Hi there ladies im Donna AKA Doona ) I've had surgery, margins were all clear,results are: invasive ductal carcinoma 20mm,basoloid features histology grade3/3 focal adjacent high grade DCIS 1mm triple negative. Cant work out if its good or bad. Start chemo in a week, similiar to some of you ladies FEC for 3 cycles then Docetaxel for a further 3, followed by radiotherapy Any advice, tips smiles would be good at this stage.

Hi Donna and welcome to BCNA. You have definitely come to the right place and will find comfort and encouragement here. I was diagnosed on 5/11/2013 with invasive ductal carcinoma 32mm lesion. On 20/11/2013 had right mastectomy and axillary clearance with 8/23 nodes positive. I too am triple negative. I have come out the other side of the treatment tunnel. I had the same treatment regimen as you are going to have and finished late June this year. When I look back on it now it is hard to remember how it was, a bit like child birth. It is the emotional scars that remain and which I am working on, with the help of a counsellor, to complete the healing process of this unfortunate journey. What I can tell you and you are going to hear it a lot is that "it is doable". I found that the sooner I accepted what was going on I was in a better position be kind to myself and just take one day at a time. Learning to say "no" and to putting my needs first was paramount in my recovery. My saving grace was having a hobby - for me it was and is photography. I felt I still had a purpose and found enjoyment in this. Also, keeping in touch with my work colleagues and friends and listening to where they were at in their lives. I didn't allow myself to become too isolated. I was lucky I didn't have too many side affects but did have one stay in hospital due to trouble with my pic line. Everyone's journey is different but similar at the same time. It helps too if you make just one friend who is going through the same thing as you are. My friend, I met at the Look Good Feel Better Program and it turned out she lives in the same suburb as me. We met almost every week for coffee and a debrief. We have now both finished treatment and still try to catch up every two or three weeks. Please stay away from Dr Google as it will do your head in. If you find anxiety becoming a problem seek help, it is all hard enough without spiralling into depression. Your hospital will have psycholgists on hand to help you. I walk and have done throughout most of my treatment for 45 mins daily. This helps with fatigue and anxiety. When the weather is warm, I swim. Now I am back to lifting weights to build my muscle strength. I eat for nutrition not for taste, take vitamin D supplement and asprin. Not even three months post treatment and I am feeling pretty good again now, although a get tired quickly but after a rest I am back into things again. I don't spend much time worrying about the Triple Negative diagnosis anymore and just concentrate on looking after myself physically, mentally, emotionall and spiritually. You are going to find your first chemo treatment anticlimatic. Of course right now, you are feeling anxious and scared. I worked myself up into a frenzie. Try to remember that "anticipation is worse than participation" and this will apply again when you start Docetaxel and Radiation treatment. Stay connected to this site and ask as many questions as you need to. There are many women here who will have great advice for you. Big hugs from me to you Donna - you will get through this and like me and many others you will come out the other side and ready to reclaim your life. Love Joy xx

Hi, I am pretty new to all this so not perhaps so good for advice, but another shoulder to lean on anyway. I am halfway through chemo round one, Taxol weekly and carboplatin every three weeks for 12 weeks. I frequently see people on here advising to avoid Google - I have spent a lot of time on the Internet and personally find some of the blogs here much more frightening than anything I have come across there. I think the trick is to be aware of personal stories vs medical articles, and that study results are influenced by many factors, including the size, and parameters of the study. Here and in other support groups I find I have to remind myself that people who do well don't always keep posting, so sometimes the stories seem weighted towards those in crisis. When diagnosed with TNBC that was scary for me. Having said that the responses I have read here have all been kind and compassionate, those who have gone before us have much to share with us. The beauty of a forum such as this is that some people will feel as you do about all this, others will provide food for thought from a totally different outlook. At halfway mark I am feeling tired of being a pincushion and thinking of a PICC line over a port as even my great veins are struggling with the abuse of weekly chemo and blood work. My humble opinion is that ports are just a different type of poke. Give me a long line. Whether TNBC is good or bad, my opinion is it's just the less understood sibling. It sounds like a lot of research is being directed towards it, and although our diagnoses are now, we are still positioned to benefit from that research down the road. And really, that's comforting!

Welcome to a group you probably don't wont to be in! I'm two and half years from diagnosis and yes it's doable . All I can say is take care of yourself and get on here and ask you are sure to get a answer. I've got a good support group in my State of Tassie so join one if you can. Amazing how different you feel when talking to another pink lady . So all the best Deb xxxx

Looking for advice, tips and smiles

31 Replies

Pen11
Member
11 years ago
Dear Alex, It saddened me to read your message, and I can't begin to imagine how you are feeling. It's the fear we all have - and we realise so much is out of our control. Lovely to hear that your choosing to live every day, which is what we should all be doing. Sending much love and strength your way. Penny xxx
Alex_G
Member
11 years ago
HI to all you girls out there. I have sad news, I was diagnosed as you are aware in September 2013 it returned September 2014 Double masectomey Oct 4. one month on and I have multiple tumours. I have been given 6 months. I'm not sad or angry, feel sad that I will not be here for my beautiful twin boys that are 21. Of course my amazing husband. Just wanted to say yes Melika Live life to its fullest. If you don't feel right about anything make sure you all speak up. If any of you girls do have a reoccurrence after lumpectomy, Do not have reconstruction, as as the tumours grow it becomes very uncomfortable. I am planning a big trip overseas with my family and am enjoying being a socialite with all my beautiful friends. Stay strong girls, I am just the odd one out - you all rock my Sisters xxxxxx
Melika
Member
11 years ago
Rock on sister - we can beat this - I believe you have to make lifelong changes (no sugar, no grain etc;) I believe it really helps. We can do this!!!! We may have had breast cancer, but it didnt have us!! :)
Melika
Member
11 years ago
Finished chemotherapy and radiation - its a bit of a surreal feeling - like jumping off of a diving board! I'm hoping as time goes on and I continue with my eating and lifestyle changes, it will get easier not to be fearful of a reoccurance. If you think about it, everyone should live life to the fullest... we are all here, so lets live it up and enjoy each day! TNBC is very treatable - keep a positive mindset and a healthy life, and it will be a good one :) If anyone needs support or has questions to help get through treatment, I'm here for you. You CAN do it!!!!!
Melika
Member
11 years ago
Finished chemotherapy and radiation - its a bit of a surreal feeling - like jumping off of a diving board! I'm hoping as time goes on and I continue with my eating and lifestyle changes, it will get easier not to be fearful of a reoccurance. If you think about it, everyone should live life to the fullest... we are all here, so lets live it up and enjoy each day! TNBC is very treatable - keep a positive mindset and a healthy life, and it will be a good one :) If anyone needs support or has questions to help get through treatment, I'm here for you. You CAN do it!!!!!
LizSav
Member
11 years ago
Hi Lis

Yes, there are a lot of studies into TNBC but no targeted therapies yet. Hopefully, something will be available soon. There appear to be a lot of subtypes of TNBC as well, making it more confusing (for me anyway when I'm trying to read some of the articles).

As well as the Australian websites for breast cancer, I sometimes check this website to get information about TNBC: http://tnbcfoundation.org/index.html

Good to hear that your recovery after surgery is progressing well.

Take care, Liz
LizSav
Member
11 years ago
I know what you mean about the hair, I kept on tugging at mine obsessively and was kind of relieved when it was all taken off.

The genetic counsellor agreed to my test I think mainly because of the type of breast cancer - mine is triple negative, medullary. I did have some cancer in my family but they were all at least 2 generations back and only my great grandmother had breast cancer.

Take care, Liz xx
doona
Member
11 years ago
yes hair stayed in ,but only just ,i think i was more upset with the gradual coming out than the full monty shave on sunday arvo.Genetic counselling is on 17 nov ,im hoping they will agree to it ,im not sure of the criteria but ,im triple negative ,and lots of cancer within the family .please keep me informed on how you are doing x
LizSav
Member
11 years ago
Hi Donna

Thanks for your kind thoughts. I hope you're still doing well.

Have you had the genetic counselling yet?

I'm still in the process of gathering information from the breast surgeon and radiation oncologist as to the next steps in my treatment plan. I should have a clearer picture in 2 weeks after the 3 doctors who are looking after me have a discussion.

Did your hair stay put for your girls' weekend?

Best wishes, Liz xx
doona
Member
11 years ago
thx Melika ,yes i need to get a good coach to help me let go of a few things>Glad you are on the countdown x