Stage 4 no more treatment options

[kaza1]

Hi all I was told by my oncologist that the cancer has spread to liver and spleen and there is no more they can do for me and the last two chemos didn’t work so I decided I’d opt for quality of life

Belief it or not I’ve always felt reasonable well accept while on chemo

The oncologist said he won’t need to see me anymore and to get my affairs in order which I have done out of sheer panic and fear thinking I’m dropping dead next week

Have had Macmillan round etc but I’ve told them I don’t need to see them every week as I’m not bad

Thinking of going abroad for a week or so but with no insurance is this a good idea or not does anyone know how long I will live with this diagnosis

Thank you I know it’s a long letter I have lived for 6 years so far after initial diagnosis of 3c

[CallmeMum]

Hi lovely,

Make the most of what time you have left, make every day count and enjoy it to the fullest! There are ladies on here who stopped treatment over a year ago and still here, just because they say sorry there’s nothing more we can do doesn’t mean you’re dropping dead next week. Good luck and have fun xxx

[Lindaura]

Well,

Personally, I feel like, yes, if you can afford it, and you feel pretty well, go on holiday and screw the Insurance.

But, more importantly, go for s second opinion as soon as possible.

You posted a similar post a few months back and received some great advice.

Please go back and look at it!

Here is what Neona advised:

“Chemo never worked for me and I decided to get a second opinion. To speed things up I paid for a consultation at The London Clinic and was referred to the UCLH Research Facility and am now on a phase one clinical trial. When conventional treatment stops working you qualify for clinical trials that are often not open to those who are chemo sensitive.”

I advised having surgery and at least removing your spleen.

So, go take a look and then set up a course of action.

Second opinion first!

Best wishes,

Laura

[jools53 in reply to Lindaura]

Absolutely agree! You can live without your spleen and liver can regrow after having some taken away! Sending many hugs never say never xxxx

[kaza1 in reply to Lindaura]

Lindaura do I go for a second opinion through the nhs do I ask my dr to refer me I’m just not sure of the process

Thank you x

[kaza1 in reply to kaza1]

I asked consultant about removing spleen etc but he said the cancer will just spread somewhere else as it’s very aggressive x

[Lindaura in reply to kaza1]

There have been suggestions of a Surgeon other ladies have used.

I think you can ask your GP or your consultant to refer you.

It should not effect your current consultant.

Here is what I copied and pasted from previous discussions:

“Second opinion was with professor F at the hammersmith in London. She is known for tackling ovarian cancer often considered inoperable by others.”

“I was operated on at Queen Charlottes by Prof Christina Fotopoulou and team and returned to Addenbrookes oncologist for chemo.”

Ovacome's Support Manager, Anna, maybe able to guide you - freephone helpline 0800 008 7054.

Best wishes,

Laura

[Shorty864]

Dear Kaza, I am reading and extremely interesting book called Radical Remission - surviving cancer against all odds. This book is up lifting and I can't put it down. It is about making radical changes in our life such as food, taking control of your health etc. It is about not taking the doctor's diagnosis has the end. I have stage 4 ovarian cancer and it has spread to the peritoneal and I am on Niraparib for as long as it works. Anne from Cornwall. Hold in there. XXX

[kaza1 in reply to Shorty864]

Thank you shorty

I love reading books and over the years have followed a vitamin protocol which I still am doing oxygen treatment diet you name it I’ve done it

A couple of books you may enjoy are written by two couples who went through cancer but chose to treat it organically

One book is by aylessia Sade she is on Facebook and so is the other author who I have forgotten

I’m also about to read The power of Now

X

[Shorty864 in reply to kaza1]

Thanks Kaza - as they say knowledge is power. I have also just bought another two books, How to Starve Cancer and Anti-cancer a new way of life. I think I need to see a nutritionist to help me with my new way of eating. All the best to you my dear. Anne

[kaza1 in reply to Shorty864]

Have a look on a site called cancer active it’s very good at educating especially in diet the chap who runs it Chris Wooliams daughter died through cancer and he has spent years putting info on site for free x

[Missmuffet32 in reply to Shorty864]

Hi Shorty, I am in the same position as you and have been put on Niraparib 5 weeks now with very little side effects. How long have you been on it. I feel very well at the moment. Was told by my oncologist to go home there was nothing they could do. So I asked for a second opinion at addenbrooks and they said rubbish and gave me the Niraparib. I feel so grateful for giving me some hope. Best wishes hope your coping. M x

[Shorty864 in reply to Missmuffet32]

Dear M, I have been on Niraparib 8 mths now and have also not had any side-effects, blood pressure though is a little on the high side so I have to measure it every night. My oncologist, however, has requested a scan as my CA125 is slightly raised after my last blood test, but after a few bad days I have decided, after reading a book entitled Radical Remission: surviving cancer against all odds, to follow a better diet, excercise much more, take my health in my own hands and not wait for the doctor to say "we can do no more". Good on the hospital - not so good your oncologist. Take care my dear and don't give in - stay strong. A big hug, Anne

[Missmuffet32 in reply to Shorty864]

Thank you Ann, sorry I’ve not replied sooner but my husband took me away for a surprise break to see my twin brother and old friends for 5 days. It was so lovely sad sometimes as I don’t know when I’ll next see them, we live 430 miles away. But was worth the drive. That is absolutely fantastic that you have been on this drug and your getting very little side effects. I hope you’ll carry on like this and keep well and do lots of nice things with the people you love. You have given me some hope. I feel I might have some chance if this lets me have more time. I have two wonderful caring and loving daughters and it’s them that I worry about. And I have the most amazing husband who luckily has loved and adored me, and is my best friend since the day we met. So I know how lucky I have been all these years. I can’t be greedy but this horrible illness isn’t fair to all these lovely ladies on here, it’s so unfair. Let me know how your doing, best wishes Margot 👍🥰

[Maus123]

I'm sorry you've come to that point, Kaza. But also glad you are still feeling well at present. And I'd second the other ladies. Might still be worthwhile to obtain a second opinion.

I don't want to endorse the principle in general but in your situation, you could even consider traveling without insurance, if it's impossible to get covered.

Alternatively, if you stay in Europe, you can request a European health card, so you'll be able to receive emergency treatment while abroad. Costs nothing but filling out an online form.

That insurance paid out more than 20k for my initial diagnosis and debulking surgery, as that happened abroad in Germany during a short holiday, while I was still living in the UK. Or rather , the German insurance which is the contract partner covered it.

Stay as well as possible. All the best. Maus

[kaza1 in reply to Maus123]

Thank you maus I have that European health card I haven’t used it as yet so maybe a good idea to stay in Europe for this trip thank you for advice x

[Hidden]

I’m sending a hug 🤗. I don’t think there are any definite answers to that question, with this condition. If you want to go abroad for a week and feel up to it then I think you should do it.

[Bevcav]

Hi have you looked for trials I am 5 years into mine and it’s the route I am taking where do you live there are new drugs called parb inhibitors they are using !

[kaza1 in reply to Bevcav]

Yes I asked about these bevcav but apparently didn’t reach the criteria maybe it would be best to have 2nd opinion

I live in Nottinghamshire x

[Shorty864 in reply to kaza1]

I went to the Royal Marsden hospital in London for a second opinion - they were not able to say different from my doctor at that time, but I felt better about it. Anne

[Superkim]

Kaza,

Please get a second opinion. Not every doctor is the right doctor, and their are always exceptions and outliers. I think you should live your life, I also think that you shouldn't just accept one person's assessment (he is just a human after all).

Now is also the time to get creative and explore options you might not have considered otherwise. Do not, I repeat "DO NOT" accept defeat. If you feel good, get out there and advocate for yourself, explore what's available, and don't forget to enjoy your being here....because the truth is no one knows how much time they have left....and that includes you!

Hugs, Kim

[kaza1 in reply to Superkim]

So true I’m coming back up again getting my head round it I’ve got to stay positive

My physician is god so I’ve left it in his hands now x

[Purple_k_in_Oz]

Hi there. Sorry you are going through this and apologies if this is blunt but your oncologist sounds like an idiot. Why on earth would he say he doesn’t need to see you anymore? Who is going to manage your pain, your symptoms? Who is going to provide an opinion if you end up in the Emergency department with complications? If things really are as bad as he says he should at least be referring you to palliative care.

I absolutely agree with the others on here. Get a second opinion, dammit get a new oncologist! Take back some control. And take that holiday.

Good luck.

[kaza1 in reply to Purple_k_in_Oz]

Thanks purple he did send an email to my dr who then sent the palliative care team round which in turn frightened me to death

Having to go through resuscitate forms etc I’ve told them I’ll ring when I need your help as they are lovely people but represent the end

So now I’m feeling more positive I’m going to go for a second opinion can’t have a death warrant on me yet x

[Irisisme]

Hi Kaza,

My heart goes out to you. Please take note of what others have said. There is so much more help you should be getting - and a second opinion sounds like an excellent idea!

Whether you go abroad or not, I hope you can find enjoyment in life - and you may have more of it than you think if some of the posts on this blog are anything to go by.

Love and hugs,

Iris 💕❤️💕❤️

[ingrid48]

Kaza I’ve been told I had 6 mo to live for 7 years

Stage 4 peritoneal cancer. I'm going on Zejula next which is a parp inhibitor

Get a 2nd opinion

[kaza1 in reply to ingrid48]

That’s such good news I’ll look at the parp inhibitors the consultant said I couldn’t have them due to not fulfilling the criteria

2nd opinion due x

[GINI-54]

Hi Kaza, that is devastating news, and it takes a while to get used too. I was told the same thing a year ago, I’m still here and feeling well, no one believes I’m ill! As you say, it’s the treatment that makes us so ill. So I would recommend you go on holiday, speak to MacMillan about insurance, they helped me last year, it was a little bit more expensive but worth it. Ever since my prognosis I plan weekend always or holidays, every 2 months to give me something to aim for. Remember we all have a sell by date, but some of us know it will be sooner than later so enjoy all those days your feeling good, and take it easy when your not. It’s time to be a little selfish and do the things that bring you joy. Xx

[kaza1 in reply to GINI-54]

I think that’s what I’m gonna do I feel for my sister as she is who I go on holiday with as she is frightened to go with me in case something happens while we’re away and I know I wouldn’t go away unless I feel reasonable but you never know x

[GINI-54]

Also, the pallative care team take over from the oncologists. They will visit you at home and discuss pain control, if you have any pain, which I haven’t at all since finishing chemo 2 years ago. As well as ovarian cancer I have secondary breast, I told the pallative team I will call them when I need them, as they were visiting me every 2 weeks asking if I thought about where I wanted to die, I have all my arrangements in place and at the moment I’m living and enjoying my life, I found that I got very down after they had been round. X

[kaza1 in reply to GINI-54]

That’s just what happened to me Gini I’ve said I will call you if I need you I just felt so depressed going through those forms x

[Btte]

Hi Kaza you are still on the roller coaster same as me, I was diagnosed stage 3 61/2 years ago, I am now stage 4 as have active mets on lungs. I have been very up and down since beginning of Dec. I am taking Letrozole which appears to be holding peritoneal & pelvic tumours at bay, but not lung. I now have to decide whether I have radiotherapy to R lung. Point is my team are still giving me options. Please get that 2nd opinion and still keep enjoying life. Love Bridie

[PaulAllen007]

Oh my so sorry to hear your news . My mum is getting that way . Awful . I don’t know what to say but sending you all the positive energy I have xx

[Colman]

I'm so sorry you have been given that news. You should definitely go on holiday. I always go on holiday without insurance only Europe so I can get home quickly if I need to.

I'm dreading that day when I'm given that news. Enjoy yourself time to think about you.

Take care Claire 💙💚💛❤

[grammeejill]

I think the ladies have all given you great advice! My advice would be to switch doctors and take the vacation.! Oh, and give you a huge virtual hug!

[Neona]

Agree with the posts above- nothing to lose by getting a second opinion. And of course a holiday!

[sticky3006]

I agree! Second opinion definitely, you’ve got nothing to loose and you are your own best advocate. Good luck x

[Rlenesue]

Thos news is most dreadful to hear. I'm assuming they can't cut out the portion of liver that has cancer? And of course no one needs their spleen. I would see a surgeon first before making your decision. And if you dont want to fight then by all means, go on holiday. Your doctor should have told you how long you have. Perhaps you can follow up with them? Live and kisses xxxooo arlene

[kaza1 in reply to Rlenesue]

He just told me to get my things in order which frightens me to death the Mcmillan said a form has been signed to say it could be 6 months but she said that is the worse case scenario that also frightened me

Just gotta get that out of my head and keep going x

[Cinia777]

I heard amazing results with full extract cannabis oil

[kaza1 in reply to Cinia777]

Have been on that cinia it helped me with sleep etc but not with the cancer unfortunately

There are many people who have had good results x

[Cinia777 in reply to kaza1]

Sorry to hear that!! Take the break u need from the madness

and in ur quiet time u will find the next step!!! Try not to let fear paralyze u. Its not over til its over! And ur still here!

[Helenafrost53]

Hi Kaza1. I do so admire you. I’m not sure about no insurance, you need to decide but I think you are very definitely still alive so why should you not have that break that I think has been put off in favour of the never ending chemo this week, tablets that week. I don’t want to be morbid but, whenever that horrible day comes you can fill your mind with the lovely things you did, people you met, wonderful meals you had. I’d so go for it, you so deserve it. I wish you all the best. Take care. Oh and ps, if you do get insurance and it’s expensive as I guess it will be, so what, a few less pounds for the tax man.

[Lizchips]

Go, who cares, do what you want and put yourself first!