My family's test results - and my mixed feelings

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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Re: My family's test results - and my mixed feelings

Postby liv » Sun Oct 28, 2012 10:04 pm


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Re: My family's test results - and my mixed feelings

Postby Blizz » Sun Oct 28, 2012 8:58 pm

Jezza,

with BRCA1, male carriers are not at a higher risk for breast- or other cancers. With BRCA2 they are, I think there is a higher instance of prostate and colon (?) cancer.

So as BRCA1 carrier, my brother is not at a higher risk personally but can obviously pass it on to his kids.

The reason I was referred for testing is because of my pathology: triple neg tumours in both breasts at the same time is really unusual and combined with my age at the time (34) this apparently makes me the poster child for a BRCA1 mutation. It was the first thing both my surgeon and onc said and they were right.

Ruth :hugs: so hard on you and your daughter. I have often thought it was a good thing my kids were so young while I was going through treatment, I think it is much harder for teenagers :hugs:

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Re: My family's test results - and my mixed feelings

Postby ruth1 » Sun Oct 28, 2012 5:35 pm

Its a vexing question - even my daughter at 14 was seeing a boy locally - he exited very fast after she told him I had Ca. Then another boy took her to a movie and they got on really well til she told him and next day he announced on Facebk that he had a girlfriend. I was newly diagnosed then so it was still at the shock stage for my child. I dont think thse boys acted badly because its a big deal at any age lt alone at 14 and wondering how to support someone through a scary illness. Brings up the future cos if she carries the gene does that mean she has to divulge results to any future partner/husband - probably yes. Couldnt blame a person for not wanting to buy into that situation and have kids. I have fears for all of this.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: My family's test results - and my mixed feelings

Postby jezza » Sun Oct 28, 2012 4:45 pm

I must admit I don't know a lot about the testing. I know some on here have had it and one whose daughter tested positive for the gene. Thats Samantha37. I'm sure she wouldn't mind me naming her as she has posted about it all on the forum and was featured on Channel 7s Sunday Night some time ago with her gorgeous daughter talking about the decisions that they would have to make.

I can understand how unsettling it is for the whole family. One question....is your brother at higher risk of getting breast cancer or just of passing the gene on?

Actually 2 questions! If there wasn't much family history how come you were tested?

It is fantastic to be able to find out about the gene but also terrifying I know. I guess I am interested in all this as I have a biological son. My mum also had breast cancer and was diagnosed at 73. Thats why I had a prophylactic mastectomy.

I'm sure your thoughts are not at all unusual btw. Probably not many people voice them but I'm sure many of us have had similar thoughts! As for the IVF pre testing.... thats hard. I think its expensive and IVF is a very invasive procedure but you can understand that they have seen what you've gone through...I honestly don't know what I'd do in their position.

Hugs...
jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: My family's test results - and my mixed feelings

Postby ruth1 » Sun Oct 28, 2012 4:20 pm

Liv, I mentioned my 14 yr old daughter in my post to Blizz. Think you read that cos your post to Blizz was next after me. Thats where I think you got the daughter testing prob from cos I said I am really worried re my child and genetic testing. R
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

liv
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Re: My family's test results - and my mixed feelings

Postby liv » Sun Oct 28, 2012 2:54 pm

Last edited by liv on Sun Oct 28, 2012 10:48 pm, edited 1 time in total.

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Re: My family's test results - and my mixed feelings

Postby Blizz » Sun Oct 28, 2012 2:12 pm

Thanks everyone :hugs:

Venting can be so useful, if only to get your own thoughts clear.

Am a lot more rational about it now. I guess I would eventually like my mum to acknowledge that I got the raw end of the deal but I fully understand it will take time for her to see it and for now she has herself to worry about.
Knowledge is power and yes, I probably do look at this very differently having had the experience first hand.

Let is also be clear I actually still consider myself one of the lucky ones, as I found it early and had fast, aggressive treatment.

I spoke to my mum last night after she met with the plastic surgeon. He recommends bilat mast with a TRAM recon, approximately 11 hours of surgery and that is a huge thing to go through.
I am glad she is going ahead with it, she was initially saying no recon but she is a very feminine woman and loves wearing low tops etc - she'd struggle more than I did without breasts I think. The surgeon agreed to skinsparing, but thinks the nipples need to go, too high risk.


Liv, all good, I am not an eggshells kind of girl and value an honest opinion. :) And you are right, it is her life, her choice.
Trust me, I am far from perfect and she loves me all the same and it's no different the other way around. :heart:

As for my little girl, she is only 4 and to be honest I am not overly concerned for her right now. By the time she is in her mid-late teens and this becomes relevant, science will have come a long way. We'll deal with it then.
We haven't kept any secrets from the kids the whole way through (although we have naturally been selective about what and how much we share) so I imagine they will grow up knowing about my BRCA1 mutation just because it is discussed every now and then. And then when they are old enough to start understanding the possible implications for them, we'll educate them.
It will be their own choice whether they'd want to get tested or not.

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Re: My family's test results - and my mixed feelings

Postby schoolteacher » Sun Oct 28, 2012 1:36 pm

:hugs: Blizz. Rest assured you are not a b€#¥ch! You are looking at the situation from a position of knowledge and experience. Mum has not had to face treatment and he "reality" of cancer as you have. Her head most likely hadn't properly processed the news, and she still wants to live in blissful ignorance. Knowldege is power to some but others prefer o kep their Head in the sand. It may take her time to accept and truly understand. Hopefully reality will not jump up and hit her inthe face anytime soon.
It's a difficult situation for all of you :hugs:

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Re: My family's test results - and my mixed feelings

Postby Lucy the Lump » Sun Oct 28, 2012 11:34 am

Hi Blizz - I totally 'get' your line of thinking. There is no need to feel bad. I am 63 and would not wish to be in your mum's shoes either. When I was Dx it felt very surreal to me. Even when the Drs & cancer nurse talked to me 'about' me it still felt as if they were talking about someone/anyone else. The enlightening was a bit like like being whacked in the moosh with a dead fish. Shock horror? I really had to accept that this was happening to me and that if I did not own it then it would cause my total demise. I called the tumour Lucy the Lump and decided that since she came to live in me & wasn't a friendly companion she had to go. I really needed to shake myself into sensibility to get a real grip on the situation, so that I could get into acceptance & fighting mode. It was so strange to me that as I had never had any illness & was cruising along in a pretty happy space, that I could now actually have something going on in my body that would kill me if I didn't get rid of it. And I have a 40 year old daughter & 2 grand daughters that I worry about even without the Braca gene.
I imagine your mum is in a similar place as me at the start & may have the added guilt about being a carrier of this crappy gene. I hope - like you that she chooses to take the path to avoid the things we have had to bear. But she will do what she will do and my heart goes out to all of you at this time.
Blizz take care. Many big :hugs: :hugs: to you.
Lucy
Dx at 62 (March 2012). L Mastectomy (9/5/2012) Grade 3 IDC. 60mm. 5 of 19 Lymph nodes with mets. ER Pos (weak), PR Neg, HER2 Neg,
4 rounds of TC chemo (completed 17/8/12) - 25 rads (Completed 17/10/12) + Arimidex 10Nov12

Brain Mets 22Mar13. Neurosurgery 28Mar13. Rads start 24Apr13.

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Re: My family's test results - and my mixed feelings

Postby liv » Sat Oct 27, 2012 11:14 pm

blizz :hugs:

aww im worried that i may have seemed in response to yr post a bit
..and sorry if it came across like that.

all i know its a long time dead and the last thing you want to do is have any regrets that you and yr mother didnt see eye to eye on on this and that could affect your relationship. its not worth it, just love her with all her faults...geez i wonder how my mother loves me so much with all my faults.

and reflecting on your daughter thats really hard and i think the only way is education, but with young people that just cant imagine it would ever happen to them.'

what i did with my niece was tell her how much i loved her and the only reason im going on about this is its reality and im prob more than likely the proof. she didnt want to enter into any discussion of how to lessen her risk so i asked her to just read this forum and google Brca to see for herself that she was in a very high risk..she did this and now is going to get the test done and then she can make an informative decision.

sorry you have all this to deal with :rose:

liv
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Re: My family's test results - and my mixed feelings

Postby liv » Sat Oct 27, 2012 4:39 pm

blizz :hugs:

feel your frustration. :hugs:

but imho everyone of us is different & thank gawd we are and how we react to adversity is individual and its subjective.

completely understand that you might feel that you have had to go through all of this but maybe your mother now at this point in her life is at peace within herself and its her choice to do what she chooses to do, that being smoking drinking, its her life, her choice and lets face it, many people have lived to a ripe old age doing all of these things, like my grandad, smoked 80 cigs a day, was a huge drinker in his day and lived into his 80's.

with your daughter all i would recommend is that you just ask her to do just one thing for you because you love her so much and then its up to her, her choice, ask her to read these forums and to google brca to have a look at the risk within families that carry this gene.

each to their own.

...and i know blizz its hard for you with these feelings :heart:

x

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Re: My family's test results - and my mixed feelings

Postby Janette » Sat Oct 27, 2012 3:57 pm

Blizz,
Knowledge is power, you may have saved their lives. No guilt trip! :hugs:
Janette


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Re: My family's test results - and my mixed feelings

Postby ruth1 » Sat Oct 27, 2012 3:25 pm

Blizz, dont beat yourself up over this - you are not being a b@#ch. Even though you love your Mum she is human and not beyond making bad choices and having a bit of a selfish attitude. If she is still smoking and drinking at 60 (my age) she is damn lucky she hasnt got it already. I would be thinking the same Blizz. She might be in a state of shock and sometimes that makes people think of self first and only. She should be saying how lucky am I to have the chance to avoid this now and not have to do chemo which I think is one of the hardest things on earth!!! And not only that but to be able to avoid the constant worry of secondaries developing. Would your sister be able to point all this out to her gently but so she can get a grip on the realities here. Also, seeing as Mum is positive its prob come from her side not that it changes anything. As for your brother - thank god we live in the age we do so testing can be done. I have my 14 yr old and testing has to be done soon. My Mum died of it and now me so future for her could be dire. This disease is just the pits with all the problems that come with it. Good luck but dont feel bad. R
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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My family's test results - and my mixed feelings

Postby Blizz » Sat Oct 27, 2012 2:26 pm

After I tested positive to a BRCA1 mutation last year, my family (mum, brother, sister) all got tested in August. The results came back the other day.
We weren't sure whether the mutation came from my Mum's or my Dad's side as there isn't much of a family history of BC/OC and I was actually hoping it would have started with me (rare, but possible).

Unfortunately both my brother and my Mum tested positive also.
My sister didn't and I am very relieved for her - I really wouldn't want her to have to face and make the tough decisions at 34.

Heartbreaking though to see the implications for my brother and my Mum.
My brother wants to start a family and his partner is now not sure whether she can handle the 'guilt' of potentially passing on the mutation. They are considering IVF / pre-testing. I really feel for them, such a hard road to go on.
At the same time, I have some issues with the pre-testing - to me it feels like they are saying my life is not worth living, and it so is...

Then my Mum. She didn't want to get tested initially and is finding it really hard to come to terms with the recommendations given to her by her medical team (prophylactic mastectomies/immediate recon and prophylactic oophorectomies).

Now: very honest bad daughter thoughts following here....
Even though I do understand she is devastated about losing her breasts and the prospect of 2 tough surgeries I have to really bite my tongue to not remind her that she has the wonderful chance to prevent cancer actually happening to her. She will not have to worry about recurrence the way I do, or go through chemo the way I did. I would have loved to have known about being a BRCA1 carrier prior to actually getting cancer...

Plus she was extremely lucky to make it to 60 with a BRCA1 mutation and not actually getting cancer, especially because she is a smoker, a fairly heavy drinker and not real big on exercise.
I love my Mum to bits, I really do, and of course I am really glad she hasn't had cancer.
I haven't said any of this to her, but I can't help feeling a little hard done by....

DH thinks I am a b*tch to even think these things let alone say them out loud. Maybe I am, I am certainly not proud of these thoughts.
But are they so unusual?


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