TNBC

[Tracy-1964]

Had my results today after lumpectomy and sentinel node removed and told my cancer was fast growing and Triple negative. I feel numb, trying to be strong for family trying to ease their worry. Treatment is chemotherapy then radiotherapy, any words of advice how to cope...xxx

[Jennymary]

Sorry to read of your news, all I can do is send loads of love and hugs your way xxxxxxx

[Hidden]

Hello Tracy-1964

It's a Big Shock! Bless You 💐

I think it might be the hardest diagnosis as there are no other treatments following Surgery/Chemo/Radiotherapy.

I had TBNC & had a Mastectomy followed by Chemo & I'm doing well, there is a light of the end of the tunnel, we just run the higher risk of a reoccurrence but my advice is don't cross your bridges until you get there.

I was 59 & TBNC is usually a Cancer of younger women, mine was stage three/grade three & an aggressive tumor and it was Multifocal, l had lots of DCIS's, so a Mastectomy was necessary.

l found my lump in June 2015, diagnosed July, Surgery August & Chemo finished by November 2015.

There are a lot of TBNC Ladies on here so I'm sure you'll get lots of advice & encouragement.

My Very Best Wishes 💐

Take Care

Mrs N 🌺

[Tracy-1964 in reply to Hidden]

i am new to site and a bit neiva

[Tracy-1964 in reply to Hidden]

I found my lump jan 25 docotor fabulous diagnosis 1st Feb had op 23rd Feb and today told my cancer is tnbc I feel numb how to I tell my children.

....I'm feeling lonely cause trying to protect everyone else..am I wrong keeping it from them

[Tracy-1964 in reply to Hidden]

Thank you x

I was shocked it still seems its not happening to me how can I have cancer and no pain am i in denial

[Hidden]

Tracy, you first need to take it in yourself & understand what's happening, it's hard to tell your children, I had to tell my boys on FaceTime as one lives in France & the other a couple of hours drive from us, that was very difficult. How old are your children? I remained very bright & it was almost like it wasn't happening to me! Everyone took the lead from me & we all remained very positive, sometimes now I'm not sure how I did it but l did.

Take Care

Very Best Wishes

Mrs N x

[Tracy-1964 in reply to Hidden]

You are inspirational women xxx

[Tracy-1964 in reply to Hidden]

3 years ago I was healthy that I donated my kidney son and

and he is fab

[Hidden in reply to Tracy-1964]

That is so amazing Tracy 💕 We'd do anything for our children & you've certainly given your son the ultimate gift.

Give yourself a little time, then you can tell your children as they'll need & want to know, one of my sons read everything he could on every aspect of TNBC so he'd understand, the other one needed me to explain things to him, they are all different, as are we.

Take Care & Sleep Well

Mrs N 😘

[Hidden]

Thank You 🌺 And before you know it you will be helping & inspiring others too!

This is a lovely group of ladies, we help & support each other, we have some laughs, we all have our moments but together we'll make it!

Try & get some sleep 😴 don't cross bridges until you get to them as you'll wear yourself out & you need all your strength.

Take Care

Mrs N 💅🏼

[Lainey66]

Take one day at a time. Please try and not to panic as daft as that may sound. I was diagnosed with exactly the same on 2 Oct 15. I had chemo first, then double mastectomy and total lymph node clearance on the left. I then had further chemo and then 25 sessions of radiotherapy. I understand totally how you have the need to be strong for others I have been exactly the same. Many told me to not worry about others, which was an utterly stupid thing to say especially when you are a wife, mother , daughter, sister etc. I found staying strong for others kept me strong for me. Have as positive outlook as you possibly can. I took up painting, I enjoy reading and I go out for lunch with pals. I go swimming and walking. I still enjoy life and try to push cancer to the back of my mind. A week next Monday I attend the third of my three monthly check ups. I had bloods taken for it today. This all becomes routine. Do seek support from the likes of your local cancer support services and do try to find activities that you enjoy doing. This rotten bloody disease does change you as a person. It has made me totally appreciate being alive. Rest when tired as you will totally need to build up strength. Be as positive as you can, that will help you get through this. Sending you very strong and positive vibes. Here if you ever need to vent a spleen or just chat. Lainey xxxx

[Proving_Them_Wrong]

I just found out 5 days ago that I have fast growing aggresive invasive ductal carcinoma. I dont know how to be strong either. I guess whether we mope in our disease or not our outcome is what it is. So we face it standing up tall and looking at it eye and eye and then fight our asses off and if that doesn't work then we leave with people remembering us for out courage and not anything less then that

[Hidden in reply to Proving_Them_Wrong]

Proving_Them_Wrong We none of us know how we're going to/or did face it; but you've summed it up in your reply to Tracy, we fight & we survive, you'll find a lot of help & support on this forum, l think you've already decided how you're going to do this.

My Very Best Wishes 🌺

Mrs N

[made2b2gether]

One step at the time. The time of diagnosis is very important to clearly understand the stage, the size, the lymphovascular invasion status and there are several tests you can consider. So try calm down and run a few genomic tests- an important one is BRCA 1, 2 test (as if you have such genes, then they ought to add a platinum to the standard regimen), and an IHC, Immunohistochemistry to understand the possible sub-type. it is still very difficult to gauge treatment by sub-typing but it could help your doctors make vital choices, especially if AR+ (Androgen Receptor). You need to discuss Neo-adjuvant treatment (chemo and radiation first, then surgery) or adjuvant treatment (surgery first, then chemo and radiation).

Ensure they run an IHC and all types of genomic tests and do a BRCA test (and maybe also test for tp53, PALB2, ATM) and the genes tests that your doctor recommends.

The significance of tp53 is that radiation sensitivity - you can discuss what that means with your doctor. PALB2 and ATM and a few other genes are also implicated in breast cancer but I am not sure doing the test will impact your immediate treatment regimen. So for now, the best tests to run besides an Immunohistochemistry would be BRCA 1, 2, and tp53.

Read the article below.

TNBC gets a bad name. It is described as what it is not (or what is not driving it), but know that chemo very often can work well, and working with a TNBC knowledgeable doctor is very important, for critical and timely decision making as treatment goes along.

You know what it is now, so best is to take a deep breath, take the necessary tests and get a 2nd opinion with a expert in the field and then throw everything at it, because you can do it!

Stay well and God bless you.

Read below and stay hopeful. PS= My wife fought TNBC at age 28. She is still on active follow up post treatment and is now 31, going 32 in July, 2017.

Stay Strong. Hang in there.

targetedonc.com/news/future...

You will find lots of friends, advice, and help on this page.

tnbcfoundation.org/

made2b2gether

[Hidden in reply to made2b2gether]

made2b2gether

Hi, are you in the U.K.? We're you able to get all these tests done on the NHS?

I'm glad your wife is doing well.

Best Wishes

Mrs N

[Tracy-1964 in reply to Hidden]

Hi As I have been told my cancer is BRAC1/2 the doctor have told me the genetic group will be in touch to discuss family history and the probability that others in my family have the same genes and yes this will be done on NHS. Hope this helps x

[made2b2gether in reply to Hidden]

Hi,

We are in Japan.

The BRCA test used to cost upwards of $3,000 when we took it - myriad genetics held a patent at the time - but the patent for myraid has expired. Unfortunately we had to pay full at that time, as in Japan, the patent was still alive back then. The cost has fallen a lot and just maybe NHS may cover it. So definately take the BRCA 1,2 at least (now). Ask your treating breast specialist (with TNBC expertise). That test has surgical implications and also treatment choice implications (adding a platinum to standard treatment).

Any major hospital can run an IHC (Immunogistochemistry). There are maybe 6 or many more types still being studied.

The 6 known are TNBC subtypes including 2 basal-like (BL1 and BL2), an immunomodulatory (IM), a mesenchymal (M), a mesenchymal stem–like (MSL), and a luminal androgen receptor (LAR) subtype.

If AR+, there are some additional treatments maybe.

Also ask what the ki-67 index is just for your knowledge.

Deifinity run the BRCA 1,2 and if possible the tp53. Ask your doctor about implications.

Also if no BRCA 1,2, you can also ask to check for BRCAness, which may also impact treatment regimen.

Please read.

facingourrisk.org/understan...

You can check Ambry Genetics online.

Also look up Foundation One.

Take good care!

I too am a layman but a husband and a man that wants to protect All women that tight tnbc!

Love

Desh

[Hidden in reply to made2b2gether]

Greetings Desh

Thank You so much for your information, (I thought you weren't in the UK) you have certainly researched everything you can & hopefully things should be starting to improve as standard in TNBC soon.

I shall keep your links & information to hand & I am so glad your wife is doing well; l am much older than your wife but also had TNBC I am doing well following treatment but it's always the unknown although l do not allow that it impact on my life in any way at all.

My Very Good Wishes to You & Your Wife for a Long, Happy & Healthy Future Together. 🌺

Mrs N

[made2b2gether in reply to Hidden]

Mrs. Nails,

Yes, keep in close contact with the best doctors and when in doubt, never second guess and go in!

Get help both physically and mentally, and persevere!

It is tough in practice but lastly,

"The present moment is the only moment available to us and it is the door to all other moments"

Thich Nhat Hanh

We must try enjoy today because not even the healthiest and luckiest are guaranteed a tommorow!

But there will many tommorrows and lots of good to come!

Stay well. Enjoy. Smile and laugh a lot.

Write anytime.

Desh

[Hidden in reply to made2b2gether]

Thank You So Much 🌺

We are leaving on Tuesday on a Special Cruise to Celebrate 40years of Marriage, we will be calling into your beautiful country for just one day only but hope one day to visit more.

Best Wishes to You Both

Mrs N xx

[made2b2gether in reply to Hidden]

We are in Kobe! Drop us a message if you dock into Kobe Port

[made2b2gether]

PS - tracy, the BRCA 1, 2 and other genomic tests also have surgical implications so discuss those with your doctor too, but run the genomic tests and the IHC. Have it done now as you wait so that the data can help guide you medical team as they go along. Ensure you are at a big research hospital and being treated by a TNBC expert professional.

Depending on where you are, you can find out the best place to go to at TNBC Foundation.

tnbcfoundation.org/

Try stay calm. I know this stage is very difficult to simply digest everything. But you will soon have a treatment plan and your medical team will be there to guide you and to help you.

[Kirmy]

I had fast growing TNBC....note had! I went through 6 months of FEC-T chemotherapy and when it came time to resect out my nipple and tumour they found chemo had benn 100% successful in treating my cancer...it had vanished utterly. Now I'm seven months post treatment and heading back to work next week.

It will actually be ok. I just surrendered to everything and went with it. Go into Ripley mode circa Aliens movie and kick some arse violently. After all...I'm not dead and I no longer have cancer. Can be done!

Xxx

[Hidden in reply to Kirmy]

Kirmy That's Amazing News! 🥂 Good Luck on returning to work, take it easy!

Best Wishes 🌺

Mrs N x

[Tracy-1964 in reply to Kirmy]

Well done to you hope my outcome is same as yours x

[Kirmy in reply to Tracy-1964]

I met many TNBC survivors on this journey...many! Don't believe the hype. Be vigilant but not paranoid.

[Debster2016 in reply to Kirmy]

Thank you for this Kirmy it's so good to hear and well kicked!! 🌹👍🏻Xx

[Tracy-1964]

Thanks for replies good to know there's support out there and some fantastic out comes. X

[MRK-3 in reply to Tracy-1964]

So sorry to hear your results, stay strong and I think you should tell your children sooner rather than later as I think they will give you lots of help and support which you will need.

Maggie xx

[Vic1970]

hi,I was also triple negative,like kirmy mine went after chemotherapy.I had a 2cm lump which was clearly visible to me and,after 3rd treatment of fec-t it was gone!still finished 8 treatment,lumpectomy and 20 radiotherapy just to be sure but my dr say it reacts very well to chemotherapy.

Once you get started on chemo you will feel better i think because you will know something is happening to stop your cancer,amd you have to think about staying well.

Ask for help with anything through your chemo and stay strong.

luv Vicky.x

[carolinenailsea]

I was diagnosed with Triple negative breast cancer on 19/1/17. To date its been a manic journey - I seem to live at the hospital. But I am coping better than I feared. I am optimistic about the long term future. From what I have read it responds well to chemo and although It might be wishful thinking, I am now on my second session of chemo and I am convinced the lump has responded - feels smaller and less dense. I have found the side effects of chemo bearable so far - the tablets they give you to help the side effects work pretty well for me. Next for me is lumpectomy and radiotherapy so quite a way to go yet.

Keep strong, be kind to yourself and I wish you all the very best.

Caroline hugs and xx

[Tracy-1964]

Hi All, have told my children and all have been supportive (think I might take advantage lol) I am waiting for appointment with my oncologist to discuss when my chemotherapy starts. Have decided to go back to work next week get back to some normality before treatment starts.

My surgeon did say that the cancer is hereditary, can anyone advise what risks this poses to my children (I have 3 sons and a granddaughter).

[CancerkickerKathy]

I am triple neg too. I did double mastectomy followed by chemo and am in process of my reconstruction. My biggest fear is will it come back and where will it land. The whole cancer, surgery,chemo and hair loss didn't seem to phase me. I did get sick for 2 days every time I had chemo. Seemed like my sinuses kept draining and made me cough which led to tossing my cookies. Good luck. I honestly don't know why I handled it so well.

[Louisejr]

Hi Tracy

Sorry to hear about your diagnosis. I can't comment as not TNBC, but the advice on here is amazing. The encouragement and support on your down days is invaluable, I personally would not have coped without the love and encouragement from these wonderful people.

It is so difficult to feel positive when your world has just crashed down around you. Just keep strong, take each day at a time and remember you are not alone.

Sending love and hugs.

Louise xxxx

[Tracy-1964]

Feel okish at the minute, have my appointment with oncologist next Thursday find out treatment plan. Just want chemo started and get on with it. Work have been amazing and has been good to get to some normality x