My Ovacome
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So was it benign??

Just wanting to know if back when first being investigated for symptoms/signs if anyone’s tumour markers came back in normal ranges and after surgery was found to be OC? Or other Cancer?? Just curious as I know normal tumour markers doesn’t always mean that it’s not a malignancy. Thank you in advance - you are all a treasure to me & I appreciate each of you for sharing your stories with me.

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Hello Selkington,

Yes my markers were normal (26) before surgery I had a 16cm complex cyst. When it was removed there were high grade cancer cells found. I was diagnosed stage 1c had further surgery and chemo and am great now 2.5 years later!

Very best of luck with it all! The waiting is definately the worst part but once you get a plan you will feel better! Here's hoping that it's just a cyst as most are.

All the best!

Dx

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Hi there, well if your tumours markers are within normal range and ct scan agrees with this, then there is nothing to worry about but biopsy will show whether there is definite malignancy or not. Don't google as you will only scare yourself, Just go with the flow of whats happening right now

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Hi,

First of all I hope your melon turns out to be benign; there are benign rumours that can reach massive proprtions. My own (mucinous cystadena) was one of those but in my case it was malignant (stage 1). I don't recall having any bloods done (this was 1988) and subsequent research has lead me to believe that this type of tumour doesn't necessarily affect the CA125 reading. Like you, mine was huge and my GP thought I must be pregnant (if only!). But it had no nasty cousins lurking anywhere (another characteristic of this type 'melon') and it was dealt with by surgery alone.

Wishing you all the very best for the coming weeks. Hope all will be good.

Catherine x

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Thank you Catherine, So happy to hear surgery alone was sufficient. Are you still OC free? It is very encouraging to hear a first hand story as opposed to reading textbooks. I am a nurse so am very careful where I get my information from but also find a lot of information to be vague and (at times) contradictory to the last. My patience is truly being tested and apart from the pain, pressure and fatigue, life is pretty much as normal - except every now and then I am reminded about the melon sized tumour in my pelvis/lower abdomen. I had other tumour markers done as well - hCG, CA 19-9, CEA, Enzyme LDH, & Alpha fetoprotein - all within normal ranges. Which I want to be hopeful about but also don’t want to get my hopes up. Such a horrible state to be in. I really just want Melon gone. (My sister said we should call the tumour “Melonia” after the USA First Lady, this made me lol - at least I haven’t lost my sense of humour).

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'Melonia' that's brilliant! Yes, after the removal of my melon and all the internal organs that define me as a woman I have remained OC free for nearly 30 years. In the light of all I've learned since about this insidious disease since (there wasn't much information available then at all) I was very, very lucky. As I'm 64 I'm glad now that I don't have all those bits and pieces which could possibly have given trouble in old age. Fresh in my mind though is the waiting time before a diagnosis. It's simply horrible. But hopefully all your fears will be allayed and your pesky melon will be harmless.x

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Thank you so much for sharing. I’m so happy to hear you are OC free!! Was the complete hysterectomy recommended? Or did you request it? I have finished having babies and if it is recommended I will go for it.

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My consultant told me before my operation he would do a total hysterectomy if the mass was malignant. There were no other options offered but at the time I was so frightened I didn't ask; I just wanted the thing out whatever it was. When they received the histology results about 10 days later they said no further treatment as no cancer was evident on the surface of the tumour. Having hysterectomy at 34 didn't bother me at all as it saved my life. Again, I was lucky as I had very brief menopausal symptoms after the operation ( a few nights of hot flushes).

Like you I had my children and I just wanted to be around for them whatever it took. Hoping that very soon all your worries will firmly behind you. X

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Thank you 😊 I too am hoping for the same xx

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Hi. Immediately before my surgery (optimal debulk) my CA125 was 20! The consultant in my local hospital saw that as a really good sign and tried to reassure me that this was a good result. But after surgery in a major cancer hospital, I was diagnosed 3c, so not sure how that works?! Recently the CA125 has jumped 10-fold, hence my panic on this forum in January. The MRI I had then has come back with no obvious problem, so I am on watch and wait until May. A real rollercoaster. ☹️ Best wishes 🌸 Carolyn x

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I currently have a recurrence of oc, but my last ca125 result was 6. With the type of oc I have, it is rarely raised. My onc goes by scan results rather than blood results. Di

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I’m so sorry to hear of your recurrence. When you were first diagnosed was there a cyst/tumour, did you have surgery? And how extensive was the surgery. My CA125 result was 11, which, as you know, is within normal limits. Still waiting on CT report & hopefully the next specialist referral will be accepted. Hopefully all goes well with you and treatment is effective this time.

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I had a tumour initially, which they told me from the start that they thought it was likely to be cancer & I had surgery.

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How were they so sure that it was cancer from the start? How extensive was your surgery? Did they have to remove other structures? i.e. ovaries (1 or both), uterus, cervix, etc.

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I'm not sure how they suspected cancer from the start, I think it may have been from its appearance on the ultrasound scan, but I could be wrong there. At surgery they removed both ovaries & tubes, uterus including cervix, & omentum. Di

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I saw your comment below re how the consultant knew it was likely cancer before surgery. My consultant talked about the complexity of the two cysts, they were multi ocular with other distinguishing features. This apparently meant that malignancy was more likely. I was 3c when opened.

My tumour markers were initially low just outside of normal range but outside 47 I think.

I think the hoping for the best but preparing for the worst will get you through. I was the only person on my ward who turned out to have cancer, the rest just had cysts. I think that’s a good sign.

All the very best wishes.

Lisa x

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Thanks for the like Lisa,

My original hysterectomy diagnosis was because of the ovarian cysts.

But due to other symptoms, bleeding in-between periods (although I was in the menopause and was only having periods every 4 months), I was told a biopsy was needed to rule out anything else. So although stage 1 endometrial cancer was found by that biopsy, after the hysterectomy that is all gone.

It was being told that the cysts were now behaving like a cancer/borderline after they were removed and checked that has threw me a bit.

It feels like more waiting and tests and what I know is the CT is to rule out that there is a primary cancer elsewhere, and the specialist oncology team will now check the pathology of the cysts.

If they are happy it may have been because of the endometrial cancer that the cysts were starting to behave this way, they will then just keep a check but leave it at that.

If however the CT shows anything and they can not define why the cysts are behaving like a cancer/borderline, then they might take out my appendix to check as this is a good source for further biopsy checks.

But my oncology link nurse said in two weeks I will either way be seen by the gynaecology/oncology team and have a more clear answer.

After speaking with Victoria and Anna from ovacome, I feel a little more reassured and everyones help via replies ahs been lovely too.

Thanks Lisax

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Hi,

I was originally offered my hysterectomy due to large ovarian cysts 12cm. I have had C-125 tests and been told all ok.

But after having my surgery escalated due to stage 1a endometrial cancer found, and done as open surgery, the pathology has returned saying cysts were beginning to look like a cancer?

Still not sure what that means but have to go for a CT scan and may have further biopsies to check surrounding areas where my uterus and ovaries etc used to be.

In a way what's good is that things are being checked so even if C-125's have previously come back ok, I suppose depending on what now happens at least it is happening.

If other malignant cancers are found will keep you posted, but yours was a good question :)

Thanks

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Thanks for the like it is much appreciated x

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