Just had a scan ordered by oncologist because ca125 jumped 10 points in September to 45.
Tbh it has edged up every month on Olaparib (I have been on it since May 2021).
i am really struggling with the idea that despite being BRCA 1 the maintenance treatment probably hasn’t really worked for me. Was it unrealistic to think I might get a longer remission?
Frightened by ‘what next’ I am beginning to think about trials or second opinions.
I have no consultant atm, since my last oncologist left my contact has been a registrar I know well.
He’s easy to talk to but I can’t help thinking about the time back in 2015 when I had to explain to him what Avastin was!
The hospital delayed my lung drain and chemo during the pandemic to the point where I was so ill I nearly didn’t make it.
Urrrrgh! Do you have any words of encouragement?
Should I ask for a review with someone like Susannah Bannerjee at The Marsden?
Feeling a bit lost at sea…
Lyndy x
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Lyndy2
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I think you need to seek the best care for yourself.
If you can see someone at a specialist cancer center like the Marsden or the Christie please do. No offense to your registrar, but these center's specialists. Often they are running the clinical trials or leading the latest treatments.
I am at the Marsden and I can not recommend them enough,
hi Lyndy2, sorry to hear this, if you live near the lady oncologist that you mention, I wouldn’t hesitate, she has a wonderful reputation. Certainly a very knowledgable lady .
I am at The Christie hospital in Manchester and have no complaints with my Prof J or his team
Sorry to hear your going through a worrying time atm.Absolutely I would go for a second opinion and perhaps a third aswell.I think a fresh pair of eyes is always a good thing.You must do what’s right for you,I feel myself that I wouldn’t want to look back and regret not doing something.As you mentioned the NHS is extremely stretched,to the point where I think we must take control of these things ourselves.I mentioned this previously before but cbd oil is great for anxiety,it won’t work overnight but can definitely help xx
Hi Lyndy, yes lots of words of encouragement coming from me. I was in a similar position to you this time last year in that I was facing a recurrence. . I'm low grade and my Onc by her own admission didn't know a lot about low grade so she scratched her head and said we will put you back on taxol. There had already been a couple of occasions in the past when I had to jolt her memory on what treatments I had already received, so I decided this was the time to speak to someone who knew more about my particular disease so I asked her to refer me to Dr Banerjee. A month later I was sitting in front of Dr Banerjee and a few members of her TrialsTeam. They were all so knowledgeable and enthusiastic and within weeks I was on a Trail. I'm still under them and actually on my way to London for chemo today. Yes it does involve a lot of travelling but once you've done it a few times it becomes the norm, and your expenses are covered under the Trial. So please ask to see her as she really does know her stuff and they run a lot of Trials at the Royal Marsden, Kerry
Morning Lyndy I can’t help further but just wanted you to know I’m thinking of you - you are always so kind and supportive to everyone and I am really sorry you are in this position and without proper advice. I think a second opinion sounds a great plan and sending you love and hugs 🤗 Shan xx
Hi Lyndy. I echo the others about making the trip to see S. Banerjee for a second opinion and advice on trials. You need a good consultant. However maybe the CT won’t show anything yet. Some oncologists seem to think that it slows the cancer down even if it doesn’t eradicate it. Anyway I wish you the best of luck and encourage you to advocate for yourself. Xx
Lyndy. Please see if you can get a pet scan as that shows smaller nodes of cancer. My CA 125 went from 10 to 15 then to 22 then in 3 weeks to 30. I was on Olaparib and not Braca. It started going up after just 3 months very upsetting as you just want a break! CT scan done in April showed nothing. CA still rising knew it was back. Had pet scan in June due to my pushing for it and it was back and was in several lymph nodes. Started chemo in June hoping for the best but this is my third reoccurrence in less than 3 years! I hear ya just want some time off chemo, maintenance and pills.............Trials are what is my next option.
I would go with suggestions above I have heard amazing things about Christies specifically Professor Christina P and the Royal Marsden
I am in the States and am HGS, no Braca, no mutations .......nothing and just lymph nodes affected. Not finding any trials with those parameter which is frustrating in itself.
Keep advocating for yourself and keep fighting this awful disease with all you strength lean on those close to you and vent here this website is AMAZING!
HI Lyndy. One of the most important things during your oc journey is to have the confidence in your medical team. Not just feeling their support but knowing they are up to date with the latest research. Definitely go for a second opinion. I'm in Oz so I can't recommend anyone but The Marsden sounds like a good starting point.
You know CA125 results don't always mean it's back but go with your gut & ask for the PET scan so you can either ease your anxiety or deal with whatever it shows.
Just wanted to address the increases in CA125. I have a similar situation, but there is no need to panic or to think the Olaparib is not working. I am also BrCa1, by the way. My CA125 has been increasing for nearly a year now but it is still only 154. Before I had my first treatment (chemo) in 2020 it was up to 335, then went to over 1000, so the current figure is still low. I have had a scan and yes, there are small changes, but nothing that warrants treatment yet. You are still only just above the "normal" reading, so I hope you won't need more treatment for some time to come. Presume you are having regular blood tests, and these will keep track of changes. Good luck.
Thank you for your post. I can see that many of our members have replied, I hope this brings you some helpful advice and support.
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