Newly diagnosed mother

Sgamble

Hi everyone, 
My mother has just been diagnosed with breast cancer. We are only in the early stages. They have found the cancer in her lymph nodes under her arm and currently can not find the primary cancer in her breast. We have been told that she will be undergoing chemotherapy in the few weeks. 
I am wanting to know any advice I should have before she goes through her chemo. I would like to know everyone's opinions on priviate or public as we have not decided which avenue to go through. 
Also i am currently wanting to know if anyone has used early release for super for illness reasons. Her surgeon recommended looking into getting money released. Does anyone have any suggestions or advice. 

Thankyou so much! 
Samantha  

Cosette

Hi @Sgamble. I'm sure members will jump in with their tips. In the meantime, I wanted to let you know about some of our resources.

• Has your mum got a My Journey Kit? This is a free kit we offer that contains a journal and lots of information. You can order it online here or call us at 1800 500 258.
• We've got a page on chemotherapy that may help answer some of your questions.
• Our fact sheet on breast cancer pathology provides information on what is included in a pathology report, what the terminology means, and how you can obtain a copy of your report. You can download the PDF or order a hard copy here or by calling us.
• Our fact sheet on financial and practical assistance outlines a range of benefits, subsidies and services that may be available to help reduce the financial impact of a diagnosis of breast cancer. You can download the PDF or order a hard copy here or by calling us.

primek

Is your Mum having surgery 1st?
Do you know which type of cancer she has and which chemo?
I chose public...almost all was free, which was a bonus as I live remotely and tbe travel costs etc all add up and I wasn't well enough to work on chemo. The treatment I received was first rate at the RAH in SA.

Sgamble

This is all completely new to me so you'll have to excuse me if I am a little vague  
I think the reason for not having surgery first was my uncle pass 6 months ago from breast cancer. The dr didnt give me a complete reason why there were not going to operate first.She just said that she wanted to shrink the lump first and then operate last.  I know the mass is quite big, measures just over 5cm in her lymph nodes. That was the same place that my uncle had his before he was incorrectly diagnosed by his doctor.   
She has had tests through the week that included full CT scans, bone density tests and today a breast MRI. the dr was worried because she has the cancer in the lymph nodes that it could of spread to other parts of the body. Just waiting for our next appointment to get the results. 
Mum has private insurance and does cover chemo and radiology but I am not sure if its worth using it. I have been told by people that the gaps can be very costly, something that we cant really afford at the moment.  
How are you feeling now primek? 

primek

I'm good thanks ...now out 8 months on chemo.

Yes if tumor large they often will do chemo then surgery as get better clear margins. I expect your Mum should also be looking at genetic testing since I presume it is a brother with bc? It doesn't change her cancer treatment now, just what she might do later. Also your Mum's treatment will be based on her cancer, it's pathology report  etc. Not what her brother's was. Even if both carry a defective gene  (which they may not, could just be real bad luck) they could have different types of breast cancers. There is info on this site about the different types of breast cancers. My sister and niece also had breast cancer,  no identified gene and all 3 slightly different pathology. 

Chemo is hard but totally doable and they will monitor your Mum's side effects. What's important is to keep communication open and tell the treating team whats happening as they adjust things to sort nausea, constipation, reflux. Whatever the problem. Hydration super important.
Most public hospitals have a wig bank. Check out Kmart for inexpensive cotton scarves and wooly hats if not living in QLD. Also if you Google chemo hats you will find many sites. Important to get a sleep cap...virtually no seems. Your head gets cold without hair.

I used my private cover in public hospitals and no gap that way. Just a few bills for oral drugs.

Netflex is handy if she is resting a lot to help with boredom. A super comfy recliner with a sheepskin was my best friend. Get her into "look good feel good" workshop ..once chemo underway. ..as it helps. I had my eyebrows done by professional makeup tattoo artist (before all gone)...as it was the big thing that I was worried about. (So weird...both boobs off...okay ...but no eyebrows and I'm  stressed)

So lots to think about and get you planning. A diary for the appointments and a filing system for all the stuff...path forms, bills, info...you'd be surprised what you need to refer back to.

Take Care and ask away. Kath x

primek

This link might be helpful once you know more.
https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

primek

Oh, and one more thing. I claimed against my trauma component of my life insurance as I needed the ability to not have to work. It took the pressure off. Cobtact the superfund and just naje enquiries on what to do. Your Mum might have a trauma component, many do. 

Sgamble

Thank you so much for all your help. It's very overwhelming. It's very hard to understand as well. 
Mum has an appointment in June for genetic testing. The doctor highly recommended mum went through with it especially when she has two girls. 
We contacted her superfund, she only has death penalty on her insurance. So they have told her to put a claim in to get early release for medical costs. It's seems you have to jump through millions of hoops before you can get anywhere. 
She is worried about the chemo. I'll show her your comments just so she is prepared. I didn't think about eyebrows! I may have to see if she wanted to get them done. 

primek

If you can do a family tree before the genetics appointment is helpful. Any grandparents, aunts etc with bc or ovarian cancer, or prostate cancer. These things can sometimes be linked. Actually they like to know of all cancers of what you know as amazing what ones are connected. And for your Mum...both sides are needed...her parents and theres (and her siblings of course) It can take a while to map so starting to work on it will help for when you have the appointment. I was sent paperwork to complete prior the appointment. 

onemargie

hi there this is my experience with my super fund, I tried to claim on compassionate grounds and was declined as my cancer was not classed as terminal, and tried to get it for financial hardship and was declined that too as I had to be on a Centrelink benefit for at least 26 weeks, wasn't able to claim a Centrelink payment either so no sickness or newstart for me as I have a husband that works and the cutoff is from memory is $957 a fortnight which he does earn more than that but believe me we are far from being a wealthy family. And from memory might have been able to claim medical expenses had I gone private ( we don't have private cover) but my oncologist and treatment was through Redcliffe Hospital and they were great but couldn't claim anything as its a public hospital, and couldn't claim travel costs either as the hospital is less than the kilometres allowed to claim I think its like 30 or 50kms ?? but cant quite remember, so we had to exhaust all our savings and got through - just. But if your mum is single and that's the only income she has then she could claim sickness benefits but I think its around $250 per week?? or if her partner earns less than above a fortnight, The bastards wouldn't even give me a bloody thing. You work your arse off all your life and cant use it if you need it. I didn't want all of it just a small portion. But check with Centrelink as I overheard on the news one night about a $20k loan you can take out interest free now for financial stress so maybe look into that, I didn't hear the whole thing but that is something I would of used for sure. Not sure about how many hoops you will have to go through but maybe worth investigating. as far as chemo goes, everyone is different, rest rest rest, tell her to listen to her body if she's up to doing stuff do it if she's not then don't.  I've read on here how some women still work through it so you wont know until she starts but hang in there it is doable. Margie

fairydust

@Sgamble I also had chemo before surgery  to shrink the cancer,also had cancer in lymph nodes. I went private for chemotherapy and surgery then public for radiation. Today now 2 months after finishing a year of treatment ....cancer free.
To help your mum ask her any chores need doing? Her energy levels will be depleted and she will be resting a lot. Cleaning fridges/ ovens gardening etc not a bad idea.
She may resent your help or welcome it.
Even stocking up for her favourite foods or frozen meals not a bad idea Sometimes too tired to cook .
About public or private ask the the admin staff or doctors for costs they are usually pretty good. Best wishes

Sgamble

@onemargie I'm sorry to hear about the superfund. That is ridiculous. It's your money and people should access it when they really need to especially in illness. 
In my household there is only Mum and myself. We were told by Centrelink that she would be able to receive sickness leave but that's only $500 f/n. How are you supposed to pay a mortgage with that. I'm relieved that her bank understands her situation and have done a agreed deal with her but i feel for the people who fall too behind in rent or mortgage payments. 
We had got a call from the radiology team today. They think they have found the primary source from her breast. She has a biopsy on Friday. 

@fairydust thanks for your ideas and suggestions I'm pretty much doing that now. No complaints from me, I'm more than happy to help. In my opinion I feel she is slowly getting depressed. She is constantly upset that she has to have more tests and they are painful ( I'm sure they are and I empathise for her ) I have to keep making positive comments and keeping it positive. On Tuesday she went for her breast MRI because she went through with it I had taken her out to get a pedicure. Now I have to find something positive to do after biopsy. Any suggestions? 
I am going to speak to her surgeon on Monday, which is her next appointment. There has to be some sort of non formal "counselling" that she can have. I'm more worried about how she stresses out and always saying that she doesn't want to do anymore. The more she stresses the more I get stressed. 
I think also this may have something to do with her brother passing from breast cancer 6 months ago. 

primek

@Sgamble One of the things we talk about here is just to let your Mum have all the emotions. Believing you just need to be positive isn't realistic and feeling frightened, overwhelmed, depressed and facing your mortality are all very real and normal responses to breast cancer. Believe me...there is nothing that can take away the stress of a biopsy. Having you there for support is enough and more than likely your Mum would prefer to just go home, have a big bawl and just sleep or have a lie down (as quite frankly she probably hasn't slept for a while). The diagnostic process at the beginning for anyone newly diagnosed feels overwhelming. We all get that. Once surgery and or chemo starts you at least have a plan. Your Mum (and yourself) still has the big wait for pathology so they can determine which chemo regime she will be on. It will feel an eternity.

Yes ...losing someone close of breast or any cancer brings the reality of what your Mum has to face and what could be the outcome. My sister in law died the day of my biopsy. I attended her funeral with the thought that this could be me and my family in the future. I also had lost my sister to breast cancer. All very real fears and thoughts. I and most likely many bc sisters have thought like this and felt this at the beginning (and through treatment at times too). ..but we still got through. Being positive outwardly doesn't change how you feel inside. Quite frankly the brave face for others is exhausting. Just being there and allowing your Mum to express her fears is the best gift you can give. (But the odd pedi and trip out really does help a bit too )

As to the mortgage. I thought most mortgages had a built in insurance coverage for major illness. It may be just a death benefit but it might not be. It's worth checking that out to. Hopefully your Mum will tolerate chemo well and may want to continue to work throughtout. I took some long service leave and annual leave to reduce the financial drain. 

This is a hard process for both of you. Ask about a breast care nurse connected to your treating centre as they can provide invaluable support. Kath x

primek

Here is a link to one of our discussions.

http://onlinenetwork.bcna.org.au/discussion/16174/what-not-to-say-to-people-affected-with-breast-cancer/p1

Sgamble

I understand what you are saying about the positive comment but if I don't be positive and come across that she will beat cancer, she will plainly refuse treatmeant and be completely negative. I know what she is like. As soon as we talk about something positive and that she has achieved "a small step" something clicks in her brain and a little positivity comes out. I will keep using the positive card with Mum because I know it's working and I don't really want to loose my mum over cancer because she negative about how everything will plan out. 
I haven't been there and I don't understand the way she is feeling. Of course it would be scary, depressing and overwhelming. I take my hat off to all you brave women who are undergoing or have gone through cancer. I just feel that what I am doing is being productive and is working. Yesterday she plainly refused the biopsy and  after chatting and being positive about the situation and explaining that they have found the primary cancer is a next step. She now is egar to get the biopsy and move to the next step. 
I keep reminding her small steps, one step at a time  

Karenhappyquilter

You are a wonderful daughter.  I found seeing a cancer counsellor very helpful.  Where I live I found I could see one for free.  She knew a lot about cancer and what I was going through.  Best wishes Karen