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

Sister
Member
7 years ago
@onemargie? @soldiercrab?
SoldierCrab
Member
7 years ago
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 kids

Dont 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
Member
7 years ago
Thanks for your reply @SoldierCrab

The breast care nurses sent me a great book from Canteen for my older kids. I haven't given it to them yet but I think once the more obvious physical changes from chemo start to happen I'll hand it over and talk a bit more with them. Step by step seems to be the way to go.

I have now had my first appointment with my oncologist and feel a bit better having a plan of attack. I start chemo on Friday and will be having 4 cycles of fortnightly dose dense AC followed by weekly paclitaxel x 12.

I'm also booked in for a bone scan and CT scan next week because of an ongoing hip issue which I'm pretty sure is running related but just to be sure.

I am having a port inserted prior to the second cycle of AC. Are the ports comfortable day-to-day?? Do they get sore after treatment??

Thanks again :-)
Kiwi_Angel
Member
7 years ago
I have a different diagnosis but just wanted to send u big hugs xoxox
Mantis
Member
7 years ago
Thanks @"Kiwi Angel"
SoldierCrab
Member
7 years ago
hi Mantis I had a picc line @primek
and some of the others can answer re ports.

My suggestion to you is organise yourself now with meals etc if you need to so you have a supply of frozen ready to use meals I would cook up a storm while feeling ok then when I was really struggling with Chemo, my teens could get something out of freezer and just cook the pasta or rice to go with it.
@Sister
your kids are younger than mine and @kmakm
same you might be able to give some insight into how to help the kids get through this time also some practical information.
We set up a more definitive roster and I set up instructions for the Washing machine etc and laminated them placed on top of Washer, Dryer Dish Washer etc. this meant when my brain was not clear they could still function and get things done.
Mantis
Member
7 years ago
Thanks @SoldierCrab The roster sounds like a fantastic idea as does the freezing meals. Although I'm not a great cook at the best of times!!
Sister
Member
7 years ago
@Mantis I've never lived my port and it is still uncomfortable at times but I am so glad I had it. It made chemo so much easier each week and I never had to face problems with veins shutting down.
My kids were 11, 12 & 15 at diagnosis - all have had birthdays since then. They have known the facts since day 1 and have been a great help. They have had daily and weekly chores on a roster for a few years now so nothing new - dishes, rubbish & recycling, hard floors, vacuuming and bathrooms - but they have stepped up with other things around the house such as helping with meals (including cooking Christmas dinner) and helping with washing.
SoldierCrab
Member
7 years ago
Mantis my meals were double batch of spag bol or double batch of Tuna mornay both freeze well, when I made lasagne we did 2 one to eat and one to freeze ....
Mantis
Member
7 years ago
@Sister it's good to read that you're glad you had the port. That was probably the one big thing I hadn't really thought about before the appointment. My mum had trouble with both her port and picc line so it's good to hear some positives.

My boys do have some jobs around the house but I think a proper roster will be really helpful. Good idea to cook double batches too. Thanks for the ideas ladies.