I was given the news of triple negative breast cancer yesterday. My tumour was successfully removed with clear margins (1.1cm size tumor), however one lymph was affected (result of sentinel node biopsy). Going back to hospital next week for further axillary lymph surgery.It's been a hellish fortnight since my GP referred me for an ultra sound 'to play it safe' when she felt my breast lump. My body CT scan and bone density scan are both clear. Just wanting to hear some positive stories from anyone out there who has had a similar diagnosis....reading articles on line has filled me with doom and gloom. Are there vitamin supplements I should consider taking? I've read online that 'luteolin' is beneficial with this type of cancer? does anyone have any suggestions for vitamins etc?? Thank you.

Hello Anna, there are plenty of positive outcomes for tnbc - everyone is different and the on-line stories of 'doom and gloom' certainly don't apply to us all. Next month it will be 6 years since I was diagnosed, and I am in good health, fit, and leading a completely normal life. That first year is so busy - tests and surgeries and scans and rads - it just disappears as you take one day at a time. I suggest you get a large file, and keep all your results, pathology reports, tests and appointments, and also costs (for tax rebates) - al your information in one place, as there will be a lot of it!.. Have you ordered your My Journey kit from this site yet? It has so many answers, and so much good advice - it was my go-to that first year! Come on-line whenever you need to chat or vent or ask questions - there will always be someone here for you. Take care, Michelle x PS My oncologist told me that feeding the good cells with supplements also feeds the bad cells, so don't go overboard.

Hi there @Annaspanna (cool name by the way).sorry you’ve had to join our crew on here. I was diagnosed may 2016 aged 43 with triple negative stage 2a grade 3 (3 cm tumorj bc had left boob off and 8 nodes taken which were all clear. All scans clear too. Had the boob off and nodes taken at the same time. Had 8 rounds of chemo two weeks apart didn’t have to have radiation as I chose to have a mastectomy. Took the other boob off after chemo as I trusted my guts and knew that was the right decision for me. I finished chemo oct 2016 and feel great now physically and have for some time. I also had the gene test which came back negative. Still on the wait list for my recon though should of had that done at the same time as surgery if I knew the wait was going to be so bloody long (I love hindsight). But sounds like you’re having breast conserving surgey so you are different to me. Its all really daunting at the start that’s for sure and I felt the same way as you but once you have a plan of attack it does make it a bit easier. Whatever you do don’t google anything. Triple neg responds really well to chemo if you have to have it and my prognosis like @Michelle_R is a positive one and she’s given you some good advice too. There is support out there for you I live brisbane north side and can help you with that if you’re around me. But wherever you are rest assured one of us one here will guide you through this time in your life. Stay positive take each day as it comes. Trust in your team, trust your guts too, talk to your breast care nurse as needed, take help from those who offer it, trust me you soon find out who your true friends are and people don’t offer if they don’t want too and there might be a few of those too, so don’t turn the good ones away and learn to delegate where needed. There is also the BCNA help line you can call for advice they are a lovely bunch. be kind to yourself, do you have a supportive partner and family ? I hope so and I’ve never heard of the supplement you have mentioned but I would advise to chat to your oncologist before you take it. Some of those types of things can be a bit deceiving and very costly something you don’t need on top of everything else and the only thing I take now is a vitamin d/calcium tablet and us with triple eg have the added bonus of not having to take post treatment meds like hormone blockers etc. PM me if you’d ever like to chat. Hang in there love it can be a challenge but you will find your inner warrior eve though you might not feel like it now but believe me you can come out the other side. Biggest hug. Margie xx

Hello @Annaspanna I was diagnosed with Stage 2a Grade 3 TNBC at the end of November 2017. Tumour was 19mm. Had lumpectomy and Sentinel node and one other was involved - 2 out of 3 taken. Went back to surgery a couple of weeks later for axillary clearance (22 nodes all up)and another two nodes had micro deposits. I ve recovered very well from both surgeries and started my treatment on 16th January. I’ve had three doses of AC chemo, three weekly,(one more of those left) and then have 12 weekly doses of Taxol followed by 30 doses of radiation, so still a way to go for me. It all is soo daunting at the beginning, but once you get treatment started you will be surprised at how quickly the weeks pass. Good luck with your next surgery and, as people constantly tell you, and it’s so true, “one day at a time” and you will get there.

@Annaspanna My name is Rosie and I'm one of the Cancer Nurses working on the BCNA Helpline.We also moderate the online network discussion. You've already had some great advice from people are speaking from experience and truly know what you are going through. It also sounds like your Breast Care Nurse will be a great support. With regard to your question about taking supplements I would suggest you look at the US based Memorial Sloan Kettering Cancer Centre website about Herbs https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbsYou can look up the latest evidence based information about all sorts of supplements and treatments you might hear of and find out what is known about how they work in cancer. BCNA also has a fact sheet on the website called Beware Dr Google that you can order or download for reliable sources of information https://www.bcna.org.au/understanding-breast-cancer/resources/order-bcna-resources/All the best, Rosie

Hi @Annaspanna Try to stay off Dr Google - it's depressing and quite probably irrelevant a lot of the time. I'm also an Adelaidean but not TNBC. I had my Breastscreen recall on 5 Dec 17, partial with sentinel removal on 21 Dec, and back for mastectomy with axillary on 8 Jan. I've now on a chemo regime, 4 x 3 weekly AC (halfway through) followed by 12 x weekly taxol, then it'll be rads. No-one knows for sure what their own experience will be. My surgeon has told me that as far as is possible to know, the cancer is gone - the rest of the treatment is because I'm young (ha ha - 54) and as the nodes were involved, there could be floaters. All you can really do is listen to your medical team and what they tell YOU because it won't necessarily be the same as what someone else will be told. And, of course, come online here and you will get lot's of info and support!

Triple Negative diagnosis | BCNA Online Network

13 Replies

Michelle_R
Member
8 years ago
Hello Anna, there are plenty of positive outcomes for tnbc - everyone is different and the on-line stories of 'doom and gloom' certainly don't apply to us all. Next month it will be 6 years since I was diagnosed, and I am in good health, fit, and leading a completely normal life. That first year is so busy - tests and surgeries and scans and rads - it just disappears as you take one day at a time. I suggest you get a large file, and keep all your results, pathology reports, tests and appointments, and also costs (for tax rebates) - al your information in one place, as there will be a lot of it!.. Have you ordered your My Journey kit from this site yet? It has so many answers, and so much good advice - it was my go-to that first year! Come on-line whenever you need to chat or vent or ask questions - there will always be someone here for you. Take care, Michelle x PS My oncologist told me that feeding the good cells with supplements also feeds the bad cells, so don't go overboard.
onemargie
Member
8 years ago
Hi there @Annaspanna (cool name by the way).sorry you’ve had to join our crew on here. I was diagnosed may 2016 aged 43 with triple negative stage 2a grade 3 (3 cm tumorj bc had left boob off and 8 nodes taken which were all clear. All scans clear too. Had the boob off and nodes taken at the same time. Had 8 rounds of chemo two weeks apart didn’t have to have radiation as I chose to have a mastectomy. Took the other boob off after chemo as I trusted my guts and knew that was the right decision for me. I finished chemo oct 2016 and feel great now physically and have for some time. I also had the gene test which came back negative. Still on the wait list for my recon though should of had that done at the same time as surgery if I knew the wait was going to be so bloody long (I love hindsight). But sounds like you’re having breast conserving surgey so you are different to me.

Its all really daunting at the start that’s for sure and I felt the same way as you but once you have a plan of attack it does make it a bit easier. Whatever you do don’t google anything. Triple neg responds really well to chemo if you have to have it and my prognosis like @Michelle_R is a positive one and she’s given you some good advice too.

There is support out there for you I live brisbane north side and can help you with that if you’re around me. But wherever you are rest assured one of us one here will guide you through this time in your life. Stay positive take each day as it comes. Trust in your team, trust your guts too, talk to your breast care nurse as needed, take help from those who offer it, trust me you soon find out who your true friends are and people don’t offer if they don’t want too and there might be a few of those too, so don’t turn the good ones away and learn to delegate where needed. There is also the BCNA help line you can call for advice they are a lovely bunch.

be kind to yourself, do you have a supportive partner and family ? I hope so and I’ve never heard of the supplement you have mentioned but I would advise to chat to your oncologist before you take it. Some of those types of things can be a bit deceiving and very costly something you don’t need on top of everything else and the only thing I take now is a vitamin d/calcium tablet and us with triple eg have the added bonus of not having to take post treatment meds like hormone blockers etc. PM me if you’d ever like to chat. Hang in there love it can be a challenge but you will find your inner warrior eve though you might not feel like it now but believe me you can come out the other side. Biggest hug. Margie xx
duxx1234
Member
8 years ago
Hello @Annaspanna I was diagnosed with Stage 2a Grade 3 TNBC at the end of November 2017. Tumour was 19mm. Had lumpectomy and Sentinel node and one other was involved - 2 out of 3 taken. Went back to surgery a couple of weeks later for axillary clearance (22 nodes all up)and another two nodes had micro deposits. I ve recovered very well from both surgeries and started my treatment on 16th January. I’ve had three doses of AC chemo, three weekly,(one more of those left) and then have 12 weekly doses of Taxol followed by 30 doses of radiation, so still a way to go for me. It all is soo daunting at the beginning, but once you get treatment started you will be surprised at how quickly the weeks pass. Good luck with your next surgery and, as people constantly tell you, and it’s so true, “one day at a time” and you will get there.
Annaspanna
Member
8 years ago
I feel better reading your positive posts - thank you for taking the time to type and share. I'm here in Adelaide.
I've had a bad day today, very weepy...hubby took me down this morning to speak with my Breast Nurse. As I'm sure you all know, Breast Nurses are a special breed: caring, kind & patient. Her talk with us has made me feel a little better.
The uncertainty of what may follow on from next week's surgery is playing on my mind - just praying and hoping that further lymph's are all clear.
I will get together a file (good idea), thanks Michelle_R
Thank you duxx1234 'One day at a time'...I will remember that.
Rosie_BCNA
Member
8 years ago
@Annaspanna My name is Rosie and I'm one of the Cancer Nurses working on the BCNA Helpline.We also moderate the online network discussion. You've already had some great advice from people are speaking from experience and truly know what you are going through. It also sounds like your Breast Care Nurse will be a great support. With regard to your question about taking supplements I would suggest you look at the US based Memorial Sloan Kettering Cancer Centre website about Herbs https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
You can look up the latest evidence based information about all sorts of supplements and treatments you might hear of and find out what is known about how they work in cancer. BCNA also has a fact sheet on the website called Beware Dr Google that you can order or download for reliable sources of information https://www.bcna.org.au/understanding-breast-cancer/resources/order-bcna-resources/
All the best, Rosie
Annaspanna
Member
8 years ago
Thank you Rosie_BCNA...much appreciated.
primek
Member
8 years ago
@SoldierCrab
smokie08
Member
8 years ago
Hi Annaspanna

Sorry you had to join the forum but all the ladies on here are brilliant! I am also in Adelaide and was diagnosed with TNBC stage 2B grade 3 in April 2017. My "journey" is a bit different from yours. I had Neoadjuvant Chemo as "Boris" ( that's what I called the lump) was between 3-4 cm and had spread to the lymphs. My chemo was given dose dense A/C ( given every 2 weeks) Then 12 weeks pacletaxel with the added bonus! of carboplaitin chucked in every 3 weeks form week 4 of the weekly dose. Then surgery wide local excision and aux clearance, then Rads for 6 weeks. The past year has been a whirlwind but like others have said you will get through it, it's just such a shock to start with. If you ever feel like talking please feel free to PM me.

Take care and big virtual hugs X <3 :)
Sister
Member
8 years ago
Hi @Annaspanna Try to stay off Dr Google - it's depressing and quite probably irrelevant a lot of the time. I'm also an Adelaidean but not TNBC. I had my Breastscreen recall on 5 Dec 17, partial with sentinel removal on 21 Dec, and back for mastectomy with axillary on 8 Jan. I've now on a chemo regime, 4 x 3 weekly AC (halfway through) followed by 12 x weekly taxol, then it'll be rads. No-one knows for sure what their own experience will be. My surgeon has told me that as far as is possible to know, the cancer is gone - the rest of the treatment is because I'm young (ha ha - 54) and as the nodes were involved, there could be floaters. All you can really do is listen to your medical team and what they tell YOU because it won't necessarily be the same as what someone else will be told. And, of course, come online here and you will get lot's of info and support!
SoldierCrab
Member
8 years ago
hi @Annaspanna
Wanted to share I am now over 5.5yrs since diagnosis of TNBC I had bilateral mastectomy and chemo then rads I am now cancer free and reclaiming my life...
Take it one day at a time.
Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet.

It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time.

The what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

My Journey Kits and other resources.

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information or support please call 1800 500 258. The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

You will get through this .... just take it one step at a time.... come on and ask anything nothing is wrong to ask on here and if you need to vent rang cry we get it ...

hugs
Soldier Crab