Genetics

[reubenbracken]

I have just got a referral to the genetics clinic so I'm thinking I must be triple negative it's not the best is it

[Lainey66]

Hi there. I am triple negative.I was diagnosed last october. please dont despair, I have had all the chemo they could throw at me. radiotherapy and double mastectomy all my scans are clear and things are looking good, be positive, try and not to dwell on things. I have a blog that may help you elainemurphy66.blogspot.com please dont hesitate to message me if you are worried. triple neg isnt great news but they are making headway all the time xxx Lainey66

[reubenbracken in reply to Lainey66]

Thankyou

[reubenbracken in reply to Lainey66]

Hi yes I'm worried I don't feel I'm able to cope with all this and I haven't even had the test done yet,

[Lainey66 in reply to reubenbracken]

Reubenbracken, You will find the strength to cope simply because you have to, for you and your family.I was 48 when diagnosed and 18 days before my 49th birthday. I have three amazing children too as well as a very loving and supportive husband. people who dont have cancer will tell you not to worry about the family or about other people but to concentrate on you. This is easier said than done, of course you will worry about everything and everyone. Personally I found being strong for others made me stronger for me. You will come to detest the phrases to think/stay/be positive. It is so easy for those without cancer to say. However, a positive outlook and attitude will help you. Try to make your life as stress free as possible (stress can feed cancer). When you have energy use it to keep yourself busy. When you have low energy sleep, especially when going through treatment. You will find strength, courage and bravery. Tell yourself that you've got this and you will beat this. Remember too, we on this site are here too, to support each other. Chin up, brave face and sassy attitude and go and kick this cancers butt. All the best for your results. Sending positive vibes and thoughts your way. Lainey66 xxx

[reubenbracken in reply to Lainey66]

Thank you. The positivity hasn't kicked in yet I am so struggling. xx

[Lainey66 in reply to reubenbracken]

Try not to worry so much. busy yourself until results day. when do you go to hospital for results? xx

[reubenbracken in reply to Lainey66]

Im going to see the oncologist on thursday then 2nd round of chemo on friday.x

[Lainey66 in reply to reubenbracken]

Where are you? I am in Ireland and there are headways in research treating TNBC. I am back on 5th Dec so will find out more then. x

[Don66]

Hi I'm waiting for the results of genetic testing . I was diagnosed with ilc December 2015 and have recently finished my bc treatment. X

[reubenbracken in reply to Don66]

We're you triple negative

[Don66]

Hi no er+ pr- and her- . I was told it was because I'm under 50. Am so scared I could have passed this onto my daughters but a relieved at the same time that if it's positive they will be closely monitored and given the options of preventative measures. I had chemo first double mastectomy and radiotherapy .... It was a hard journey and at first I never thought I'd cope but found taking one day at a time helped x

[reubenbracken]

I know that's what's worrying me I am er- and pr- and the fact that they r doing a test I assume it will be her2- as well. I have three children.x

[ChrisChambers]

Hi, I'm triple negative negative. It totally freaked me out when I was told. Yes it is more aggressive and that's why even if they think they've got it all out they give you chemo to mop up any stray cells. There is a website in USA that pulls together all up to date info on trip Neg. It's called the TNBC Foundation. Have a look. 15-20 % of breast cancer will be TN so there's lots of us out there. You just learn to cope, sometimes I'm not sure how but you're very early in your journey. My treatment finished Nov last year. I'll never be the person I was, priorities change and that's not a bad thing. But you will get through it. 😘

[reubenbracken in reply to ChrisChambers]

Thankyou

[Debs1962]

Hi I would think if they have given you results of ER and PR they usually know the HER 2 status as well, so suggest you ask them. What have they told you so far about treatment options etc?

Everyone's case is different, ask loads of questions of your breast care nurse, get as much info about your results as you can, referring you to genetics clinic I would think they want to find out about the genes for BC, which more people don't have by th a site is brilliant for support as we have all gone through BC treatments good luck xx

[reubenbracken in reply to Debs1962]

I'm going to see the oncologist on Thursday so I might know more then. thanks

[reubenbracken in reply to Debs1962]

I'm going to see the oncologist on Thursday so I might know more then. thanks

[Debs1962 in reply to reubenbracken]

That's good, so make sure you write down all that you want to ask, the type of cancer does not mean you have the gene it can be any type, so you could still be her2, but hopefully you will know more soon, it is frightening what you are going through, and you don't know how on earth you will cope, but you do and you will, you do it for your family and ultimately yourself , be kind to yourself and ask for help from friends when you need it. Xx

[reubenbracken in reply to Debs1962]

Thankyou

[Hidden]

Hi

I too had TNBC & finished my treatment this time last year. I also had multifocal DCIS that's why I had a Mastectomy.

My Oncologist took my family history & spoke to the Genetics Department but they did not feel it was necessary for me to see them (l have boys) now Men.

I know you must be very worried but as you have daughters it's good to have as much information as possible.

You will get through this, all of us here on this site have either finished treatment & are looking forward to the future or are getting through their treatment one day at a time.

TNBC not the 'best' but they are making discoveries all the time.

I'm on a 'new' regime, a six monthly Zolendronic Infusion for three years to try & prevent any recurrence in the bones. Not a 'new' drug but a 'new' regime for post menopausal women. I was 59 when I was diagnosed.

Please don't despair, l know its hard, but you'll find the strength, you really will & we're all here to help if you need it.

Take Care 💐

[reubenbracken in reply to Hidden]

Thankyou

[Hidden in reply to reubenbracken]

Let us know what your Oncologist says on Thursday & as Lainey says make a list of your questions.

Take Care 💐

[reubenbracken in reply to Hidden]

Thanks everybody.xx

[Hedgesaw]

I took my phone to every session and got permission to record all my diagnostic sessions from breast surgeons, oncologist and plastic surgeon (reconstruction options). I was in no state to write anything down (wouldn't have been able to write fast enough to catch it all) & I have found that enormously helpful to refer back to, even throughout my treatments, as your brain only remembers the bits you want to hear and misinterprets other statements. Everyone was so kind and helpful & they were very happy to accommodate my request to voice record my appointments. Good Luck! Not long to wait now and we all know that waiting really is the worst part of what you are facing. X

[reubenbracken in reply to Hedgesaw]

thank you