Hi I hope I'm in the right area. Im a mum to a 5 yr old girl i was diagnosed in April with triple neg BC. Im stage 1 with no nodes involved. Had lumpectomy. I'm scared out of my wits. I can't stop googling about it and what I read scares me. My surgeon, who specialise in breast cancer, says I have nothing to worry about. Yet I don't know why he's being so optimistic because from what I've been reading triple negative can come back/reoccur. What I'd like to know is why some people from this site with triple neg have had a mascetomy. I told my surgeon to remove (mascetomy) my breast but he said that it wasn't necessary. I'm having 6 rounds of chemo then rads. I really want a mastectomy. Am I over reacting??

Thanks for yr reply. It made me feel better. I don't know why but I have this intense urge to have both my breast removed & my ovaries too.

I agree that googling can get you in trouble with the fear factor...but there is always positive news with research and I admit I can't help but have a look every few days to see what's new. Staying positive is the key and I know it is really hard when you feel crap all the time but as you get through each part of treatment you come further out of the fog. I am on my last 7 radiation treatments after only completeing 2 chemo due to gut complications (diverticulitis and abcess). So far have managed to avoid total large bowel resection. I chose to have a lumpectomy, being as positive as I could...am yet to get tested for BRCA 1 due to family history and just take every day as it comes being as positive as I can. We will get through this and move on having learnt a lot more about TNBC, your own strength (we are strong as hell, us women) and that people around are so supportive and want to do what they can to help. The research is growing in leaps and bounds so hang in there, put aside you doubts and know that you will survive along with the thousands of others that have. Take care. Deb

Hi Chichi i agree with the previous comment from SueVR as far as reading too much. I know when first dianosed all you do is google everything possible about your cancer, then you find blog/comments both horrific and also the more successful and happier comments. I also am triple negative, stage 3, 2.5cm lump, had a lumpectomy, 2 lymph nodes removed and all clear. Have finished all my treatments of chemo. and radiotherapy on 12 April. I am not taking any after chemo. medication. Although I have seen a naturopath recently who has also worked in oncology and also still a registered nurse. Told her I was triple negative and she has recommended to take some tablets once a day which will help called EstroSense and Methyl Max obtained only by naturopaths. I do not know whether they make a big difference as I have not asked my oncologist as yet only because this girl is extremely experienced in both lines of work I have trusted her advice. But i am healthy now and both oncologists and doctor have been happy with my recovery, so don't worry, you will get through your treatments and it will seem forever but stay focused on getting through your treatments and rest when you need to and keep busy between treatments, do what you normally do when you are feeling up to it and stop reading all those blogs. Take care and good luck, this site is a great one for support, so keep reading BCNA only, nothing else. Debbie x

Recently diagnosed triple neg *sob*

13 Replies

Chichi
Member
13 years ago
Hi Sorry I didn't reply sooner I'm not good at navigating around this site. Yes I started chemo in May. To date I've done 3 rounds of FEC (I have chemo every 3 weeks) and tomorrow I start on dexo-something!!! lol I do 3 rounds of that and then am off to do 6 weeks of rads....blah. If u want to email me u can drop me a line at [email protected] I'm in Melbourne. How's yr chemo going? Cheers Cristina
SamzRusty
Member
13 years ago
Hi Chichi,

Have you started chemo yet? I was diagnosed not long after you & am just waiting to hear from my oncologist. Stage 3, no lymph nodes involved. Are you in Sydney?
Pammi
Member
13 years ago
I have not gone down this road yet. Speak to your breast care nurse and have her set up an appointment with a plastic surgeon so you can understand all your options. I think that having all the information before you is very powerful and the surgeons have much experience in breast reconstruction and will advise you what is best based on your results to date etc. Good luck and let me know how you go. Cheers Pam
aoluser
Member
13 years ago
Hello everyone here! I am here to ask: about TNBC Stage IIB.

I want to ask - would you recommend breast reconstruction and leave some skin? Or ir is better to remove all skin?

Would you recommend also to remove the second breast? (double mastectomy)

Is there any preventive procedures after surgery?

Thank you!
chamini
Member
13 years ago
Hi Chich

I did the same thing when I was diagnosed nearly two years ago. I did a lot of googling and got very stressed and worried. I had a lumpectomy with TNBC with no lymph node involvment. After 4 sessions of chemo and 35 days of radiation or soemthing like that.

Do read what is recommended above. There is a lot of things on the internet that horrify people but it is not as bad. There are people working on curing TNBC all over the world. If you are worried get a second opinion, I don't think it is necessary to get a masectomy unless you have a family history of TNBC.

Good luck with Chemo and radiation
Annie_Gayed
Member
13 years ago
Hi ChiChi

Welcome to the network - I'm glad you found your way here.

Unfortunately any type of breast cancer can come back, not just triple negative breast cancer (TNBC).

You may be interested to read our webpage on triple negative breast cancer, which highlights a couple of important points:

TNBC responds really well to chemotherapy which is good news

Although targeted treatments are not yet available for women with TNBC, it is very treatable. Five years after diagnosis, women with TNBC are no more likely to experience a recurrence than women with other types of breast cancer. In the longer term (over 10 years), it is possible that a recurrence is less likely in women with triple negative breast cancer.

When it comes to breast cancer, it's best to stick to good quality reliable information, and avoid the scary and unreliable stuff online. Unfortunately there's a lot out there. You can also chat with a cancer nurse for free by calling the Cancer Council Helpline on 13 11 20 - another trustworthy source of info.

All the best ChiChi

~ Annie
Bindi
Member
13 years ago
Hi ChiChi It's so scary to be diagnosed triple negative, isn't it? I was diagnosed last October (Stage 1, no nodes, lumpectomy ). I felt like I'd had my lifelines taken away, I was sent straight to dose-dense chemo (4 AC/4 Taxol), no phone a friend! You can feel very alone when friends tell you about their/relatives breast cancer and you think "Yes, but mine's triple negative, it's different". I have 10 and 6 year old girls so I understand your fear of a recurrence. And no, you're not over-reacting to feel the need for a mastectomy and to get those ovaries out too. You're in survival mode, you do what it takes to protect yourself. But, take a deep breath, allow the fear, let it pass. You have time and you have choices. No need to react to the panic. Explore your feelings, get second opinions, find your support (forums, local support groups etc). You may still feel mastectomies is the way to go. You still have your treatment to get through so be gentle on yourself. Give your poor brain a rest and know there's no hurry to decide! Do you have a family history? I do and I'm BRCA1 so I've just had bilateral mastectomies with immediate scarless lat dorsi reconstruction. For more high risk info you can check out Pink Hope www.pinkhope.org.au. Hope this helps. Sending you love and courage xxx
Pammi
Member
13 years ago
Hi and welcome to the club. I am a TNBC and Oestrogen + cancer survivor 2 years on. I found surrounding myself with positive people and letting go of everything negative was a great help. The knowledge you need will be provided by your oncologists, breast care nurses, ask lots of questions and don't let anyone doctor speak to you. Your support network is vital. Getting through your treatment requires all your energy. There are many positive stories and my oncologist explained that treatment for TNBC has advanced significantly in the last few years. Sending you a hug and lots of positive energy. Cheers Pam