Having to go private and really can't afford it

[Sharpandshineyteeth]

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!!

Really do appreciate that this is a difficult time and the following is a lot of suggestions or more work for you but given the timescales....contact PALS at the hospital where the surgery is being scheduled for and ask for help. You can literally cut and paste what you have typed above if you email them. If you have access to a scanning or saved on line signature send this to them with a few lines giving consent. They may need you to physically sign something but this might do. I'd also be doing the same to the provider of the testing. Meanwhile I'd be asking the GP to look for other providers. You can exercise your right to choose over treatment. Being very honest I don't know if you can for tests but cant see why not. They need to send to a different provider to met the surgery needs. They can usually do this unless the local CCG has an agreement with a particular provider. I'd be looking up the details of the Lead Nurse for the CCG and getting them involved to. You can just google it. If the tests can be done privately in the same timescale then you need to be pushing for them to get done without costs for you as the mistake is the GP's for not sending in the first place. Don't forget - and I hope this comes out right - but the GP is paying for the first lot of tests. They don't get them for free they will be being charged. They have a responsibility to get them in your timescale. Getting your local CCG involved (clinical commissioning group who oversees GP) might be your way forward. Sending every best wish

I'm so sorry that you're having to cope with this, it can feel very unfair at times. The brca testing process took me a few months, with various appointments with a genetic counsellor etc.

The thing is, even if you don't have BRCA, it may be that you're still at risk due to your family history. They haven't identified everything yet and I got told that if you don't have BRCA but still have a strong family history then you're still in danger. Two sisters both getting it in their 30s is very unusual.

The 1 in 5 failure rate seems very high, did he say what he meant by failure? Both my mum and aunt have had double mastectomies and I know lots and lots of other people who've had them too and while some of them have had issues with the skin/nipples etc none of them have been left with no breasts. You could try to contact Wendy Watson at the National Hereditary Breast Cancer Helpline, she's got so much knowledge about the system and I'm sure she'd be able to help.

Good luck x

P.s If anything doesn't make sense then please feel free to PM. If you are happy to give me your rough address I might be able to help more

Oh yes to CCG. Also NHS England. I don’t know who the relevant people would be in this case but often they’re on Twitter and will respond to direct contact. I had to do that recently for my son. Was given a name - contacted them via Twitter and they very quickly got in contact with the relevant people.

You have been treated terribly.
However, I would want a double mastectomy anyway for peace of mind that it can’t come back when you’ve beaten it.

Its absolutely ridiculous you are in this position.

Honestly though, with your sisters diagnosis factored in, it does suggest there may be a genetic factor and i'd proceed with the double mastectomy.

I have a heart issue in my family and although they have not yet id the cause as a specific gene the consultant thought it was unlikely to affect two siblings in the same family in their early 40's without such a link.

I have also been diagnosed with breast cancer. Had lumpectomy then chemo, then mastectomy because of margins and now having radio. Regarding just have 'one breast gone', it was ok. There was a woman on my ward who had a double mastectomy and reconstruction. Much longer operation and she found it much more difficult to move about afterwards and manage 2 drains. Of course it is personal choice but with a prosthesis and good bra on you really cannot tell. Also if you lose or gain weight you can easily change the size of the prosthesis. My surgeon also said a reconstruction can be problematic during radio. You can also have reconstruction later after mastectomy. If there are no nipples left, the stick on ones look extremely realistic.

@atsea sadly no, a double mx does limit the chance of reoccurrence but it is still possible - they can’t ever get every minute bit and it can regrow in the scar tissue.

I had a double as I felt it gave me the best chance of beating it for good, but as a former AA I don’t miss them one bit.

Good luck @teeth

(GP) I think your hospital consultant should have referred you to the clinical genetics service, don't know why they suggested the long route of going back via GP, less chance of errors too.
I just had a double mastectomy and reconstruction with implants last week for BRCA1, was only in hospital one night, I'd get it all done in one go then you have equal reconstruction and future risk is minimal.

This article is interesting.

www.theguardian.com/society/2018/feb/04/cancer-mastectomy-losing-breast-joanna-moorhead

Thank you everyone. You've given me lots to think about. Especailly those who have been through the procedure and not regretted it.

Tomorrow I will ring my Nurse and see if they accept the online testing. I will complain to my GP practice and try and push them to pay for it and see what happens next.

Contact your MP, this is shameful!

Glad your surgery went smoothly Basil.

Nuts that the hospital discourages one Consultant referring to another Consultant for important time-sensitive referrals like this. Hospital does this as if referral comes via GP then hospital receives funding from CCG pot. However introduces delays and more chance for error/ lost referrals.

I would ask your Breast Surgeon to write to the Genetics Department as the Breast Surgeon is best placed to explain why you would benefit from the brca test before your surgery date, and why your surgery date is fixed. Hopefully the genetics department will have capacity to see you in time.

If not then personally I would have double mastectomy; even if you are brca negative it seems likely there is some other unidentified genetic defect at play to affect you and your sister at such a young age.