Heartbroken, but unbroken

strongtogether

We have just been hit with a TNBC diagnosis.
My wife is 44 and we have two young kids. Our world's been turned upside down. There's so much raw emotion and the sense of grief that we all know all too well.
Its been 12 days since diagnosis. She had a mastectomy on Wednesday, and a couple of lymph nodes removed. 
Today we heard that while the mastectomy went well, the borders are clear etc, one of the two lymph nodes had an 8 mm cancer. We are devastated. 

She's everything I wish I could be and I wish I could take her place, but I know I can't. 
We are positive and we are hopeful. She's a fighter, she is strong, she is healthy and young. 
Love to you all.

Kiwi Angel

@strongtogether I so sorry u had to join us here with this devastating news. It is so incredibly tough on partners too as u want to be strong for your significant other but u are struggling too. That’s what it was like for my husband. Sending you and your partner the biggest hugs and positive thoughts. 

kitkatb

Sorry you have to be here @strongtogether but welcome to the forum. Here you will find a group of women and men who totally get what you are going through right now.  No question is too silly so if you have any at all fire away.  This forum covers a broad spectrum of members ranging in all ages with all different types of Breast Cancers.  There are all sorts of threads on this site as well as a bit of humour which help us get through this shit fest of a disease.
I imagine you must both be thinking of all the worst case scenarios at the moment but take a deep breath and your team will formulate the best plan of attack for your wife and don't be afraid to ask as many questions as you need .  I myself was triple negative and went through treatment last year and there are quite a few of us on here who are or were, some still going through treatment and others who have finished.
  Hopefully you have a great breast care nurse who can guide you in all aspects of what your wife is going through now.  
I wish all the best to you both and just remember it is all totally doable. Let us know how you go. Do they have chemo on the table and radiation.   Big hugs to you guys  xo

Sister

@strongtogether It's hard getting that unexpected pathology report back when you're trying to be positive.  I had a different type of breast cancer but it was much bigger than first expected and had also spread to the nodes (click on my profile for my history).  Your wife will get through it and so will you and the rest of your family - it just takes some time to absorb the shock.  There are a number of women on this forum who have had TNBC and I'm sure you will get some more specific support from them but the rest of us are here as well.

arpie

SO sorry to see you and your wife here - all the best for her ongoing treatment.  It sounds like you will be an amazing support for her, which is half the battle xxx  Take the care - and thinking of you all xx

Afraser

Positive and hopeful, excellent. Not a TNBC diagnosis for me, but mastectomy, one positive node, so chemo, herceptin and hormone therapy. 6 and a bit years on and fine - living normally. The diagnosis rocks you but you can right your boat, trim the sails and keep afloat. There are lots of people here (not me, I’m much older) who can give immensely helpful advice about coping with cancer with small children. Keep your eyes on the prize and take one step at a time. Best wishes.

lrb_03

@GavinCh may be able to offer some advice from a partner's perspective. 
Thank you so much for coming on here to find support for you both. Already you've been hit with so much in such a short time. 
Know that we will all be here to offer whatever support we can, as you both navigate the weeks and months to come.
Don't forget that you will need support, too. Yes, it's mostly about your wife at this stage, but if you don't also look after yourself physically and emotionally,  you maynot be able to be what she needs.
Take care, both of you

primek

@SoldierCrab @mum2jj your wise words of wisdom are needed.

strongtogether

I wish all the best to you both and just remember it is all totally doable. Let us know how you go. Do they have chemo on the table and radiation.   Big hugs to you guys  xo

Thank you all for the welcome and support.
Kitkatb, we are looking at a full course of chemotherapy (not that I know what that really entails, but I'm learning). After that we will be in for radiotherapy. 
One of our best friends is a radiotherapist at the Royal Brisbane and Women's Hospital. I'm not sure how this all gets joined together but we are going through private hospital thus far.
 It has all been a bit of a whirlwind but I am looking forward to understanding how the different people fit together in a MDT. So far we have only spoken to the breast surgeon and breast care nurse. Both of whom come highly recommended.
Love to you all.

kmakm

Hello @strongtogether. When you see the oncologist you'll be given lots of info. Ask for the acronym of your wife's chemotherapy regime. It might be AC-T. Once you know, you can use the search bar here to find out more information.

At the stage you guys are at now, it's important to remember that no one gets all the side effects! Most people don't even vomit these days, so good are the meds. Some people even work through chemo.

Once you're through the horror that is diagnosis, it's the not knowing that's most unpleasant. Once there's a treatment plan you start to feel better, and then once treatment is underway you get into a rhythm. Chemo is no parts of fun but it's important to know that while it's grotty, it's doable.

Just a word of caution about the private health system. I went this route, without thinking much in the blur of the diagnosis at the start. I am significantly out of pocket as a result. Especially be careful round radiation therapy. Some people have been known to have five figure bills. You can have a mix of private and public care. Ask ask ask until you're truly clear about the costs and your options.

What part of the country are you? And how old are your kids? I have four. It's a very complex situation here (read my bio) so I've had quite a time of it with them. Trust your instincts, give them age appropriate information, and check in regularly. It's easy to disappear into the diagnosis, become an expert, and forget that kids process slowly and will have questions 'later'. Circle back regularly with a "now do you have any questions about mum?" In the car is a good spot, especially with boys. They don't always like eye contact!

And when chemo starts you'll probably be inundated with food. My kids loved coming home from school to see what treats had been delivered!

The three Cs of cancer treatment when you have kids: communication, cuddles and cake/chocolate!

Please tell your wife from me that I have never felt so loved as when I was going through chemo.

Try not to Dr Google. I know, easier to type than do!  Start with the BCNA website if you have questions. They have some excellent fact sheets. Macmillan in the UK is good as well. It's wise to remember that a lot of data on the internet is old, and that Australia (and Finland) have the best survival rates in the world. There's a lot of breast cancer research and so it is relatively fast moving.

That's probably enough for now! Please look after yourself as well as your wife. I had to give my husband a stern talking to along the lines of 'I'm not going through all this treatment to have you drop dead of a stoke '!

One day at a time. The biggest of hugs to you all, K xox

kezmusc

Welcome @strongtogether,

Sux to be here but there is so much warmth, information and understanding standing on the forum no matter what time of the day or night. There are a few of us close to Brisbane as well.
The start is scary as hell but as the lovely ladies have already said, once there is a plan you feel a little more in control.  I was 45 at time of diagnosis but I had a house full of teenagers.

While not TNBC I was node positive 5/24 with one at 25mm but I knew that from the beginning.  So Lumpectomy, re excision for margins, axillary clearance, 6mtss chemo and 30 rounds of rads.

While it is all so incredibly daunting at the beginning and the fear of the unkown is indescribable, once that first chemo is out of the way the time passes pretty quickly and before you know it your done.
While chemo is no walk in the park and that's probably the scariest appointment, some of us get through not too badly.  I was still able to work part time, run my farm, do all my usual things and plan formals, 18th birthdays, graduations and Christmas. Kept my hair with the cold cap and had a lot of fun times throughout it with all those events.
I also had next to no problems with radiation. 
Our brains like to conjur up worst case scenarios at the beginning, but there's a good chance it won't be anywhere near what we think at the beginning.
There was some crappy days in amongst it all but there were a whole lot that weren't.
All the best and look after yourselves.

xoxoxo

Sister

Some good advice there @strongtogether.  I would definitely check out the financial side - maybe one of the things you can do for your wife so that she doesn't have to process too much (although that may be just what she wants to occupy herself with).  My health fund covered surgery, private hospital and chemo (plus the extras with oncology such as exercise, etc), but your fund will not cover radiotherapy.  However, in most cases, the public system, which I went with, is just as good as the private and I haven't heard too much in the way of extra care for the money.  The only thing I would say is that I had to ask for the Mepitel film and supply my own moisturiser, but you can buy a hell of a lot of moisturiser for a few thousand dollars.

mum2jj

@strongtogether I sent a reply to your message.  Just quickly in regards to finances I did a mix of public and private.  Surgery and chemo were private, my health fund pretty much covered the chemo except for a fee of about $30 for one of the anti nausea drugs.  I did however go public for radiation.  The only real difference with public/private radiation was that occasionally I had a longer wait in public.  However as I said, one day at a time, one foot in front of the other.
Paula xx
TNBC x 2 with a positive node and 8 years clear of 2nd diagnosis.

strongtogether

@kmakm thanks for your kimd words, and thanks for bringing up the finances side of it. To be honest we are so keen to move that we havent yet considered the money, but its going to come up. How does mixing and matching actually work? 
We live in Brisbane. I spent three years working at the Royal Brisbane and Women's Hospital (non clinical). She has spent her professional career in allied health, as a lymphodema specialist Physiotherapist. 
I know the hospital and I have spent more time in more parts of the hospitals across Southeast Queensland than most, but I dont know anything about the human body.
Not particularly relevant, but it is kind of ironic.
Anyway. We have supportive family and friends. We are strong and we are young. 

Sister

Talk to your wife's surgeon as he/she co-ordinates the treating team.  Say that you would prefer to go public for rads and ask for referral to someone in that system - if your surgeon isn't keen, ask why.  (I didn't know to ask about public/private but my surgeon was very aware of my financial circumstances and brought it up with me.)  Your wife will have a long term relationship with her surgeon and oncologist.  Unless tnbc is very different to other bc, she is likely to see her radiation oncologist 2 or 3 times in total...ever.  

I'm not familiar with Brisbane's facilities - others may be able to comment - but I haven't heard that private is any better with regard to equipment or treatment.  And from what I'm aware, there's just as much appointment shuffling and waiting in both systems but I guess that could be different in different places.

I think you said that you have a friend in a local radiotherapy dept - if you feel you can without prejudice, then ask that person what they think.

kmakm

Happy to help @strongtogether. As your name implies, we're with you. I'm in medical admin when I'm in paid work.

Ask your breast surgeon to refer you to the public system for radiation therapy. They are the overall coordinators of your care. Some people are able to negotiate with the health providers to get an acceptable price. You could check with your wife's breast care nurse, she'd know the ropes locally.

@onemargie might be able to chip in with some wisdom if she's around.

How is your wife doing today @strongtogether? K xox