Forum Discussion
Hi! I've got so many questions
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
23 Replies
- Was just thinking of you and your sister and wondering how it is all going? Hope you are well. Julie
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 [email protected]
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
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
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
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
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
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
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
