Hi everyone, apologies for long winded message but so nice to find people who have had similar experiences and can relate, felt a little alone since Dec!
I had a laparotomy on Tues, the tumour was 16cm 8th Jan and down as a complex cyst with nhs but private scan 2 weeks later showed it to be borderline and growing a cm a week.
It was 20cm and 1.6kg when they took it out and although showing on the left it was twisted so actually attached to the right ovary!, I had ovary and tube removed and it's been sent off for biopsy. Meanwhile my ca19, ca25 and cea results have come back normal, has anyone had normal results but still found the tumour to be malignant?
I cant help but still think the worse as I had just bleeding to start with but it grew so fast i had terrible backache and fatigue over the last few weeks.
I got a loan and paid privately in the end as I could barely walk and nhs said it could be 2 more months for surgery, the gynae who did the procedure was a benign gynaecologist so there was no oncologist present but he was all I could get as I needed it out and in fairness he did an awesome job as there was no spillage.
Its mad how many different types of cysts there are and i dont feel there is enough awareness out there, after reading about the re occurring i wanted a full hysterectomy but my gynae said until he knows for sure whats inside he didnt want to be that hasty! I defo dont want another one in a few mnths tho am already anxious about nhs not treating it fast enuf and not having anymore money to go private 😕 x
Dear Sabby,
I am so sorry to hear your story.
And so sorry that I have no experience with borderline, so I cannot give you any advice..
All I can add is that it is NOT acceptable that you had to go private to have yourself cared for properly.
Where do you live, that this can be so?
Hopefully, you will receive good news when all your tests are finished, but if not, I assume you will be referred to a competent and caring team at a good hospital near you.
If not, you will have to have your GP refer you to s better cancer centre a little further away.
I am very impressed at your initiative, but horrified and angry that you were forced to take matters into your own hands, taking out a loan, etc.
I am sure one of the ladies here will have some helpful advice.
Take it easy for now. Healing after a Laperatomy, especially after removing such a large cyst, is not a walk in the park.
Be well,
Laura
Hi Laura,
Thanks for your reply I live in South Wales, I called the booking centre every day after the go's urgent referral on the 11th Jan but the earliest apt I had to see a gynacologist was the 4th April!
I ended up in a and e with pain which was found to just be constipation and was told I would be put on a list for urgent surgery, the following week I rang and still hadn't even gone on the list! Everything just seemed to be going against me, the nhs told the private consultant on the 22nd jan that although it is now borderline because it's still low risk they would most likely do surgery april/May I don't think they even take into account the rate at which it was growing which could cause further complications. I guess we don't realise how overstretched the nhs really is 😕 i still have my 4th april apt with the nhs gynae consultant so ill go to that and hope they montitor my left ovary efficiantly xx
Sounds really stressful.
If they find anything sinister, I know that Cardiff has a cancer centre. Have you talked to them?
Hugs,
Laura