I am really scared the team are not going to remove these tumours imminently and therefore my risk of ovarian cancer is increased
The nurse consultant stated this is due to the extensive adhesions in my abdomen has anyone else come across this situation. I don't care if I end up with a colostomy I just don't want irreversible cancer!
You probably need more info. no hospital dept is going to knowingly neglect cancer treatment these says. Ring Ruth ( nurse, patient, lovely!) at Ovacome.... It's often a lot more complex than we patients know about. She will give you relevant and reassuring info. I am sure. Don't wait all weekend, worrying! Her number us 0845 371 0554. All the best,
Love Wendy xx
also if they wont remove the adhesions because they think they do not know how, its worth researching to see if there is a surgeon out there skilled enough who can.
We are here for you
Jackie xxx
Thank you ladies. Apparently I am to speak with oncologist Mr Kirwin today sometime after they have made their decision x
Hi there
Thanks for the update and so sorry that you are still going through this. It is best though for you that the doctors get lots of advice before they open you up. They really cannot tell properly till you are opened up and they need the best people there to ensure the best outcome for you.
I had an MRI scan when l first got ill and was told that it was definitely a cyst. On that basis I delayed the surgery and went on a holiday we booked...long haul activity. I had the opportunity and thought that the doctor was behaving strangely , but thought no more of it.Then at my check up 9 weeks after the operation she told me that I had had borderline tumour, five months after I first went in !
I so hope that you get some resolution in terms of an agreed treatment plan today. Ask your oncologist for a contact number or email address in case you have questions later.
Good luck
Charlie xxx
Oh Charlie. Thanks for that. I've got the direct line to be honest I am just trying to wait patiently surely they can just have a bowel surgeon on hand to assist if necessary I suggested this yesterday x
Good luck, we are all thinking of you. Love Paul xx
I went to the WHL ..it is an excellent hospital.. that specialise in Ovarian Cancer... I was sent there from Chester because they weren't experienced enough to treat me in Chester..I feel you will be well looked after with the right people that know what they are doing. Mr Kirwin is the clinical lead in WHL and also does private practice... although I he hasn't treated me.
You will also have a clinical nurse as direct contact so that you can ask her questions. There are a team of four I found "Dawn Valentine" very knowledgeable and will explain things to you and find out anything for you that you want answers to....
Love and best wishes x G x
Sorry about typos xx
Dear Diamondhearts
No one should be frightened to their wits end whilst the medical team are deliberating. You should get in touch with them - perhaps their specialist nurse is the best one to go through what the issues are. She will have more time than your oncologist and I find mine has the ability to put things across in a way I can grasp. Sometimes when you start on this journey you can't take in all the information you're given - and it does seem from some of the posts that some oncologists communicate better than others.
Please don't continue worrying any more. Please do ring your team. Ruth at Ovacome may well be able to give you general advice but it's really the team who's treating you who are the only ones who understand why there are delays. It is your right to be given a satisfactory answer.
Meanwhile we're all here to help too.
Loads of love xxx Annie
Awww thank you all. Your support is very much appreciated x
Dear Diamondhearts.
I know exactly how you are feeling and what you are going through. I think everyone here does.
Some thoughts: when you speak to your gynae onc if he confirms they intend to delay surgery ask him if it would be possible to do a biopsy. Biopsies are not 100% accurate, but a result would help. Secondly, if you plough through the full NICE guidance for the treatment of ovarian cancer - nice.org.uk/cg122 - the full guidance, you will find lots of statistical information on ovarian cysts. Even the majority of cysts that look highly suspicious on ultrasound - solid masses etc. - are benign. Coupled with the fact that your CA125 is 20 - and that test is not by any means 100% reliable - you have good reason to hope that your cysts/masses are benign. Finally, I've suggested this before: try to get something to help you sleep and relax over the weekend. If you can't reach your GP in time, I am sure the local out of hours service will understand and do all they can to help. I know my out of hours service got me a prescription for sleeping pills late on Friday after I'd been given my CA125 test result (it was in the high hundreds) by phone at 6.30pm.
I realise nothing will set your mind truly at rest until you have your surgery but I hope some of this helps.
Cx
Not easy to be fearless but we are all here thinking of you and wishing you a healthy cancer free outcome. We have all been in very similar scary situations and are all still here offering our support to each other.
Sending you cyber hugs and hoping you have someone close to share your worries with face to face.
Sheila x
Not surprised you are scared, its a bloody scary prospect. One of the things about this whole discovery process - which is quite long and drawn out - is find on a way to get your equilibrium back, find a sense of normality to see you through, that's really hard to do while your head is in a whirl, you have more questions than answers, and you are paralysed by fear. Plus, early on, you are also undergoing a kind of lengthy shock. This is where you are.
Now you can't deal with all this at once but you CAN deal with the lack of info - so the advice about talking to Ruth is excellent. Get your info in line, understand how to interpret what you are being told. The care team will soon clarify about treatment and that aspect will be known - once you KNOW, you can find ways to cope. If needed, at that point the range of treatments opens up ahead and you can, with your doctors, steer a course through.
I can't second guess what your docs will say or find, but want you to see that whatever happens there are ways to get through. And there are plenty of us here to help you do that. Be strong, it won't be long now, and in the meantime taking some action will help you feel more in control.
Love
Sue xxx
Hi, I was told I had a mass on my remaining ovary a year ago this month and when I saw the Gyn/onc he decided that they would not operate etc... because of the amount of scar tissue/adhesions from previous op could be detrimental, cause me to have colostomy etc.... I was told that in his experience the mass/cyst/tumour whatever name they call it was most likely to be more adhesions and not to worry as my ca125 was low. I was not offered MRI or CT and he basically told me to go away, but if symptoms got worse to make another appt. I left feeling very scared and worried that he had made a massive mistake. A year on I'm still here, nothing bad happened. I still have symptoms that make me a bit concerned but these I have been assured are due to early menopause and the adhesions. Its hard not to worry when you have a history of Gyno problems and family members who have had breast and ovarian cancers but I take care of myself, and keep myself well informed, by reading this forum etc.. I hope like me that your problems will be nothing more than horrid adhesions and your hospital appointment is reassuring. Best of luck. Lisa xxx
Hi,
Well do I remember the horrifying days waiting to hear about oncology appointment and what treatment was proposed. There is a whole team behind your treatment, did you get the name of a clinical nurse assigned to your case - they are very nice and can speak to you in laymans terms and you can phone them at any time. I was told at the outset that I had OC stage 3 with spread to the peritoneum - not the best outcome, but after 3 carbo/taxol lots of chemo, the scan showed an amazing improvement and surgery was then discussed. It transpired that my ovaries were fine and I have in fact got PPC - Primary Peritoneal Cancer, on the OC scale and symptoms and treatment are the same. Sometimes they do not know what they are seeing until they carry out surgery - scarey time, is there a cancer support charity in your neighbourhood, it helps to talk it through and have a sympathetic ear to listen.
All the best
Joanna
xxx
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