Delays has anyone gone private for chemo?

I can’t really help as I don’t know too much about going private but I do know you’re allowed to mix and match private and nhs so maybe you could find one round (as they’ll likely be spaced three weeks apart) and then just pick up from round two on the nhs from May? Xx

* fund, not find

Hel39,

Thabks, that's good to know, I didn't know that, I'm just so stressed out and making myself worse as I just want to be doing something to fight it, and the wait is just unacceptable 

X

Hi Icela I was diagnosed on 15th Dec but because of tests and Xmas and new year my chemo didnt start until 4th Feb and the wait was excruciating everyone was having a lovely time over Xmas and new year and I was a mess.  My lump had doubled in. size and spread to my lympth node as well.  I am now 4 sessions in with 4 to go just had the results of my MRI and my lump has reduced by half and reacting really well to the chemo. So don’t worry yourself silly your chemo will start and fingers crossed if your oncologist has you on the right chemo cocktail you will be ok in no time. K xxx 

I’m so sorry you’re in this position, the wait to start treatment is incredibly tough.  Three months to start treatment does seem unacceptable, but I hope you can get started really soon and the chemo before surgery really does seem to have a huge impact.

 I have been going private.  I have insurance through work and was diagnosed and referred from a work health screening so I just stuck with it.  The treatment is exactly the same as I’d have with the NHS, and I would say that going private is not a complete solution to waiting times.  The hospital is often smaller, clinics are only a couple of times a week and they may need to redo some of the tests so I’m not sure how much quicker you could get started at this point.  My chemo has cost almost 30k in total, around 4k per cycle including drugs and tests.  I’m not sure if it would be cheaper on self pay, you’d have to get a quote.  As Hel39 said you can mix and match but it might be tricky to align the timing for the cycles and the consultant will want sight of the full treatment, so if you go that route I’d try to ensure you see an oncology consultant who also works at your NHS hospital so you can stay with the same one. An initial consultation should be under £200 with no further obligation, so maybe go with that initially so you can discuss your options?

Really good luck, and I hope you can get started really soon.

hi

I did a mix of private and NHS and everyone struggled. So I can't recommend it.

To elaborate a bit, I booked and paid for a private breast exam back in 1998 and was happy with the service. I had a routine mammogram in 2012 which was reported as 'clear'. I had felt generally unwell for a while and had gone for all the routine tests, all of which came back clear.

The GP kept saying it was my age and hormones etc so I booked and paid for another private screening. We reviewed the 2012 scan alongside the 2015 scan and it showed a 10mm tumour which had grown to a whopping 60mm in those three years. It was a flat affected area rather than a tennis ball shape, I think I'd have spotted that. 

I won't say I was blissfully unaware because I felt something wasn't quite right but I'd resigned myself to feeling generally unwell moving through menopause. 

The consultant said he was very concerned, everyone was quietly freaking out on my behalf,  and said I needed an MRI but he wasn't going to recommend I continue to pay as it was the same team, the same machine and I couldn't queue jump.

The biopsy results showed 'only' DCIS and for that our local hospital didn't have a surgeon and it was recommended I go to a specialist centre and they sent me to the Royal Marsden in Chelsea. There was then a catalog of errors involving scans, notes and two MRI reports. Post surgery revealed Her2+++ and everyone started freaking out, again, so I went through chemo from August to Christmas.

I wouldn't recommend the Royal Marsden because I didn't have a very good experience there and it is very busy.

The GP used the 'choose and book' system and I suggest you go back to your GP and see if they will do the same. The wait time is unacceptable and they should be able to arrange for you to get appropriate care ASAP.

How old are you and where do you live, broadly speaking, could you get to London? OR can we find you a centre of excellence you can get to easily?

hugs

Carolyn

xxx

Carolyn 

Thank you, I am in South Wales but would be prepared to go anywhere, I just want to fight it.

I have made complaints today as found out my health board has a 62 day cancer pathway from being diagnosed to treatment, which I am way over now.

I have also been approached by some.media outlets as they want to run my story, so it could all get out there in the next few days and hopefully get me seen quicker, as I said to the reporter, nobody going through thos should also have to be fighting and spending time calling/e-mailing to get the treatment they need and are entitled to, its so sad the state on the NHS, and I feel for all the staff, they are being stretched ridiculously xx

hi  I was very lucky my cancer hadn't spread in those three years but as soon as I'd had the biopsy I started to feel really unwell.  The thought of eating made me feel sick and I suspected seeding. They like to play it down because the benefits far outweigh the risks but the waiting from May to July for the surgery was horrific. At my first appointment in London I took a bag with me because I felt they should admit me there and then, but of course they don't and don't feel our need for some urgency. Then we had to go around again because of the surgical error, so it was mid August before I got started on chemo.

The referral letter was dated March. Total time from referral to chemo was over 140 days. 

This was partly me but mostly the inevitable 2 weeks wait between each test or scan. The experience at the Marsden was awful, because I was 'only' DCIS I wasn't deemed urgent, even though their own marketing material said they treat everyone as an urgent case, they don't.  I was on my third appointment in June and nobody had mentioned a date for surgery.

I guess most of that time I was largely in denial or 'over anxious' as my specialist nurse claimed. 

Bristol has a few oncologists but not that many. Two of my friends have been treated in the south west, let me see if I can find out where they went. Might be Cheltenham ...

I still think you need to pester your GP.  

Call and make an appointment for them to call you urgently to review your options.  Even if they're busy they can usually squeeze in a 10 min call.

May 10th doesn't feel that far away now but I know for you it feels like a lifetime. 

As a general attempt to calm you down, spread through the lymph nodes isn't necessarily untreatable but each variation requires a team review and they tend to happen weekly. There is no rushing this process. 

You need a distraction, do you have a dog, could you borrow a dog to take for walks??

hugs

Carolyn

xxx

Thank you,

Yes I do have a dog, sadly I had to put my other ine down a few weeks ago, I try and go walking as much as I can but some days i am just too tired and all my side is inflamed so I'm In pain.

Yes May 10th is only 2 weeks but that is just an initial discussion, so I don't know how quick they can then start chemo?!?!

Thanks for all your help, I appreciate  it xx

hi .

You can't be in pain, that is completely unacceptable !!!!

I'm tempted at this point to say go to A&E.

The point of the cancer treatment pathways was to avoid people being diagnosed with cancer in A&E departments.

I can think of two options which might get you seen urgently, three if you count A&E

1. use the Go Fund Me cash to see your consultant on a private basis, who is your consultant ? I know I had reservations about how my mix of private and NHS worked out, or didn't, but even offering to pay for a private consultation might initiate a response, an urgent referral 

2. do as I did and find your local private hospital to pay to see a different consultant, I can see a Spire in Bristol but I'm going to see if I can find a bit more choice for you.

3. Go to A&E

hugs

Carolyn

xxx