BRCA test

[Mindysooty]

Hi all, I had to go to a review meeting for my autistic daughter the other day, she's more or less non verbal and lacks capacity so I'm her appointee and her voice. When everyone was diagnosed, were you automatically tested for the BRCA gene? I know it might sound daft but I'm really not sure if I've been tested. I've sort of assumed I would have been told if I had it, is that right or do I need to request a specific test. My daughter is 26 now and I have to look into all sort of things for her that horrify me - smear testing, life insurance, and because of my BC history, the question of whether I have that gene has been raised. Thanks . Josie xx

[Hidden]

I was not tested. I think it is a specific type of test. I was told that breast cancer is random and that I do not need to have anyone in my family that had breast cancer to get it. I do not know anything about my biological family medical history so I put not applicable when it asked on some form in the beginning of my journey if I had any close relatives that had breast cancer.

Of course, since I never married nor had children so I never bought my own life insurance. It always came with every job I had. Now, that I am have stage iv and no family, I have asked a friend in FL if she would be willing to handle everything when that times comes. I had the cancer center attorney do a power of attorney, health care proxy, Last Will and Testament.

It is important to me that my friend and her husband who live in FL (they have no kids) not have to spend a penny of their own money. I have just a few thousand in the bank that I feel I cannot touch bc I need it for them.

I have looked into guaranteed life insurance. It would cost me $50.00 a month to get $10,000 worth of coverage, Gerber Life insurance (GUARANTEED, so they will not turn you down regardless of your medical history.) The thing is that you have to live at least TWO years from the date your start paying the $50.00 a month for your beneficiary for you to be able to get the full $10,000. If I should pass before the two years are up, my beneficiary would only get the money I put in at that time.

I even made her Payable up on Death for my checking account so that she would be able go to even a Chase Bank in FL and show an original death certificate for me and id proof for herself and she would be able to take out the money that is left in my checking immediately.

I tried to get these things as soon as I could bc I knew I had no body to automatically take care of these things. My other friends that live in NY or other areas of New York, have children, grandkids, full-time jobs and I know it would be too much to ask of them. My friend and her husband do not have children and are not wealthy at all so I need to make sure I leave them enough to take care of things.

It is unpleasant. Thanks for reminding me. I keep putting off enrolling in the life insurance but I should just do it now. I feel for you. It's hard enough worrying about myself and you have the added stress of making sure your daughter is taken care of.

[Mindysooty in reply to Hidden]

We all have different struggles dont we. im sure you'll make that 2 years plus many more. The life insurance I mentioned was actually for her on her life. Its not something we usually have to think of for our kids but as Amy doesnt have capacity I have to think of it all.

Re the BRCA Im at hospital next week so Ill see if they can advise too.

Thanks for your response. x josie x

[Hidden]

Hi Josie,

I was not tested for the BRCA gene when I was diagnosed. But I went for genomic testing last month and I believe that may be one of the mutations that might show up. I am not sure though, but it can check for a number of mutations. I would raise this with your oncologist and mention how you want to know in case your breast cancer is hereditary. I have found that unless I bring something up a lot of things are hidden from me.

I can also understand your concerns with smear testing and other tests for your daughter. She will probably find it very traumatic, as she won't understand why she is having such an invasive test and I doubt whether the doctor or nurse would be able to get a sample without causing her distress. Can you ask about giving her a mild sedative prior to the smear test so that she can relax? It's important she has the test done just to keep an eye on her health, so I would go ahead with it, but just plan ahead so that you can get it done without causing any problems.

My middle brother won't even let a needle anywhere near him for a blood test. The last time I took him to the health clinic the phlebotomist was patient with him, but he burst into tears and she refused to take a blood sample with him in such a state.

Sophie

[Mindysooty in reply to Hidden]

Hi Sophie, I hope you're doing ok. Thanks for the advice. I'm at hospital on Thursday so Ill ask about it then.

Re the smear, i said no for this time until Ive done my research. Its reviewed annually so can revisit next time. Shes not in the high risk group as shes not sexually active and she'd have to have general anaesthetic to have it done, even ordinary sedation doesnt work (long story short once had to have GA for an xray). We had to have a best interest meeting with social services and I was being pushed to say no but I told them, every other young lady is pushed to have it so I dont want to dismiss it out of hand until I know more. As ever, have to weigh up the balance.

Take care. Josie x

[Hidden in reply to Mindysooty]

Morning Josie,

I'm doing well thanks! Let me know what your doctor says on Thursday. Hopefully you can be tested for the BRCA gene to give you peace of mind.

I don't know about you, but those 'best interest meetings' with social services can be annoying. You know your daughter (and in my case, my two brothers) best and are the one who really wants the best for her. I had to attend a 'deprivation of liberty' meeting sometime ago for my middle brother to justify why he had to be confined to his day centre at tines. I thought it would be obvious that if he was allowed off the premises unsupervised that he could be run over by a car or be vulnerable to harm or attack. But they have to spell everything out these days! I know social services have a job to do, but sometimes I am left shaking my head in disbelief at the way they operate.

Sophie ❤

[Mindysooty in reply to Hidden]

Oh no the dreaded DOLs assessments. What a waste of time and money. I do think for some its useful but not for the likes of Amy and your brother. Whatever happened to common sense eh.

Ill let you know about Thursdays outcome. Take care. X josie x

[Hidden in reply to Mindysooty]

Hi Josie,

Yes, I agree! I do think common sense has gone out the window in the care industry. There is a high turnover of staff at my brother's day centre and I am often having to remind them about things. It can be frustrating having to spell things out to them.

I wish you well for Thursday.

Sophie ❤

[Jonesburger]

Hi Josie,

I was not automatically tested for the BRCA gene but I did have it done.

When I was first diagnosed with Breast Cancer (Stage 2) in 2017, my oncologist recommended I get the BRCA test done. I agreed to do it not only to help my onc have as much info as she can about me, but I also wanted to know if there was a chance I would pass this on to my daughter who was 17 years old at that time or even my son (14 years).

Before the BRCA test could be done, I had to meet with a genetic counselor who went over the questionnaire that I had to fill out. There were a lot of questions dealing with medical history of my family (i.e. did you have any relatives that had cancer, if so, what type..what is their relation to you, when were they diagnosed etc.).

I had to call around my relatives to piece together the info so it took me about a week before I was able to fill out the questionnaire and meet with the genetic counselor again. She went over them with me and then submitted the forms to my insurance for approval. It was about a week before we got word that the insurance approved me for the BRCA testing (apparently its an extremely expensive test) and another two weeks or so before we got the results back. I went back to the genetic counselor so she could go over the results in detail. Much to my relief, the tests proved negative.

[Mindysooty in reply to Jonesburger]

Thankyou so much for the information. it really helps. Thank god for you and your daughter you tested negative. Best wishes x

[klhowe]

19 months ago when I was Diagnosed with MBC they had me consult with a genetic counselor. We ran the test, just a blood draw. I did not have BRCA, but I do have PIK3CA mutation. 19 months ago that didn't mean much, but now I would be able to take Piqray after the Ibrance fails.

[Mindysooty]

Hi Sandra, oh your poor niece. Thankyou for the link, Ill take a look when I finish work today.

I've not been very active on here for a while, just been so blooming busy with work and life. Only 4 weeks until my first grandchild should be here so also been busy looking after daughter numero uno . Very exciting times. I hope you're feeling better now, last time I was on you were having a rough time. You take good care of yourself. X

[PJBinMI]

I wasn't tested for the BRCA mutation when I was diagnosed in 2004 (mets from the get go) as there isn't a family history of breast cancer. I did talk with a genetics counselor at the cancer center, though, at the suggestion of my onc because she thought my family might carry something called Lynch Syndrome that does predispose people to colon cancer and some other cancers, since several relatives have had colon cancer. But the counselor said that I wasn't likely to have it with so few people actually had it. Testing has become alot more involved since I was first diagnosed, more mutations are known and can be identified but they are more likely to show that treatments won't work than that they will.

[Mindysooty in reply to PJBinMI]

Thats what Im scared of with the genetic tests ie finding out what wont work. If i saw my treatment options were limited, i fear I might get disheartened. Thanks for responding x

[Hidden]

Hi Josie

I have looked online at the nhs website.

You can request the test through the Gp, but in your case, best to go through a Oncologist. It does involve the genetic counselling and questioning. The bloods from you take 6-8 weeks to come back.

From what I can gather your daughter will then need to go through counselling to prepare her. This is where you meet another hurdle for your youngest daughter, because she wouldn’t be able to participate.

As I say, this is what I found on the website, so it could be a different process in reality.

Clare xx

[Mindysooty in reply to Hidden]

Ah bless you fir researching. Yes youre absolutely right about Amy, she definitely isnt able to participate in anything like that. Ill ask on zthursday about it. Cheers me dears x

[Lordmandy]

I’ve been tested twice. Once early on and again last fall due to more specific test methods. Your doctor or medical facility should Have records if you’ve been tested.

[Mindysooty in reply to Lordmandy]

Thankyou. X

[mariootsi]

Because of my family history, I had the BRCA testing during my first dx.

[Mindysooty in reply to mariootsi]

I have one Aunt who had MBC.on paternal side. Im at hosp thursday so I will see what they say too. Thanks. Josie

[mariootsi in reply to Mindysooty]

You are welcome.

[diamags]

I was not tested when I was diagnosed. According to the National Institutes of Health, only 3-5% of Breast Cancer cases show the BRCA gene mutation. For those carrying the gene, the chances are higher of developing it than is for those without. I was later tested for over 100 gene mutations that would lead to cancer or heart disease as part of a clinical trial, and I tested negative for all of them. So genetic testing does not tell you everything you need to know.

ncbi.nlm.nih.gov/pmc/articl...

[Mindysooty in reply to diamags]

Thanks for your response. ill take a look at the link . Best wishes

[Julie2233]

I was tested, but the oncology nurse had to request it and it was done through a different hospital (Birmingham). If you are in the U.K. You are supposed to receive genetic counselling before the test is done, you will also be asked to provide a family tree with details of close relatives who have had a cancer diagnosis.

They test for other genes associated with cancer as well as BRACA and they explain they they still haven't identified all the genes involved, and even if you carry the ones identified it doesn't mean you will have a cancer diagnosis.

My test came back negative, but one of my aunts had braca and so did one of my cousins. My mother was one of 10 siblings and she is the only one without a cancer diagnosis. I have 36 cousins on my mother's side and I am the only one with a diagnosis.

[Mindysooty in reply to Julie2233]

Thanks julie. Interesting stats. X

[Staysha]

I was not tested so I asked for it. I had to have genetic counseling to determine if I needed testing. Since I was right at 50 when diagnosed and few relatives with other cancers I qualified. My insurance paid all but $100. Thank goodness it came back negative. I have 2 daughters 24 and 18.

Hope this helps.

😀Stacy

[Mindysooty in reply to Staysha]

Thanks for your response. Im in uk so would be on NHS. General theme seems to be you need to request it and have the counselling. Im there thursday so Ill ask . Best wishes. Josie x