Today was D Day

MelV83

Hey all,

So today I have gotten from my GP a preliminary result of stage 2 IDC involving the lymph nodes. HER negative and hormone receptor positive. Still need to do more tests to see if it’s spread. 

I felt something was wrong about a month ago and had developed a lump under my arm. I had a breast exam by the GP who thought it might be an abscess but wanted to rule out any other issues, since I’m only 41 and had never had a mammogram. I’ve felt a bit under the weather for about the same time but put it down to work stress since I’m a high school teacher. 

Emotionally though I think so far I’m taking it well, although I might be compartmentalising until I get the next set of results. The only thing I’ve struggled with is the emotional reactions of others- one of my siblings has been a godsend but the other managed to turn my telling her about my cancer her retelling every scare she’s ever had. 

However as a single parent with previous DV and high conflict I’m worrying about my ex finding out. I need to tell my kids (14 and 12) but keeping the news away from social media is definitely something I need to do because even though my profile is locked down he has found out stuff I didn’t want him to know before, and this is bigger news than that. 

I guess that’s all for me atm- reaching out and seeking support is something I want to do earlier rather than later.

arpie

So sorry to see you here, @MelV83 ... your world is turned upside down in a millisecond .... Whack up ANY question here that you need an answer - there are NO silly questions xx. We've all been there - the 'caught in the headlights' reaction to the news ... shocked, stunned, angry, upset - and a mix of all of it!

Where abouts are you? State/city/region - if you add it to your profile, members may be able to point you towards specific support groups nearby.

A BC diagnosis can really muck with your brain too.     If you feel that it is becoming overwhelming, talk to your GP and ask to see a counsellor xx. Family can be funny - and even friends too - you may be surprised who steps up to the plate to support you - and who may 'stay away' xx It has happened to all of us.  Maybe, when you DO tell people, let them know that you'll send an email (or start a blog or even private FB page) where you'll keep them informed every couple of weeks - so you aren't going over it every time AGAIN you talk to people - as it really can be upsetting to you!

Consider listening to the Charlotte Tottman Podcasts on 'What you don't know, til you Do' .... which is her own story, as she is a specialist Breast Cancer Counsellor who was diagnosed herself over 5 years ago.  Her podcasts are REALLY easy to listen to & I am sure that they will help you xx. They are here (listen to Series 1 first):
http://www.drcharlottetottman.com.au/my-podcast.html

I've never had kids - but I would think that being relatively truthful with them, but being selective in what you tell them just now - they will probably already have the 'vibe' that 'something' is going on ....  

Have you been assigned a Breast Care Nurse yet?  Maybe you could chat with them about how to break the news to them?  I think you'll find them very supportive of you too xx.  I was very selective on who I told initially ... but, if the kids have contact with your ex, it could put more pressure on them if told not to mention it (things like this often just 'slip out' in conversation ...)  There are also dedicated 'kids sites' to help kids who's Mum has cancer xx
There ARE groups who you can contact who may also be able to help guide you thru this emotional time ... Canteen and Camp Quality are 2 of them ..... I think your kids will fit in the age group for Camp Quality (some groups are age restricted) .... and can involve a weekend away at a camp with other young teens who's parent may have cancer ...
https://www.canteen.org.au/young-people/parent-carer-cancer

https://www.campquality.org.au/how-we-help/services-and-programs/kids-impacted-by-a-carers-cancer-kicc/

https://www.cancer.gov/publications/patient-education/when-your-parent-has-cancer.pdf

Some great services mentioned here .... Redkite, Youthbeyondblue, kids helpline and more:
https://www.cancervic.org.au/cancer-information/children-teens-and-young-adults/talking-to-kids-about-cancer/finding-support-and-information.html

You can also ring our helpline here for a chat - 1800 500 258 - during Mon-Fri work hours .... sometimes it helps talking to someone who is removed from your immediate circle xx 

Take plenty of deep breaths, take one day at a time, one hour, if needs be xx.  Try not to get ahead of yourself or think of the 'what ifs' ..... be lead by your Medical Team, who will be doing their best to get the best results for you xx

Check out this thread for lots of info on the forum .... we've even got 'funny bits' if you need a laugh.  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care and wishing you all the best for your next appointments xx

4rrrt5555

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MelV83

So is it normal to wait over a month for your first appointment with the Breast clinic? I’m in Adelaide. The GP told me I would have one within 2 weeks and after anxiety dialling outpatients and getting someone who was clearly annoyed I called and didn’t “wait my turn” told me that my appointment was on the 19/11, which is over a month away. Should I take it as a good sign, or is that just the way the cookie crumbles- so to speak?

arpie

Hi @MelV83

The 'wait' can vary from town to town, city to city. In an ideal world, it should happen within a couple of weeks .... but in my own case, my lump was discovered in early Oct and, and being regional -  the biopsy wasn't done til after Boxing Day - so it was over a 2 months wait for me just for the biopsy (I got thru Xmas by telling myself it was only a cyst - which is what I had been told when I was in my 20s when I first presented with 'lumpy breasts'.)  Then I got my BC diagnosis on Jan 5th - and I was lucky enough to have my Sentinel Node test & surgery 10 days later, on the surgeon's first & 2nd day back from Xmas holidays.

What 'diagnostic treatment' have you had so far?  Usually it would be a mammogram, followed by an ultrasound which would identify the spot for a biopsy (which then identifies the type of cancer & possibly the stage - tho this is usually all confirmed with the pathology after surgery.) 

It sounds like you've already had a biopsy done as you've indicated that the lymph nodes are involved already - did they biopsy the lump under your arm as well as your breast or at this stage, an assumption, due to the lump under the arm? xx  That is also usually determined wth a Sentinel Node test (to identify which nodes the lymph drains to) & surgery (with pathology on actual nodes removed during surgery to identify if positive to BC.)  

Is this next appointment to see the Surgeon?  If so, I hope you can get in for surgery before Xmas, as it gets incredibly busy from now til Xmas & most surgeons/specialists go on holidays from (this year) probably Dec 20th thru to the middle of Jan (with only emergency surgeons/specialists on call at hospitals.) 

Take plenty deep breaths ... once again, take each day as it comes, each hour if need be ... as there will always be some things that are outside of your control ... In the mean time, keep your mind & body busy!  Try & get out & keep doing things you love doing, with the kids too .... try & keep things as normal as you can for as long as you can xx    Take care

Suki

Hi @MelV83
I was diagnosed in Dec 2023 (with stage 2 Triple Positive) and was desperate to start chemo ASAP, which meant booking appointments before people's Christmas leave kicked in (as noted by Arpie).
I told my breast care nurse that the delay was stressing me out and she advocated for me with some referrals.  I also called up asking if there were any cancellations I could fill.
All the best xx

arpie

Terrific that your BC Nurse kicked in for you @Suki and helped get your appointments xx.
When my husband was first diagnosed with his cancer, the Surgeon's nurse sat in on all our meetings & arranged all our other appointments for scans etc prior to his surgery ... it was such a help.

MelV83

@arpie- I had mammogram, ultrasound and then needle aspiration of the lymph nodes followed my core biopsy of the right breast. GP said the staging was preliminary because due to some other things- my liver enzymes were up on my most recent blood test and I have head more headaches than usual lately- that they would want to get me in. But on my copy of the referral those things aren’t there so maybe that’s why. 

Honestly I’m hoping to delay any surgery until after school finishes for the year so I don’t have to take time off and will still be paid till the end of the holidays. So the 16th would be ideal. But this isn’t meant to be ideal times, and my anxiety is not getting any less now I know when the appointment is because I thought it would be more of a rush. Sorry, prop ably not making much sense lol

arpie

@MelV83 Maybe your GP could 'revise' the referral with all the info on it, so it gets to the top of the pile quicker xx    Has your GP arranged any more scans prior to seeing the surgeon?  With your Liver enzymes being 'up' and the headaches, I reckon they might be appropriate xx. 

I hope that you get referred to a Breast Care Nurse soon, as they can often intercede on your behalf (as happened with Suki) so you don't have to do all the calls yourself, which is just adding to your stress. xx   

Are you attending Flinders Medical Centre or one of the others?   The map in the link below (if you zoom in on it) shows which BC Nurses are in the suburbs/city of Adelaide & which Medical Centre they are attached to xx.

Click on the one closest to you (or at your medical centre) and you can email them directly and they can intercede on your behalf re appts etc xx or (if you are up to it) you can ring their helpline  1800 183 338 to see if you can be connected to one asap xx
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/

It is important that these checks get done, to get an accurate assessment of 'where you are at' just now xx. 

take care xx

MelV83

@arpie I’ll be at Lyell Mac. Thanks so much for the link and number, I’ll get on that on Monday x

arpie

SUCH a coincidence - that is one that I actually clicked on & had up on the screen!!! 
There are actually 3 at Lyell Mac - and another one in the area xx
You can email them even now & I am sure they'll read it before Monday xx.

Sometimes, I find it easier to write, than to speak - I just get too emotional    xx

MelV83

I just wanted to add that I have now told my 14 & 12 year old children, and while my daughter was pretty upset, my son took it pretty well since he is autistic and things don’t look different at the moment, he will struggle when changes happen. 

But I thought I would share the analogy I used to explain what cancer is and how it is treated in case it helps anyone else. I did hear it on a podcast by the cancer council talking to someone from canteen, but added a little since I’m a science teacher. 

“So think of an oval covered in grass. The oval represents your whole body and the individual blades of grass represent the cells in your body. Your cells need certain things in order to grow and function- water, sunlight and carbon dioxide.  But sometimes other things that don’t belong also use the same things to grow, like weeds. Weeds are like cancer cells that can grow where they are not supposed to, simply because they gain nutrients in the same way as blades of grass do. Except weeds take over in a space, and this is where a tumour grows. When that happens, something has to be done.” 

It’s at this point I asked them what you normally do for weeds. Most kids will say to pull them out. So when my son said this I continued: 

“Pulling the weeds is what surgery does. Sometimes you just have to pull gently and only take the weed itself, and otherwise you have to use a trowel and dig up the weed which will take some of the grass with it too, but the weed can’t continue taking over. If the problem is bigger then sometimes you might need to use a weed killer to kill the weeds so they can’t grow anymore.” 

Then I questioned them about what happens to the grass around the weed if you spray the weed killer. They usually understand that some of the grass will die too. So then I use that analogy from the beginning where just like the weed grows in the same conditions as the grass, the grass can die from the poison sprayed on the plant too. That’s where medicines like chemotherapy will work at killing the cancer cells but can damage and kill other cells too so it makes people sick. 

And both of them got it- they aren’t little so the explanation was more complex, but I really liked how the original example was a simple analogy that most kids will be able to pick up on and understand why it develops and how it’s treated. It’s been almost a week, and while my daughter is emotional like me so has been upset and clingy, my son has had a few chats with myself and his psychologist to discuss things like surgery and chemotherapy since and has assured me he is ok with it. 

I’m still hiding it at work and with the lack of sleep and just generally feeling rundown is not helping.  The diagnosis is all I have at the moment with a few weeks yet before I attend the breast clinic, so I keep trying to bring down any spikes in emotion or stress. As I work in year to year contracts and don’t have any other income I still need to see if I even have a job next year which is normally a stressful time already without all the extra. If they know, unfortunately my chances at a job are low so it’s important to me for the moment to keep it quiet. I have some people I trust who I can talk to about it, but sometimes I feel weird talking about it because I don’t want to make it all about the diagnosis and yet in the back of my mind it is all about it and hoping that the next lot of scans are clear and plans can start being made. 

Sorry about the essay, thanks for your patience! 

cranky_granny

Wow @MelV83 that is a fantastic way of explaining it. Wish I had use if that one at the start of my explaining it to the younger members of the family. (Grandkids and foster child)

It can be expanded for metastatic spread. 

Keep us posted with how you’re getting on. With it all some can work all the way through though i stopped working through initial treatment. I know I probably could have worked but logistics were too hard. 

Theres only about 6 weeks left of the School term so hopefully it works out. This yearly contract stuff is the pits and they wonder why we don’t have enough teacher’s. When they cant offer more than a year. 

arpie

Hi @MelV83 … that has to be the BEST analogy to describe the cancer, surgery & treatment that I’ve heard - and as you say, something that the kids of any age can readily understand and accept xx. Absolutely, Well done you.  

I reckon BCNA could ‘add that’ somewhere, as a great way to share a BC diagnosis with their kids - or sticky a copy of it to the top of a dedicated post regarding talking to kids about BC & how it will affect you & them (with your permission, of course!) …. @Mez_BCNA  - what do you reckon??

Sometimes it is really tough keeping it quiet than talking about it - but I fully understand your reasoning re your contract work in particular xx.  Yeah, yearly contracts suck!!   How can YOU (and the school kids) have continuity (and commitment!) if you/they don’t know where you’ll be every year!

I hope you can get your surgery organised as soon as school finishes … and that further treatment (as @cranky_granny says) hopefully won’t impact you too much.  Some members worked all thru their chemo (with time off for treatment) and successfully ‘hid it’ from workmates.  So fingers crossed this happens for you, if you need chemo.  Radiation (for most members) is usually much easier to get thru.  

If you’d like to chat with someone about it to take some pressure off you (and you need an outlet) give our helpline a call on 1800 500 258 ….. (Mon-Fri 9-5) …. 

Take care xx

Mez_BCNA

Always happy to pass on people's stories and words within the organisation @MelV83 - Great way of explaining even for adults who don't understand 

Also as mentioned above, you are welcome to contact our Helpline 1800 500 258 for a chat

MelV83

Thanks @arpie - I can’t take credit for the original analysis as I heard the grass and weeds part from the podcast on the cancer council website, but couldn’t help but extend on the information to give my science brain a buzz.

I’m open to all treatment options, depending on my final diagnosis once the second lot of scans are done- but I’m hoping for surgery right at the end of the school year before Christmas. 

Since the biopsy my breast has gone all lumpy and is still bruised two weeks later so I hope it gets to look a little more normal before I get to say goodbye to it, since right now it looks like Beetlejuice lol


Happy for my version to be shared though @Mez_BCNA 😊

Unfortunately today I was given the news that there was no contract for me next year, which for some reason was the straw that broke the camels back and led to a big emotional meltdown. So this means I have income from my current contract until the end of January, but during the first stage of treatment I will also need to look for a job- which I do have worries around keeping my situation away from work related stuff to get some security. 

I can always be a relief teacher but that comes with a higher level of stress due to student behaviours and very low financial security. The positives are that I can name my days that I will accept work and this can fit around hospital appointments, but I’m in two minds about it. 

Considering I teach maths and science I would like to hope that I can get something quickly as there is a shortage in that learning area, and even where I am now we are short at least 2 teachers, and class sizes are over 30 in most of my classes which is why this feels so out of left field, to tell tea hers that already work there that you aren’t needed next year when this year they are short even with me. I don’t really like the leadership I work for, but I love the staff I work directly with. They are the ones I will struggle to say goodbye to.  

So I toss up the flexibility and low financial security of relief teaching with the burden of starting over in a new workplace while undergoing cancer treatment. I don’t know what’s better, what’s coming or how hard it’s going to be.