Hello to all the strong women out there!

iSara

My name is Sara and I have been newly diagnosed early stage breast cancer. Yes I know i'm super lucky!
Ive just turned 40 and a single mother of 2 teen boys.

I've had partial mastectomy and now waiting to see oncologist on the 21st August to work out my chemo & radiation plan. They said I need it due to pathologies from surgery.

I'm in between being strong and knowing i'm going to be ok.....to i'm losing my mind. I assume the up and downs are normal??

Any guidance and tips will be much appreciated! Questions I should ask doctors? I don't know where to even start...so much on line and just feeling overwhelmed.

much love in advance
XXSara

iserbrown

@iSara

Hi Sara
lots to learn and info to absorb.  There are groups on here that you may wish to join as well as but in the meantime to get started

Our @SoldierCrab has put together a welcome with links


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 a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

The what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

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.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

 

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

iSara

Thanks so much! 

kmakm

Hi Sara. Sorry you've found yourself here but having said that, I hope you find it as helpful and supportive as I have.

A word you often see used here is rollercoaster. Having a BC diagnosis is full of ups and downs. You don't get used to it as such, but you do learn that you will pull up out of the downs at some point so you just have to keep hanging in.

I have four kids, two teens, an almost teen and one younger. Just as you get used to your treatment plan, they will too. Be open, give them the info they ask for and bear in mind that you might need to reiterate. I've found that I've assumed they've heard and understood something I've said only to discover later that it's gone in one ear and out the other!

I hope my experience will make them more empathetic and caring individuals as they move through their young lives.

I describe the learning curve as vertical. There is such a lot to absorb. Don't stress, you'll get there. Take notes, take a friend or family member with you to appointments, or record them on your phone. The doctors are used to patients not getting it all clear the first time and are usually very happy to repeat themselves. Do you have a breastcare nurse? If you get a good one they can be an amazing resource for all those questions that occur to you 'later'. Try not to Dr Google! But if you do, stay away from the US websites. Their healthcare environment is so vastly different to ours it can be quite distressing. The BCNA and Macmillan (the UK equivalent) are always a safe bet.

Have you got your My Journey kit? That has excellent suggestions of questions to ask your doctors. And you can always call the BCNA helpline on 1800 500 258. The people on the other end of that line are terrific.

And of course, you can always jump on here for a question (this is an awesome hive mind!), a vent, a fret, a rant and even a laugh! If you're comfortable you could tell us whereabouts in Australia you are and a little about your diagnosis.

Hang in there Sara! Take it one day at a time if it threatens to overwhelm. Big hug, Kate xox

Sister

@kmakm has said it all.  Don't put too much pressure on yourself - the emotions fluctuate.  Welcome!

iSara

Thanks so much ladies @iserbrown @kmakm @Sister  

We try to be strong for everyone around and just nice to know we aren't alone. The real stuff

@kmakm Thanks so much. 4 kids...how do you do it! my two are enough lol 
my son suffers with anxiety and I worry about how much I tell him, but I cant hide it either. Its a balance as a mum, but they aren't silly either. lol

My breast care nurse ordered me a kit and bra    She is amazing and so caring. I tell you, we are so lucky in this country....I keep saying it. We get looked after so well. 

After surgery I have two different size breasts, one has a weird shape. Can this be fixed later one? After treatment is done? I know it seems trivial, but i would like to find someone new one day and seriously its a daily reminder everyday

Thanks @Sister

kmakm

Sara it's absolutely not trivial. You have every right to feel as whole and restored as you wish to be. Sanity not vanity. Our breasts are a central part of our femininity. Some women are less concerned than others but no one chooses to get breast cancer. This is not elective.

Yes, you can have reconstructive surgery to correct imbalances as best they can. You'll need to see a specialist plastic surgeon; your breast surgeon should be able to refer you to one. They'll be able to tell you what they can do.

You might like to join the Choosing Breast Reconstruction group here. While you don't need a full recon, there's a lot of expertise in that group.

As to how I do it with four kids? I have no idea! But we muddle through. K xox

iSara

@kmakm hats off to you my dear. xx
There a line in a song I like and it says....
Most mummas oughta qualify for sainthood. You for sure qualify lol

Ok, thank you xx made me feel less superficial. My surgeons husband is a plastic surgeon, Ill talk to her after treatment.

Oh forgot to mention I live in Doncaster, Melbourne. 

Thanks again everyone
much happiness and appreciation to you all

kezmusc

Hi @iSara,

Welcome to the forum.  The ladies have already covered everything so I just wanted to say hi and that your feelings are absolutely normal.  Rollercoaster is the best word to describe it.

Coming out of this looking and feeling "normal" was one of my biggest goals throughout.  No one asks for this crap and why shouldn't you do everything you can to come out the other side as best you can.

Nothing is trivial on here, just make it known to your team what your plans are for later so they know up front and can work with your wishes.  I had lumpectomy as well and ended up with one D and one C cup.  I have found that over time once all the up and down swelling and effects of radiation start to subside  the naughty breast starts to soften and becomes less rock like lol.  The difference is really quite minor now.  

I also kept my hair through chemo with the cold cap so nobody has been able to tell anything that's been going on in my life unless they've been told.  I pretty much look exactly the same as before.  

All the best to you lovely.  You got this.

xoxoxo

tigerbeth

@iSara A big welcome here but so sorry you have to be here ! 
Like us all this shitty thing is mindblowing !! 
Feel free to question or vent on here , someone is always listening ! 
Many hugs are exchanged here ! 
Best wishes for your next part of treatment . 
If you feel like a chat /coffee/wine in person just send me a PM 
i live in Ferntree Gully not that far away ! 
Hugs xx

Sarnicad

Hi @iSara I had surgery in June and still have a line through my breast and everyone keeps telling me it will settle with time so I get where you are coming from plus we have enough other crap going on who wants to look lobsided as well?!  I worried about my hair - way more trivial!

iSara

@Sarnicad Yeh i'm with you x Oh i'm worried about my hair too. So many mixed feelings. Trying to just keep in the positive mindset. Lets look out for each other.

@tigerbeth Thanks so much lovely and yes would love to catch up for a drink. xxx 

@kezmusc Thanks heaps  I hope my experience is like yours! Im wishes for that tonight. I will wait till after all has settled, before I make any decisions re breast recon surgery.

Thanks ladies, truely, all of you have made me feel so much better! xxx

kezmusc

@iSara,  have you asked if there is a cold cap available for you to use through chemo?

arpie

Hi @iSara
Sorry to see you here - you've come to the right place for support and any questions that you may care to ask.

Yep - Ups and Downs are TOTALLY normal and acceptable and to be expected!  But there will also be a lot of good days as well .... it sort of ebbs & flows.

There can be rage & tears - and also calm & collected .... I've found that it is  more of an emotional challenge that's caused some of my hiccups - I was lucky  & avoided the chemo - just needing surgery, rads & now tabs.

Taking your phone & recording the meeting with your surgeon/onc etc is a great way to check it out again later, cos in the meeting you really only hear every 2nd word ..... and our memories are very much affected by our treatment as well.  

The lovely ladies have offered so much good advice above already .... trying the cold cap would be wonderful thru the chemo if it is available to you .... if not, maybe start agitating that it is!   

All the best for your ongoing treatment - if we can help in any way, just ask xx

Zoffiel

A few of us went to the Plan B conference this weekend @iSara One of the presenters talked about the importance of talking to our kids about what is happening. When I was first diagnosed I told my son, then aged 13, but pretty much dropped the communication ball after that.

Hind sight is 20/20 however some things she said struck a real chord with me. We are wired to protect out children (well, most of us) but they are not stupid (well, most of them) and they have ways of finding things out or making things up if they don't get the information they need. By trying to protect them we can do more harm than presenting unpalatable truths. It goes counter to many of our instincts but uncertainty is very destabilizing for children. I'm sure someone with a functioning brain will remember her name....

Sorry you have found yourself here. 

iSara

@kezmusc I see oncologist on the 21st....TBC

@arpie thanks so much and I will be doing chemo privately....so hoping they'll look after me. 

@Zoffiel that is so true! We know how doctor google can be so depressing and they are more than capable of googling. As soon as I get a full briefing from Oncologist...I shall sit down with them and explain it all. They need to learn and id rather it be properly. You are so right on this one. Thank you so much 

Had my 3 CT scans & Bone scan today. Being positive for the results! 

Thanks ladies xxxx