Borderline ovarian tumour - new girl

[westendlady]

I recently had bilateral salpingo-oophorectomy followed a few weeks later by laparoscopic hysterectomy/omentectomy. I was told after the first surgery that I had a borderline serous ovarian tumour stage 1b and the multi-disciplinary team advised completion surgery. The biopsies for the second surgery came back as fine (thank goodness). I am so confused! Have I had cancer? I feel so upset over all of the worry I have gone through. I am due to return to work and don't know what to say to my colleagues. I feel a fraud when I read about what some of the ladies on this forum have gone through. Am I being over dramatic if I say I have had ovarian cancer?

[85live4ever]

Hi there, please don't feel like a fraud because you are not. It might be an idea to ask your care team the full details so you clearly know where you stand. I know there are ladies on here with borderline oc & I am sure someone will be able to help.

It's sounds as if it's been found nice & early but you still have every right to feel emotional you have been through quite a lot. I wish you all the best for a full recovery take care Cindyxx

[westendlady in reply to 85live4ever]

Thank you Cindy. Your reply is very reassuring. Sue xx

[Lily-Anne]

It is still considered to be cancer were you offered chemo?

Welcome to the site

LA

[westendlady in reply to Lily-Anne]

Hello Lily-Anne

My Consultant said that I did not need chemo, it would not be effective as my tumour was slow-growing.

Thank you for your reply and welcome. I have felt quite isolated since my surgery. Sue xx

[Marieloiuse]

Hi Westendlady.

I know exactly how you feel but in the weeks and months to come you will be so glad that your prognosis is so good. But I would check what exactly your diagnosis is. I feel a fraud too sometimes because mine was stage 1 and my treatment was also surgery alone. I was surprised I didn't have chemo as back then (1988) all I could find out that OC was the 'silent killer'. But I asked, and I had definitely had a malignancy albeit contained so no further treatment.The women on here are amazing and highlight to me how fortunate I was and how I doubt I could have handled with such fortitude the stuff they have to go through.

Wishing you all the best in your recovery and find out for certain what your histology was to help you deal with what you had. It looks like you were one of the very lucky ones.

Catherine x

[westendlady in reply to Marieloiuse]

Hello Catherine

Yes, I am fortunate - it is good to speak to people who have been in the same position as me. The worry is that I could have a recurrence elsewhere in the future, but this seems quite unlikely hopefully.

I am so grateful to the ladies in the group for their replies to my dilemma.

Very best wishes xx

[charlie12]

Hi there

Welcome and sorry you had to join us. I had a similar monster removed in 2010 and am still around. It has been a rough ride at times , but way less than most others. There is a low risk of it coming back , but the fewer female parts you have the less likely this is.

Understanding this is hard and explaining it is even harder. I say that I had a tumour that was not benign , but is considered a non-invasive form of ovarian cancer. I believe that other organs can have similar types of cancers.

You will probably need time off work for check ups for a while, so it might be best just to tell your colleagues the truth. I'm sure they will understand.

There is a facebook closed group for borderline ovarian cancers , which I found really helpful and was started my a friend. Most people find it really helpful , so have a look and join it.

Very best wishes xxx

[westendlady in reply to charlie12]

Hello Charlie 12

I am so grateful for your reply to my post. What you said has made me see things more clearly, especially when you say it is a non-invasive form of ovarian cancer. My head has been all over the place, but I am glad I have found this group and the support it offers. xx

[Decca4Ever]

I had a mucinous Borderline removed - along with everything else - 3 years ago. My consultant said it was controversial among doctors whether to think of it as cancer or not. The cells aren't normal, but they're not malignant either because they don't burrow into other organs, like cancer, but just sit on the surface. There's only a small chance of a recurrence, and only a small chance of that recurrence turning into cancer. Something like 2% of 2%?

They don't do chemo because it killed more patients than it cured. The Borderline cells are so close to normal that they'd need huge doses to kill them off. Chemo works on fast-growing cancer cells because they're greedy and wolf it down in small doses before normal cells are harmed.

He was in the 'not cancer' camp. And I think the Macmillan site also says that it is different from OC. But just in case you're one of the unlucky few whose cells are in the process of moving from Borderline to malignant, they'll keep an eye on you. My tumour was enormous - over 2 kilos! - so had obviously been there a long time and it was still Borderline. I'm now down to annual ultrasounds and bloods.

I had a horrible time before surgery because my first hospital did think it was cancer and told me so. (Have a look at my profile for details.) So I know how you felt. But TopDoc was so reassuring that now I just feel very lucky.

Best wishes to everyone on here who hasn't been so fortunate. Hang on in there. The new drugs coming through look very hopeful.

[westendlady in reply to Decca4Ever]

Thank you so much for your detailed reply. I already had a look at the Macmillan site and it just left me more confused! I am so glad I found this site and the lovely ladies like you to help me put things into perspective.

Best wishes x

[Janey78]

Just been reading your posts and I'm delighted I'm not the only one in this lady's position. I was diagnosed with ovarian cancer 4 months ago and was told I would def have chemo. At 38, I had a full hysterectomy. I had a huge support network of people who did everything for me. 5 weeks after surgery I met my surgeon who told me it was a borderline micro papillary carcinoma, no chemo needed and go back to work. No explanation was given.

Thank you for sharing your story because I feel such amazing relief that it's over but feel a bit of a drama queen

[westendlady in reply to Janey78]

Hello Janey78 thank you for your reply. It seems that it is the word 'borderline' that causes so much confusion. I was told prior to surgery (BSO) that I definitely did not have ovarian cancer only to be called to the out-patient clinic two weeks later to be told I had borderline serous ovarian 'tumour' and I would need a hysterectomy and omentectomy. The consultant called me after my second surgery to say the biopsies showed no residual cancer!

One of the ladies on here suggested saying that it is 'non-invasive ovarian cancer', which made sense to me.

I really understand your frustration and thank you for sharing your story.

xx

[Maus123]

You have a choice of how you look at it.

I had widespread stage 3 serous borderline tumours and some micropapillary low grade serous tumour cells removed, along with a bunch of other pelvic-based organs which apparently didn't pay rent and had to go.

I had dropped into a deep abyss of despair in those weeks between initial diagnosis (where they thought it was the standard aggressive type, due to high ca125, ascites and the works) and the post-surgery pathology results.

The biggest deal for me was though that I ultimately did not receive chemo therapy, although my German surgeon recommended it because of the low grade malignant cells.. but my oncologist at the Royal Marsden regarded it as borderline 'class' for treatment purposes.

Some of the other effects are similar to 'real'/malignant cancer tumours though, e.g. the initial shock, the aftermath of a total abdominal hysterectomy and the lovely surgery-induced menopause, plus the still remaining worries of a possible recurrence. So I think it's justified if you call it cancer if you like. You could always qualify it in some way, like non-invasive or non-aggressive etc.

In other respects, you are probably happy that it was the borderline kind, thus much less risk of recurrence and not actually 'eating' into your organs. So you could also consider it a one-off annoying not-quite-cancer tumour (and tell your colleagues what it was) , which will probably stay away for good... and move on with life.

[westendlady]

Thank you so much for your reply. I think I am still 'shell-shocked' over having two lots of surgery within weeks. Yes, I am really happy it turned out to be a borderline tumour and it will take me some time to put the whole nightmare of the last few months behind me! One good thing is that I went through the menopause years ago.

You and I are lucky ladies and may it stay that way!

Best wishes

[Jessfrogg]

Hi. With me I had a complete hysterectomy so both ovaries uterus tubes cervix but they didn't take the omentom. I had a malignant tumor but the surgeon didn't see anything so he thinks he got it all with the surgery so I didn't have to have chemo. Well shall I say I get my pathology report from surgery on this coming Tuesday and that will determine if my Oncologist feels there is a need for chemo. I don't feel like a fraud at all. Blessed is what I feel after all the terror of finding out that at my age with small children I had a cancer. Please don't feel like you didn't have the right kind or right stage of cancer. You still had to go thru all of that. Even if it was borderline. That is more than serious!! So glad they caught yours so early and hope you are feeling better after your surgery.

[Jessfrogg in reply to Jessfrogg]

Oops just seen your post saying your surgery was a year ago sorry. Lol. I didn't read all the posts before I sent you mine