BRCA +ve with OC. The options for breast cancer prevention.

[Carpediem68]

Hello ladies.

I am about to complete my frontline chemo for stage 3 OC and I have just been told I am BRCA1+ and so will need breast cancer screening every 6 months with optional prophylactic double masectomy after Olaparib in 2 years. I just wondered what other ladies who are BRCA +ve have done? Have you opted for regular screening or have you had surgery with/without reconstruction? Is there any other prevention? Have any of you gone on to develop breast cancer? At the moment I'm feeling a little overwhelmed with all the constant bad news So I can't really think about breast cancer too. I certainly want to reduce my risk as mush as possible. I'm 54.

[Lyndy]

Hi sampanda10I am BRCA 1 and currently on Olaparib for recurrence. My genetics counsellor was really helpful and advised me that at my age (I was 57) my BC risk was falling given my particular version of BRCA. That information plus the fact that I found no family history of BC made me stop short of getting the surgery. I opted for annual mammograms and I am on the high risk screening programme at my local hospital.

At the time I felt that I couldn’t face more surgery so this was a good solution for me xx

[Carpediem68 in reply to Lyndy]

Hi Lyndy

that's really helpful, thank you. i haven't even seen a genetic councellor yet but I can't help my mind racing! I have a mammogram in a week so hopefully if that is clear I will relax a little and take stock. i guess the ovarian cancer is my immediate problem that I should focus on for now. It's all just so much to take in at one. Did you have Olaparib after frontline or just after recurrence? Are you coping with the side effects ok? Thank you and I hope you are doing really well! xx

[ZenaJ]

Morning Samantha, I was like you. I had to ask for BRCA test and was found to be BRCA1. I now have screening every year. I was advised against surgery as I was in my early 60's at the time. They said if my daughter was also BRCA positive they would give her a double mastectomy straight away. She was pregnant at the time so there was a lot of worry. I have found the regular screening to be okay and will deal with cancer if or when I get it.

I was also told that having had ovarian cancer first it was unlikely I would now get breast cancer but it can't be ruled out all together.

All the best, Zena x

[Carpediem68 in reply to ZenaJ]

Hi Zena

Many thanks for your reply. Oh that's interesting that you were advised against surgery. I guess I'll have to wait to see what they advise for my situation but it's reassuring to know you were advised against. i think actually, I need to focus on my ovarian cancer right now and try and put the rest to the back of my mind for now. I hope you are doing well now after your ovarian cancer! xx

[ZenaJ in reply to Carpediem68]

Thanks Samantha, I think you're right. Deal with one thing at a time. The breast cancer side of it might never happen. It's just one more thing to worry about.

I've been fine thanks and hope to be for many a year yet. My CA125 this week was the usual 8. It was never too high to start with. I still have a bloated belly and painful feet but that's nothing in the big scheme of things.

Best wishes,

Zena

[Carpediem68 in reply to ZenaJ]

Hi Zena

Gosh 8 is great! Are you on Olaparib or any other PARP? I have one more chemo to go and my last CA125 was 9 so I'm crossing my fingers it stays low. They said after chemo I can either have Olaparib on its own or with Avastin. But my oncologist thinks the Avastin may be possibly be too much in terms of side effects. Buit she said the decision is mine. There are constantly so many decisions to make I can't keep up!

Best wishes to you and hope that your CA levels keep themselves nice and low!

Sam xx

[ZenaJ in reply to Carpediem68]

Thanks Sam, I didn't take Olaparib or Avastin. I don't think it was available then as I've only heard of it by reading other ladies experiences on here. After treatment I just went back to normal eating and drinking with regular CA125 tests. It's odd when you get to the end of treatment as you go solo and I got used to being kept an eye on. It took a while to settle down but I did eventually.

Look forward to hearing your progress.

Zena x

[Carpediem68 in reply to ZenaJ]

Hi Zena

Gosh that's encouraging to hear that you are clear without any maintenance drugs! To be honest, they are both a blessing and a curse as side effects can be quite bad for some ladies. But it's impossible to know when or if reccurrence will occur so I think it's great that they are available now as an option. So happy to hear your experience!

[ZenaJ in reply to Carpediem68]

I'm really pleased that there are more options available now. I am still on trials and even before cancer I did other trials to help with all sorts of illnesses. I know that some won't do anything to help me but if they can help others in the future, it makes me very happy. All the best, Zena xx

[Carpediem68 in reply to ZenaJ]

Hi Zena

Oh, that's interesting. Do you mind if I ask what trials you have been on?

xx

[ZenaJ in reply to Carpediem68]

Hi Samantha, I have done/are doing trials for hair loss, genetics, ovarian cancer, alzheimer's and osteoporosis and different ways of taking medication. They were all interesting and paid by different companies. The first three I did for free of course. I would have done more but I'm not allowed to now.

I remember having a lot of fun when staying in the different university hospitals with a wide range of people. One trial involved taking blood every half an hour so we all had a cannula in each arm in case our veins collapsed, as there were very strict guidelines. During the night we were in a sleep chamber and the tube was passed through the wall so they could take the blood during the night.

I'm still doing the genetics and every year I have to arrange for blood to be taken and then post the samples to them. You don't get to see the outcome but at least it's helping someone. xx

[Carpediem68 in reply to ZenaJ]

Wow, that's amazing! Well done you! x

[Dales-Rambler]

Hi SamanthaI was 1st diagnosed BRCA1 in 2015 aged 46 shortly after OC surgery for stage 3C. My genetisist was keen for me to seriously consider risk reducing breast surgery, in view of family history of BC, but not until I was fully recovered from chemo and reversal of ileostomy which in fact didn't happen until 2017. In the meantime I went on the annual high risk screening programme at my local hospital. When I felt ready to revisit the breast surgery option I had talks with Macmillan breast nurses and breast surgeon and was at the point of making a decision to proceed but then shortly found out my OC had returned. More surgery and chemo was required so I've now ditched the breast surgery option and will continue with the screening. On refection I'm glad I didn't proceed as I've had enough major surgery for a lifetime!

It's a hard decision, but I'm sure you'll choose whatever the correct option is for you.

Good luck with your recovery from the chemo.

Best wishes

Sally

[Carpediem68 in reply to Dales-Rambler]

Hi Sally

Many thanks for your reply. yes, I'm worried about juggling both my OC treatment and breast surgery. My oncologist said not to go ahead until after PARP treatment has finished anyway so I will concentrate on the cancer i have for now. So sorry about your recurrence but I hope you are doing well now xx

[Dales-Rambler in reply to Carpediem68]

Thanks Samantha. I'm currently 8 months post chemo, on Rucaparib, and all is looking good so far.

[Carpediem68 in reply to Dales-Rambler]

Hi Sally

Oh, so pleased to hear you are dong well on Rucaparib. Long may it continue!

[Jacky5]

Hi Samantha.I was diagnosed 3 years ago and found to be brca2 positive.

I saw a surgeon to discuss my otions regarding breast cancer prevention. Like you I was still reeling from my initial diagnosis. I couldn't contemplate more surgery and opted for screening and anti eostrogen tablet...Anastrazole. I find the side effects rather frustrating, hot flushes which seem to be getting worse and aching joints.

I completed 2 years of olaparib on new years day this year and my latest scan and bloods are thankfully all normal.

I've found myself thinking about the breast surgery now...partly as I'm doing well I feel able to contemplate more surgery now and partly as I would feel pretty annoyed with myself if I got breast cancer now !

I have just made an appointment with my GP to ask to be referred back for breast surgery. I'm guessing there will be quite a wait but that's fine.

I think as you progress with your treatment and start to feel well and strong again you will be better able to make your decision.

All the very best to you.

Liz xx

[Carpediem68 in reply to Jacky5]

Hi Liz

Oh that's interesting about Anastrazole. That hasn't been mentioned to me. Only Olaparib and Avastin at this point. I will mention that to my oncologist. He did mention Tamoxifen which is similar I guess? Thank you for letting me know. It's all so much to think about at the moment. I'm so glad that you are feeling well now and fingers crossed that you continue to do so after coming off Olaparib. Did you tolerate olaparib ok? I have heard that the side effects can be quite bad? I'd be interested to hear how you found it.

Lots of best wishes to you going forward x

Sam x

[Jacky5 in reply to Carpediem68]

The Dr at the breast clinic did talk about tamoxifen. I can't remember why she decided to start me on Anastrazole...sorry brain fog.I found the Olaparib very doable.

Some abdo pain, some very occasional nausea and upset tummy( you're given medication for that in case you need it) The odd mouth ulcer. Aching joints...but I'm still not sure how much that was down chemo or Anastrazole.

All in all none of it bad enough for me to ever consider reducing the dose or stopping the treatment.

I was I believe, in the first wave of ladies being given the 2 years of Olaparib treatment after 1st line treatment and I'm so grateful for that.

I had some avastin to start with but that stopped when I started Olaparib as they werent approved together then as they are now.

Another point is that Olaparib is given for breast cancer too so I always felt I was being protected and that eased my worries about breast cancer during that period.

Really hope all goes well for you with the Olaparib.

Liz xxx

[Carpediem68 in reply to Jacky5]

Hi Jacky

Thanks fdor letting me know about your experiences with Olaparib. I'm being offer Olaparib on it's own or with Avastin after frontline which is quite a new regime I think. I'm still not sure what to do but like you, I'm so very grateful to be given any options at all. My oncologist did say Olaparib may protect against breast cancer too so I'm keeping my fingers crossed! Did you Have Olaparib at the same time as Anastrazole? How long did you have anastrozole for? x

[Jacky5 in reply to Carpediem68]

Yes I was taking Anastrazole at the same time as the Olaparib. I'm still taking the Anastrazole. I think its taken for 5 years like tamoxifen.

I'm assuming I will be able to stop it if I have the double mastectomy.

Yes I think the avastin with Olaprib is quite new.

I did start avastin with my other chemo but unfortunately there was no option to continue with it then if you had Olaprib so it was stopped.

Hope that all makes sense.

How soon will you start the Olaprib?

[Carpediem68 in reply to Jacky5]

Hi Jacky

Thanks for that. I'll definitelly mention the Anastrazole when i speak to my oncologist. I have one more chemo on the 7th April then should start Olaparib within 8 weeks of that I'm told so I have a bit of time to think about things. Does Anastrazole help with the OC too as I know that is given as mainenance for some ladies? My tumour is ER and PR +ve (7/8) so I'm not sure what that means. It's all so complicated. Good luck with the rest of your Anastrozole maintenance. xx

[Jacky5 in reply to Carpediem68]

It is given as maintenance isn't it? That's a good point that I need to consider...thank you. I don't know anything about ER, PR +ve I'm afraid. There seems to be increasing amounts of tumour testing to help personalise treatment which is so encouraging. Best of luck to you too .Liz xxx

[Jacky5]

I forgot to say...im 57 now. Xx

[Karengarci]

Hi samantha im bracca 1 i had oc in jan 2020 total hysterectomy followed by chemo finishing in aug ...dec 2020 i had a double masectomy with immediate reconstruction .....the surgery and recovery ( 12 weeks plus) were gruelling but the peace of mind to be was worth it .... i think its all personal choice i hope u get on ok xxx

[Carpediem68 in reply to Karengarci]

Hi Karen

Gosh that is a lot of surgery. I hope you are feeling much better now! Did the reconstruction affect your recovery do you think? That's something else again to consider - going flat or reconstruction.

Did you have any maintenance therapy for the OC at all like a PARP?

I'm so glad that you have peace of mind now. And I really hope you are getting on well now after all your treatment!

Many best wishes.

Sam xx

[Karengarci in reply to Carpediem68]

Hi sam was lucky to be diagnosed at stage 2a so ever though bracca 1 i don't qualify for parps until after my 1st reoccurance .... its all seem a bit odd but i suppose they have to have a line ... i think the reconstruction was very much the reason for a long recovery but to be honest im just having micropigmentation 3d nipples and its made me feel whole again .....to me mentally i think the normal appearance of my breasts has really helped

[Carpediem68 in reply to Karengarci]

Hi Karen

Oh, that's great news about being 2a! That will hopefully give you some peace of mind. Yes, mentally how you feel about yourself is very important. At the moment I'm in pure survival mode but I know I may feel differently down the road and may wish to consider reconstruction so I don't want to rush into anything. So much to think about ... xx

[Jacky5 in reply to Karengarci]

I'm sorry for some reason my laptop hadn't shown your reply regarding micropigmentation. Its a great to hear that's available and makes me feel much more confident. Hope all goes really well for you.Thanks again

Liz xx

[Jacky5 in reply to Karengarci]

You've already answered my question.

L x

[Karengarci in reply to Jacky5]

Hi jackie sorry i missed ur question i was originally offered nipple sparing but on the day breast surgeon had a change of mind yes i am in uk in Leicestershire xx

[Jacky5 in reply to Karengarci]

Thanks very much. L x

[delia2]

Hi. I have a PALB2 mutation which puts me at risk of breast cancer and my daughter and sister have it too. My two stepdaughters are brca1. All of us are doing surveillance but they are doing preventative surgery for OC. In the US surveillance is a breast mri alternating with a mammogram every six months. It is important to consider family history which a genetic counselor should discuss with you. Also my oncologist said Olaparib would help prevent breast cancer. You are right that it’s too much to take in at one time. It’s horrible! The bright side is it should make Olaparib effective! Xx

[Carpediem68 in reply to delia2]

Hi Delia

Thank you for your reply. So sorry to hear that so many in your family have these awful genes. My son hasn't been tested yet but I have that to worry about too.

Yes, my oncologist did mention that they think olaparib may help prevent the breast cancer so that is probably my best course of action for now. Theysaid they don't have direct evidence from trials yet but theoretically it should help keep it at bay. Everything has just been such a blur since my diagnosis last year and so much has been happening it's been hard to think about it all. Hopefully my chemo will work and Olaparib will give me some breathing time to come to terms with everything and think about my choices. Thank you for letting me know your decisions.

Many best wishes to you and your family!

Sam xx

[Sherrym]

I am BRCA1 & am advised that as I grow older my breast cancer risk is falling. I have a mammogram annually

[Carpediem68 in reply to Sherrym]

Oh that’s interesting. I didn’t know the risk reduced as you got older. Thank you.