Ovarian Cancer - Frustrated with the waiting for diagnosis

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Hi PoppyRose

Sorry to hear you are having a hard time of it.

I have have almost identical to you reading your post .

See my profile. 

Waited  months as well.

They still don't know where my primary cancer came from. 

Finally I've just heard they are doing a complex MDT on me tomorrow; with a view to getting me in fast for big surgery  

I Would suggest finding out who your key worker is from consultants sec and call her.

This may help to speed things up and give you info you feel is missing.

You can make a complaint about the time waiting as there are government limits. 

Also call the Macmillian nurses to ask about the procedure with your biopsies. 

It shouldn't be something that causes spread 

You are likely worrying unnecessarily.

Was your biopsy painful? 

Mine was shockingly so.

Hi Cheekkat

Thanks so much for replying.  Just read your profile..   wow you are so knowledgeable! I feel totally bewildered by it all so definitely should get in touch with MacMillan nurses as they might help me understand a little bit.  

My biopsies weren't overly painful just uncomfortable. Were your biopsies in same places?  At least there actively looking for where your primary us.  Colon & breast have now been mentioned but no colonoscopy or mammogram been requested. 

I'll hopefully get results of my Omentum biopsy today but not holding out much hope for it being primary.  CT scans tomorrow hopefully they'll be rushed through.  I really don't want to be opened up for exploratory. Heard so many scary stories.  

When will you know results of MDT? Xx

Hi sweetheart! I am right now going through exactly the same thing right now. Waiting for primary debulking surgery and proper staging. No biopsy. I also have the peritoneal spatterings.I am so beyond anxious and scared it’s spreading every second. I find myself more swollen and the tumour is quite painful. 
Wondering how you are doing. I hope you’re well ️

I don't know if my own experience of ovarian cancer treatment is useful, but here it is.  I'm 66.  My symptoms started lst Christmas with excessive fatigue and a hugely bloated tummy.  Blood tests by my GP showed a CA125 of 600.  CT scan showed nothing because of the foggy ascites so they tested a sample of the ascites & that implied ovarian cancer although no tumour was detected.  4 courses of chemo followed and then the big debulking operation with removal of everything inc the peritoneum (it grows back again in 2 weeks),  omentum and fallopian tubes (where post-op examination revealed the tumour had started).  I'm told the cancer was not a discernable tumour as such but more like a sprinkling of cancer sand across my insides.  The operation concluded with a HIPEC saturation of the cavity.  Since then I have had 2 more lots of chemo.  My CA125 which was 1,600 before the first chemo (having risen 1000 points between initial consultation and first chemo) is now 8.  I am now in remission and taking Niraporib (PARPS) daily for the next 2 years.

For me the chemo was pretty horrible (7 hours of it each time).  The steroids pushed my blood sugar up stratispherically (I'm an underweight diabetic) which was a worry, and I had physical exhaustion and waves of nausea.  The fatigue lasted until the next round in each case. 

But it is all worth it and I found the best thing is not to worry about further down the line and just think about managing the next step.  

If the cancer does come back I will deal with it then.  There are always new treatments coming.  Meanwhile I'm adjusting to the maintenance medication and dealing with the side effects from them.

Try not to worry, have confidence in your consultant, and take it one step at a time.  You can do this!