I received the diagnosis on Friday (9th Dec) that I have advanced (stage 3) OVC, I was shown the scan and I have two large tumors and some on the surface of bowel and surface of liver (or was it kidney - i forget) and the omentum.
I was told they can get me to remission.
I need to have a biopsy to determine the type and was told there was a waiting list and was not given a date.
I was told that they are "aiming for a clinic on 21/12/11 to meet chemotherapy Dr."
My abdomen has swolen from nothing to 7 month pregnant size in 6 weeks I am concerned that any wait is too much.
The doctor to consultant/ct scan/diagnosis has been 2 weeks and I think is the best anyone can hope for.
But I want to start treatment tomorrow!
Should I make more fuss, is a delay of two weeks to first chem significant?
I am also in more pain now I've been told, is this to be expected and is more to do with the shock than the disease?
Oh and is this rapid swelling normal? normal for OVC .
So sorry you have had to join our ranks but we welcome you and will try to give you all the support we can.
First of all - we are not professionals so certainly don't take anything we say as gospel. Does your tummy feel as though it might be filled with fluid? I had that before I was diagnosed (4 years ago and counting). If so it might need to be drained before you start chemo. This proved to be good news for me as I had to go into hospital over a weekend for this to be done and I was given my first dose of chemo then so I jumped the queue. Its called something I can't spell like ascetes (?) and it didn't return. May be call the hospital and see if they think you need to be seen sooner.
You must be in a complete state of shock and horror at the moment. But this will get better when your treatment gets underway and you start your fight back!
Love Sarah
Hi
I was diagnosed two years ago (Stage IIIC) and from seeing my GP (who was good and immediately referred me) to starting chemo was two months which is the maximum time in the guidelines that they have to get treatment for you. However this came about because initially they were going to schedule me for an operation (which I was told would take place within six weeks) but then they decided they wanted to shrink the tumour with chemo first before operating so all this delayed the start of treatment. Whilst I initially had not felt too bad my cancer was quite aggressive and I felt quite uncomfortable by the time I started chemo. If you feel uncomfortable you must let them know and also you should have been allocated a nurse specialist who you can contact and chase up re the biopsy as they should give you some indication of the likely wait. They should move quickly on this and I wouldn't have thought you should have to wait any more than a couple of weeks for the biopsy.
I hope all goes well. You will get plenty of support on here so don't hesitate to ask questions.
Best wishes
Anne
Thank you so much for your quick replies. They have been very helpful and reassuring. I will be speaking to my GP tomorrow.
Sorry to hear you have joined us, you sound very much like I felt when I was diagnosed.
I also had stage 3, though not as advanced as you. It took 1 month from initial diagnosis to my first chemo. It may have taken longer, but my gynaecologist threatened to send me to the Royal Marsden to get me treated quicker, chemo within a week!
I did a lot of phoning, my gynaecologist and her secretary did a lot too. So yes, it is worth chasing them. I also blew up like a balloon with the fluid mentioned by sarah, I had 15litres drained off, it is quite common. Once I started chemo I could see my stomach shrinking daily! I had 3 chemo sessions, followed by the op, and three more chemo. I also had quite a lot of pain before treatment, there is plenty of strong painkillers, so you dont need to suffer, I ended up on patches, oramorph(if needed) and diclaphenic. It worked!
You didn't mention a CA125 result, well mine was over 3000 before treatment, it got down to 37 before my last one, and was 21 at my 6 week check. Anything under 35 is normal.
I hope this is helpful to know that the sypmtoms you are having are common, I know it feels like every symptom is only happening to you, it certainly did to me, so your not alone. There are lots of us out here that you can talk to whenever you need to, so don't feel isolated.
Good look, and keep on at them to get treated
Chris
Dear Sheila - I hope your consultation with the GP goes well today. Mine was wonderful getting everything processed very quickly once I'd had a scan and blood test to diagnose Ovarian Cancer. Much as I disapprove of private medicine I paid for the initial scan as my GP said it would be a 6 or 7 week wait for that within the NHS. It was the best £120 I've ever spent as I was referred to a gynaecologist within a week and to a specialist Oncology Gynaecologist a week after that with an op scheduled within 4 weeks of the diagnosis.
I hope you get the appointment on 21 December. It probably seems an age but worth waiting to see the best person. As I understand it you will get the maximum benefit from seeing a specialist Gynaecologist/Oncologist who are best qualified to remove as much as they can of the cancer. It may be you will be offered surgery before chemotherapy, or chemotherapy first to shrink the tumours, then surgery followed by more chemotherapy. I had a hysterectomy and debunking after diagnosis and then a seven week wait before starting chemotherapy. My diagnosis was Stage 3C with the more aggressive type of tumour. I completed my course of chemotherapy in November and it has removed all signs of the cancer for the time being. At least for me the wait to start treatment didn't seem to have an adverse effect on the outcome. I hope this is a comfort for you.
You have been through an awful time in the last few weeks and it's good you've found this site which can be a great source of companionship and comfort. I'm not an expert to give you any advice on when it's best to start treatment, but it does at least give you time to absorb all the information and prepare yourself.
I hate to say welcome but am sure you know what I mean when I do say - like others have said we are here to help and support.
My diagnosis in 09 came about because I had a postmenopausal vaginal bleed that turned out to be a cervical polyp. I had attended A&E only to be told 'something' could be felt in my abdomen. To cut a long story short that was on 6th August, polyp removed at local hospital on 20th Aug and meanwhile I had various scans, tests etc at a major London hospital. Mass on R Ovary. Had ALL my bits taken away on 6th Oct. Still did not know what was there but got results day prior to my 50th Bday - was stage 1 Borderline but managed to take it all away. No further treatment so all in all I thought a rapid treatment window.
I would push to be seen - of course you are going to be concerned like we all are on here and if you are in pain then see your GP for help. There is loads of help on here and out there too - Macmillan nurses etc.
Wishing you all the best with your treatment hun. Do keep us up to date
Like the others, sorry for the reasons you're on here but welcome anyway. I post but rarely although I make a point of looking in every day and it is an extremely supportive and welcoming place.
I was tested then diagnosed back in August and because I had a lot of fluid on my stomach too which made diagnosis difficult until it was drained; then the full debulking op' followed by a couple more ops because I haemoraged badly aftewards, I did not start chemo until nearly two months after the initial diagnosis. My CA125 was also in the scary division but now after 5 chemos and 1 more to go it is 7 and the mid-chemo scan was completely clear so delay isn't necessarily going to be a bad thing long-term.
I'm in France so can't talk about how long you should expect to wait but I know two people in the UK - my mother who has non-Hodgkins Lymphoma at the age of 89, and a school friend of my husband's who has pancreatic cancer and is still going strong after 3 years - remarkable for that form! Both insisted to their gps after an initial diagnosis and poor prognosis, on a second opinion which both got. My mother is now going to the Royal Marsden where she is being treated seriously and not as a stupid old bat who no longer deserves to be treated because of her age, and the friend at Addenbrokes where he is getting into lots of trials and has never been wrtten off as untreatable as he had been at the previous hospital. So persist! If you're unhappy with the way you're being dealth with, don't put up with it, ask to go elsewhere. It's your right - you don't necessarily have to go private to get the treament you deserve and need.
Good luck.
Hi,
The official answer to your question is once it is thought to be cancer it should be orange flagged, and every appointment should follow within 2 weeks (or that's what they told me!).
of course verny case is different, but if they are doing all your tests and gettingyou an appointement for the results by 21st it looks quite good to me. My consultanat always says it doesn't matter how long you wait to beging treatment, but he is not the one with it! I agree it sounds like you might have ascities, but hopefully your GP will pick this up and follow through with and get it drained. I had this done for my abdomen on 21st Dec last year, then my lungs on May 31st. It is just a sign that the body is not clearing fluids as quickly as it should because of the cancer.
I hope they manage to sort you out, and you know the answers before christmas, so you can at least enjoy your self before the treatment starts.
Love n hugs
Viv
Thanks so much for getting back to me. Feeling a bit better now I'm having a biopsy tomorrow.
For some reason the swelling seems less so that's something.
Your comments have been of great comfort to me and I will definitely keep in touch.
Love - Sheila
Hello again,
I've got a chemo start date of 10th Jan.
So to answer my own questions it will be 6 weeks from first specialist consultation to chemo.
Sometimes this seems pretty good considering the number of tests that have taken place.
Sometimes 6 days wouldn't have been enough for me.
The chemo specialist tells me that if I needed chemo sooner I would have chemo sooner - I can't help obsessing about time though.
Given the advanced stage and the need to shrink it before they operate should I explore alternatives to perhaps save a week?
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