What a fiasco!

[Leofwen]

Hi there

I am sure like a lot of others on this site that the process we all go through when diagnosed with an ovarian cyst is less than perfect.

I feel like I have been on a roller coaster for the last 6 weeks as my cyst is complex with solid components, multilobulated and with multiple septations. I am post menopausal to boot:). My case was referred to the MDT on 2 June and they made the decision to review me in 3 months and then offer a SBO, they used my cancer markers and TVS to make the decision. However they made the decision prior to my CT scan which then prompted my case to go back to MDT , and they meet tomorrow. Unfortunately I am having very complex spinal neurosurgery on Tuesday, so timing is poor to say the least. I had already cancelled this surgery as I was allegedly having my BSO on 30th June. I then rescheduled it after chasing the hospital for over 10 days to find out details of my surgery when I was told the MDT decision 14 days after it was made!.

In addition I was advised by radiographer during my initial TVS that it was my right ovary. When the consultant rang me to let me know results of CT scan and re-referral to MDT she talked about left ovary. I then emailed her secretary to query this as I thought it might be a new finding, but she rang back to reassure me it was definitely my left ovary, and she didn't know why I thought it was the right one. I then went to see my GP as I wanted to discuss with him the very poor process and lack of communication and how stressed it was making me feel on top of preparing for spinal surgery. I wanted him to explain my CT scan and reasons for my case going back to MDT as the consultant just says not to worry and I need to understand as the patient why decisions are being made. Of course I will worry. He gave me a copy of the initial MDT letter back to my consultant which clearly talks about my right ovary. He also read the CT scan which clearly states that the cyst shows highly suspicious features.

I cannot believe that they cannot even get which ovary is affected right, especially after me querying it specifically. If they cannot get that right it is difficult to have confidence in them. In addition it will now have taken 6 weeks and I still do not know what it going on and my diagnosis. I suspect that they will meet tomorrow and then want to move quickly as the findings are suspicious. The consultant falsely reassures me as she said that they are not considering anything sinister. It is difficult for her to say that without the benefit of a pathology. The thing that worries me the most is that they all seem to be basing their decisions on the cancer markers all being normal, but as we all know that these are only part of the picture and not entirely reliable for early stage OC.

Anyone else had similar experiences ?

The communication and support is so poor and trying to get In touch with medical secretaries is nigh impossible. I have to say that I am shocked at the messing around and cannot understand why the MDT made any decision regarding my treatment prior to seeing my CT scan.

Sorry for the long post, but really anxious about impending surgery and really worried about ovary situation

S xx

[TrishLey]

Sounds like you're on top of this frustrating situation. By no means should it be happening to you though! I hope you get a resolution soon and communication improves. I was diagnosed via a visit to A&E so I went straight from, 'I have a pain' to ' You have Ovarian Cancer we're admitting you right now' . Best of luck with the spinal surgery on Tuesday and I hope the situation resolves itself and works with good news for you xx Trish

[Leofwen]

Thanks Trishxx

[Whippit]

Oh my word, you have been through the mill. I wonder if the confusion has been exacerbated because you have two pretty big unrelated issues going on but it's hardly reassuring if they don't know their right from their left! It's as well you're on the ball so early on. I remember back to my initial referral to hospital and diagnosis of cancer and my head was in a swim for weeks if not months. I do admire you for your clear-thinking when there is so much going on.

I do hope the spinal surgery goes well next week and you make a quick recovery from that. Your GP is well-placed to read all the notes and explain to you what's going on. I find consultants are so specialised these days they seem only to be able to look at their particular area. I had tremendous support from my GP. He was my rock and in the early days the person I trusted most because he knew me as a person rather than a collection of symptoms though I very soon developed a trusting relationship with my oncologist.

Don't worry about long posts. I think we've all needed to do that and would like to help others going through similar experiences.

Sending love and hugs. xx Annie

[Leofwen]

Thanks Annie

I have a great GP too; it makes a big difference.

Sue xx

[Zannah]

What an awful time you are going through! It does seem dreadful that they can't get which ovary they are concerned about right.

I hope that your spinal neuro-surgery goes well.

Sending you a hug.

Love

Zannah xxx

[Hidden]

What can I say? You've said it so well, as have the others. Are both teams at least in the same hospital? Phew that you've got a good GP at least.....

Wishing you well with the surgery tomorrow.

Keep us posted!

Chris