Hi everyone, My name's Cass. It's with a heavy but hopeful heart that I introduce myself to you today. My 25 year old sister was diagnosed with breast cancer last week. Whilst she is dealing with this on all different levels she has asked my Mum and me to help her source some answers to the many, questions we have. It's so great to be able to find a wonderful network such as this where there are so many supportive people. To give you a little background: She has one lump in a duct of her right breast and had biopsies and ultrasounds completed last week, which was when the diagnosis was made. I believe they checked the lymph glands at that time and found them clear. They also found a secondary site of calcium deposits behind the nipple. They have booked her in for an MRI tomorrow and will have more information after that at her specialist appointment on the 4th Feb. She's been booked in for surgery on the 8th Feb and has been told Chemo (definitely) and Radio (most likely) will follow. She only has a couple of days after her specialist appointment to decide so many things before her surgery at the end of that week. I'm hoping that you might be able to give us insight and advice or even point us in the right direction to get some advice. Here goes..... Firstly, she has private health insurance but we've heard from a few people that there will still most likely be large out of pocket expenses whereas the public system is great with very little out of pocket expenses. What are your experiences? I understand that you aren't able to provide medical advice but in your experience, is lymph node removal of some sort mandatory? My sister has decided she would like to explore getting implants and reconstruction. What is the usual process here? We've heard that most plastic surgeons won't do any reconstruction until at least a month after surgery. Is this your experience? My sister is very concerned about waking up after surgery and is unsure how she'll cope over the next weeks until surgery is able to be completed. She's also concerned about fertility and is wanting to explore the option of freezing her eggs. Do any of you have experience here? Do you know where we could start researching here? Approximate costs? Is it covered by some private health funds? And lastly, she's really worried about losing her hair. We've started looking at wig suppliers but they all seem so varied in terms of what's available and the pricing. Do you have any you would recommend? What cost are we looking at to get her a good natural looking one? I think that's all we have at the moment. I understand that there'll be support available along the way, but getting these questions answered before we get to the specialist will give us the best chance of being prepared. I'm one of five in a large, close knit family. Hopefully the support she'll get from us along with her amazingly strong mind will set her in good stead for the year to come. I hope you might hear from her on here very soon. I hope to hear from you soon. Cass

Hi Beck, I was diagnosed in April 2012, decided on mastectomy of left breast instead of lumpectomy and went through private system for surgery (also had a space saver implant inserted at the time of surgery) I had my chemo through the public system and couldn't falter it. I am due for reconstruction in April and will do that through private system. I too was concerned about the hair loss - lets face it who wouldn't be. I purchased a wig on Oxford St in Sydney and its beautiful but I actually never wore it. I felt much better bald wearing scarves or beanies rather than have to worry about if falling off or dealing with hot flushes. i have blog you and your family are more than welcome to read. hopefully it will give you all a laugh you can start here.. http://glynnandbearit.wordpress.com/2012/04/05/hello-world/ I had 4 rounds of chemo, no radio. Chemo wasn't as horrendous as i imagined. Everyone is different. Oh.. great book to read Breast Cancer Taking Control by John Boyages - you can actually get it here on BCNA site i'm sure. I can't comment on egg freezing as I've already had kids but yes definitely something she should explore. Feel free to send through any other questions you may have. And oh there is so much information out there sometimes its better not to dr google too much. Good luck, your sister is very lucky to have such great support already. love and light xox Sandra

Hi Cass Sorry to hear about your sister. I was diagnosed with breast cancer just over 12mths ago. I'm happy to share my experiences with you and hopefully they can answer so of your questions..... I have private health insurance and I have found my out of pocket expenses to be quiet minimal (I think I'm probably out of pocket less than $2000) I had a lumpectomy, mastectomy, chemo and radio..... When you go for surgery ask the anaesthesiologist to see if they will bulk bill. My hospital also did the chemo as an inpatient service so my private health cover covered this, I decided to go radio through the public jsystem and so this was all bulk billed.... For me the private system was great, had my own room in hospital and where I had the chem down was in a very in hospital like environment ( like a little cottage) if I had my time again I would chose exactly the same...I went to the mater hospital in Sydney and I couldn't give it a more glowing recommendation. I had lymph nodes removed but not many, I have had no side effects from this and from my point if view my surgeon felt it best that I do this to reduce the risk of it spreading so I followed her advice. Being young and fit will help her a lot in this process. I have currently got a tissue expander in at the moment, I'm going in next month to get my right breast removed (no cancer just a personal choice) and in December I will go back in, get the expanders removed and implants put in. My surgeon has done an amazing job and once again if I had my time again I wouldn't change anything. I think for me personally to have no reconstruction done and just have my breast removed would be very difficult to deal with....my reconstruction was done at the time of surgery, did the mastectomy and put the expander in at the same time...healed in two weeks and I was back at work. In regards to fertility for me, my biggest concern was getting rid of the cancer so I didn't want to prolong the treatment to harvest eggs. There is still a chance I will be able to have kids as the treatment didn't put me into early menopause....I will worry about kids when this is all over, my sister has also offered an egg donation if I have difficulty falling pregnant. Like I said for me getting rid of the cancer was my main priority. Yes with the chemo you will probably lose your hair on the upside you also loss your leg hair, under arm hair and pubic hair so no more waxing or shaving for a while!! For me once again losing my hair wasn't as bad as I thought, most days I just walked around bald... A lot of people do look at you and asked if I did shave for a cure but I didn't mind talking about and on the days I couldn't be bothered with people looking at me I wore a wig and with the wig people don't know at all... I went to the individual wig in Sydney and spent around $700 on 2 wigs, they were very natural looking and were comfy but as I said I did embrace my baldness and so didn't always wear them mainly for work etc... At the end of the day for me, it was hair it does grow back and I luckily had a well rounded head...my hair is now growing back and I think back to maybe shaving it off again...so much easier!! Lol.....my boyfriend has other ideas!! Your sister will find a lot of inner strength and she will surprise herself at how well she copes! She will have some down days where she hates what's happening but try not to get stuck to long in those feelings. For me I did t sit round asking why me...I did it, kept working only taking small amounts of time off and surrounding myself by people that care for me. It's a tough time but I'm out the other side and back to normal as far as my life prior to cancer. My mum refered to my cancer as an unwanted house guest which is pretty true... Anyway I hope some of this was helpful to you....if your sister wants I'm more than happy to show her pictures of what my reconstruction looks like. And if she has any other questions or wants to talk just get her to message me. Protect t yourselves from info over load, there is a lot of info out there which can be very over whelming, hopefully you have good doctors around and this network has great resources also. Anyway good luck with it all and feel free to get in contact if you want to chat anymore. Anna

Hi Cass, Sorry to hear about your sister, so much info and questions to take in, I had a mastectomy and reconstruction in the same operation last September. I was a private patient and was at least $5,000 out of pocket, I had 2 great surgeons and very happy with the result I had a tram flap reconstruction. I am going through Chemo at the moment and I am a hairdresser and live in Brisbane, I used a company called Starkles for a wig, it cost about $400 and I got some back from my health fund, they where very good, losing your hair is daunting but I have a great wig, scarves and caps to wear. Every ones diagnosis is so different, make sure you take a support person to all your medical appointments and write down all your questions as there is so much to absorb. It's great she has a wonderful supportive family to help get her through. Hope this helps Tracee

Hi Cass! Sorry to hear about your sis. But remember its not all doom & gloom. I don't know where to start. I lost my twin sister to breast cancer November 2012 and experienced many things with her along the way. She was amazing and always just rolled with it. Only 34 at diagnosis, she didn't save any eggs as time was pushing for treatment to start. Instead she took a tablet to protect the ovaries whilst she had chemo. Re: hair. She bit the bullet and donated her long locks to the alopecia foundation so they could make a wig for someone. She borrowed a wig from the cancer council (free), a cute little blonde bob. Later she preferred stretchy type turban headband things as she found the wigs hot to wear. These come in great colours from "starkles". A fabulous program is the "look good feel good". Look into it!!! She also had a single mastectomy thru the private system with reconstruction commenced at the time of her operation. I have also been diagnosed with breast cancer (nov 2012).. Double mastectomy on my 37th birthday (went thru private system). My recon also done at the same time. They leave tissue expanders insitu and slowly inflate them over weeks to a desired size, allowing your pec muscle and skin to stretch. Then a smaller second operation to replace the expanders with an implant is done some months later. I'm currently waiting to have my implants. My boobs (tissue expanders) look great, tho hard and feel alien as I lost sensation. By having it all done swiftly has made me feel better about my appearance. I had a total of 8 lymph nodes taken... All clear. And potentially need my ovaries out. I have kids so that doesn't worry me. Button up shirts, pj shirts etc made it much easier after the operation. Also stretchy type shorts, pants as her mastectomy arm will be weak and cause pain initially when she tries to pull up her own pants. I couldn't sleep in a bed for a month.. Usually a tummy sleeper and due to double mastectomy pain couldnt even slightly turn to my side to sleep. Was like a turtle on its back... completely stuck.. he he. So i slept in a recliner chair. Private system she will be outta pocket no doubt as I was but it allowed me to have my operation less than a week after my diagnosis. this gave me great comfort. hope I haven't overwhelmed u at all. I wish her and you all the best. Don't hesitate to contact me. Jodi

Hi there Welcome to the cancer club. Sad that you had to join. But know that in Australia the best care is given to you and everything offered to you is in your best interest. We live in a great time and great country. I went through the private system for surgery and chemotherapy at westmead private. My oncologist was relieved when he found out I had private health insurance. THe quality of care doesn't differ but the ability to find a car park space does. Almost impossible at the public hospital. Not an issue at the private. It depends on how much you value your time. Out of pocket expenses almost negligible. My private health fund and medicare covered all my surgeons expenses regarding the mastectomy. The anaesthetist was about $500 out of pocket but I didn't think to ask for bulk billing as suggested above. The out of pocket for me was not being able to work. But thankful that we managed well without needing to. I just finished chemo. I wore my wig whenever I went out. Has your sister enrolled in the look good feel better course. It is fantastic and you get great tips and free make up. I went to a wig shop in piccadilly mall in the city called wig affair. It cost me $450. The shop is run by hairdresses and they did a fantastic job picking out a wig that suited me and then trimmed it to my face. I have never had so many compliments about my hair in my life. Strangers have walked up to me and complemented me. Some friends asked if I could grow my hair to be like my wig. Unfortunately genetically impossible. So three things I recommend 1. Go to the look good feel better course, ASAP 2. Get a great wig, you can do this before your hair falls out 3. If you can go private do so. I also have a blog myjourneyupdate.wordpress.com Hope it doesn't bore you too much Let us know how you go. love Julie

Hi! I've got so many questions | BCNA Online Network

23 Replies

juliegl
Member
13 years ago
Was just thinking of you and your sister and wondering how it is all going? Hope you are well. Julie
juliegl
Member
13 years ago
Was just thinking of you and your sister and wondering how it is all going? Hope you are well. Julie
polkadotbowsoph
Member
13 years ago
Hi

I am sorry to hear about your sister, I was diganosed at 24 im 26 now if your sister needs someone to email for advice etc tell her my email is sophiepolkadotbow@hotmail.com

As sometimes its nice to hear from someone close to your age, who has gone through what you have gone through.

take care

sophie

xxx
Bollystolli
Member
13 years ago
Becher
Member
13 years ago
Wow! I'm so overwhelmed by all the responses. I want to thank each and every one of you for taking the time and the effort to write a response to me, sharing your experiences and giving some advice (and a lot of support). What an amazing group of women you are. I'm so glad that my Mum and I came across this site. It's been such a godsend in helping us gain an understanding of things so we can pass it onto my sister before next week's specialist appointment and surgery. The positive energy from each of you practically jumps off the screen.

I'm sure that I'll be back again soon to give you an update of how things are going and I hope that by that time, my sister may be ready to share her feelings with you as well. I understand that this is her journey and I'm here to support all her choices and decisions.

Thank you again.

Cass
SandraG
Member
13 years ago
hi Julie, thanks so much for your response. I've been a tad slack of late with the blog.

I hope it was of use to you - even if it was for a good belly laugh

-S
sillysam83
Member
13 years ago
You have been given alot of information. Hope your brains not gonna explode LOL. I was 28 when diagnosed and have been in the breast cancer world now for 2 years I have alot of knowledge, some my own experiences, some other peoples advice.

Firstly I would love to tell you about a private support group I started on Facebook for those diagnosed at a young age. When she is ready she can talk to other ppl around her age going thru something similar.

https://www.facebook.com/groups/youngpinksisters/

We are world wide and also offer local catch ups too, depending on where abouts you live. We have over 200 members and have people from every state in Australia. She could always message me directly too, if she ever wants to talk.

I think what you are doing to help your sister is amazing! Dont forget to look after you and your family too...

My first bit of advice I give is to document her 'journey' take photos, write stuff done etc. This has been a major thing that has helped me I think.I have a blog. https://www.facebook.com/groups/254999904591993/ Its great to look back and see how far I have come & how I feel Im not making progress, but I am, I can look back and see WOW Im better than I was. Or look how much my hair has grown. I know it sounds wierd coz you feel so low why would u wanna document that. But now looking back, its great.

I went public. I have had 7 surgeries, 6 chemos, 25 radiation sessions and heaps of appointments etc etc... No out of pocket expence and I get great treatment. See the same specialists/surgeons every time. However some public hospitals and some states in Australia, can be different. Im from Victoria and the difference between hospitals is amazing when talking to other patients. So it comes down to where you live? Find the right team for the job. The only thing that was out of pocket was IVF, which I was lucky enough to squize in between surgery and chemo. It was a very emotional experience, but very successful, I have 4 frozen embroys :-) Waiting for my body to be ready and finish all preventative medications in 5-10yrs. I dont regret doing it even tho it was a very rushed and emotional thing. it cost out of pocket maybe $3000. paid about $10,000 medicare covered it for me.

Talk to your team about recon - everyone is different - some choices are not suitable. I would love to speak to her about this privately. I went thru single masectomy with recon via tissue expanders (which are then replaced with implants) It is a very LONGGGGGGGGGG process, alot of surgeries, & your going to have 1 boob diff to the other forever. If she has the option to have a double mastectomy with implants thats a better option I think mentally and physically. I think for her age implants are the best option and if her DR would do a double I would strongly think about it. I can give a list of con's v's pro's on this subject. depends on alot of things, but some specialists will make u wait until after radiation to have recon. I strongly suggest talking to the surgical team ASAP

Just some things to think about to get you and your family thinking.

Like I said always here for a good old chat.

Shes very lucky to have you all...

Merylee
juliegl
Member
13 years ago
Hi Sandra

I just read your blog and was laughing so hard it made me cry. You and your husband had such a great and funny approach. Thanks for sharing this with us.

Love

Julie
Laura13
Member
13 years ago
Hi Cass,

sorry to hear about your sisters diagnosis. i am 32, and i have recently been diagnosed with breast cancer - a week before christmas. i joined this forum last week and have been working up to making a post. its a lot easier to start by responding to your questions! i have found these last few weeks overwhelming in terms of information, appointments etc. and know how your sister is feeling. my sisters have also been a great help to me through this time :)

I had surgery on 2nd january, and now going through the process of freezing some eggs before i start chemotherapy. i have recently been asking many of the same questions as you. here are a couple of comments that might be useful - everyone's diagnosis is different though so it might end up being different for your sister too.

- i'm going through the public system. it has been great so far. some advice from a friend who is an oncologist was that for cancer, the public hospitals, especially in big cities, are very good. so far i have certainly found this - no waiting time, my own room on all ocasions, experienced surgeon and very supportive breast nurses.

- about a week after the surgery (lumpsectomy) i went back to hear the results of the tests they had done of the removed tissue. At this point, i met the encologist and they were able to give me a clearer idea of the sort of follow treatment i needed, and confirmed that chemo would be required. That is when they set me up with an appointment to see the fertility team at the hospital. hopefully there will be someone who can speak to your sister at this point and talk her through the options and process of egg freezing.

- Depending on the timing of surgery and urgency of going into chemo, it is sometimes difficult to fit in the whole process. it seems that it takes about a month to get it all done, beginning from the first day of your period, so that is something to talk over with your breast nurse.

- when it is 'medical' reasons for freezing eggs, the costs are reduced. there is also a $500 discount for public patients, and a big chunk of the cost of the process is covered by medicare and is refunded a few days after you pay it. i have worked out that to freeze eggs will cost about $3000 after all the refunds come back. if you decide to do ivf later, it costs you per try (and it may take many trys) but there is a good chance given your sisters age that she may not need the ivf part. i guess freezing eggs now is like an insurance policy.

- melbourne ivf has a website with a lot of info on it.

http://mivf.com.au/fertility-treatment/fertility-preservation

i hope some of this helps. it is such a roller coaster of emotions at this time, for me the more i talk about it the easier it is to accept and just get on with things. all the best to you and your sister.

laura x
Laura13
Member
13 years ago
Hi Cass,

sorry to hear about your sisters diagnosis. i am 32, and i have recently been diagnosed with breast cancer - a week before christmas. i joined this forum last week and have been working up to making a post. its a lot easier to start by responding to your questions! i have found these last few weeks overwhelming in terms of information, appointments etc. and know how your sister is feeling. my sisters have also been a great help to me through this time :)

I had surgery on 2nd january, and now going through the process of freezing some eggs before i start chemotherapy. i have recently been asking many of the same questions as you. here are a couple of comments that might be useful - everyone's diagnosis is different though so it might end up being different for your sister too.

- i'm going through the public system. it has been great so far. some advice from a friend who is an oncologist was that for cancer, the public hospitals, especially in big cities, are very good. so far i have certainly found this - no waiting time, my own room on all ocasions, experienced surgeon and very supportive breast nurses.

- about a week after the surgery (lumpsectomy) i went back to hear the results of the tests they had done of the removed tissue. At this point, i met the encologist and they were able to give me a clearer idea of the sort of follow treatment i needed, and confirmed that chemo would be required. That is when they set me up with an appointment to see the fertility team at the hospital. hopefully there will be someone who can speak to your sister at this point and talk her through the options and process of egg freezing.

- Depending on the timing of surgery and urgency of going into chemo, it is sometimes difficult to fit in the whole process. it seems that it takes about a month to get it all done, beginning from the first day of your period, so that is something to talk over with your breast nurse.

- when it is 'medical' reasons for freezing eggs, the costs are reduced. there is also a $500 discount for public patients, and a big chunk of the cost of the process is covered by medicare and is refunded a few days after you pay it. i have worked out that to freeze eggs will cost about $3000 after all the refunds come back. if you decide to do ivf later, it costs you per try (and it may take many trys) but there is a good chance given your sisters age that she may not need the ivf part. i guess freezing eggs now is like an insurance policy.

- melbourne ivf has a website with a lot of info on it.

http://mivf.com.au/fertility-treatment/fertility-preservation

i hope some of this helps. it is such a roller coaster of emotions at this time, for me the more i talk about it the easier it is to accept and just get on with things. all the best to you and your sister.

laura x