Recently diagnosed after waiting for preventive surgery BRAC1

Hi Girlpowerx 

I'm sorry to read that while you were waiting for a preventative mastectomy you developed triple negative breast cancer (TNBC). I hope that the NHS investigate why things went so wrong for you.

I was diagnosed with TNBC last April after a routine mammogram. Since then I've had a lumpectomy, chemotherapy and radiotherapy and I'm coming up to my first mammogram after treatment has finished.

As you know, the online community is divided up into different support groups so you might also like to join the main breast cancer group and also the triple negative breast cancer group, which are great places to ask questions, share experiences and get support.

If you'd like to do this, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here, and join in with existing conversations by clicking on reply.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

I know how you feel, the Nhs waiting list is at a stand still (well it feels that way)

I have brca 1 also and I’m chasing up everyone and going through pals. I have 3-4 mths to see if I get a date for my op but it is a worry of mine too. 
Thank you for sharing and I’m sorry you have had to go through this, I haven’t got health insurance 

Yes I think that's a good idea. Now I look back and think I should have kept on chasing them up. But I thought to myself it's understandable because of coronovirus. But being nice didn't get me anywhere. I suggest to get health insurance and once you have had your op you can cancel it. That was going to be my intention. When I got my health insurance I felt abit at ease knowing I have that as a back up. I'm so glad I did especially since the NHS are having a hard time. I hope you get an answer and keep pushing! 

Hi GirlPowerX,   

I am SO grateful you have posted this!  I have just discovered I  have the BRCA 2 gene and having worked in the NHS all my life I know  how broken it is.  I have had an initial private consultation already for a double mastectomy and reconstruction and thought I would withdraw my pension fund. I’m single, 57 and need to be sensible about financial decisions. In my mind, if I don’t spend this now, I may get cancer before my retirement and wouldn’t get to enjoy it anyway.

please could you advise about the health insurance though, surely if you apply and know already you have the gene, you wouldn’t be able to qualify for the insurance ?….. and did you need a psychologist assessment prior to surgery? (As suggest by my Consultant).

Such a relief to speak to someone in the same boat….as I don’t have cancer, I didn’t feel I could make a fuss. 

I apologise, as calling out for help I didn’t acknowledge what a terrible shock it was for you to find cancer. I am awaiting results of a mammogram and am booked in for an MRI, my boobs ache but I think it’s just due to the HRT. I really hope you are well and in a positive mood, it’s gotta be a tough journey and I’m sorry not to have said so in my first contact with you. Sending love and hugs xxxxx

Hi kate654. It's fine, don't worry about it.it was a shock but wasn't a shock as ive always thought I'm going to get it. But it's just the fact that while I was waiting for my preventive surgery it happened while I was so close to the thought that the anxiety would be lifted. 

About the gene and insurance. I searched a lot regarding this and also about full cancer cover. I chose to go with Vitality. I phoned them up and asked whether I would still be legible. They said yes! And they also state this on their website. They even do gene testing,Cancer screening, Ect.

To be honest they have been brilliant. I'm so happy with the choice I made! 

And yes I did everything prior to my preventive surgery regarding the psychologist - I was just waiting for the heads up. 

The psychologist just want to know if you are fine with the fact of the masectomy ect. I was like the worry of cancer kills me more then the worry of having my boobs taking off so I'm 100% fine with this situo. 

Hope the overload of info helps! 

Can I just state that the insurance does not cover a preventive masectomy. Only if you actually have been diagnosed with BC you can use that.

If you were to go with the preventive masectomy private it would be a lot of money, but thats one thing i regret doing. Not using my savings for this and waiting on the NHS When i got diagnosed.  I thought How am i going to enjoy this money now ect.  I just took out the insurance for back up. 

If you have the money there i think use it, especially as you have a higher chance with the older you get. 

The NHS will be around 18/24 months im presumimg. 

Ecatly my thoughts too re: fear of cancer overides losing boobies at 57. 

How was recovery fro you ? I ll need to work ASAp as just started new job and don't qualify yet for sick pay...doh!

Recovery to be fine, thought it was going to be worse than it was. I think it depends what yoy choose. I had implants if you use your own skin it will take longer. 

Its currently been 7 weeks after surgery, tomorrow i start chemotherapy which Im Dreading but hey-ho. 

How much have they quoted for a masectomy going through private if you dont mind me asking?

Hi again, verbally the Consultant estimated £22 - £24K !!! .