feeling abandoned

hello

I have posted on here before, I was first diagnosing in 2020 Stage 3C. I had absolutely no idea on that day I was to be told this devastating news. The Consultant that day never even looked up from his papers and just continued to write. When I looked shocked he said you must have known of which I responded absolutely not. The rest was a daze. My partner waiting outside, having to tell my daughter who was at work it was horrible.

fast forward 3 years and after first chemo my 125 dropped to 6 but then 6 months later I was told it was back more chemo it dropped to 15, 6 months later here I am again after dropping to 27!it's now gone to 1074.

In those three years my oncologist nurse has never once rang me, I have barely seen my oncologist the last time was 8th December last year. I was put on Rucaparib but am gene negative I might just as well have taken a smartie, now I am being told I should be on Niraparib but it's too late

2 weeks ago I finally had a telephone call from oncologist all 2 minutes saying I would need a CT scan urgently I have heard nothing. I have asked and asked for an MRI because when I have had them in the past and seen her afterwards she is so vague she says well I can't really see much might be a bit here might be a bit there because I am allergic to contrast dye so I keep asking for MRII and she keeps saying no.

When they did biopsy she said it's inconclusive everything is so vague the neglect is staggering.

finally I have had enough I am getting second opinion on Monday and I will pay for my own MRI somehow. I am having to pay private for the consultation on Monday as well

just wondering has anyone else been treated like this I feel so let down I feel no one can be bothered with me?

sorry for banging on but just frustrated I just can't some attention

[Cardiff05]

Morning It does seem as if the system has let you down !

Important you gain a second opinion, which your entitled to ask for ( assuming your in the UK this shouldn't cost) but my guess would be the second opinion oncologist would require up to date scans in order to offer an opinion.

Alongside this it'd maybe worth asking your CNS a copy of their trusts cancer pathway which is often provided as diagnosis.

Good luck

[Cheka123 in reply to Cardiff05]

i was lost in the system for four months after my 6 round of chemo put on nirparib sit real sick oncologist said i must have the flu turned out 11hours in emergency and had a drain ed my now on 9 cycles of red devil. been a hard road i know how you feel i wish i could go private but not available here in canada. you be strong take no crap demand everything i i fired my last oncologist a lot better felt good also to take control. i hope you have support along this journey it’s your life take control

[Hidden in reply to Cheka123]

I am going to take control I really really appreciate you contacting me you're almost frightened to do that but I literally cannot go back to this treatment any longer. I matter, my life matters I am waiting for Royal Marsden to come back to me I am keeping my fingers crossed they will accept me. They do not accept second opinions you have to burn your bridges basically and even then they might not take me and I will have to try something else. I just cannot go back to this indifference it is shocking. I will post my journey through it all and good luck ladies stay well

[Caleda4]

Hi, I am sorry you have been treated this way, it us disgusting. You should not have to pay privately, as you are entitled to get a second opinion, and your Oncologist should give you the ok, and write a letter to who you wish to see. The best scan for you to have is a PET scan as it is so detailed and should have been suggested by Oncologist. I am allergic to contrast, and have a PET scan every time. I hope that you get things sorted quickly. The other thing you could do is complain to the hospital via PALS. Take care.

[Kazzh]

Sorry to hear you have been treated this way. There is nothing worse than feeling abandoned, like no one cares.The last thing you need is to have to complain and push for appropriate treatment, its just not on.

I would suggest speaking to Macmillan. They often help with letters etc and could support you to go through PALS at the hospital (Patient Advice & Liaison Service)

I think you should outline exactly what you want to happen and say it is urgent.

They can also support you with your feelings, as can Ovacome.

You deserve better & I really hope you get it 🙏❤️ xx

[candyapplegrey]

Yes. As everyone says, you shouldn't be treated this way but I just want to assure you you are not alone.

Hearing my diagnosis at my local hospital was almost exactly the same. Completely callous.

My experience has been very similar. I was diagnosed in 2020 too so had to attend appointments alone. My cancer has already recurred twice. Even though I have clear cell, no scans were booked for me and when I thought cancer had come back, I asked if I was due a scan and was advised to see my GP. Ended up diagnosing my own recurrence.

I tried to change CNS at the start and was then told I'd have none.

Even now, at 2nd recurrence, my oncologist is so vague. I had a CT scan then a PET 3 weeks later, then on 3 separate occasions, I asked whether lesion had grown and was told 'I don't think so. I'll check' each time. No one ever checked. Had another CT. At latest appointment, asked re results and oncologist said she didn't know, hadn't looked, would look now. I know they're busy. I know my latest recurrence is very small. But surely they understand that patients are going to want to know if the cancer has grown. Then she told me cancer was stable. Only found out it had doubled in size when I looked at 2nd CT report that I was given to take with me. Cannot find out when it grew now.

I'd be interested to know which hospital you're at so we can find out if we're at same one. I'm in London.

But, anyway, at least now I know I'm not the only one feeling let down.

Wishing you all the best - like the other ladies say, ask for a second opinion or a PET scan. Are MRIs more expensive? Is that why hospital is denying you one? Or is there a clinical reason?

xx

[Hidden in reply to candyapplegrey]

Thank you for coming back to me it is such a battle I am in Eastbourne in an East Sussex [edited by moderator]. I have complied with everything that has been asked of me, I have never ever once had my oncology nurse ring me since 2020. I have gone through some rough times and tried ringing she always has her voicemail on I leave messages she never comes back. On my hospital notes it's says I have breast cancer which I have not and had clear mammogram it took me months to get it updated and even then they said they could not remove only put a flag on it saying it's ovarian not breast. So I have now hit a brick wall because my numbers are up I am still waiting for her to organise a CT scan which I am allergic to contrast dye.

so today Sunday 16th June I was due to see Miss Fotopiulou in Hammersmith tomorrow but now I am being told to contact Susannah Banajee at The Royal Marsden which I shall do tomorrow

I shall try my hardest to get a referral and MRI:PET scan there is no reason whatsoever for putting these obstacles in my way. It seems to me it's just a lottery but if I do not get some help tomorrow I am putting a serious complaint into PALS my numbers are currently 1074 and I am getting very anxious at the sheer neglect of it all. I will keep you posted and thank you all for listening

[candyapplegrey in reply to Hidden]

So I was sent from Guys to Royal Marsden - I thought it was for a second opinion but was a trial and I saw Susannah Banerjee and she was very nice but wondered why I wasn't eligible for any trials at Guys. It doesn't look like I am suitable for anything at RM because although 2nd recurrence still quite small. Good luck! x

[PyjamaDay in reply to candyapplegrey]

Sorry to hear about both your experiences, it's so distressing and exhausting to have to navigate this on top of a diagnosis. candyapplegrey can I ask if it's Guys that you've had the bad experience with? My sister is being treated there - sometimes it's been great, sometimes less so, sometimes just really confusing. Was wondering about going for a second opinion, mainly (hopefully) for reassurance, but then balancing that against the stress involved

[Hidden in reply to PyjamaDay]

Hello my hospital is Eastbourne in East Sussex it is grim and I just have to find someone else who can a be bothered with me. I am going to try this morning and I will post my progress. Take care all of you

[candyapplegrey in reply to PyjamaDay]

I will PM you.

[Ljwatten]

Oh dear am so sorry you have been sorely maltreated. Where do you live? Is there someone who can support you on your fight hugs from paris

[Hidden in reply to Ljwatten]

Hello

Thanks for answering I am in UK in East Sussex I have my daughter, partner and my old mum whose 98 they are beside me every step of the way but feel let down and disappointed by the very people who are supposed to be helping me medically through this awful journey

[Euphori]

Wishing you lots of luck with this. Feel you are going down the right route to get some proper answers and a complaint would be well justified. I heard nothing but praise for Professor Christina Photopoulou and a little about other lady. I was diagnosed in Dec 2019 and have had chemotherapy every year since, but found last year when I reached 70 everything got a bit vague whereas before they said there was always treatments. I'm a healthy 71 who's not ready to roll over yet. So wishing you the best for this and hope you post to let us know how it goes. It's awful that we seem to have to fight our own corner for this 🤗👍🙏

[Leniko]

that’s awful. The staff at your current facility do not sound very committed. Can you change facilities? Are you in UK, or US?

[Jax68]

I'm so sorry you've had this experience. It certainly isn't universal, my team have been really supportive and engaged. I've seen them every 3 months since I was diagnosed and can phone/email my specialist nurse anytime at all.Can you go back to your GP and ask to be transferred. I would also be speaking to the hospital trust as it sounds like you've had really poor care

[Hidden in reply to Jax68]

Hello

thank you for answering me I am today waiting for GP to call me to refer me to Royal Marsden I cannot carry on like this it is too stressful and yes I have decided to lodge a complaint thank you and good luck to you

[Trickysite]

Banerjee and Fotopopolou (never know how to spell her name!) have first class reputations are are available on the Marsden on the NHS. You are on the right road in seeing them! Emma xx

[SopSinger]

I'm so sorry to hear this. Absolutely no-one deserves to be treated like this. I'm glad you're finally getting a second opinion, but you're entitled to it on the NHS so you shouldn't have to pay. Hope you get some answers soon. Sending hugs!