Immunotherapy and triple negative

If you have the BRCA1/2 gene you will likely be offered bilateral mastectomy when surgery comes, and perhaps even removal of ovaries at a later stage when you have recovered from breast cancer treatment. I guess the key question is when will the gene test result be back?

Hi Lou,

I was triple negative, stage 2, and found out I have a BRCA1 mutation. I live in France and they just approved Olaparib/Lynparza, which is a targeted therapy, as preventative treatment for those who have had early stage tnbc with BRCA1/2 mutation so I started this at the end of March. I'm not sure if it's been approved yet in the UK, but I think there may be trials ongoing.. you could ask your consultant about that? No one mentioned anything about immunotherapy, so I can't help on that front sorry.

For the surgery, as Zephyr mentions, due to my BRCA1 mutation I have been offered the option to have a bilateral mastectomy or to have alternating breast MRI and mammograms every six months. For the mastectomy, I've been advised to wait one year after the end of radiotherapy so I can have immediate reconstruction. I think I will go down this route as I would rather have less risk going forward.

Ovary removal has also been recommended for me after 40 years old :)

Will you get your gene testing results before your surgery?

Best of luck with your appointment today

Hi Rose, 

Thanks so much for this so helpful and I will ask them about this as an option for me. Unfortunately my gene testing probably won’t be back before my surgery so does that mean you had or will have a surgery now to remove the tumour and then mastectomy surgery after radiotherapy finishes? Are you also having chemo or have they said this will be of no benefit to you? Sorry for all the questions, I am hoping I will have more answers after my consultation today but feel in a whirlwind of information and want to be at least prepared! 
how are you doing so far on the targeted therapy so far are you monitored regularly? 

Thanks so much xx

Hi Zephyr, 

Thanks for your reply. This is my worry as I don’t believe my gene results will be back for a few weeks but I am scheduled for surgery next Friday and am now concerned I may need more surgery once the results are back! 

Hopefully some of my questions will be answered today but wanted to see if anyone else has been in this position and how their treatment plan turned out although I understand it’s not a one size fits all process.

thanks again xx 

No problem, ask away! I had a lumpectomy which led to my diagnosis (no one expected it to be cancerous as a previous biopsy came back benign!), then sentinel node removal (2 were cancerous), followed by 5 months of chemo, then another op to double check axillary nodes and 27 sessions of radiotherapy which I finished at the end of March 2022. It was at the end of my radiotherapy that I got my gene testing results, but I believe that even if I had them in the beginning, I would still have had the same chemo/radiotherapy treatment. Since triple negative is quite sneaky and aggressive, they don't want to take chances and it's more than likely that chemo will be offered.

One thing I've learned on this journey is that each treatment plan is individual, so they may offer you something different. Even when people have seemingly the same cancer, there can be differences in the size, stage, grade, location, age, etc that mean we all follow a different path. It's VERY overwhelming in the beginning taking everything in, having your world turned upside down and going for all the scans and tests, but once you have your treatment plan and get started I found it a lot easier to manage. I'm sure your consultant will give you lots of info today that will put you into another whirlwind, but hopefully you have a good team that you can put your trust in to get through this nightmare!

The first few days on Lynparza were a bit rough like having the flu, but that quickly disappeared and now I feel like my normal self. I have blood tests every 2 weeks for the first 2 months, then every month after that for 10 months (when I will finish the medication). I see my oncologist every month at the moment to review my blood work and a physical exam and I'm happy to say that so far all is good :)

May I ask how old you are?

Wishing you the best of luck today and for the upcoming months!

Morning Rose, 

Thank you so much for all this information it has been so reassuring and was so helpful when I saw my consultant yesterday. 
It looks like my journey will be pretty similar to yours at this point. Lumpectomy and node excision on Friday the chemo and radiotherapy.

This may of course change should my gene testing come back with a BRCA result and my option then would be a bilateral mastectomy after chemo but before radiotherapy. I will cross that bridge if and when it comes to it but at least for now I have a plan to move forward with which gives me a small feeling of having a little more in control of what is happening to me at least.

I will discuss the option of lynparza when the time comes but it is great to hear that you are doing well on it and the side effects subsided quite quickly.

Onwards and upwards and I hope I can reach out at anytime to see how you are doing and we can exchange updates or if I have any questions that would be amazing! Oh btw I’m 51.

Thank you again Rose and I look forward to chatting again soon!

Best wishes 

Lou x