Scared and upset

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After what feels like weeks of falling through the cracks in the NHS, I have been told that they will probably not be able to operate on my ovarian cancer.

I'm devastated. It feels like every time I see a doctor they have more bad news. I feel too frightened to ask what stage and grade it is because I don't want to know if I've got a BBE shorter than a lettuce. I only know at the moment that it's late stage and I'm starting chemotherapy on Wednesday.

I had a scan of my known about ovarian cysts in August and it came back fine. No changes. When I finally got another one in December due to my stomach swelling, I had a mass in there that hadn't been seen before.

My asites was drained once before Christmas, once when they took some biopsies and about a week ago when I ended up in A&E because I couldn't keep food down. I'd been told since Christmas that the gynaecology cancer team would be discussing me in their meeting and yet a member of the team said that they'd heard nothing until I came in that third time.

I've been told by my consultant that they have lots of drugs and I still might have a chance at surgery if they manage to shrink it. I'm normally an optimistic person but I can't stop feeling like I'm being given slim chances. I have some fluid on my lungs but was told in December that it was the asites having pushed it through. Again, I'm worried to ask if this is correct because it tips it further.

Has anyone else been where I am and got through it? I'm really struggling and not sleeping isn't helping.

Lenzie 21 days ago

It sounds like you have probably been referred to the gynae MDT for a case review. The MDT includes representatives from oncology, surgery and radiology. They have decided not to offer surgery yet and want some shrinkage first from chemo. You will get a Scan after 3 months then a final decision on surgery. This is a fairly common scenario in later stage OC.

You have the right to ask for a second opinion. There is a female surgeon based at a London hospital who gives 2nd opinions and sometines offers surgery on cases refused by other surgical teams. If you want to find out more about her, I would suggest joining the patient forum at HealthUnlocked My Ovacome where this is a frequent topic.

Chemo should help reduce the ascites and once treatment starts, you will hopefully start to feel a bit more settled.

Thecatlovesme 20 days ago in reply to Lenzie

Thank you lenzie. It's just a lot to take in.

ADaws3 20 days ago

Hi,

I’m in a very similar position mine was missed by gPs and by the time I ended up in hospital it’s now stage 4b, as it’s gone to my lungs. I’m having chemo first to shrink then hopefully surgery. I have found the whole thing emotionally and physically challenging and just over a month after diagnosis I still have very dark days when I can cry or get really angry. It’s a huge thing that’s happened to you and it will take time it’s the worst rollercoaster I’ve ever been on. I hope your treatment works. Take care xx

Thecatlovesme 14 days ago in reply to ADaws3

Hi ADaws3

Thanks for your kind words. I hope your treatment works and you can have surgery as well.

I had one lung drained last week which helped me breathe a lot better and I started chemo last Wednesday. It was such a relief to walk into that room. All the nurses were lovely.

I've not asked what stage I'm on, I can't cope with knowing at the moment. Is that wrong?

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