Breast Cancer, BRCA2 and Olaparib treatment

Hi Beyondcancer and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Having not had Olaparib I don't have any experience with this drug to share with you but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to see.

I've used the search function to look for previous posts which mention Olaparib and found these for you to have a look through. At a quick glance some are ones that you've replied to but there may be others you haven't read yet.

While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment 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.

Hello Beyondcancer, thank you for sharing. Is Olaparib only an option once someone has had cancer to prevent more? 
I’m Brac 1 positive, known for a few years. I’m sorry to hear you needed to go through cancer treatment before getting diagnosed. I’m trying to convince myself I need the double mastectomy and breast reconstruction. As well as eventual ovary removal - I opted for the protector trial so have just had my tubes removed.

I admire your conviction in going ahead with all these surgeries. If you have any advice on holding onto this mindset I’d love to hear it.

All the best,

Marie x

Hi Marie, 

As far as I know, Olaparib is a preventative treatment so I would go back to your GP and ask to be referred to a BRCA specialist consultant. They may offer Olaparib as it is a much more financially, ethically, and morally better option than putting someone through Chemotherapy and subsequent cancer treatment. But I guess it will be dependent on your personal circumstances and NHS trust. I know it was recently licensed by NICE in England but not sure how widespread the use is!

As for my approach and mindset, I just think that I have children who need me for a good while so anything I need to do to make sure I am here for them is nothing. I know I will heal and yes, my body will be different but it puts me a little further in control. I refuse to let cancer define and direct my life!

That's just me!

I hope you get some answers about Olaparib and any further procedures you choose/ or not choose to have.

All the best

Jxx 

Hi Marie,

I think that currently olaparib is only available as a preventative treatment for people who have had an early stage HER2- breast cancer to reduce recurrence risk. The reason being that the drug is currently very expensive. 

Since you're a little hesitant about a mastectomy and in case it could be of interest to you (and depending where you live!) there is also a trial for a vaccine to prevent breast cancer in women with BRCA1 mutations: https://preventbreastcancer.org.uk/brca1-breast-cancer-prevention-study/

If it could help you to meet and talk with some other people who have gone down the preventative surgery route due to BRCA mutations, 'BRCA Chat' (instagram and website) often have different events all over the country and online where you can meet others, see pictures and examples, etc.

x

Hello Rose222, thanks for this information I wasn’t aware of this trial I will definitely check it out. That makes sense re the Olaparib since it’s so new. Yeah I think chatting with people who’ve gone down the preventative route is something I need to do more of.

I appreciate your help.

Marie x

Since I had breast cancer, the decision to have a preventative mastectomy was very easy for me, but I think as a 100% preventative treatment it must be a much harder decision to make. I wish you the best of luck on your journey, I'm sure you will find the route that's right for you and if I can ever help to answer any questions, don't hesitate to ask!

Thank you Rose222, I appreciate your understanding it’s helping me a lot to connect with people who can understand.

Marie x

Hi ByondCancer I also had Grade 3 Breast cancer in 2021 and followed a similar route of treatment Chemotherapy, radiotherapy, ovaries removed and anastrolzole, I sked my oncologist a year ago about the PARP inhibitors and was told she hadn't heard of it. I made the decision to have the double masectomy, which I haven't had yet - I've been on the list for a year, due to no other route to prevention being available. I am very interested in the Olaparib if this means I do not have to go through all the preventive surgeries. What are the side effects of this drug ? many thanks Mxx

Hi,

Olaparib was only approved in the UK for use in early her2- breast cancer patients with a genetic mutation earlier this year so that would be why your oncologist hadn't heard of it. In my experience, I was prescribed olaparib for one year and started just after my chemo/radio treatment finished (as this is when I found out about my brca1 mutation) to reduce my recurrence risk after a recent breast cancer. Since my cancer was triple negative, there were no other treatments available for me so it gave me great peace of mind. It coincided nicely that as I finished my year on olaparib, I had my preventative mastectomy as I was advised to wait for one year after finishing radiotherapy.

As far as I'm aware, it is not currently a long term treatment for early bc patients to take instead of a mastectomy and I think a one year course of treatment is the standard. There are some patients who have advanced cancers who take olaparib long term in order to control the cancer, but that is a different purpose. I live in France and I never paid for olaparib, but the cost for a month's treatment is around €4,500, so I think this is why the use is limited! 

I put a link in another post above for a vaccine trial for brca1/2 patients to see if it could be effective instead of a mastectomy. Maybe that is of interest? 

I hope that helps!

Hi

csn I ask how your sister is doing as she didn’t have this drug. I had a stage 3ER positive breast cancer in 2021 but my genetic test result for BRCA2 has only just arrived…so I am well outside the window for olaparib and won’t be able to have it, which terrifies me.