Thank you ladies for your continued support, encouragement and suggestions.
Meanwhile, The nice, frank and gentle registrar called me last Wednesday with Monday’s scan results as promised.
The news was not what I had hoped for.
The mets in my liver, although small are in exactly the worst place.
There is a small tumour right in the middle, between two lobes, where everything drains and all kinds of important connections connect.
She says it is impossible to operate there.
But I am going ahead with the referrals, although this was another blow.
My lively GP immediately sent the three referrals out on Thursday.
One to a liver cancer Specialist team at the Churchill in Oxford, one to the prof at Queen Charlotte in London and one to a radical Ovarian Cancer clinition at the Royal Marsden, also in London.
In the mean time, my cancer marker. CA-125, is now 1100. Should be under 35.
Ugh!
I shall keep you posted.
Keep up the fight!
Laura
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The fight is on! That's the attitude, indeed, and it requires tremendous courage and strength. Well done x
At times when one door has closed, different ones will open. So, hopefully either one of the referrals will have a better story to tell. Sending you a big hug and I pray that you'll very soon hear better news.
Oh Laura you must be so devastated to hear this news and I really feel your anguish but I'm so glad that the referrals have gone ahead and fingers crossed there will be some positives out of these. I've been looking into small tumours in the liver and it does sat that radiotherapy is an option if surgery is not so this maybe an option going forward and hopefully you'll get in quick to see the liver specialist soon. I'm so glad your doctor has got these referrals in for you and really hope you hear soon. I know how difficult it must be for you but we are all here for you and keep fighting you are a strong person and will get through this. Sending you a virtual hug and pray that you will have a good outcome.XX
Hello Laura - I have also been looking into alternative treatment for Liver mets.
I hope this article gives you some options worth discussing with your new specialists.
Not what you wanted to hear, but at least the Reg was up front with you. Glad the fight is on and you've got a good GP in your corner and everyone here with their various experiences and contacts as well as those referrals
Hi Laura. Your spirit is impressive in the face of these setbacks and your GP sounds like your champion. Fingers crossed one of these superhero specialists will come up with a plan to defeat those liver mets. Hugs.
Hi Laura, not good news, but you now know exactly what you are dealing with. Your GP sounds very supportive and proactive. You have always come across as a very positive person and although it may be hard to be positive 100% of the time you have the lovely ladies here to support you if you need us. At least one of the specialists will come up with a plan. Keeping you in my thoughts and prayers.
Hi Laura , sorry to hear this . Sounds like you have some top people who will be looking after you . This is the most challenging disease, even when we feel well we can never be sure that this b.....d isn’t lurking around. I know that you will keep fighting. Sending love and good luck Sheila xx
Laura, You have so much courage and I hope that you get some answers when you get appointments in London. I know there will be a lot of ladies on here that are behind you all the way and I for one will be keeping my fingers crossed for you.
SO SORRY TO HEAR THIS. THANK GOODNESS YOUR DR. WAS ON BOARD AND MADE THE REFERRALS. BETWEEN THE THREE SOMEONE WILL BE ABLE TO HELP YOU. I'M VERY HOPEFUL FOR YOU. YOUR STRENGTH AND DETERMINATION IS ADMIRED AND WILL CARRY YOU THROUGH TO A BETTER SITUATION. WILL YOU BE ABLE TO SEE THESE PEOPLE SOON?
JUST KNOW WE'RE PRAYING FOR YOU AND SENDING YOU BEST WISHES FOR GOOD NEWS AND BIG HUGS!!!
Although a newbie here, I've only heard good things about the Royal Marsden. Keeping my fingers crossed and praying too that you get somewhere with the referrals.
Perhaps this is just the beginning of a new chapter! Surely one of these experts will be capable of helpIng you. We can’t let anything happen to dear Laura. If only there was something we could do. Everyone at Healthunlocked will be rooting for you so keep up the good fight. The battle isn’t over. You will win the war.
Bless you and all the very best.
Lots of love
Angela xxx
Tough times, Laura. You’ve plenty of options to explore. We are sending you strength and every good wish.
Hello Laura, I’m so sorry that your team said they couldn’t help you - it must have been a blow. Thank goodness you have a supportive GP who is prepared to back you all the way in the quest for a treatment or surgery .
With your CA125 rising and your liver ‘playing up ‘I am hoping that you are not feeling too poorly and can enjoy pottering around.
I’m holding you in my heart and praying that before long you have some good news.
I'm so sorry you received this very difficult news, your GP sounds really good and has got you the top people to help. I really hope things go well for you and they manage to help you. All the very best and take care. Sue xxx
I was really sorry to read your post but you hv managed to get three top notch referrals already so that's positive. I hope this forum will provide you with some more answers and support because you deserve it. Over time you have helped many people here with sound advice so I hope you benefit from us now.
I haven't had a problem with my liver so I can't offer advice but it could happen to any of us tomorrow. What I hope to give you is that feeling of solidarity. We understand what you're going through now, we feel your shock and frustration so I hope action is taken quickly then you can move on to the next stage.
Keep sending updates or your worries and good luck.
Hi Laura, thank you for the update. I’m really sorry your scan results were not what you were hoping for, it’s a massive blow. However, I’m glad your GP is on the case and getting those good referrals out. With your amazing positivity I’m sure you will get through all this and come out smiling again.
Wishing you lots of luck and love all the way. You are a trooper!
Every good wishes Laura for good news from one or all of the three of the referrals! Fingers crossed. I'm due at the Marsden on Tuesday so I'll tell Anna & Co that you're now waiting results of being referred (I'm actually there also on Thursday this week for a scan but I don't think I'll see the team then).
Hope you're feeling better than you were when you gave us Update 2, or at least not worse.
Hi Laura. What a hassle. Sometimes I wish M. Gore was still around, just for another pair of eyes and opinions (and very kind ones, as was his character). Ah well, onwards and upwards. Hope you'll get some options from the other consultants. xx. Maus
Hi Laura
Not the news you wanted to hear.
Wishing you lots of love and strength to get through this.
Its hard to hear news that is concerning but it's impressive you have 3 referrals. That's not done here in the US. Drs are usually affiliated with a group of physicians in a sort of unspoken network. I get one referral but of course can do my own research to seek others. I wish you well and in finding the right procedure to knock out those liver nets! Stay positive. Hugs, Jill
Our dear Laura, I’m not sure if this is useless information or not but I’m going to inform you anyway. A metastatic liver surgeon In Sheffield called Ali Majeed performed surgery on an old friend of mine some 15 years ago. It hit all the Sheffield Papers with a double page spread because it was so successful. She had Bowel cancer which spread to her liver. She lived for several years after that. He is still practicing at The Royal Hallamshire Hospital. I’m sure he would be happy to help or advise you. . My friend‘a name was [edited by moderators]. I have met him , he’s very approachable.
Can’t stop thinking about you. I’ve even been researching liver transplants using piglets. It was big news some years ago but I’m not sure it’s still being researched or abandoned.
I’m sorry if all this is Useless or disturbing but I can’t bear to think or imagine what you’re going through.
How are you doing Angela? I’m back on the Rucaparib and waiting for a nephrostomy /stent replacement. Apart from itchy skin and a constant thirst it’s not too bad. X
Hello again KBO. This is the third reply I’ve type. I somehow lost the other two. I hope you don’t get them all At once.
I’ll start yet again. I don’t quite know how I’m doing. OK I think. I told you My CT scan showed stable disease - no better no worse. Still 3 tumours though but no growth in 5 months so Rucaparib must be helping. My CA 125 was rising slowly. Only 27 from 9 but that’s high for me so the oncologist showed concern. This last blood test was a little down on some things but CA 125 had gone down to 25. Weird isn’t it. Anyway the onc prescribed 4 more weeks of Rucaparib stating he would take the risk. I never feel 100% but better than some ladies I suppose. I just feel bloated and stuffed up, especially at night. I hope the Rucaparib works for you this time. Good luck with everything. Keep in touch please.
Hi Angela. I’ve just read your reply again and I don’t quite understand why your onc prescribed you 4 more weeks of R saying he’d « take the risk ». What risk? Does he feel perhaps you should be back on chemo but as CA 125 is going down he’ll go another month on this?
My ÇA 125 has also gone down. I’m hoping that’s positive.
Incidentally I started on 600 mg but they’ve reduced it to 500 as my bloods did stupid things. They said the level of dosage isn’t as important as getting the strength correct for each individual.
Another day begins and I’m going to make the best I can of every single minute. I wish you and everyone grappling with this horrid disease a worry free day, well as worry free as possible 😳.
Hello again KBO, I the oncologist explained to me that because Rucaparib haven’t been fully proven to be successful and financially viable for the NHS. I don’t know who is paying for R at the moment but if they send a months supply out to us for instance and it’s found that after a week or so we have to stop them for good, the rest of the tablets, which are very expensive as you know , will have to be destroyed. As I understand it, the hospital is only allocated a certain number and that’s it until the NHS approve it and finance it. Sorry if this is in layman’s terms but I can’t remember everything he said word for word. I think it was well meant and was slightly concerned about my CA 125 even though it had dropped a couple of points. Giving me a months supply has boosted my confidence somewhat but there is always a but with this disease isn’t there. My next phone appointment is Sept 17 My blood tests will be a few days before so keeping my fingers crossed 🤞 for both of us. I’m on 500 per day too.
With everything happening to the world at the moment, especially Britain and the USA I sometimes wonder if it’s worth the struggle. I have a neurological condition too, which isn’t life threatening, however it means I cannot walk without aid and I can’t exercise like everyone on God’s earth seems to be ramming down my throat. I had a wonderful life before the full onset of this condition, about 15 years ago so I have plenty to be grateful for. The OC diagnosis was just the final straw yet it has changed my life for the better in some ways. I’m rambling on because I’m particularly down at the moment for various reasons and I just had to let it all out this very afternoon. I apologise for boring the pants off you but I feel a damn site better now.
I’m much older than lots of The ladies on here and wish everyone of them and you all the very best and pray that in your lifetime a cure will be found in time to rid you of this horrific disease.
Sorry again KBO but please keep in touch.
Lots of love and “keep taking the tablets” Angela xxx
Never feel you have to apologise for off loading your worries. I’m glad you felt better afterwards. Write anytime. My next appointment is the 15th so we’ll swap notes then. X
Thank you so much for replying so quickly. I’ve eaten a whole bag of Kendal mint cakes Tonight (miniature size) and feeling terribly guilty I believe sugar feeds cancer. I’m still up after watching a black and white film on TV. It had a happy ending thank God.
I’ll Say good night and wish you luck for the 15th September.
You have been very brave and an inspiration to many of us. Life does have its ups and downs but please never ever give up the fight. You do this for your family. Hang in.
Hi Laura ...Google liver ablation at Oxford university NHS. It destroys cancer cells in liver that are hard to get to. I'm not too sure whether you said Oxford was on your referral list but I know they do this in the USA so googled it in for UK and found they do it at Oxford University Hospital NHS. Thinking of you and hope your referrals come soon. June.xx
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