Mastectomies

[Kernowafibber]

My partner (38) was diagnosed with stage 4 Ovarian cancer in June after many earlier chances of diagnosis. There was also a mass in one of her breasts. She had gene testing and is BRCA 1 positive. She has had 4 doses of chemo, debulking surgery (which went well) and two further doses of chemo.

She has had three oncologists dealing with her case thus far and they were of the opinion that she should have a double mastectomy in view of her BRCA status.

She has just had her first consultation with the oncologist on the breast team who effectively said with your life expectancy it's not worth it but we can do it if you like! The option of removing the cancerous tissue only is not there because they forgot to put a marker in before chemotherapy.

What is everyone's experience of the benefit of mastectomy in this sort of situation?

We also have no idea what her life expectancy is, as no-one will tell us! I understand that everyone will be different but it would be good to get an idea. What can you tell us?

Thanks

[N-A-58]

I am flabbergasted that someone said that.

You can google the statistics but they are out of date and many more treatment options are out being used every day now.

I’m afraid I don’t have anything helpful to add but best wishes to you both

[Goodgirl98]

I cannot believe someone would talk about treatment and care in the context of life expectancy, esp after her chemo and debulking went well. I am OC stg3b brca1 positive currently on olaparib per protocol. I have been considering proactive masectomy but doc asked to wait till olaparib course is over (another 6 months to go). Considering the lump has been detected and assuming she has recovered from prior surgery, I would recommend to consider complete mastectomy seriously (with reconstructive options based on your partner's state of mind and preference). She simply cannot give up and you must not too. I would also consider changing from a team that is using negative language as positivity is a very important aspect of recovery. I did not understand the point -on forgot to put marker before surgery; hence not commenting. Wish you the very best and take care of yourself too.

[Skyeplus]

I am stage 4a , high grade serous, with spread to peritoneum spleen and liver, BRIP1 positive, diagnosed in Aug 2021 and told then I had 6 months to a year. Well I’m still here. I had chemo, debulking, chemo, Niraparib and more chemo. My oncologist last week said have a break from treatment, scan in 3 months and we’ll look at future option. Future options being his key words. So I am shocked at what the person from the breast team said. However three of the oncologists said go for a full mastectomy and three to one is good odds. No one knows in reality. Statistics are out of date, treatment for both breast and ovarian cancer has moved on. As Goodgirl98 says, don’t give up. Positivity is the way though I won’t lie it’s a tough journey. Sending lots of positive vibes and ❤️ and remember to look after yourself as well as your partner.

[Fluffyjumper]

I’m sorry that your partner and you are going through this and am shocked that the oncologist on the breast team said that. There are women on here who were diagnosed with stage 4 ovarian cancer over a decade ago. Never give up. One of the things this ‘journey’ teaches us is to be your own advocate and push for treatment, trials, second opinion.

Apologies for being negative but I would be tempted to either seek a second opinion from another breast oncologist or ask for a different breast oncologist for surgery. I wouldn’t feel comfortable being operated on by someone who thinks that it’s not worth it. Both you and your partner need confidence in the surgical team.

[NewtonEmma1900]

Just with regard to ovarian/peritoneal stage 3. My oncologist’s words were ‘ you are treatable not curable and we will carry on treating you until we have run out of options or you have had enough’. Treatments are improving all the time - keep pushing; You could have many great years to share 🙏

[Lyndy]

I am BRCA 1+ and stage 4 hgsoc and despite what my prognosis might have been when I was diagnosed 8.5 years ago, I am still here and very much fighting! So what do they mean by life expectancy??

Get a second opinion from a specialist centre, don’t be fobbed off.

And yes I was offered double mastectomy after my first line chemo but didn’t go for it because by then my risk was falling xx

[Demelzatheseagull in reply to Lyndy]

Hi Lyndy. I'm considering a mastectomy and am struggling to get my head round the risk stats. I was intrigued that you said your risk was falling after first line chemo. I'd be really grateful if you could elaborate x

[Motiva]

That must be awful; dealing with your consultants bias and negativity. I have just spend time with the Ovarian Cancer Research Group in Cambridge. So many brilliant minds are working hard with a huge passion to both improve early diagnostic rates and for us tailored treatment options.

As others have said there is a lot of out of date information since the availability of PARP inhibitor and bevacizumab maintenance protocols. The PARPs are ideal for BRCA variant people like us both.

Risk reducing surgeries and surgical treatments should only be avoided if you are not well enough to be anesthetised safely or the risk outweighs the benefit.

I would wholeheartedly agree with the others and seek a second opinion and a better explaination as to why surgery may not be the best option then you can make the decision together with the information you have.

[bamboo89]

What type of ovarian cancer does your partner have? At 38, its less likely to be high grade serous, which is what most older women get, and treatment options vary depending on the type of OC Stage 4 is obviously end stage, but that doesn't necessarily mean she doesn't have long left, no one can say - I'm stage 4b, diagnosed at the end of 2017 and I'm still here, but I am older...

[Kernowafibber in reply to bamboo89]

Hi. It is high grade serous with a triple negative breast cancer

[Kjpip]

Hi, can I ask if your partner has been offered maintenance treatment? I am HGS Stage 4 also, and because I am BRCA I had the option of olaparib and avastin once my chemo was finished. If so, she won't be able to have the mastectomy while she's still on the maintenance treatment but once it's finished you can review your options - with a better oncologist preferably!