Newly Diagnosed - TNBC - Mantis

Mantis

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.

Sister

@onemargie? @soldiercrab?

SoldierCrab

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

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

I have a different diagnosis but just wanted to send u big hugs xoxox

Mantis

Thanks @Kiwi Angel

SoldierCrab

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

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

@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

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

@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.

primek

@Mantis I had a port inserted. Initially a bit sore but settled. I found hugging a pillow in bed stopped it getting pinched. I had mine in over 12 months due to other treatments and  was able  to exercise with few issues with it in. It was occasionally uncomfortable depending on which bra I wore...ie if it pressed on it and I couldn't wear across body  bags as it pressed on it and made it hurt. Otherwise few issues.

Mantis

Thanks @primek that’s good to know. Feeling a bit more comfortable about it now.

arpie

So Sorry to hear of your diagnosis & surgery & now needing further treatment. The lovely ladies here will be able  to help you with explanations & tips ..... all the best for your ongoing treatment xx

Sister

@mantis However you do things, just don't sweat it.  If the kids don't do things perfectly, look away (unless of course it's just slacking off 'cos that will just get worse).  And if the family has to eat pizza twice in a week or survive on baked beans for a few meals...well...they'll live.  In fact, that's worth thinking about, too.  Make sure you've got plenty of really easy things to reach for such as baked beans, tinned soup, pasta and ready sauce.  Not brilliant nutritionally but could save a lot of angst in a pinch.  Everyone else is sick of it but my go to meal during chemo (when my tummy was unhappy and I couldn't taste much) was chopped cherry tomatoes, garlic and black olives cooked in some olive oil, served on fettucine with a dollop of basil pesto and some grated parmesan.  Easy and quick as.  And if you want to be healthier, you can try the San Remo pulse pasta (but it's pretty pricey as it works out to about 4x ordinary San Remo).

kmakm

Hi @Mantis,

I have four kids, 18 - 10,  with an even split of gender. Two are my nephew and niece who we're raising after my sister died from BC 17 mos before I was diagnosed. They're quite traumatised, so it was very difficult and needed some delicate handling.

Broadly speaking, first up was lots of reassurance. I found my cancer early (unlike they're mother) and had it whipped out fast, so I hit the stats hard when talking to all the children, and my nephew (12) was particularly comforted by the fact that it was "already gone" the day after my diagnosis.

I hid my distress from them all. I cried a lot in the first month. I mean a lot! So there was camo crying in the shower, a lot at night, out walking and while they were at school. It actually doesn't do your kids any harm to see you cry. In fact I believe it can be a good thing as they see it's OK to show emotion and develop empathy. However given my family's set of circumstances (my womb kids lost another aunt as well (my husband's sister with whom they were very close) to a brain tumour two years earlier) I did not want to be distressed in front of them.

I made an effort to keep conversation as normal as possible, rules & discipline the same, routine etc. This became harder when I began chemotherapy. There were a lot of people dropping food off, coming in to help and it was harder to maintain the normal routines. But you do your best. As @Sister said, you have to not sweat the small stuff. It's not the end of the world if the kids go to school in an unwashed shirt every now and then! Mine became more independent and I've let that continue rather than resume all I was doing for them before.

I disappeared into my own head somewhat and a couple of times realised I hadn't communicated with the kids what was going on with my treatment. They fill in the gaps, often incorrectly, and this was causing them worry. So endeavour to  communicate age appropriately so no one is left wondering. A bit of one on one time so they can open up without fear of sibling mockery is handy too.

My eldest, a son, didn't say much but a few times rose to the occasion and helped out magnificently making me very proud. My 15yo daughter needed some extra cuddles on the couch in front of the tv. The youngest, a girl, needed information so she could understand, and the 12yo needed to know the routine and structure of each day. They're all different so I'd advise noting what it is they require individually and delivering individually. 

I hope that helps! K xox