Ovarian cancer

I have just read that I have ovarian cancer in a letter from one doctor to the consultant. The letter is dated 29 January and I received it yesterday. I am on the two week referral so I am hoping they will be an appointment letter for me when I get home this evening. How long is it likely to be from consultant's appointment to treatment? I am beside my self with anxiety and rather stunned to learn my news through a cc letter. I will be treated at St George's in Tooting. Any advice gratefully received! Thank you

[Katkin1]

I can't believe you found this information out from a letter! That is so bad. Although, having said that, I found out, by a chance conversation with a nurse concerning wigs, that my chemo was to start the following Friday - barely a week a way! I don't know why some hospitals are not very thoughtful about making sure patients get the information needed in the best way possible.

You will find that things will move very quickly now. I was on the two week wait also. I had a phone call from the hospital before the letter arrived. You will have to have, probably a CT scan, and a pre-med (depending on whether they operating on you or not).

This is a really good place to ask questions, and I have found everyone so helpful, so don't hesitate to ask anything that is worrying you. I did and still am, and it's been a life line.

xxxx

[Hidden]

Thank you for your reply. I have had a CT scan and an MRI so they have seen all there is to see inside me. I really am hoping things move along apace as the worry is dominating everything and pushing positive thought out of the doors.

Reading through the posts I am greatly encouraged by the bravery and kindness of everyone so I am sure I will be posting again.

[Decca4Ever]

That was appalling! It should never have happened. What did the letter actually say?

At what stage are you in your treatment? Which doctor wrote to the consultant? Your GP or a gyne? Have you had surgery yet? Is this just on the basis of your scans and Ca125? Or a referral letter from your GP, saying that he wants you seen 'for suspected ovarian cancer'?

I don't want to give you false hope, but I had a similar experience, but not nearly as shocking. I got a copy of the letter my Surgeon had sent to my GP, pre-op, saying they were operating for 'suspected granulosa cell ovarian carcinoma'. Fortunately, I'd seen him the week before and he told me he thought it was benign. And after surgery, the diagnosis was Borderline Ovarian Tumour. Clinically benign and a lot of doctors don't call it cancer.

I asked him later why he'd put that in the letter to my GP and he just airily waved his hand and said that it was just 'something we thought it could be if it wasn't benign'. I wondered whether they had to use the word carcinoma to justify using the 2 week pathway.

Can't give you a time scale until I know where you are in relation to treatment. The target is you should never have to wait more than 2 weeks for appointments and scans.

I

[Decca4Ever]

Sorry cross posted.

Have you had any feedback on your scans?

Have you seen a Gyneoncologist yet?

My local hospital doesn't have a gyne-onc. The MDT looked at my scans and then transferred me to St Thomas's. (Apptment 13 days later.) They clearly thought it was cancer, and a secretary (!) rang me and talked about 'suspicious cysts on the omentum'. But the GyneOnc surgeon said it was benign from the same scans. I didn't get a copy of the letter from the local hospital to St Thomas'.

As I said, I don't want to mislead you, and I think my experience is pretty rare, but it does underline the need to see a GyneOncologist, which, hopefully, you will soon do.

[Hidden in reply to Decca4Ever]

It was from the hospital doctor who treated me when i came in through A&E due to a pleural effusion on my lungs, my GP is not involved at the moment. I left a message for the gynae secretaries to get back to me but have heard nothing. I had feedback on my CT scans when I was in hospital, MRI was last week and no feedback yet. The letter just said VATS biopsy came back as a metastatic palillary serous adencarcinoma from ovarian primary. And begins "I would be grateful if you could review this patient in your clinic as a two-week rule". Dated 29 January 2015.

So very very grateful for your support

[doodoolatrice]

Oh bless you what a horrible way to find out and what a shock. is this all the information you've been given ? I remember a telephone call I had from my local hospital after my CT scan when I was told I was being referred to Addenbrookes. I asked the nurse why and she said " we're very worried about you", so we're referring you to a specialist. Her words completely shocked me to the core, so I completely understand how you're feeling right now. I saw my Consultant a week later and had my debulking surgery nine days later. I really hope you get some more information soon, big hugs xx

[Hidden]

Yes that's all I know. I think I will go to my GP tomorrow and see if he can push this along as they probably have phone numbers I cannot find.

[Decca4Ever]

Ah, so sorry. Hadn't realised you'd had a biopsy. Of fluid taken from the lining of your lungs?

It's still a rotten way for you to find out. You should get an appointment with the Consultant within a fortnight of the other doctor referring you. I'd keep on ringing the Gyne's secretary to get some answers, and the name of the Consultant so you can get in touch with him, if you don't hear soon. They may have a specially trained nurse who you can talk to, or ring Ovacome.

Tbh, I've found the 2 week pathway v good. They did manage to keep to the targets throughout. And although I wanted to know everything by yesterday, I needed the time to adjust to what was happening to me.

I know how hideous this wait is for something to be DONE, right now! But truly you will feel better when you have a plan. Btw I went to my GP for anti-anxiety meds, because I simply couldn't eat, I was so scared. She was v sympathetic and they helped me a lot.

[Hidden]

Yes, lungs were fine apparently. I have some Valium so will take that. I'll try Ovacome as there is no way of getting hold of the consultants' details from the St George's website

[Hidden]

Hello Malonski,

This news must be an enormous shock to the system - it is bad enough if you are half expecting it at a consultant face to face appointment, but via a cc'd letter?! Well done you for thinking of all the different ways to get more clarity right away about what is going on.

The two-week rapid referral pathway is for anyone suspected of having cancer, often before they have an actual diagnosis. I was referred originally under that pathway and indeed saw a gynae oncologist within 14 days. Scans etc followed swiftly - you have had yours already. The oncologist will advise whether surgery is the next option (based on their interpretation of the scans) or whether they start with chemo. The timing for when this happens varies. My first surgery was about a month after they decided an operation was the way to go (which I thought was a pretty long wait actually). Other people get operated on within a week or so. Either way the key thing, as indeed you already know, is to get that appointment asap and get all your questions answered.

I found that writing down all the questions in advance was particularly useful, as I am rubbish at retaining information when told verbally, so I take copious notes at every opportunity as then there is half a chance I might remember what they actually said five minutes later. My partner joins me at these consultations too which has been amazingly useful to cross reference what was said.

Very much wishing you best of luck and much, much better communication and hoping that you get a good, clear way forward soon.

Judith

x

[thesilent1]

I'm so sorry you have learned of your diagnosis is this way. This is not acceptable and you need to make the sender if this letter aware of this.

My consultant told me on my first consultation with him that I needed an urgent hysterectomy and it would be done within 4-6 weeks. I hadn't had blood test or MRI at that stage. Blood test carried out that evening and one week later the MRI. I was admitted for surgery approximately 4 weeks following my first consultation with him but some people have chemo first and then surgery mid East through treatment. Your cons will discuss this with you.

Good luck and keep posting. We will support you. Ann xo

[Hidden]

Thank you all for your replies which have bolstered me. I saw my GP who is going to try and find out when my consultants' appointment will be and he reassured me that with a cancer diagnosis they all move swiftly. As I have already had biopsies, CT scan and MRI the consultant will have all the information needed to be able to make treatment recommendations without further delay.

I am still terrified of what will come but everyone on this site seems so level headed and reassuring that I am comforted knowing there are people out there I can talk to.

Thank you

[AnnieMae]

Beggars belief what happens in some hospitals! Mind you, no matter how you are told it hits like a sledgehammer. Hopefully once you get to see a Doctor they will be able to reassure you and explain what will be happening. Just knowing that there is treatment and support available helps.

Keep us updated

Love

Annette xxx

[Greeningthegrey]

I am not surprised you are in shock, I think that is an error to recie e news like that in that way. It would normally be given by the consultant with a specialist oncology nurse on order that any questions you have can be answered. Waiting times vary. I hope you have found a letter. Or had a call since you posted. Answer calls from blocked numbers as this can be calls from consultant or hospital admissions. Good luck and best wishes