So stressed Triple neg 5cm need positive stories
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Hey! YES I had testing done, my Surgeon referred me to Familial Cancer Centre at the Royal Melbourne Hospital. It cost me $800 and was not rebateable grrr. They keep changing the criteria so am unsure what it is now if you qualify for it through Medicare. I only had my Mum who had BC when she was 40 survived 26yrs and they say died to unrelated Cancer. No other history in the family. My Surgeon urged for it eventhough I was only ER+ because I had a recurrence within 4yrs and was heading for a Mastectomy, so he wanted to be sure. It came back negative and the Geneticists agree that a double was unnecessary that in light of the recurrence a single was advisable. Having done it 2 weeks ago pathology came back and the breast tissue was all clear. So Clear going into 2 yrs now. It doesnt matter where you go, if you fit the criteria it will cost you nothing, if you don't it has dropped I think to about $600 right now. Hugs Melinda xo0
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A positive gene mutation doesnt guarantee what type of breast cancer you get (or that you will even get it for sure) I know younger women with tnbc often do carry the gene but not all. The appointment will assess risks etc. And determine if you qualify. Do you have daughters that may inherit? It's easier to start with you as the 1st to be tested. Neg ...it stops with you.0
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I was 52 when diagnosed with TNBC, I'm looking at testing around $6000
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Tripple QLD said:So stressed out. Just diagnosed with nearly 5cm triple neg idc at 33yo, no children yet, with very likely node involvement (not enough cells for conclusive but looks very likely in an enlarged node underarm) but all other scans and tests show no other cancer. I need to hear from others with same type and relative size and years beyond to have a positive outlook. Can't sleep, can't eat after seeing surgeon today - mastectomy surgery within next 2 weeks and auxiliary clearance then chemo and radiation. I am just so stressed about weather I bother saving my eggs as I read the outlook isn't that good for large triple neg but all I've ever wanted is children but no point if I won't be around. please I need to hear from others who have positive stories even ones with reoccurrence of large triple neg idc. Thank you.0
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Hang in there sweetheart.... I'm 5 years on, and was where your head is now. I had DCIS4 ( terminal at one point ) and a triple neg... I fought that war, I punched it fair in the fucking face!! Get angry!! Get really angry with it!!! Cry, scream, swear!!! Then get on with letting the drugs do their thing. Tell it " I AM NOT READY TO DIE! I HAVE TOO MUCH LIVING TO DO! SO FUCK OFF!!!" .... Prepare yourself for anything and everything!! The drugs will make you sicker than you've ever been, and I was sick and tired of being told "be strong, be positive" I was positive, I was positive I had cancer and was going to die!! But I didn't !! AND neither will you my lovely!!!
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hi there
I was diagnosed in may last year with 3cm triple neg. no lymph node involvement and scans clear. had a mastectomy to the Left affected side then in November had the other one off as a prophylaxis. No family history had the gene test funded as I was aged 43 at the time of diagnosis. Hang in there you will get there I punched it too in the f**ing face and so far so good. happy for you to message me if you ever want to chat. Margie2 -
Hi @onemargie do you know what age is the cutoff for gene test?
I was 47 when first diagnosed triple neg.
Paula x0 -
My friend had the gene testing done at 54 for free in SA, but her mother also had bc, not at a young age though and unknown pathology as many years ago. Certainly if there is a recurrence of a primary BC I believe they would be eligible for free gene testing.1
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hi there paula I was told because I was under 50 with no family history and had triple neg that I qualified for the gene test. Mine was negative.Ill PM you too. Margie1
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I had a recurrence of the primary and my Mum had Breast Cancer at 40 thats it....I DID NOT meet the Criteria for free Gene Testing. It cost me $800 and was negative.0
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It's interesting @onemargie , @primek , @melclarity the difference in states etc. Yet another thing that isn't really consistent nationally. I had heard testing was $1200, maybe that differs with state too. I am on a wait list to see a geneticist. I got your pm thanks @onemargie
Paula
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I am 57 with an aunt post menopausal who had breast cancer & I was tested for free.0
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Hi all,
Thank you so much for all your comments and advice (love your terminology too Gayle:)). I have just finished all of my 16 cycles of Chemo and honestly it wasn't as bad as I thought so I know know my mind is worse than nearly anything life can grow at me lol. My mental state has calmed quite a lot and is now entering that dreaded "will it come back" stage but I now have some practice in how to try and calm my thoughts. I still have 25 Radiotherapys to do but I feel the worst is over for now. My hard work with my physio has paid off and my cording has nearly all gone tho my nerve pain remains. I am so greatful to each and everyone of you who "came to my rescue", it made me feel so much calmer and very loved and is truely priceless to me. I am a rare individual so I won't let this be any different as far as statistics go....I am me not a statistic. I hope I have plenty of years to come, of trying to help the newbies that sadly appear on here, just as you all did for me. My drs are impressed with how I have done through chemo and I'll have rads in months time and will finish all my set treatment just in time for my 3year wedding anniversary and my 34th birthday. Cheers for now and thanks again.2 -
Oh forgot to mention my gene test was Neg which I am very pleased about.2
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Good for you @Tripple QLD , You are so young to have to endure what you have. Great news re your gene test.Paula xx
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