I was on my way to my 3 month check this morning and the Genetics counsellor rang to say they could not identify any mutations in my BRCA genes!!! There really is no appropriate word to describe the relief! Thank you all for your responses to my earlier post I didn't think I was as anxious as I was to be honest and your words of wisdom were a tremendous help as always!
Hope you all have a great day! I am just about to go in for my 3 month check now! It's turning out to be an eventful day and it's not 11am yet!!!!
Onwards and Upwards!!
Dx
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HogwartsDK
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Good news on your brac result D. Hope your checkup goes well today . Jenny x
Today was a good day for me! Chemo doc says there is no need for him to see me any more! I was alternating between him and the Gynae Onc so now it will be Gynae Onc every six months! Med Onc said no problem if I need to see him just give him a call but no routine apts! That along with Genetic results makes for a good day in my books!
Can I ask ,if you have to ask to have the BRCA test? As far as I know, I've been diagnosed as having Ovarian cancer stage 3c.. I've not asked about any testing at all, do the oncologists do this as a matter of routine?
I asked my GP who gave me the forms, then I changed my mind. My new oncologist asked me to have testing as it opens the door for other treatments if needed. He has some research funding and I thought why not. You can ask if you are not offered.
I was offered the test as both myself and my sis were diagnosed in our 40s within a short time of each other! Her with BC and me with OC! That rang genetic alarms bells but we were both negative for BRCA so not that gene! Probably another that they don't know about yet but I am happy all the same!
I am in Ireland and they don't do the genetic testing here unless there is strong family connection it's very expensive! It can be done privately if someone refers you! Not sure what the story is in UK or US!
It's not about the stage of your cancer. It's about family history. In the UK you do have to highlight that you may be eligible for the test with your doctor. They'll look for blood family history of OC or BC. If there is only you in the family that has OC or BC it's very unlikely you'll qualify for the test. Most people don't have the BRCA genes.
I have a strong maternal family history of BC and I had OC at a young stage so there was no real question as to whether I qualified for the test. In fact they were quite keen to do it. However, I tested negative despite the strong family history.
I did agree for my records to be available for research purposes as they are looking to identify other risk factors for OC. I have absolutely none of the known risk factors ('too young', healthy weight, never smoked, etc) so apparently my records were considered to be useful for looking for other risk factors.
You can ask the question, but it's a minority of people who will be tested.
Trying to catch up on posts without wanting to scream as Sky for my intermittent internet, for which they want £35 for an engineer to visit, which I think is scandalous lol.
This is great news, maybe we can start a trend for BRCA free.
I am just relieved that today I am not faced with a decision that could involve a double mastectomy due to a significantly increased risk of Breast Cancer. That's my relief for today I try not to focus too much on tomorrow! I will still be very vigilant with regard to BC as my sister had it and I will be monitored!
I am so sorry that you had to experience them both!
Hi Muriel, I am also waiting for the results of my BRCA test, and personally the relief of getting a negative result would be in knowing that I would not have to worry about passing the gene onto my two daughters, two sons and seven grandchildren, apart from the implications for my brother and sister.
Medical team immediately went BRCA ALERT and sent me for counselling pre blood test.
My point is the result would serve as an explanation only. As someone has said all it means is hat a responsible gene has been identified and as the genetic counsellor explained there are something in excess of 20,000 genes waiting to be identified and this determines propensity for cancer above environmental factors.
I get the impact on family but can't see result either way being more otinistic than another.
I understand what you are saying. I tested negative, but now officially have none of the risk factors. So I'm left wondering why my family have a high occurrence of BC and why I got OC at an early age. But I try not to worry too much about it and have agreed that my records can be used for future research to identify other possible risks or genes for OC.
My understanding is that even though I tested negative, my blood relatives can still request the test on the basis of family history and can also factor my results in. I was also told that my sister can now access breast scans earlier because of family history, the idea being that just because I was negative the BRCA gene could still be in the family.
My partner was tested for a different genetic condition and he tested positive. So I am in the position of having been through both a negative and a positive genetic test result.
His dad was crushed when he found out. My partner's dad knows the logic that it's not his fault and his own dad passed the gene onto him. But it's not a logical response. It's emotional. I think parents are hardwired to protect their children, so the idea that they have passed on something that will cause disease is very upsetting. Even though they know they couldn't have done anything about it themselves.
I think people take the results of the test in their own way. Some will see things as good and some bad. I actually see it similarly to you, that it's just one tiny piece of a huge puzzle, some of which we'll probably never really know. Even if I'd tested positive for the BRCA gene I don't think it would have entirely given me answers. Why did the gene trigger in me and not my older siblings?, etc etc.
I think some people take comfort from the negative test that they're not passing that gene onto their kids. From experience, it's an incredibly powerful reason to be happy about the negative result. I wouldn't take that away from parents after seeing what the positive result has done to a parent. Even a parent who is logical enough to know that it's not their fault.
What was made clear to me by the genetic counsellor is how huge that puzzle actually is, which is why we should all be kinder to ourselves about levels of responsibility.
It appears that for cancer that is true. Having the cancer gene increases likelihood, but is not a certainty.
In my partner's case it's not a cancer related disease that is in his family. It's actually one of the incredibly rare diseases where it is known that the presence of the gene will certainly lead to disease. In such cases it is very clear in the counselling that this certainty is the case and I was told that the level of counselling for that particular disease is much higher for this reason.
We had already been through that counselling. So when I went for the BRCA counselling I saw the same person. I was just saying to her do I really have to go through all that counselling again, when she said actually the process is a lot shorter because it's not the same impact. For the BRCA gene it's indicative. So the level of counselling is not the same.
I think having this understanding means that I was more relaxed about the BRCA result and what it would mean. I could see the distinction between a gene with a known and certain role in disease compared to the BRCA gene which is one aspect alongside other aspects. Whilst I think the genetics team do explain this I think it's having that wider experience that means that I haven't felt as worried about the BRCA test.
I think I was in a very unusual situation. Not many people go through genetics testing. So very few people must go through it twice for completely different reasons. Then even less must have two completely different situations where the role of the gene in the disease has very different connotations.
I actually only know of this one disease where the link to the gene is so certain. I'm not aware of any other diseases where the link is expressly stated so clearly. I'm sure there will be others.
But with this increasing focus on the health of our genes I think it really needs to be made a lot more clear that generally the presence of a gene is not the be all and end all. Perhaps that would help to alleviate this guilt that parents feel if they test positive. Though as I said previously, I think this is an emotional response that is hardwired to a parent's protection of their child. So I think it's something that everyone has to resolve for themselves and then come to understand that there is no fault for the genes you carry.
I worry deeply about the increasing emphasis on companies who encourage people to purchase a breakdown of their genetic profile.
Social media campaigns suggesting that we could remove racism if we all understood that we have so many shared genes are dangerous. They suggest that having a genetic test is an easy process and it's all great because it will tell you so much more about yourself and your connection to the world.
What they don't say is that they'll test for the genes known to potentially have some link to particular diseases. And that these tests are potentially not that useful to a lot of people.
Let's be honest, if you test genes enough, we'll all have a link somewhere to a known disease. Chances are in most cases people will live to an 'expected' age despite the genes. So this movement to try to normalise genetic testing for all is very suspicious to me.
I can see some benefits to it, but I think it's in a minority of cases.
The waiting time is supposed to be 6 months and for my sis it was 6 months but I was lucky and got a cancellation after about 5 so we ended up getting our results only a few weeks apart (the results took 3 months) I would give them a ring as May is more than 6 months! No harm in ringing. You cannot get them directly you have to leave a voicemail but they will get back to you fairly quickly!
Hope you are well and hope to see you on the 21st!
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