Scared...large ovarian cyst/mass

Hi, really sorry to hear what you’ve been going through and know from my own experience how difficult those early days of uncertainty are - lots of tests and scans, and questions going round in your head, and (it feels like) no answers ! 

3 weeks seems a long time to wait for your results. Maybe the lack of urgency is a good sign as cancer diagnoses seem to generally get followed up more urgently but,  just in case, and to put your mind at ease one way or the other, I think it would be a good thing for you to chase up without delay.

Wishing you all the best, and it’d be great to hear how you get on if you feel like posting again,

Bx

1. 2 months ago I had 2 larges cysts, overies and tubes removed. Then 3 weeks aga was told I had ovarian cancer and need futher surgery. It's a shock because my GP was putting the pain down to fibromyalja and gave me gaberpentin, which I didn't want x

1. HI  Sorry to hear that everyone is going through a difficult time and i hope you all get good news soon.  My story is I have had consistent bloating, change in my bowel with pelvic and back pain so went to the doctor at the end of April. Was put on fast track at this stage.  Had blood tests and was booked for an ultrasound.  The CA125 came back at elevated at 69 and I was booked to see a consultant.  The consultant said the ultra showed a cyst on each ovary, one of which was large at 10cm and I would need a hysterectomy as non functional cysts.  Was sent for an MRI and they tried to do hysteroscopy biopsy but couldn't get past the cervix.  The MRI show I have a mass in my uterus that is the size of a melon. so I am booked in for a hysterectomy with removal of the ovaries and cervix.  Am told I am still on the fast track and they will do the biopsy after the operation  That was four weeks ago.  My question is what length of time is the wait from consent to the operation?  I was expecting the operation by now.  I am hoping because it has been a month, that means they don't suspect it is cancer.  

Hi I was told I would my operation within 4weeks, two weeks ago, Iv phoned the waiting list and have said its about 6 weeks. If I don't hear anything on wednsday I will phone them Thursday again. If your worried I'd phone the consultants secretary or the waiting list x

Fingers crossed for you and thanks for the advice xx

Hi Jax09

I had something similar, in that I was rushed into A&E with acute pain in my lower right abdomen. A CT scan showed a large cyst on the ovary and the ovary was twisted. Because the pain didn't subside adequately, then they removed the cyst and ovary the following day. They said that nothing looked abnormal when they looked about inside, but a few weeks later I got a letter for an appointment with the gyne oncology team. :-( It turned out that I had a dysgerminoma (a rare type of ovarian cancer) and they found some abnormal cells in my peritoneum. I then needed a second op (a 'staging' op) to remove my womb, other ovary, fallopian tubes, cervix and bits of omentum. Luckily, they found nothing further and now I am half way through a course of adjuvant chemotherapy. 

Have you been given a blood test that looks for CA125? This is a typical marker for ovarian cancer. You should be able to get your blood test results. Have you asked your GP surgery? Mind you, it may be better to wait for a specialist to contact you so they can talk through what findings (if any) they have made. My CA125 levels were low by the way, so none of these things on their own can tell you much. It may be that they do one surgery to remove the cysts and to 'staging' at the same time, so that would save you a second op.

I found the waiting to be really hard and worried loads. Be strong and try and distract yourself by keeping busy.

Ethel

It took about 4 weeks to get a surgery date for me from my consultation. I would phone the hospital/oncology team and ask when you might expect to hear. I did this and it was at least comfort to know that someone was trying to fit me in and I hadn't been forgotten about.

Hi, I hope you don’t mind me jumping on here. I was only really seeking some support and advice I think. 
I have been diagnosed with stage 1C dysgerminona and I have had my right ovary removed during surgery. I have been told now that I won’t have chemo YET and I have been booked in for a further MRI scan and bloods. I’ve been told I will be monitored every 3 months now.. they have said it’s likely it will come back and may need chemo at some point .. the unknown and the unclear is playing havoc with my mind.. any one have any similar happen to them? 
they said it’s very curable and so even if I have to have chemo that’s positive but I hate the unknown. 

Thank you. X

That sounds a really horrible position to be in, I'm sorry. All I was told was that without chemo my dysgerminoma had a 30% chance of returning. With chemo it was about 5%. When you look at 'normal' ovarian cancer stats (don't, they're scary!) you get reoccurance rates of quite high percentages even with chemo - so your consultant may feel that for quality of life purposes, not putting you through chemo when there is a relatively low chance or reoccurance is acceptable. Chemo was pretty crap and I wasn't really able to work while I went through my 10 weeks of it. I only felt that I was having chemo to fight a probability rather than actual cancer though. At least with regular checkups they will spot any reoccurance very early and the chemo will get rid of it very effectively. If you are young and not completed your family yet, they may be taking a more conservative approach to provide you with choices and options rather than going in aggressively to treat something that can be treated effectively if it reappears, and they will know if it reappears because they'll be giving you regular scans. Horrible living with unknowns, but at least they are now 'known unknowns' rather than 'unknown unknowns'!

Sorry my late reply ! I haven’t been able to get logged back in! 
I had a reoccurrence in March and I have had three rounds of Carboplatin.. I am now waiting for a scan on Friday and results to come through to see if the cancer has gone or I have to have more treatment. I’m very nervous.