Hi all, I hope you're all surviving the snow and your cupboards are well stocked so you don't have to go out.
I ventured out this morning at 8.45 to get to my 12.15 hospital appointment to discuss my BRCA test results. I don't have the BRCA1 gene but I do have the BRCA2 gene which they told me is the cause of my cancer. No one in my family, as far as I'm aware has the gene but I guess it has to start somewhere.
I've got to wait now, about three months, to go to Great Ormond Street hospital to discuss what it's all about. I didn't learn much today except there's a 50% chance my daughter will also have the gene. I'm more worried about her as she's pregnant and has cysts on the ovaries or that's what they think they are. I haven't told her yet.
I hope everyone is okay and I hope you all have a great weekend.
Take care all, Zena xx
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ZenaJ
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My daughter had a cyst before she got pregnant which disappeared, she had scans and this was the result.
It’s always worrying love, isn’t it ? as to what you know and when you discuss it. If I was in your position for what it’s worth, I would wait, although hard, until after she had the baby to break the news.
I’m presuming you want others opinions, I’m sure you will get better advice than what I can give, but you don’t have a clearer view yourself until 3 months away.
It may just be best to let her enjoy the moment,since she will be looked after and I’m sure if anything untoward happens they will know.
Thanks Carole, I was thinking alone those lines but my consultant said it would be best if she attended the next consultation with me so she doesn't hear second hand news. I explained the position but they can't really offer advice. It wouldn't be so bad if my daughter wasn't suffering depression having come off her meds.
Thanks for taking the time to reply. Everyone's opinion helps.
Thanks Suzanne, I'm fine. I was expecting something like that when I got a phone call to go to hospital a couple of days after. She said I didn't look very surprised and that was because I wasn't.
The consultant said I won't get my appointment for a long time probably about 3 months because they like you to get used to the idea. As she didn't tell me much because they'd explain it all at Great Ormond Street how am I supposed to get my head round it. I've had a quick look on the internet which they don't usually advise.
To be honest Suzanne I'm not a bit worried for myself. I'll have all the checks and get looked after as best as they can offer. I'll be relieved when I tell my kids. I've already told my sister as she knew I was going to get the results yesterday. As for the rest of the family I don't know what to do. I've never met 2 of my sisters and only have one of their addresses. I am in contact on Facebook with one of their many children. As there is no sign of any breast cancers on my mothers side I'm assuming it's from my fathers side and there's no way of contacting any of them. The gene has to start somewhere. Maybe I'm the first in the family to get it.
Anyway, enough of that. How you been coping with the snow? Did you get to work? I was out
over 8 hours yesterday just getting to and from Southend Hospital. My trial nurse didn't turn up; nobody knew why. Hope she wasn't lying dead in a ditch somewhere.
My consultant couldn't make up her mind if she wanted me to attend my original appointment on 28th or not and asked me to phone her secretary a couple of days before to see if I should go or not. As she didn't examine me or have my CA125 I think I'll be going. There's so much confusion. The left hand doesn't always know what the right hand is doing.
Hi Zena. I was told I am BRCA2 positive a year ago. I e not heard anything since. My sister and son want to be tested. I’ll have to ask my CNS to chase it up.
It’s difficult telling members of the family. It can affect men too. Maybe you are the first person with the gene. It’s possible.
I’m ok. I’m sitting waiting for my scan at this very moment. I don’t mind scans. Just dread the results.
I hope you have a good weekend. Treat yourself to something nice.
Definitely chase it up Suzanne. It looks like different hospitals have different procedures. That's why it's good to talk to people on here. I can't tell you how much I've learned. If it wasn't reading about the BRCA on here I wouldn't have known about it. No one at the hospital ever mentioned it.
Good luck with the scan. Let me know how you get on. xxxx
What a puzzling thing for the nurse to say. These posts help us all and my takeaway from this post is that asking people "What does that mean?" is going to be tripping off my tongue more. Usually I think I'll figure it out, but with so much being new to me, I'm going to be more vocal.
Good luck with the scan and best wishes for your daughter.
The nurse was asking the usual questions and I guess she said out loud what was written on the paper. I know my cancer is incurable but I hate the word palliative. I like to think that although incurable , I will go many years with treatments. Palliative makes me think terminal, not long left.
I see my consultant Thursday. I’ll see what he says. Hoping it’s all ok.
That's also my definition of palliative, Suzanne. I think I need to reframe that word to mean "easing" or something like that.
And I also feel so strongly that we can go many years with treatment. New discoveries are constantly being found.
When I was diagnosed with low grade serous cancer two years ago, I was told if it came back, there were few options. Four months ago I was told if it came back, there might be an option of more surgery, and just three weeks ago, I was told that there was promising results with letrozol.
So, my plan is to be as healthy as possible under the circumstances. I have a lot of faith in the medical profession, especially the researchers.
Sometimes they don't seem to realise what they're saying. The phlebotomist told me yesterday that someone stood up in the waiting room in the oncology department and shouted out 'I don't know why you're all here, you're all going to die anyway'. Charming man. I had a similar experience in chemo in the waiting room a man suggested we were all wasting our time as we were going to die but it didn't stop him having his chemo.
Try not to let it upset you. There's always hope. As I say even if they say 100% no chance I'm going to be the one to prove them wrong and bring it down to 99%. There's breakthroughs every day and with all our trials there's definitely hope.
A big kiss and hug. Have something nice. Love Zena xx
As I was saying to my 85 year old aunt who has survived three cancers over 20 years, "None of us are going to get out of this alive." We laughed and laughed.
I’m BRCA 1 with two daughters who haven’t yet been tested. While it is worrying...I try to see it as an advantage in some ways. BRCA was one of the first genetic faults identified and as a consequence is being studied by many scientists and doctors. I think we are only at the beginning of genetics in prevention and treatment for disease and I am hopeful that our daughters will benefit from this rather than suffer for it. Love to you Lxx
Thanks Lyndy, I'll definitely put that positive slant to my kids when explaining it to them. I'm getting some good advice on here and thanks for that. I don't really know the difference between BRCA1 and 2, I'll have to look it up on the internet.
Thanks very much for replying and your good advice.
I imagine your daughter has already considered the possibility she may eventually have ovarian cancer in view of your diagnosis. She will certainly be well aware of the early symptoms which is a good thing. You will know whether she’s the sort of person who would like to know now that you have the BRCA2 gene, it also has implications for breast cancer.
It does mean for you that there are more options for any future treatments you might need.
Thanks for your reply. You're right. I told her I was going for the test and she said she wanted to know the results. I didn't mention it to my son but I'll have to now. My only concern is my daughter isn't in a good place at the moment, not because she's pregnant, she's delighted about that, it's because she has come off her meds. I'll definitely leave it a few weeks before I tell her. Knowing now won't make any difference.
Hi. I'm BRCA2 and finding that out was a real blow, not for myself, as I've already got cancer and am in the 'system' so get the best of care and monitoring, but for my children. My daughter got tested straight away and she too has the faulty gene. I was more upset than she was. Her breast cancer risk was 88% - frightening, but she's taken it in her stride, though I was really worried about her as she's prone to depression. She's having annual MRI scans and she's top of the list for investigations should she show any symptoms that might be breast or ovarian linked, which she says makes her feel more secure. As she hasn't yet had children, she's been counselled that she doesn't have to make any drastic decisions yet. My son, as he's single, decided not to get tested for the time being, even though BRCA2 increases prostate cancer risk slightly. Have to respect his decision, as like his sister, he's an adult.
Thanks for the reply. It's so interesting reading other's experiences. I know it will all sort itself out in the end and hopefully neither of my children will have the gene but even if they do, they'll get the best of treatment and who knows, it might have saved their lives.
Hi Zena--I am BRCA II also and both my sisters tested negative (we were all surprised I am the only "lucky" one). It was my Dad who passed it along. When I met with the counselors and asked about my two sons--who both do not want to be tested (yet) the counselor told me it was fine to wait since they are in their 20s but they should--by sometime in their 30s--be tested. I think for women it is earlier but for men they said that was fine. Also--the risk of breast cancer in BRCA II men is high so they need to learn how to do breast exams on themselves as well if they have it. Wishing you luck when you present the news. I understand the concern for your daughter's state of mind and hope when finally told, she does OK with the news. oxox
Thanks very much. I bet I'm worrying over nothing. My sister doesn't seem too concerned so at least that's good. I think she's probably thinking she's lucky if she gets lots more regular checks. She's younger than me and at the age where I was diagnosed with OC so if she gets any symptoms at least they'll take her seriously.
Hi Zenaj, Glad you finally get the results, I know it's not what you would have liked to hear but at least your daughter will keep a eye on her self and as we know in it's early stage, can be curable, both my daughters will have regular test 125 and scan by our GP .
I know this is not what we won't for our girls but I never heard of ovarian cancer before this and like most of us at advance stage. It a hard decision to make should you tell her now or not it would be good if she could go to the next appointment so she can fully understand and ask questions both my daughter came with me.
Thanks Lorraine. Sorry to hear your daughters also carry the gene but as you say we know they'll be well looked after now and anything nasty will be detected early.
I'm not sure what is offered here yet but I've read yearly MRI scans are. I'll have to wait and see. In the meantime we'll do what we always do, get on with life.
You take care, sending you my best wishes, Zena xx
Hi Zena, I found out I had the BRCA 2 gene just after finishing my chemo so felt like a double blow! I waited a few months for genetic counselling, I found the lady very supportive and helpful so hopefully you will get all your questions answered then. I had to do a family tree as we had no history at all of ca in the family. I took my brother and parents along too which was useful for them to hear all the info and aid them in their decision to get tested. My children are too young at the moment so for now I’m shelving that worry but it is awful thinking they have 50% chance of having it too. I did get ref to a specialist dept for breast screening and now I have an annual mammogram and MRI. My onc did say that BRCA patients often respond better to chemo and there are more treatment options for BRCA patients, about the only positive to this if there can be one! I hope you get an appt through soon and all goes well with your daughters pregnancy. Take care, Jo xx
Thanks Jo. I think I'll take my son and daughter with me if they want to come. I'm going to wait a couple of months until my daughter is further along with the pregnancy before I tell her unless the appointment comes through before then. I haven't even mentioned the BRCA test to my son yet because if it came back negative I could have ignored it but I'll tell him soon.
I have a BRCA1 mutation that I inherited from my mum who was tested just before she passed away from OC in 2006. I now work raising awareness of BRCA etc. and how it's such an opportunity to prevent future cancer. Am happy to chat to your daughter if she wants to know more but doesn't want to wait to speak to genetics etc.
It's not unusual to find out you have a BRCA mutation with no inkling before, 50% of women in your situation (diagnosis of OC then test positive for BRCA mutation) have no family history to report.
As it seems so miserable and scary when you first find out, here are some positives about BRCA that I always like to draw people's attention to:
- Although we're more likely to get OC, we're more likely to survive longer- especially BRCA2!
- We are more sensitive to platinum based chemo
- We have access to drugs like PARP inhibitors that work much better on BRCA carriers
- The knowledge means your relatives can get tested if they wish and take risk-reducing action: I had a risk-reducing mastectomy a couple of years ago, and once I'm 35 will have my ovaries and fallopian tubes removed to cut my OC risk. The risk for OC goes up slightly later for BRCA2 so the suggestion is to have ovaries removed between 40-45.
Happy to chat more if either you or your daughter have questions xx
Thanks so much Jo for the positives. I'll certainly pass these on. My daughter had an appointment today at hospital and her mental state is so bad they wouldn't even let her drive home. I would have gone with her if I wasn't looking after my grandson. She's 11 weeks pregnant and see's the midwife tomorrow. They've decided to put her back on medication so in a few weeks when it's kicked in and she's feeling better, also the pregnancy will be further on, I'll tell her about the BRCA results. At the moment she's definitely not in the right state of mind.
Thanks for your kind offer. I'll get back to you if she decides she needs to speak with someone. She's normally fine about things and I'm hoping she'll get back to that soon.
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