Ovarian Cancer?

[seeminglyso]

Hi there,

I went in for surgery for endometriosis on Friday (I have pretty bad stage four). He found it was all over my bladder bowels etc and will need a further three hour op with a bowel surgeon. None of the work was carried out as he found a tumor (cauliflower looking) about 4cm by 4cm (it was thought by the sonographer this was an endometreomia) and so this was removed using the bag technique and he did a peritoneal wash.

Its been sent for urgent biopsy but he suggested it could be cancer could be boarderline.

I have a toddler and I am absolutely terrified.

#Housepricesarecrazy# - Thanks for that I may see what I can do there. Have you had personal experience of either. I am in the North.

Thymeout if you are interested in the studies there is a facebook group and we have put up loads of the most relevant research with stats up there. Most are from peer reviewed oncology journals. The survival rates are just under 100 percent for stage 1 but once you get into the realms of stage 2 onwards and implants things start to change. Its not actually as clear cut as it seems and the lack of understanding about what turns these things malignant and being able to predict invasive behaviour is really worrying. That said the prognosis is excellent for stage one with no invasive implants and not micro papillary.

I desperately want them to hurry up with my care they have sent me a CT scan for three weeks time....I cant quite believe it. Because of my misdiagnosis initially I have waited nearly a year to have surgery which should have been a two week pathway to an oncologist. I feel so disempowered with it all.

Many thanks, Seemingly. I'm not on Facebook - it feels like prying into my children's private lives - but will ask my daughter to do a search.

Did they stage your tumour? I know it's useless to say, 'Don't worry'. My first CT appointment was for 2 1/2 weeks, and I wanted to go private, but my GP talked me out of it. Told me to ring my consultant's secretary and ask her to speed it up, which she did and arranged an MRI for the same date. But I was on the 2 week pathway because my age meant I was high risk for ovarian cancer. All my scans were 'inconclusive'. As was my biopsy.

But at least you know that it was borderline and it has been removed, which is the treatment for borderline tumours. All the rest that I had taken was because they didn't know if it was cancer or not at that stage - and I no longer needed them anyway.

I was going to add to my previous post, re whether it's cancer or not, the fact that chemo doesn't work on BOT's, and in fact the outcome with chemo seems to be worse than without it, is another factor which differentiates it from cancer.

Btw, after my first, and only, appointment with Dr Doom at my local hospital, I went to my GP and was given anti-d's and valium to take if I needed it while waiting for them to kick in. They've been a godsend. Without them, I was so anxious I couldn't eat.

P.S. Seemingly

I've just read that the WHO has recommended that 'Low Malignant Potential" be replaced by "Borderline Ovarian Tumour' as the preferred name for the condition. They seem to be moving further and further away from the cancer nomenclature. I think your hospital is a bit behind the times.

It all seems to depend on the surgical staging. A lot of discussion on whether it's worth going back and doing a laparoscopic staging if it wasn't done properly the first time. That might be worth asking your consultant about, given that your surgeon wasn't an onco-gynae and wasn't expecting to find the tumour. If you're having the ovary to which it was attached removed, they could do it at the same time?

seemingly wishing you all the best with this. I thought you might like to hear from someone a long way off in time from this diagnosis. Hopefully what I've got to say will be reassuring.

I was in the same position as you 16 years ago. I had my ovary, the cyst and my Fallopian tube removed. No other treatment but I had five years of follow up, initially very frequently, ie bloods and scans. I had DS during that time - they would have removed everything as a precaution had I not wanted to preserve fertility, I had no children at the time and had just got married ( I think it was the tight bodice of my wedding dress that finally set off the pain!). The all clear was a long time ago and all has been fine since.

It was described as stage 1 cancer but as I say that was ages ago. The follow up was at the oncology clinic but once I got my head round it all, it was ok. The worst part was during a pre-OP talk with the surgeon when I realised that this pesky lump might be cancer and I fainted with fear - I had been in a lot of pain and was more bothered initially in getting rid of the pain than what it was. It's the only time in my life when "rug pulled from under you" happened. I can really sympathise with the uncertainty you're feeling, everything's new and strange and uncertainty doesn't help at all.

I can't remember any of the details about the nature of the tumour I'm afraid although they did say "borderline" as well as stage 1: it is confusing isn't it?

All the very best,
Tiger

Thymeout Hi again, well I called them up and they stated that my CT needed to be before the MDT (tomorrow) so I had it yesterday...strange feeling when they pump the iodine in..you feel like you are wetting yourself! Anyway even though they wont have the results there will be a radiologist there to interpret it so I am really pleased about that as its more information for them to go on. The specialist cancer nurse called and said she will feed back to me tomorrow so that I know what is being suggested as I have an appointment with the oncologist on Monday. Thank God things are moving now as I just want to get all this over with and get on with being 'normal' again. I think what is likely to happen is have the ovary and tube taken out and have full staging then. I wonder how long I might have to wait for that.

So was your CT scan of no help then?

tigerdriverII I do really appreciate you telling me about your experience. I have to say yesterday I was in a dark place as I was reading borderline stories on Inspire and Medhelp and I have to say they were all doom and gloom with reoccurrence of borderline and full blown cancer. I then read a study on 85 women with borderline and 27 of them died with malignant cancer within 20 years of diagnosis (which given I am only nearly 34 has really worried me). It also gave the impression in the study that its not if but when, in terms of reoccurrence and that the figures tend to be so good because women are not studied in terms of outcomes beyond 10 or 15 years. I just feel at the moment that I will have this black cloud over me for the rest of my life. I am very worried about fertility as I also have stage four endometriosis and it looks like now IVF would be off the cards due to the effect of the ovulating drugs.

I never really got a proper feedback about my scans and biopsy. (The only blip. It was left to a secretary to tell me on the phone that the MDT recommended I should be transferred to the onco dept of the teaching hospital. She went far beyond her brief and gave me a lot of misinformation which had me turning up to see TopDoc convinced I had inoperable Stage 4 cancer. The first thing he said to me was 'I think it's benign and will be operating in thirteen days' time.' She'd actually told me 'No surgery. It will be chemo.' I hadn't even had a biopsy at that point. My GP thinks I should pursue this. Breaches all sorts of guidelines.)

I had MRI pelvic and abdominal, plus CT abdominal and chest on the same day. I think they were useful for surgery and to see if there were any signs of mets on other organs - they couldn't tell if it was borderline or malignant at that point and were operating on a worst case scenario. But you know your tumour was borderline. They're probably looking to see if other ovary is affected. Also, what to do about your endo so they can give you the best advice about fertility conservation. But I think they will transfer you if there isn't an onco-gynae on the team. You need one to know what is not malignant as much as to know what is.

You and I are at opposite ends of the spectrum, psychologically. For me, 'borderline' was fantastic news, because it was much more likely to be cancer. But, at your age, it was more likely to be just a cyst so 'borderline' sounds worse. And you've got the fertility and endo issues to deal with as well. But really we're both in the same boat on the most important point. We've both had tumours removed which weren't cancer. Focus on that for the time being.

Re Google, it's a double-edged sword. So much is out of date. If the study you refer to is based on a 20 yr follow-up, the original diagnoses were done 20 yrs ago and so much more is known now about the correct way to diagnose and stage the condition. Some of those diagnoses would now be classed as inaccurate and would not have had routine follow-ups. Quite a few mucinous tumours were wrongly thought of as primaries when, in fact, they were secondaries from appendix or colon, which would obviously have a less optimistic outcome. This doesn't apply to serous, which is what you had.

Very glad that things have speeded up for you. I'm sure you'll feel a lot better when you get some informed opinions and a plan.

Best wishes for tomorrow.

Yes you are right about my age being a factor in likely outcomes, but I was really fortunate in that the consultant was quite clear to me this was serious and the 'worry' was that it was cancer. I am not daft, I knew they didn't bring you into a private room, tell you to call your husband and tell you they couldn't operate on you because they think you may have cancer, unless it looks pretty bad. Given how symptomatic I was I had ten days with my husband were we really did consider that my prognosis was unlikely to be good (ovarian cancer can spread from 1 to stage4 in less than a year and I knew I had the mass for over a year). It was hell, so borderline was a 'relief' but at the same time devastating given the surgery options for someone my age. Its only now a month on that I am licking my wounds about what it means for me really. Even going in and being told my endo was so bad - as bad as it gets - requires another 4 hour operation with a bowel surgeon, would have been dreadful news. So yes it was still 'fantastic news' to some extent but its so rare and I have a strong history of stroke and heart attack in sibs and parents that a surgical menopause at 34 raises all sorts of additional health issues for me too.

I did wonder about those studies, whether some of those women were initially misdiagnosed? Thanks for reassuring me on that one. Thanks too for being so supportive .. I really wish you did have a facebook account, I think your experience would be invaluable to those of us in the early part of our journey.

Oh poor you! I do get how you must feel, especially with a little one. Tbh, I'm not sure you were that fortunate in your consultant. He should have emphasised the possibility of borderline more. Age and so on. But ime, local hospitals do tend to be more doomish, because they don't see many BOT's and their brief is to take the most pessimistic view so they don't miss referring patients onwards. They don't know enough to be able to say 'I don't think this is cancer, but....' especially without lab results. The most positive thing about mine was the fact it was so big and I was still standing. But yours was small enough to be more easily confused with a malignancy.

And when I got my definitive diagnosis - 'you had a borderline ovarian tumour. The treatment is surgery, which you have had. You are cured.' - all I had to do was recover from surgery, which has been a breeze in my euphoric state. Even so, I'm still processing what happened to me. I used to be very level-headed, the opposite to a hypochondriac. The other evening, I poked myself in the eye and it hurt. My head is the only bit that hasn't been scanned. I immediately thought of a tumour behind my eyeball until reality kicked in when I imagined myself going to my GP and saying, 'When I poke myself in the eye, it hurts.'

Did you need IVF with your first child? A distant relative of mine has just given birth to her second. She has bad endo and only one functioning tube plus a husband with sperm problems. Managed to conceive first time around, with whatever they do to boost sperm count. Then had a surprise naturally conceived ectopic which messed up her tube. IVF for the second, no problems re drugs that I've heard of.

But I'm out of my area of expertise here. Fingers crossed for tomorrow and I'll talk to my daughter re Facebook.