I received a letter from the hospital yesterday asking me to go along for a blood test to determine whether I have that faulty BRCA gene.
What if I test positive? What will that mean for me regarding treatment etc?
I'm currently NED and just on avastin now.
Will this test change anything?
Thank you. Xx
Hi Suzanne. Being BRAC positive is a double edged sword Ive found, especially if you have children. I have BRAC 2 and my son has just tested positive. However because I am positive it means Im eligible for the current trial im on and it means that my son will be tested/monitored at an early age for prostrate cancer. You dont have to be tested if you dont want to be and Im surprised they havent offered you counselling before you have the test. My personal take on it was that I didnt need to know for me after all I already had a cancer diagnosis but I wanted to know for my children and brothers, niece and nephews. In fact my elder brother has also recently tested positive and he has prostrate and leukaemia . His son and daughter are just going through the counselling, testing stage. I hope you make the decision that is right for you xx Kathy xx
Hi Kathy.
Thank you for your reply.
My mum was diagnosed with breast cancer the day I was having my second chemo. My nan on my mums side had cancer of the womb. Maybe we do carry the gene.
I have a son so I guess I should find out. I have a niece and nephew too. Best to know - I think.
Xxxxx
As Kathy has said I believe it opens up different sorts of treatment including PARP inhibitor treatments according to a very informative medical video i watched the other day. (On recurrence)
I sent off my form to be tested last August and am still on the waiting list!!!!
Clare xx
Hi Clare.
How are you doing?
You're on a waiting list? They should surely test you straight away if you want to be tested.
I'd never thought about being tested. I'm aware of the gene etc but had never questioned any information on it. I guess it can only be a positive thing to be tested. If it's positive and there are targeted treatments for it then that's s good thing.
I hope you are doing ok. Xxxx
Better this morning thank you! I was surprised at the delay and I think this wait is to be counselled first BEFORE testing!!! Crazy isn't it! I don't want counselling I just want the test so think I'll chase this up again next week.
Xx clare
Aww. Am glad you are better today. I hope you continue to do so xx
Kathy mentioned counselling. I've not been offered that. Not that I'd take it. The letter just arrived out of the blue. The BRCA gene thing has never been mentioned to me before. I'll go along though.
Have CT scan next week and a blood test then this BRCA thing the week after , a day before avastin. It's all about scans and appointments now. Guess it has to be.
You take care. Xxxx
I have also asked to be tested a couple of times and still waiting so will chase up again as others have said gives you different options if you have a recurrence and want to know if I am positive as have a 20 year old daughter and niece .
Kimx
I'm BRCA1 positive. Knowledge is power. First like the others say it can help with your children's future. If you are positive they have a 50 percent chance of being positive. If they are then they can take preventative measures and their children and so on... if I would have known earlier I could have done something different probably. Because of my results my sister got tested and is positive too. So she will be taking preventative measures.
As far as your treatment.. I was told from my oncologist and Gyno oncologist that nothing would change now. If I had a reoccurrence there are different options out there for treatment with those with the BRCA gene. I was also told that patients with the BRCA gene respond better to chemo usually, which is a plus. Also, people with BRCA gene can take preventative measures like getting a full hysterectomy to prevent this Ovarian/fallopian tube cancer, a mastectomy or more instense screening for breast cancer. BRCA carriers have a very higher rate in getting Ovarian, breast and pancreatic cancers. So because I'm a carrier I have to think down the line if it is worth getting a mastectomy to prevent breast cancer. If not, I will be getting screened more.. they advise...mammograms every 6 months and a MRI breast check every 6 months if your BRCA positive.
Just my thoughts and hope this helps. Let me know if you have any questions. It def helps with family history and to help explain why I got this disease at such a young age.
Hi.
Thank you for your message. It makes sense what you're saying. Knowledge is power.
I think everyone should be tested for this gene.
My mum had breast cancer recently. She should get the test too as she could get ovarian. My sister had a scan last week as is having bladder troubles. She's had a CA125 and it was normal.
I was wondering about the fact that if I contest positive , would they suggest a mastectomy. I dread the thought of that. Xxxx
Yes it could help with preventative measues with your Mom too, knowing if she should be getting a full hysterectomy.
Well I have been told getting s mastectomy is a personal decision. The monitoring is key and the great thing is it is out there for breast cancer. Now if your BRCA positive and haven't had a hystecomy I know they advise that's the first step. Since of course as we all know there are not many screening tests out there for OC like they are for BC. Also when you remove your ovaries which is key it also helps in making your chances of getting BC less! Because of the hormones.
A mastectomy is the extreme and a decision I have to make too. At first I said I would do it asap but now after the debulking surgery and all this... didn't think it will be this tough. I have decided to wait and see. I will have my intense screening for BC and think about it and where I'm at in a year after my treatment. My body needs a rest. I just had a baby 5 months ago too.
I think if I test positive then I would go with the intense screening too.
Aww you've had a baby just five months ago. Your body's been through a lot.
You certainly need a rest - if you can with a baby. They keep you busy. 👍🏻👍🏻👍🏻Xxxx
Yeah they have so many breast reconstruction options nowadays too! Yes she def keeps me going and strong on those hard days! Take care! Xoxo
Hi again Suzanne. I was offered a double mastectomy instead I opted not to and I have mammograms annually.
Hi Katmal, I am awaiting the meeting to decide on this. Could I possibly ask how you decided? I don't know how to make the right decision and am not sure if I want to be going through surgery again. Thank you xx
Hi Suzanne-
Only about 10-15 percent of people have a genetic form of cancer from all the genetic defects they know of. I was tested and was negative for all. My mother died of breast cancer years ago, and I have all sorts of cancer on both sides of my family.
With that being said some of the newer cancer drugs work the best for BRAC positive patients. Women that don't have this mutation, the drug does not work that well. So there is hope. We are all so different and respond differently to the same chemo drug. So much more iso n the horizon for all of us.
Try not to worry-it is what it is and worry will not change things.
Xx Carol
Hi Carol and thank you for your reply.
I was concerned as to what to expect etc but it is what it is. If I have it then I'll deal with it and llike you say, there are positives to having it I guess.
If I've not got it then that's good too. Will just see what happens. 👍🏻👍🏻Xxxx
Hi Suzanne - I was tested for BRCA despite having no family history of ovarian/breast cancer as I believe there was additional funding in Scotland, where I am, for building a database of patients for genetic research generally. My results were initially BRCA1 positive, and I was really surprised (and v worried about the impact on my sister and children of this news). I was also offered prophylactic double mastectomy after my OC treatment was complete however, like Katmal above, I decided not to go ahead as I'm in my 50's so my breast cancer risk is much lower.
I am SO pleased I decided this, as in Sept 2015 I received a letter from the genetics team explaining that my mutation had been re-assessed and I was now no longer classified as BRCA - but VUS (a variant of unknown significance). This new database is now classifying many patients results showing mutations - but not necessarily cancer-related - they just don't know what the risk is yet. The way I look at it is that my mutation might actually work in my favour - against some cancer cells! And my oncologist is going to look at my participation in a trial which is linked to BRCA in any case.
Finally, I understand the confusion about "genetic counselling". I too expected that this would be related to emotional support etc however it's a real misnomer. It's much more about explaining what to expect from the process, the risks and how to read any results. Not a good job description for us non-medical peeps at all.
So all in all BRCA is both good and bad - and even the experts are still learning with us.
Hi and thank you for your reply. I read it with interest. It's amazing really what they can discover about us. You being reassessed and having a mutation which could possibly work in your favour. Science is amazing really.
It was a very informative reply. Thank you for that. I'm learning new things all the time. 👍🏻👍🏻👍🏻Xxxx
As others have said, knowing if you're positive will help other blood members of your family to either get themselves tested or monitor themselves closely. It will also likely open up certain drugs / trials which work particularly well with these type of gene faults in the future.
Hi.
Yes it is best to know and if it's positive , like you say they can use. Certain treatments for that reason.
Hope everything is ok with you. Xx
Hi Suzanne. I was offered the BRCA test, even tho I'm not at risk. I took it gladly. The more they know about you, the easier it will be to treat you. As has been said above, when you know, it opens up new options for target drugs. I was told there was a slight mutation but apparently most women show some minor mutation. Probably they have no idea as yet what it all means.
Gene testing is where it's all going. We're all different. As we see every day on this site, we all have different reactions to the same drugs. In the not-too-distant future, we'll probably all receive slightly different treatment, based on our personal genes. I used to worry about my daughter but now I think that by the time she's likely to show any OC symptoms, things will be totally different from now.
I know someone who's had OC and BC and has been free of cancer for > 25 years. She has the BRCA gene. My understanding is that if you have the BRCA gene, you're more likely to get OC/BC but also more likely to survive them. Good luck. Pauline
Hi Pauline and thank you for your reply.
It's all very interesting isn't it. We are all so different. Imagine what medical science will be like in a hundred years from now?
I hope all is good with you. Xxx
Hi Suzanne,
I had the test around my diagnosis and I tested positive. Even though it was more bad news in a sense, an oncologist in Lobpndon said to look at the gene 'as my friend' for now. If you test positive for the gene, you will most likely be far more sensitive and responsive to chemo treatment. The biggest plus. I am not sure about a satin so you may need to ask your onc.
You might be worrying too early and you might be negative too remember.
IF you are positive, then they will monitor you more closely. And be offered different treatment options to help you.
I hope that helps and good luck xx
Thank you for your reply Nicky.
I'm not too worried now about the test. Not for myself. I guess im concerned for family members but if they have it then knowing will be a benefit. Not knowing isn't going to change things.
It is what it is and the more we know about ourselves the better.
I hope everything is good with you.
Xxx
Hi Suzanne, I am doing OK thank you. Please try not to worry about the test. It is an area of treatment they are researching all the time and if they have the information available, your family can have regular checks and scans and they will be more vigilant to it xx
Hi Suzanne, really interesting to read everyone's thoughts and experiences on gene testing and your questions too.
Mine was a long process. It was 10 years after my 1st cancer diagnosis before I took a genetic test. I eventually had the test last year. It took 10 weeks for the results. These are complex mathematical programmes.
I discovered I had both brca 1 and brca 2 abnormalities. This was a shock even though I knew I had a genetic problem. Counselling is offered. In my case there has been no recommendation for a mastectomy but I am on an annual mammogram and MRI. It's a watch and wait programme. So please don't assume that if you are brca then a mastectomy is the only option. Proper screening programmes are very important.
As other ladies have said, being brca positive also opens up different chemo drugs if there is a relapse.
So my reason for finally doing the gene test was for the Drs to know what drugs could be available if my ovarian cancer returns.
Genetic stuff is heavy as I have 2 young children. But these gene problems do not cause childhood cancers and so my kids will have the option to be tested in their 20s and I hope and pray there will be great medical advances regarding immunotherapy in particular.
I hope you come to a decision that you feel comfortable with.
Hugs, T. X
Hi Suzanne,
I went for genetic testing in early December and found it most interesting. The lady explained that searching for the faulty gene is like looking for one misprint in a Yellow Pages telephone directory and that is why the results take 10 weeks to complete!! What an incredible thought!
She said that if I am positive that will mean other treatments are available to treat any future recurrence, which is obviously an advantage. On the other hand, if I was positive there would be implications for my siblings, nephews and nieces, but as others have said in this discussion, knowledge is power. I was also interested to hear that some forms of pancreatic cancer can be due to BRCA faulty gene, as my little brother died from that 2 years before I was diagnosed with OC.
Hope what we have all said will reassure you about having the test and that you will take it in your stride.
All the best for when you have it,
Barbara
Glomerular Filtration Rate (GRF) test
CA 125 blood test.
Ca125 test results 
My test results
