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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Having to go private and really can't afford it

38 replies

Sharpandshineyteeth · 27/03/2018 17:38

I'll try and make this short. I am so upset and feel really stuck with this situation.

In November I was diagnosed with breast cancer. It had already spread to lymph nodes so the decision was taken to start with chemo straight away and see how it reacts and make a surgical decision a bit later down the line, but to expect a double mastectomy and ovary removal if I have the BRCA gene. I am in my 30's.

My DSIS also had breast cancer 6 yrs ago in her 30's. She was offered genetic testing but at the time had too much going on so didn't take it up. No other family history at that time. She was treated with a lumpectomy, chemo and radiotherapy. She made a full recovery.

Obviously now with the two of us having BC in our 30's, it was looking like it was genetic. On the day of my diagnosis I was given the referral form for genetic testing and told that the surgical decision depended on the results of the testing. I took the referral to my GP the following day and they told me they would refer me. I was told not to expect to hear too soon and it takes a while.

I got going with the chemo, all the while in the back of my mind I was worried about the double mastectomy. I mentioned numerous times that I hadn't heard from genetic testing but nothing was followed up. Eventually my Nurse chased it up and yep....you guessed it.... my GP didn't send the referral. I immediately went to the GP and sent a new one with my own covering letter as they were useless!!!

Anyway, the long and short of weeks of phone calls is that they don't seem to do urgent appointments and testing takes 6-8 weeks anyway. I have just found out I have an appointment in May. My surgery is set for May. So I wont have the results.

I cant have a lumpectomy first and wait for the results and then have a mastectomy, the reconstruction would fail.

What was suggested was a single mastectomy on the effected side, wait for the results and then take the other depending. That would be awful for me!! Two operations and the potential of having one breast seems worse than them both gone.

So realistically my options are a double mastectomy, even though it may not be necessary. Or pay for private testing, costing over a grand. I really don't have that money. I can put it on a high interest credit card but can't see when I could pay it. It all seems so unfair.

I am having a hard time getting my head around the surgery I am due to have without all this uncertainty. Imagine if I had a double then found out I don't have the gene and it was unnecessary. Also the consultant said reconstruction has a 1 in 5 failure rate so there is a good chance I will be left with no breasts at all!!

OP posts:
user1471530109 · 27/03/2018 17:42

This seems incredibly unfair. I'd be going ballistic! Surely your consultant can rush the testing/results along? Considering the need for this to be quicker.

Flowers I'm sorry you are going through this.

HRoosevelt · 27/03/2018 17:43

I am so sorry, this sounds like like a nightmare. Can you discuss with gp, are they aware what has happened and the implications?
As it's their mistake I wonder if they can contact the genetics people themselves and beg for a sooner appointment?

DairyisClosed · 27/03/2018 17:45

Sorry to hear about your diagnosis. Breastfeed cancer really is unfair Flowers.

My mother had a single mastectomy and suffered with a lot of back problems are a result. But that said that was her choice and wait times didn't come onto it as the whole treatment was private. I would recommend you get in touch with a breastfeed cancer charity and see if they can help somehow. I hope it goes well for you.

Original poster
Sharpandshineyteeth · 27/03/2018 17:47

My consultant said he is not allowed to deal with the referral, there is nothing he can do.

My Nurse is trying her hardest bless her, but she seems resigned to this and says that they have problems all the time with the genetic testing, although obviously this is the GP fault.

OP posts:
Original poster
Sharpandshineyteeth · 27/03/2018 17:48

I could try Macmillian maybe. The time frames for this are so short, I doubt any grants would be agreed that quickly.

Thank you.

OP posts:
ThePinkOcelot · 27/03/2018 17:50

That’s disgusting of your GP! They should pay the £1k as it’s their fault!! I would be kicking off. Complain to the practice manager!!

So sorry you are having to go through this without the added pressure!

ChoudeBruxelles · 27/03/2018 17:51

I would complain to the practice manager and nhs England about the lack of the gp referral and ask what they are going to do to rectify it. I’d also write to my mp. Sorry you’re having to deal with this

Original poster
Sharpandshineyteeth · 27/03/2018 17:53

Realistically though, the GP practice are unlikely to pay?? I have so much stress going on without a fruitless fight!

OP posts:
Rodent01 · 27/03/2018 17:54

Can you get in contact with the Genetics Dept and see if they can help / speed things through?

I knew which genetics department was dealing with our family (because they gave us the wrong results, whole different story) but I could google and contact them?

It’s v hard to know what to do, I was 33 at DX having lost my mother to breast cancer 6 months previous. At this point we believed I did not have BRCA but still opted for double. Lucky, as a year later it turned out we were a BRCA family so I’m glad I went all out.

The thing is, that if you have family history (my onc said) even if they can’t see BRCA, there is likely to be some link they haven’t discovered yet.

Curtainshopping · 27/03/2018 17:55

Given it’s their fuck-up and that the result has a big impact on your treatment options, it should be on them to rectify this. I’d complain to everyone you can think of.

ohfourfoxache · 27/03/2018 17:57

I’d complain to the GP too. And if they don’t respond satisfactorily then straight to NHS England

Original poster
Sharpandshineyteeth · 27/03/2018 18:00

Rodent - I have spoken to them myself and they are saying the same. I have left it to my Nurse for now.

I do suspect that I am wasting my money on the testing anyway but it seems crazy to go ahead without being certain.

OP posts:
MeltingSnowflake · 27/03/2018 18:07

I did the BRCA1 & BRCA2 test online and it only cost me $99 via color.com (that's in the US but I'm sure there's a UK version - actually, now that I think about it, I think the lab they test it in is actually in the UK so you can probably use color.com).

They send you a sample collection kit, it's v easy - you send it back, free postage.

They say you get the results in 3-4 weeks but I got mine sooner than that - and you just log in and check online when the results come through.

Good luck! So sorry you're going through this Flowers

Rodent01 · 27/03/2018 18:10

@teeth that is so insanely crazy and unhelpful - sorry you are so stuck!

tessieandoz · 27/03/2018 18:14

MeltingSnowflake seems to have a good idea.

Jon66 · 27/03/2018 18:15

Can you pay for the test then take steps to try to recover the cost from the ns via their complaints procedure? That's what I would do. Have you got any family you can ask.200 x 5 is easier than 1 x 1000.

Belleende · 27/03/2018 18:15

You could see if there are any clinical trails suitable for you. Many of them will include genetic testing as part of the work up. Might be quicker. So sorry you are having this added stress. You so don't need it.

Belleende · 27/03/2018 18:20

Beware the online tests. If they are not conducted under Good Clinical Practice guidelines then your treatment team may ignore them, the risk and consequence of the results being wrong would be too great. Talk to your clinician before buying any test.

Dumbledoreswarrier · 27/03/2018 18:21

Have you got legal expenses cover on your household insurance? If so, you could use the at to get solicitors involved - they could advise if you are likely to be able to recover the costs later on.

LetsSplashMummy · 27/03/2018 18:23

I'd find a testing body like Melting Snowflake mentioned and do that straight away, shouldn't be too expensive if you are essentially bypassing the counselling side of things (which isn't so necessary when you are already dealing with the worst "what if").

However, I would also try my hardest to have the GP come up with a solution, it will also mean they can't make the same mistakes in the future. My friend had last minute pre-cancer treatment IVF, the NHS couldn't fit her in with a days notice but they did pay for all the drugs, storage etc. everything they could and coordinated with the private clinic so it didn't cost her very much. The GP sorted it and if you go in just to ask what they can suggest you do, they might come up with something.

ILookedintheWater · 27/03/2018 18:23

So sorry you are having to go through this. If going private is your quickest option to limit the 'surgery and see' NHS offering in these circumstances, then £1K seems steep.
I just googled and found this:
www.brcatestuk.co.uk/products-brca-12-service/ which is £295 including a consultant appointment if you come up high risk. Check with your consultant first if they can use the results to inform your treatment though.

BrownTurkey · 27/03/2018 18:24

I would get onto PALS, your local health commissioners, your MP, anyone. Ask your GP to out in a special funding request. This just needs a commissioner to cut through the beurocrach for you - its unfair and they have a chance to put it right for you.

endofthelinefinally · 27/03/2018 18:26

House insurance, PALS and your MP. Contact all three today.
The NHS is falling apart and things will only get worse.
I had to pay privately for urgent treatment last year because the NHS referral process was so inefficient and slow.
My MP managed to get one appointment for me when the hospital had just said there were no appointments at all.
I am borrowing money for further treatment that is not available on the NHS, but will reduce my chances of severe disability.
The anxiety associated with not being able to get appointments and treatment makes everything so much harder.

Original poster
Sharpandshineyteeth · 27/03/2018 18:27

I will ring up my nurse tomorrow and see if they will accept that online test. Thank you.

OP posts:
Devilishpyjamas · 27/03/2018 18:30

Fucking hell this is awful.

If you end up having a double mastectomy and then find you didn’t need it make sure you sue.

How would you feel about going to a newspaper? Seems the fastest way to sort these things sometimes.