk website under 'resources' There are some good info sheets on there there is one on 'borderline'. It explains it all well. There is also a helpline number and email. It's completely natural to be worried. That's why it's good to come on here and say whatever you feel. we can all empathise. I had borderline OC in both varies and the omentum. That was 14 years ago and, once Ivor over the op, I've been well. I wanted to wish you all the best.

PM me if there's anything you want to ask......,and good luck

Love Wendy xx

[Choski]

The good thing is that if it IS borderline then its also known as 'low malignant potential' with a very good outcome. So hopefully that puts your mind at rest even a little bit.

The paragraph below is from the OvaCome nurse:

"Borderline ovarian cancer is as other people have described is not quite normal or benign but not full blown cancer either. The cells tend to divide more slowly than other ovarian cancer cells and don't usually spread which is why chemotherapy is not usually used in this situation. Quite a few people will call it cells with a low mailgnant potential or borderline ovarian tumour ( rather than cancer). It is diificult when people want to know whether you have cancer or not as they will think you have it or you don't. There is a fact sheet on the Ovacome website under resources- Ovacome fact sheets- No 10 Borderline "

This gives more detail

lancsteachinghospitals.nhs....

Plus: from cancer.gov cancer.gov/types/ovarian/hp...

"Tumors of low malignant potential (i.e., borderline tumors) account for 15% of all epithelial ovarian cancers. Nearly 75% of these tumors are stage I at the time of diagnosis. These tumors must be recognized because their prognosis and treatment is clearly different from the frankly malignant invasive carcinomas."

As Wendy has said have a look at the fact sheet for borderline cysts but it can be a bit confusing so don't forget to write down all your questions and go through them one by one. You need to be confident you understand what you have, how it's going to be treated etc.

Also whatever the outcome of your meeting next week you will soon have a plan and know more, there is so much waiting and it's part of this whole journey. Can be very frustrating and hard for some to cope with so take a deep breath and try to just go with it, it does help!!

Take care

Clare xx

PS I've edited my response due to ScardyCat40's comment - I did some more research and have altered my words despite finding a lot to back up my first response - however there is quite a lot of info out there which is very positive and that must be good.! ❤️

[ScardyCat40]

Excuse me but borderline cancer is a cancer its just a very slow growing one and is usually treated with surgery. This has the potential to be cured.

[Decca4Ever in reply to ScardyCat40]

I had a 22cm Borderline Ovarian Tumour removed 2 years ago.

My surgeon told me that Borderlines are clinically benign and cured by surgery. It's controversial what to call them. The cells aren't normal and they share some of the characteristics of cancer, in that they can spread and recur, but they are not invasive like cancer.

A small percentage have the potential to turn into low grade cancer, and most patients with low grade will also have Borderline cells. But the vast majority stay Borderline with an excellent prognosis - 98% for 5 year survival.

It really depends which doctor you see as to what they call it. As I said, it's controversial. The WHO decided to stop using the 'Low Malignant Potential' terminology and they now refer to them as Borderline Ovarian Tumours, either Serous - SBOTs or Mucinous - MBOTs.

You do need an expert pathologist as there are some indications to differentiate cells which might turn cancerous and all cases are carefully monitored with various screening routines. You don't want another Borderline tumour popping up and causing an obstruction to a vital organ.

I had an ultra-sound every 4 months but am now down to one a year. My surgeon told me I had more chance of being run over by a London bus than of any further trouble, but he is of the 'not cancer' school of thought.

[ScardyCat40 in reply to Decca4Ever]

I was told to think of it has a spectrum and yes they tend to sit on the surface of the ovary. I had birderline cells but mostly low grade and controversily some high grade. I was Stage IV at diagnosis I had ascities and a pleural effusion.

I just get a bit over sensitive when people say its not a cancer as I've had major surgery and about to start 4th line chemo

[Decca4Ever in reply to ScardyCat40]

Yes - I'm not surprised you feel sensitive about it. You've been really unlucky. Your Borderline cells were obviously the sort that are in the process of mutating to something more serious. Do they still refer to you as having Borderline cancer tho'? I'd have thought you'd be counted as Low Grade.

They're beginning to be able to identify the sort of Borderline cells that are likely to cause trouble in the future, but it sounds as if yours were further on when you were diagnosed.

I feel a bit of a fraud posting on this site because my surgeon was so cheerful about my prospects. My local hospital was very gloomy, no gyne-onc, so I'm inclined to go along with his optimism and reassure Borderline patients because I know what it's like to be told it's cancer. (See my profile for details.)

Very best wishes for your next line of chemo.

Sue

[ScardyCat40 in reply to Decca4Ever]

No it was mostly low grade cancer so that was the diagnosis they went with

[Decca4Ever]

Hi Lou - I remember so well the stage you are at. Waiting for scans and results is the worst. I was so scared I couldn't eat but my GP put me on a low-dose anti-depressant and gave me some valium until they kicked in. It made all the difference.

I only had to have one bout of surgery because I was post-menopausal and so they were able to do the full debulking of everything I no longer needed. I was staged 1C, because the tumour was so large it was difficult to remove without some leakage but it doesn't make any difference to prognosis.

Unless there is some doubt about whether the cells are really Borderline, it's very unlikely that you will have to have further treatment, just monitoring for 5 years, depends on the hospital. The cells are so slow-growing that they don't eat up the chemo like malignant cells.

Please see my reply to Scardycat for further information. I also recommend the ovacome fact sheet.

Best of luck with your surgery.

Sue

[Hidden]

Hope your scan went okay today yes its rubbish waiting for results, I wish you well and hope that the scan shows normal. The ladies above here have given you good advice and information so hopefully that has helped. Now that the scan is done, treat yourself to something different before you see the consultant that way you are taking away the focus from the results, Wishing you well

[Lou1968 in reply to Hidden]

Thanks Suzuki! I'm really trying to stay positive, but this is a scary time. I'll be relieved when I know exactly what I have to deal with. My best wishes to you. Xx

[Hidden]

I think some of the ladies on here call in scaniexty but I sincerely wish you the very best for the result

[Anna_girl22]

Hi Lou,

How are you going? I've just been told the cyst they removed is borderline and I'm super scared, wondering how you have been going?