Worried about my partner

I was asymptomatic when I was diagnosed but on my last two relapses I had ascites (fluid) build  up but I also had other symptoms, specifically bladder twinges, loss of appetite, and a low pelvic ache like period pains. These sensations were consistent and did not vary across the day and steadily worsened over the weeks. Its very difficult to diagnose OC on symptoms alone though once you've had it diagnosed the docs trust and indeed rely on our reports of new  symptoms. 

As you have already raised the possibility of OC with your partner, i don't see what else you can do for the time being. She may be waiting to see if things settle down. Starting investigations into OC is frankly terrifying. I think if her symptoms continue to develop and worsen, a tipping point will be reached and she will act. 

I'm sorry to say that the bloating - while could be many things - is worrying at your partner's age (or any age unless diagnosed with IBS etc). I had bloating and thought it was IBS / too much bread / stress. I had never had IBS or bloating before so I should have realised this was something to be investigated.
I have OC and am doing chemo post hysterectomy. There is a question mark about spread to my bowel. The 15 x 15 x 12cm tumour (that caused my bloating along with fluid build up due to the cancer) was stuck to my small bowel but was peeled off during surgery so I didn't need any of the bowel removed but arguably I should have, because they say now cancer cells could have been the cause. It may not have been the cause. They simply don't know and we won't know until it shows up on a future scan. BUT (and this is paramount) my oncologist said had that my operation been done even 2 weeks later, the cancer would have had spread to my bowel without doubt because while it was contained within the ovarian capsule (they THINK) the tumour would definitely have broken through the capsule wall. At that stage, it can go anywhere. If you can remove the cancer while it is still in the ovarian capsule, then your partner has a 95% chance of survival beyond 5 years and more, may not even need chemotherapy at all.  If it breaks out of the ovarian capsule then the stats drop dramatically.

You really do not want to mess with OC if that is what it is. Please, keep on at your partner.  She will thank you. 
Let us know how she gets on.  Pray it's nothing but having some blood tests and a trans-vaginal scan really isn't much to go through to save her life. 

Emily

PS my other symptoms were different but they do vary. So I had constipation yet stools were not hard or big, just hard to pass, tiredness, bloating, and didn't have much appetite (given the bowel was all muddled up with the tumour this  all makes sense)

PS I am also slim, so my bloating was pronounced.  I probably looked 4-5 months pregnant.
My subtype of OC is rare. Tumours are thought to grow at 1cm per month.

Hi EmCee71!

Sorry to jump on this thread but your post reminded me very much of the situation that I am in! 

I was diagnosed with endometrioid ovarian adenocarcinoma in Nov and had surgery in Feb where it had grown in size from 14 to 22cm. The surgery was nowhere near as extensive as the surgeon suspected it might have to be and just the right ovary and tube was removed with a "small patch of wall of distal ileum (firmly adherent to tumour capsule") so I have been very lucky. It was not a gynae-oncologist that performed the surgery though so no other biopsies were taken to ascertain any other spread etc. There was a discussion about taking me to theatre to ascertain but I have now had an MRI last month which was clear so it looks likely that they may just monitor for the moment as they think after 3mths, if there had been any cells left, they would have grown enough to show on a MRI by now.

As it stands, histology say it was grade 1 and the thinking is that it is probably stage 1a too as confined to the ovary. I have been concerned by the "small patch of wall of distal ileum (firmly adherent to tumour capsule" comment but the surgeon was dismissive and said that it's really nothing to worry about - it was just so that the capsule could be removed in tact and he didn't have to cut into the tumour etc. As such, the gynae-oncologist is dismissive about it and says "firmly adherent" doesn't mean spread/gone into, especially as the report says the capsule looked to be in tact etc.

Was yours staged as 2B because of the bowel and the fact that it had to be peeled off it? I was interested to read that they managed to peel the tumour off yours.

Sorry, I hope you don't mind me asking! I also hope chemo hasn't been too bad for you!

Hi Glass Not Full

Wow, similarities indeed. Sorry to hear about your DX and of course I don't mind you asking. I'm glad you jumped on.
Yes, it was partly the adhesion(s) to the sigmoid colon (so not that it was peeled off, more that it was stuck and was it cancer or inflammation that had caused it to stick) that led to this 'provisional' staging (also referred to as having been done 'out of caution' that was on the phone to the McM nurse who called me to tell me my staging)

But also it was a 2B not a 1A because the tumour had edged to the inside of the capsule lining - this was told to me by my oncologist.  Nothing was found on the surface of the ovary).  So a lack of 'clear margins' of healthy tissue which would mean a 1A staging.  The McM nurse also said that staging me this way opened up more treatment options.  Even Clear Cell ladies with a 1A are not always advised to have chemo . My team felt they wanted me to have chemo. Even though it only works in less than half of CC cases.

It's very confusing though to me and here is what makes my head spin:

If two things have stuck together (ovary and sigmoid colon) and the ovary didn't have cancer on the outside, it would be very odd to have cancer on the surface of the sigmoid colon! BUT I still don't understand why the surface of the bowel was not scraped. Or even if they biopsied the actual sticky bit left on the ovary when removed.  

I have not seen my surgeon since after the op when I was on morphine!  But he is top of his field in my county and a gynae-oncology surgeon so I do have to trust him.

I have not seen my pathology report nor a full surgical report. I think I should because I am now 6 months post surgery and not yet had my 1st scan since surgery (last chemo is a week tomorrow, scan will be after that).  That is a LONG time to have no scan given they said 'we think we got it all out but we cannot say 100pc and I am naturally worried. On the other hand, I'm doing chemo, so that is the course of things now.

I find it encouraging that your doc said surely something could be seen months later if there had been anything there. My type is thought to grow 1 cm in a month or at least the primary tumours do but I believe 'recurrences' (undetected spread not seen at time of surgery or biopsied at point of surgery) can be slower.

I will not suddenly relax after Scan 1 but I am going to ask my onco at what point  she might say 'OK well it looks like now it actually was a 1A' .. when I see her next week.  Maybe in around 2 years time??

Thanks again for getting in touch!  Keep us posted about your next scans.

Emily X

Hi Emily,

Yes, I requested my surgical and pathology report from the hospital - you don't need to get it from your gynae-oncologist. It didn't take long to come through.

My report said there was no other organ attached but there was nothing about any clear margins other than it appeared the capsule was in tact and no evidence of exposure etc.

It does seem a long time - but then again I have heard different things. One nurse told me that it's probably likely I will have a CT scan in 3mths and then if that's clear too - that will be it in terms of follow up etc, which did shock me quite a bit. Even at stage 1, I thought I would still be monitored with scans and blood tests - I've not had another blood test since a month before the surgery. 

I think every hospital and doctor is different. 

Interesting re 'recurrences' but that does make sense - if they could be seen or biopsied, then there wouldn't be recurrences I suppose! 

Indeed - at least with regular monitoring you can hope and expect that anything untoward will be picked up quickly. As you say, if the staging can be lowered, it will be even more of a relief for you as the chances of recurrence are lower with a lower staging etc.

Will do. Thank you - and I hope you get a scan soon! 

Take care x

Many thanks everyone for your replies and advice, much appreciated!