First of all, let me thank all of you who have responded to my last Update with your support and helpful advice.
I can’t answer everyone as I usually would, because my circumstances are so dire.
This last week has been nothing but doom and gloom.
My Oncology Team has offered me no options except to call Dorothy House. They nixed any suggestion of options such as liver surgery or even referring me to a liver consultant. They expect me to die of liver failure sooner, rather than later.
I am researching this and my GP will refer me to specialists in Oxford as well as Prof Christina in London. I might try the Marsden, too.
I am furious with my team here in Bath. They claim to be supportive, but their support is limited to offering me pain meds.
I am not in pain. My only symptom is rising Bilirubin and I have turned a very bright yellow.
My CT scan is Monday. I am to hear from the team Wednesday afternoon. Once I have the scan report, things will be clearer and I can go ahead with referrals.
Amazing that this has come to such a pass.
Fighting on,
Laura
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Lindaura
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I have been meaning to reply to your previous post. Don't let the b*****ds grind you down, keep that fighting spirit. We are all here for you xx Kathy xx
Lindaura, do try the marsden, you're very lucky with your GP, not all are as caring. I too live in Bath, and I had a hard time trying to get a hysterectomy as they said I did not have cancer but, yes, I did and I knew it so kept insisting for a hysterectomy, the cancer was then found in my womb, I'm glad you're not giving but not too surprised that they are not helping you further. Just keep trying.
The RUH has seemed to be fabulous for me, but now my Oncologist just seems worthless and I am stunned to find myself written off so easily.
I travelled to the Marsden every week for a trial last year (which ultimately did not work) and it was not so bad, but the Virus makes going to London pretty tricky.
However, if I get through this, I am not going back to [the consultant].
Hugs,
Laura
*this reply was edited by moderators to remove the consultant's name and replaced with the text in square brackets*
Oh Laura, I’m so sorry to hear what you are going through at the moment. You are right to keep on fighting and get those referrals. You are a tough and inspiring lady.
I wish you all the best with everything and hope that things take a big turn for the better ASAP.
Sorry to read this Laura. I am dumbfounded that they aren’t trying other options. Why do I read about those in America living for years with OC? They try so many options and keep going.
I’m glad you’re not in pain and really hope you get some proper answers next week.
Please keep us updated and carry of fighting your team for answers and treatment.
My mums oncologist was very much glass half full. Told us before treatment that she had 3-5 years. What the hell. He didn’t like me for questioning him on everything!!
Oh Laura, I've been reading your posts. What a nightmare you've been having. Has anyone suggested Kings College Hospital in London? They're a specialist liver unit and treat cancers. I used to work there (v long time ago) but they're brilliant. Worth a try. X
Laurs please contact professor Christina Fotopolou at Queen Charlotte. If anyone can help it will be her. She is the best surgeon in the UK.Please get your referral to her. That's what I would do and the other option is what figroll has suggested the special liver unit that too seems a good option as they are specialist. Do glad your doctor is on board with this with you. Please keep in touch and let us know how you get on
Great Laura. I'm so relieved you are doing this. If I were you I'd defo do thus. When my surgeon said he couldn't take the lymph nodes out I contacted Prof Christina and she said if I hadn't started chemo she would have attempted to take them out as she had done about 70,percentage of these successfully. She said I know they are near the main aorta artery and it can be dangerous and that I may have s lot if scar tissue as my surgeon suggested but she said as soon as she would have opened me up she would know. Her take on it is that she doesn't understand how surgeons can say no until they check inside first but she doesn't like us to have started chemo first.She realises I had no choice as NO operations unless urgent debulking was taking place in March and April do I had no choice to start chemo as lymph nodes were galloping. Im do glad that you are seeking out other opinions and getting the ball rolling now. More do you will feel better too knowing you are not taking a back seat on this. Big hugs to you Laura we are all rooting for you.xxx
Laura your post has shocked me to my core! Your CTscan results should produce some answers, lets hope your team will be acting positively upon the results. Good Luck Laura, I will be thinking of you especially on Wednesday, when I hope you get some good news about your treatment plan going forward. Take care gentle hugs 😘 xx
Im so sorry to hear all this Laura but you have strength and determination so keep fighting on. We were diagnosed at the same time and I remember you asking what the difference was between on the liver and in the liver. I’ve always been encouraged because people say it’s ok when it’s on the liver. Did yours start on the liver? I had it on the bowel and liver. Does it mean it will go into them.
Anyway this is about you not me. I am sending my strongest vibes to give you courage. X
Wld be interested to hear about this mine on the livera apparently there is like a clingfilm lining round liver and mine is there. Wonder if yrs is same
Im 2017 they cut the tip off my liver as there was a bit of C on it. In 2019 the hey saw another « something » but it appears to have shrunk with chemo.
It was on my bowel and on my bladder
I just wonder if eventually it muscles it’s way in.
Dear lovely Laura, what can I or anyone else say but never give up. You’re a very strong lady so use this strength to win the battle. We’ve all become to love you in own way so rest assured we’re here to listen night and day be it good news or bad.
Your profile says that you are on Niraparib....Did they stop it? could this be one its side effect?
Low platelets which is a side effect of Niraparib correlates with increased concentration of bilirubin causing a yellowing of the skin and eyes (Jaundice).
Thinking of you and Wednesday is not too long away.
We are totally behind you Laura... hopefully you will find a more positive approach elsewhere. Incidentally (and I know you don’t want to engage with this right now) but a friend used to volunteer at Dorothy house and I understand it is fab.... they might be able to help with symptoms while you go after more options. xx
I would be angry as well. What reason do they give for not referring you to a liver specialist? May you find the strength to stay strong and get some help and answers. Like you my spots are on outside of liver at moment. Do update us all. Sending care to you and your family for some positive options
Prof Christiana Fotopoulou is a specialist in radical surgery for ovarian cancer. As you say start the ball rolling as soon as you get your scan results as your existing team have to send her your records. The Marsden is good idea too, as they know you and may have trials suitable. Try everything, I know you will. Presumable the Letrozole not working.
Hi Laura - I read all of your pots and admire your strength of character you are an inspiration to many of us on here. I was diagnosed in April 2017 around the same time as you With stage 3 peritoneal/ovarian cancer aged 58. I Have looked to you for inspiration and strength in my really dark days. You are pursuing every option you can and those that Ladies on here recommend. I hope that you can get a referral very soon to C F or the Marsden that will be able to help you. Keep fighting Laura - you are one special lady x x x
You're such a beautiful human being, I just know it, and we're all sending you lots of positive energy and Love. I'm sending you a warm soft breeze across the Atlantic, from Lisbon 💓🙏💚
From across the big pond I wish you every success in getting the help you need. I am so glad your doc has your back and can fight for you! Don't give up! Hugs!
Sorry to hear your distress at this news. I hope that you find some resolution and get answers from wherever you can. You still have that fighting spirit.
Hi Laura. I'm relatively new here, having been diagnosed at the end of Feb and in chemo since May. This may or may not be helpful, but if you do find a surgeon willing to operate, you could send a sample of the tumour to Nagourney Cancer Institute in the US. They test the cancer cells against various chemo drugs to see which are actually effective in killing the cells. If my own situation comes to this, I'm going for it, as it seems a much more sensible way of tackling the disease than 'try this and see if it works'. Anyway, I wish you all the best in your quest for treatment. Here's a link if you're interested: nagourneycancerinstitute.co...
This is awful that you have to fight for referrals especially with the strain that you’re already under. I don’t understand why some oncologists are so reluctant. There is nothing to lose by seeking other opinions. I think the suggestions already given to see Prof C & the liver consultant sound promising. Take heart Laura - we’re all behind you. Xx
I am sure you know everyone is in your corner Laura. Your spirit is one of legend, and if anyone can get the help they need, and should have by right, my money is firmly on you. Thanks for showing us the way. Love Therese xx
Dear Laura. I'm so sorry your onc team seem ready to throw in the towel but I am not surprised to hear that you are not giving up and are seeking further referrals with the help of your supportive gp. You are such a fiesty lady and if anyone can find a way, you can. Best if luck for Wednesday and sending lots of positive thoughts. 🤗 Jackie x
💐🌻So sorry to read what a horribly hard time you're having, Laura. You've done so well with keeping going 👏. Don't give up now. 🤞 Fingers crossed you can get help from the two that your GP is referring you to. It must help a lot having a doctor helping you.
Laura, I don’t know if you are aware of US Supreme Court Justice Ruth Bader Ginsburg. In 1999, she was diagnosed with colon cancer; in 2009 it was pancreatic cancer; in 2018 lung cancer and in May 2020, liver cancer. Justice Ginsburg is 87 years strong and still on the Court. I am in early days with my Stage 4 OV cancer. Thought it was stage 3 but CT shows likely metastasis to lungs. I’ve just had my second round of chemo yesterday. When I get gloomy, I watch little video clips of Justice Ginsburg. She is such a tiny lady, but a very feisty woman. Hearing her tell the story of a man who disliked her and said she would soon be dead, she smiled demurely and said. That man is now dead while I am very much alive!
Like Justice Ginsburg, I hope you too will continue to be very much alive!
Feel so upset for you being in this awful position. You have to keep fighting and show them that you are not giving in so easily. It’s very sad that a lot of the time we have to shout to get the help we need!?!
You’ve got so much spirit, don’t give up, I’m sure there are other options as the ladies have suggested so keep on fighting!! You are a warrior and we are all willing you along.
Dear Lindaura, just continue fighting against any one that the only prospect they can give you is to die of lever failure!
go to see other cancer experts not at Bath!
look for experts that can give you the best treatments and hope above all. the future is unseen and those who experienced clients death under their hands, have the fear of
loosing one more. If you can't trust them, go soon to better hospital or better expert. never don't give up!
Yud
Laura, you sound strong. Keep fighting! We are all behind you. It’s wrong that you have to fight so hard in this situation but we know what a wonderfully capable woman you are.
Thank you for keeping us up to date with your progress and inspiring us and showing us what to do if we find ourselves in a similar position.
That’s abysmal care from the NHS. Very very disappointing. I wonder if you have considered the Care Oncology Clinic who will consult and prescribe on line. They offer a similar protocol to Jane McLelland’s in her book How to Starve Cancer. She was stage 4 Cervical and other cancers at least 10 years ago and is thriving. The main 4 drugs are also being trialled for cancer individually all over the world but are low toxicity safe drugs repurposed for cancer. The cocktail of them starve the cancer which stops it growing. I’m taking the drugs that my gp will prescribe. Metformin, simvastatin, menbendazole and Doxycycline. It is worth trying I think, I’m throwing everything I can at it.
Hi Laura, I was just sitting here at home & thinking of you. How did your CT scan go on Monday ? I hope the news was more positive than last week & you are not giving up the fight. Keeping you in my thoughts Xxx
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