Hi All I received my breast cancer diagnosis a few weeks ago after finding a lump in my right breast. I had a lumpectomy and sentinel node biopsy on 24th August. My tumor was 25mm and fortunately margins and two nodes were clear but it's triple negative with a Ki-67 of 50% so I have an appointment with a medical oncologist next week to sort out chemo.The overwhelming panic has settled a little but wow, a diagnosis changes everything! I have three school-aged kids and really worry about how this will affect them. The triple negative and high Ki-67 terrifies me.I have the My Journey Kit and have been in touch with the breast care nurses who have been great. Any pearls of wisdom for staying sane during this process would be greatly appreciated.

Just an update .... tomorrow is my third round of fortnightly chemo. I think I felt the side effects more the second round but it was much easier overall as I knew what to expect. I had a bone scan and chest / abdo CT and both were clear which was a huge relief.I had a port put in the day before the second round and while it has been really quite sore it has settled a lot in the past few days and I think it will make things a whole lot easier in the long run.I was really worried about my kids but it’s amazing how adaptable to a new normal they have been! Every day I walk and my younger son comes along. We catch up for a chat and usually a few laughs too. My older son is busy being a teenager 😂 I think my daughter was a bit frightened, because I look different bald, I’ve been too sore from the port for big squishy hugs, etc but we’re getting back to normal again. I make sure to read to her every night and then we chat if she wants to and she asks questions if she needs to. As @kmakm said ‘noting what it is they require individually and delivering individually’ works a treat.The worry about recurrence is still always at the back of my mind but I know I’m not alone there. I’m doing everything I can and recovering well between treatments. Trusting the process 😊

Just thought I should finish off my active treatment story ....I started radiation three weeks after finishing chemo and as expected it was much easier than chemo. I drove myself to treatment every day for the four weeks and the whole process was quick and easy each day. I used Strata XRT gel to protect my skin and had very minor skin changes with no breakdown at all.I finished radiation in March and had a brain MRI and Chest and Abdominal CT in July for neck pain and headaches which thankfully turned out to be a just disc bulge. Chemo gave me an ectopic heartbeat but that’s all pretty much fully resolved now.In August I had my 12 month (since diagnosis) mammogram and ultrasound which were all clear and from now it’s just monitoring appointments every three months. I can’t say survivorship is the easiest thing I’ve ever done but I’m working with a great psychologist to get me through. I told my oncologist they need to come up with a placebo for us TNBC ladies so we can feel like we’re doing something proactive!Life is getting back to some kind of normal. I’m working a bit, getting back to running and while how I’m going to feel when I wake up is still a bit of a lottery I’m feeling more and more like myself every day. Hair and eyebrows certainly help!

One year down! Many more to go!

hi Mantis, sorry to hear of your diagnosis .... I was actually diagnosed 6yrs ago tomorrow I remember the whirlwind of appointments etc at the start it can be overwhelming... Glad you have a My Journey Kit and Breast Care nurse. there are some great resources out there for kids about BC ... Canteen can also give you some great information. my kids were 14 16 and 24 when I was diagnosed. we took it step by step I was truthful with them all from the start. https://www.bcna.org.au/resources/booklets-and-fact-sheets/some great resources here on the above link one called Medikidz about explaining it to kidsDont do DR GOOGLE he is the pits 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 whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. Navigating the online community formerly the what and how thread. http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread 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. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.

@Mantis Great to read your news! What a year it has been for you but you have done it & come through the other side. CONGRATS to you! It tests us all & we never think it will be over but we all get there eventually. Wishing you continued good health, strength of spirit & keep running!! Love & hugs xx

Newly Diagnosed - TNBC - Mantis | BCNA Online Network

53 Replies

onemargie
Member
6 years ago
@Mantis. I’m a bit late in this conversation. I pop in every now and then but I’m so busy with work and life these days. I had TNBC stage 2a grade 3 (3cm tumor) left boob may 2016 aged 43. No family history. Was tested for the gene as I was under 50 and had TNBC which I was negative for. All scans clear and no lymph nodes involved. I had dose dense chemo 4 rounds of AC 2 weeks apart and 4 rounds of paclitaxol 2 weeks apart. No rads as I chose to have a mastectomy and I also took the right one off as my guts told me too (my choice).

the crew have given you some awesome advice and it sounds like you’re managing well so far with the shit storm that is chemo which is good. I have a heap of bananas and scarves if you’d like them. They started with me and they have gone to NSW and VIC. I’d be happy to send them to you if you like ? Otherwise I was just about to post to see if anyone else wanted them. They have been added to each time they’ve been given out so there is a great selection to cover your noggin in you’d like. Just let me know. Biggest hug. You’ve got this girl. Margie xx
Mantis
Member
6 years ago
Thanks so much for the offer @onemargie 😊 I actually finished chemo in January so all done with scarves and bandanas 😂

Like you, I’m not in here as often now but when I was first diagnosed I was desperate for some good news stories, particularly for TNBC, so I thought I should finish my own active treatment story. Thanks so much for the support and hug xx
onemargie
Member
6 years ago
@Mantis that’s great. You’d have some fuzz on top now for sure! As I said I’m not up to date as much these days. If anyone else wants them just let me know 💕

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