Triple negative

[reubenbracken]

Hello everyone again. I have just got back from the oncologist and it turns out I'm triple negative so I now have to have the genetics test to see if it's a gene mutation and if it is then I will have to have double masectomy plus ovary removal so thinking the worst as usual and very teary. x

[Jennymary]

So sorry to read your news, can only send loads of love and hugs your way, stay strong xxxxxxx

[reubenbracken in reply to Jennymary]

Thank you. x

[Lainey66]

I had the double mastectomy but they didnt mention the ovary removal. Ah reubenbracken, I really am sorry. Please beieve me when I say that it does become more manageable. I have to put it all to the back of my mind but there are days I have a bit of a downer. Just concentrate on the fact you are and will fight to stay alive. Do take care. sending big hugs xxxx

[reubenbracken in reply to Lainey66]

Thank you. x

[made2b2gether]

OK. Now that you know what it is, you can get in battle mode. The decision for double mx and later Fallopian tube and ovary removal will highly depend on the genetic test results. If the genetic tests are fine, ask for a IHC Immunohistochemistry and discuss with TNBC specialized oncologists on the best type of chemo for your particular biology of your TNBC type. If you need to wait 2 weeks and get a 2nd Opinion, then get one for assurance. 2 weeks will not make a difference to critical decisions on chemo type, freezing eggs if necessary, and a battle plan are very important. If its neoadjuvant chemo (chemo before surgery) then they can monitor the shrinkage every few weeks (and determine if chemo is working or another regimen needs to be tried). If you are told to do adjuvant chemo, then ensure your chemo opinion is well discussed and best targeted based on everything they know about your tnbc biology and best treatment options today. For that, ensure your specialist has a ton of latest tnbc knowledge and experience.

Either way, you have to hit it with everything you've got (chemo wise). A lot will depend stage, type, biology, location etc. But you can do this. Many have done this before you and it takes a lot, but you can do this. My wife was dx at 28 and went though the whole thing and she is now almost 3 years out. If you do not have children and you want children, then freeze eggs right away while waiting for biopsy / test results and scans. This is important.

I know this is very difficult for you, but once the treatment begins and you have a good team of doctors guiding you, you'll feel better and more empowered to fight this.

This is the best website for latest information on tnbc; Triple Negative Breast Cancer Foundation.

tnbcfoundation.org/

Stay blessed and rooting for you. The diagnosis and forming a treatment plan is a very challenging time. But you are going to have a plan to counter this soon.

Good luck

Ensure that you are at a big research medical hospital. Also ensure that your breast cancer doctor is well versed with TNBC or preferable, try go with a TNBC specialized doctor. Take deep breath. Breath out slowly. I know you feel worry and stress.

A caretaker and husband.

Latest info. for SABCS

cancertherapyadvisor.com/sa...

[Lainey66 in reply to made2b2gether]

This is an amazing response and has also helped me too. thank you.

Lainey66

[Jacbowden in reply to Lainey66]

Me too.

[reubenbracken in reply to made2b2gether]

Thank you very much.x

[made2b2gether in reply to reubenbracken]

Stay blessed. If BRCA 1,2 then ensure carboplatin is added to the standard chemo of AC and Taxol (other mix). If not BRCA 1 or 2, still get IHC done and detailed biopsy to determine best treatment option by a TNBC specialized doctor. You will be fine!

Stay focused. And ask questions to ensure you get the best.

[Saralouise in reply to made2b2gether]

What a fab answer.... Thank you for taking the time to write all that it's helped me too. Thank you

[Rosie2016]

I'm not sure you've been told the right information there or have misheard Hun. Many women have the genetics test (it's your choice) regardless of being triple negative or not. Also even if it's positive doesn't mean you have to have radical surgery (again your choice). I am triple negative but that's not why i was offered genetics testing. Mine was negative and the majority of women are if there is no family history so dont panic. In some ways I wished mine was negative to rid my body of everything but now I'm nearing the end of active treating understand more about cancer so would have accepted it either way. I'd suggest you get some more information about it before panicking xx

[reubenbracken in reply to Rosie2016]

Thank you. x

[haagr]

Try to stay busy and keep your life as normal as possible the best you can. I know it's easier said than done. The waiting is so hard. I found meditation videos on YouTube that were very helpful. I have a friend who is triple and BRCA negative and she is doing well 5 years after her diagnosis. Stay strong and positive! Sending hugs and strength from across the pond.

[reubenbracken in reply to haagr]

Thank you. x

[Jessydontcare]

what do I do? I started my chemo in October and a week later my other half had to go abroad he left really quickly and has been gone for 2 months. I told him I needed him here but he had to go. I feel angry and upset but I don;t know if there was a very good reason for him to go but I feel so alone.

[reubenbracken in reply to Jessydontcare]

Your not alone I know it feels like it but we are all here for you. how are you getting on with your chemo and have you had any surgery yet. You can talk to me anytime privately if you think it might help or anybody else on here they are all so friendly and helpful.sending you lots of hugs.xxxx

[Jacbowden]

I hope it's not as bad as you fear. I was diagnosed triple negative but no one mentioned genes!

[Saralouise]

Hi, I am TN and positive with the BRCA2 gene. I think of it as a positive as I can now have the required preventative surgery to keep me well as long as possible. There is a Facebook TN closed group where the ladies are all lovely and very knowledgable. Wishing you all the best xx

[reubenbracken in reply to Saralouise]

Thankyou

[lovesradio]

Oh my darling please imagine my arms around you in a hug. Cry your eyes out if you want to at this horrible news. Then you can gather your amazing inner strength along with a box of tissues and face the treatment head on.

We are all here for you x

[reubenbracken in reply to lovesradio]

Thank you. x

[made2b2gether]

A Medical Update Just for You: Triple-Negative Breast Cancer

Melinda Telli, MD

lbbc.org/medical-update-jus...

[made2b2gether]

December 08, 2016

From SABCS

The Challenges of Treating Triple-negative Breast Cancercancertherapyadvisor.com/sa...