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The last CT scan I had said I was clear of cancer!!
As it turns out through a routine operation I had low grade serous ovarian cancer, which had spread. I have to have a CT scan soon, but dont see the point. Can I ask for a PET scan. Any advice would be gratefully received. (I've had the tumors, parts of my bowel, rectal reconstruction, and other things removed). All of this is what the CT didnt pick up?? ❤
That must have been an awful shock for you! I’m so sorry to hear that.
I’m a low grader too and my onc doesn’t bother with scans post surgery until and if there is anything to scan that he’d be able to feel I think. At the moment we go on my blood CA125 test every three months. I’m waiting for my next meeting with him in a couple of weeks which will be a year on from having had chemo.
I was told that Low grade doesn’t respond well to chemo but he persuaded me to have it post surgery but it isn’t always offered now. I am on letrozole a hormone blocker to prevent recurrence. But I am also throwing everything I can at it from the Jane McLelland book How to Starve Cancer. This blocks the pathways for all cancers but it’s a bit too complicated to explain here. Best to get the book. My onc is reluctant about prescribing the low toxicity off label drugs unless he can justify them but I’m talking him round (and I’m not the only one). There’s a Facebook group which is helpful too for low graders.
I hope this is helpful
Very best wishes
Alex
Hello Alex, yes it was a massive shock. I had radical surgery which took seven hours, in October. I've healed well. I didnt have chemo, I researched all about it, and emailed a oncologist in Scotland, then after talking to my oncologist, she agreed, that chemo doesn't respond to LGSOC. So I'm to have, like you, blood tests and a scan every three months, but as I said, the CT scan was useless the first time. I will go along and have it, but first I'm going to ring the oncol nurse tomorrow, and tell her my worries. Thanks for replying, lots of love and best wishes❤
I’m fundraising for this particular low grade oc research for Prof Gourley in Edinburgh who is leading it. He’s a friend’s oncologist too so I’m wondering if he could also be helpful to you as our type is rare ( we end up knowing more than our oncs).
Very best wishes x
It was professor gourley that I emailed about the chemo. He couldn't give me a definate answer, as no one really knows, but he kind of, went along with the chemo my not help. If I can get in on whatever you and your friend are, with proff gourley, I would very much appreciate it. As far as I am aware, I dont have cancer, but I am aware of the reaccurance. I've just ordered the book you said about. Thankyou for caring ❤❤
Also the surgeon that operated on me, is very well known, in her work for any OC. So much so, that when the oncologist found out who had performed my operation, she was happy for me not to have chemo. She is also known to professor Gourley. X
It’s just shows what a small world it is! How amazing! Another bit of “meant to be synchronicity!”
That’s a good attitude which I think I will adopt. My oncologist told me to think of it as a chronic disease but that the best I can hope for is no visible disease. I’d rather think of being cancer free unless it recurs . Words are so important.
I got a lovely personal letter from Prof Gourley thanking me for raffling my painting last year to raise funds so I’m doing it again this year.
My friend who has him as her onc Jane Waygood runs the alternative approaches to ovarian cancer Facebook page and she knows Jane McLelland too! There are lots of helpful things on there.
If you would like to help in any way and buy a raffle ticket (£5) and share the justgiving page with others it’s under justgiving Alex Coppock3 . The more we can raise the better.
If you direct message me I can send you the link if it isn’t clear. I think it’s against the rules to put the link on here.
There’s also another web site for low grade serous oc which another Jane (Ludeman)in NZ is running internationally and she is working to raise the profile and liaised with Prof Gourley to get the research started from my understanding.
Where are you based?
We might even be relatively close geographically.
Alex x
Hi Alex, I'm in st albans Hertfordshire.
If they need some Guinea pigs for research in NZ and what to pay, if happily fly over 😁.
But I dont have cancer. I've just had my first CT scan and blood test, since the operation in October, I go on the fifth of March, and for all my "I dont have cancer", it's two o'clock in the morning as I'm writing this. Sorry about typos.
About the raffle, I'm sure it's the same one I brought £10 of tickets. And if I win, I will re-raffle it. Xx
Also I've just recieved the book, how to starve cancer. And I'm on the Facebook page now. Thankyou for that tip❤❤
Oh thanks for that! I know who you are now and can arrange to get it to you if you win! I am so glad you have got the book. I think if we take matters into our own hands and learn as much as we can we feel more in control and less stressed. That in turn reduces anxiety and inflammation and our immune system is stronger. I even saw the Mayo clinic have developed a vaccine which has cured a patient’s breast cancer which may be available in a few years and may be able to treat other cancers including ours. Steps are being taken every day which give us some hope .
Writing about how you feel is also essential I find.
Much love
Alex x
I agree, Alex. I often feel better after a session on here😁. If by some chance I win the raffle, could you re-raffle it, please. We need to get as much money as possible. Thankyou Alex xx
Yes of course I will . Thank you for suggesting it. Xxx
No problem, the more money the better x
Hi Artgreen - I'm also fund raising for LGSOC for Professor Gourley (Sew for Cancer) - my mum has LGSOC Stage 3A. We are deciding about Chemo - my mum's consultant has advised against it - to just closely monitor. Did you have Chemo ? Does Professor Gourley lean towards other therapies such as HT ? Look forward to hearing from you - and is the raffle still going ? Thank you x
Hello there! Professor Gourley has been researching into Trametinib which has now been considered successful giving us more time and also it is accepted. by the NHS instead of chemo as first line treatment I believe. I did have chemo but really think it might have been better to stick with letrozole to shrink or treat anything left over and leave chemo in case it was needed in the future. I was urged to have it but NICE have changed their minds now since Porf Gourley's research.
The raffle is not going any more, a lady from Cyprus won it. But I am considering a Kiltwalk in Sept except my mum now has pancreatic cancer so may not be with us so we are sorting out her care at the moment. Its a but tricky to try to fit things in.
I think you can still donate on my site and I certainly ( if I'm still here) do another painting raffle next March! Just got to decide which painting now.
Much love to you and your mum
Alex x
Thank you so much for your reply, it really did help.
So sorry to hear about your mum, my thoughts are with you as it must be difficult.
If you do the kilt walk get in touch - I live on the borders of Northumberland so love walking.
Will look forward to another painting too.
I think we are going down the Letrozole route and keep chemo for another day if needed. She is 76 and wants to have a full quality of life especially for this christmas.
Love and hugs to you and your mum too.
Catherine x
Amazing news!!! NED 🙏🏼🙏🏼
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