Hi my name is Nat and have had a big day today finding out I have an Invasive Duactal Triple Negative 8cm mass. Wow finally blogged it and got it out there!! I am so scared about starting this journey as it has all happend so quickly and unexpectedly. I am really happy about the choice of Doctors and Oncologist that I am going through and the Neoadjuvant Therapy I am about to embark on....so Chemo first then Mastectomies and full anxillary clearnance on the left side, them radiation if am getting it all right after what has been the biggest and most exhusting day of my life! Am so glad I have found this group and you all to share this journey wth xxx

The pink sisters on your other post have all made excellent suggestions - I am posting on this one because I am tnbc too. Two years ago I had the bilateral mastectomy, chemo weekly for 12 weeks, 28 radiation zaps, and then a hysterectomy as a preventative measure. And here I am - living my "new normal". There is light at the end of the tunnel - you are right to just take things one day at a time. It is surprising how fast the time goes once the roller coaster gathers speed. My best hint is to buy a big file and plastic sleeves, and keep everything in it, from pathology reports to appointments, drug schedules, receipts, etc. Your life is about to become very busy and our memories are not great while on chemo. Have you sent for your My Journey kit yet? It is invaluable for information and help. I had a wicker box for all my "stuff" and it really helped. Keep in touch, Natty - we are all here for you. Big hug xxx Michelle

Hi Michelle, Thank you for the reply and the suggestions...I am a organiser and really dont know what to do or get ready for! So your suggestions give me a little plan of things I can do to be proactive while I wait for all the rollercoaster to start. Yes have ordered my Journey Kit should be here next week. Thank you for your advice Michelle, Im off to get myself organised and get some baskets and files today! Thank you. Nat xxx

Hi Nat, I was diagnosed with TNBC in August last year, and really can't remember a lot of the whirlwind of the last 6 months. It has gone so quickly - which I'm grateful for. I had a lumpectomy, 8 rounds of chemo and two weeks ago had a bilateral mastectomy with expanders. The main thing I can say is ask for help when you need it, but also give yourself space to be alone. I found a number of alternative therapies (in conjunction with chemo & surgery) really helped me. Reiki, acupuncture, meditation and yoga. If there is anything I can help with, please do not hesitate to ask. Much love,Penny

Hi Natty, I'm so sorry to read about your diagnosis. It's a frightening time and joining this group is a great idea. There's lots of advice and support here. There's also a triple negative breast cancer foundation in the United States that you might want to look at. They post regular updates on current research and they also have an excellent advice service if you have any questions about research. Before I had my bilateral mastectomy I wanted to know if there was any reason not to remove the 'healthy' breast and they were able to reassure me. They have question sheets you can take with you when you see your doctors and great articles like this one:http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf I have a blog at https://positive3neg.wordpress.com which I started after I was first diagnosed. It includes all my hard-won lessons about treatment, managing side effects, diet and exercise. You might find that useful too.Well done on choosing to have neo-adjuvant treatment. I did that too. The research on this is very clear; it will improve your survival odds. Triple negative is not one type of cancer but a complex group of cancers, grouped together by what they are NOT (receptor positive) so chemotherapy after surgery is a 'best guess'. You might like to talk to your oncologist about the possibility of adding in a platinum based drug (cisplatin or carboplatin) to your protocol. While it's not yet standard treatment there's some oncologists recommending it based on research results.Like all of us you'll find that this is a dynamic area and what was good treatment for any of us might now be superceded. It pays to do your own research (while avoiding the internet whackos!) and to take control of your own treatment. You will often be choosing between the lesser of evils, but choose you must. I also highly recommend doctor John Boyages book, Breast Cancer, Taking Control. He's got a talent for explaining breast cancer and treatment in ways that are easy to understand. The book is worth the purchase price for his section on statistics alone! The rest of it is great too. My very best wishes to you. It's not all bad news. You will find out who your friends really are. You will feel greatly loved. Meg X

Hi Natty, You have joined a great group of amazing women here. Meg's blog is filled with wonderful information (highly recommend her wonderful writings)...but give yourself time to take it all in, there is much for you to contend with now. Take one day at a time and your oncologist will be your best place of reference to begin with. Being happy with your choice of doctors is a wonderful start. I was diagnosed last July and within a week had my mastectomy, anxiallary clearance etc done. Had chemo every 21 days for 5 months and have just finished my daily radiation theraphy (RT). My breast care nurse contacts me every week still and I really appreciate the contact...sometimes Im great other times Im crying, but through it all, she is there walking beside me :) As the other girls have said above, keep things in a folder for reference as 'chemo' brain can cloud our senses at times!! Write a list for the dr each time you are attending. The My Journey Kit became my 'bible' and I take it to every appointment as it can hold all your medication history & information (if you fill it in!!) It also has a section to record each Dr visit. I used to place my sticky notes in there with my questions with the Dr comments :) Look for local support groups on this website also. If you have the opportunity to attend Encore sessions run by the YWCA throughout Australia, I highly recommend them. I attended while I was still having chemo and before RT but your schedule is different to mine but that doesn't matter. you can attned them months after all treatment, just depends when they are in your area. they consist of 6 weekly sessions (all free) are land & water exercises and info/guest speakers in each session. I still do the exercises each day in our pool. and several of us meet up for coffee every few weeks...great friendships form through what seems an unwanted condition. http://www.ywcaencore.org.au/ I wish you gentle hugs as you begin your treatment and ops. Know that you have many sisters here to support you at all times. Friends can sometimes be over powering as they try to assist you! we understand :) Hugs and love, Ricki Margaret xx

Newly Diagnosed | BCNA Online Network

17 Replies

Natty
Member
11 years ago
Hi Michelle,

Thank you for the reply and the suggestions...I am a organiser and really dont know what to do or get ready for! So your suggestions give me a little plan of things I can do to be proactive while I wait for all the rollercoaster to start.

Yes have ordered my Journey Kit should be here next week. Thank you for your advice Michelle, Im off to get myself organised and get some baskets and files today!

Thank you. Nat xxx
Michelle_R
Member
11 years ago
The pink sisters on your other post have all made excellent suggestions - I am posting on this one because I am tnbc too. Two years ago I had the bilateral mastectomy, chemo weekly for 12 weeks, 28 radiation zaps, and then a hysterectomy as a preventative measure. And here I am - living my "new normal". There is light at the end of the tunnel - you are right to just take things one day at a time. It is surprising how fast the time goes once the roller coaster gathers speed.

My best hint is to buy a big file and plastic sleeves, and keep everything in it, from pathology reports to appointments, drug schedules, receipts, etc. Your life is about to become very busy and our memories are not great while on chemo. Have you sent for your My Journey kit yet? It is invaluable for information and help. I had a wicker box for all my "stuff" and it really helped.

Keep in touch, Natty - we are all here for you. Big hug xxx Michelle

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