Hi! I've got so many questions

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

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,

Your sister's story sounds very similar to mine.  My lump was in the milk ducts as well.  The best advice I can give you is this:

 make sure that she is put in touch with a breast care nurse, this will be a valuable relationship to have.

Go along to her appointments with her, as it will valuable to have someone else there when hearing about treatment options.

Also it helps if you have a surgeon who you can get along very well with and doesnt mind explaining things to you mutlipy times.

And the Cancer Council in your state is very handy to visit, and  also we are all here to answers questions for you.

Wishing you all very best, and don't forgwt to take care of yourself as well!

Donna xo

Hi Cass,

I am very sorry to hear about your sister, but as you can see there is a lot of support. I dont want to add too much to your overload but just wanted to specifically add one thing which noone else has mentioned yet. Check whether there is a McGrath (or other) breast nurse in your area. They are very knowledgeable and supportive and they are often involved with the oncology team looking after you. I have had several breast care nurses and they have all been wonderful. 

As for the hair, it is a bit of a shock to begin with but you get used to it very quickly, for the most part, and it grows back. I tried a wig but didn't like it, so just used caps etc. There are some quite fashionable ones out there. This is where I got mine Beaux Chapeaux Headwear in Wollongong area , they do a website with a postal service (not sure if I was allowed to post their website address here), but there are lots of places around. PM me if you need the address.

There is also a fertility information page here http://www.bcna.org.au/about-breast-cancer/young-women#fertility

Please feel free to contact me if you want to chat. I have had lumpectomy, bi-lateral mastectomy, genetic testing, chemo and hysterectomy...all in the public system which I found just fine.

Anyway, I wish your sister and all of your family all the best. Please let us all know how you are getting on. Hang in there, we will be thinking of you.

Take Care,

Julie xo

Hi Cass,

I am very sorry to hear about your sister, but as you can see there is a lot of support. I dont want to add too much to your overload but just wanted to specifically add one thing which noone else has mentioned yet. Check whether there is a McGrath (or other) breast nurse in your area. They are very knowledgeable and supportive and they are often involved with the oncology team looking after you. I have had several breast care nurses and they have all been wonderful. 

As for the hair, it is a bit of a shock to begin with but you get used to it very quickly, for the most part, and it grows back. I tried a wig but didn't like it, so just used caps etc. There are some quite fashionable ones out there. This is where I got mine Beaux Chapeaux Headwear in Wollongong area , they do a website with a postal service (not sure if I was allowed to post their website address here), but there are lots of places around. PM me if you need the address.

There is also a fertility information page here http://www.bcna.org.au/about-breast-cancer/young-women#fertility

Please feel free to contact me if you want to chat. I have had lumpectomy, bi-lateral mastectomy, genetic testing, chemo and hysterectomy...all in the public system which I found just fine.

Anyway, I wish your sister and all of your family all the best. Please let us all know how you are getting on. Hang in there, we will be thinking of you.

Take Care,

Julie xo

Hi Cass

Most of the other ladies have already covered most of the issues that your sister will face.  It is a very daunting time and the amount of information and the decisions that you need to take is quite overwhelming.  What I would say is take each day as it comes.  Try not to think too far in advance.  Get through the surgery before you worry about having chemo/radiation as that is enough to think about at this stage and the chemo/radiation will be done later and there is nothing that you can really do to control that.

Your sister may not need radiation if she has a mastectomy (i've had two mastectomies, 7 yrs apart and never had radiation).  Generally if they can get clear margins then they don't do radiation.

Chemo is a very scary prospect.  I found losing my hair to be more upsetting than losing my breast!  I had my two sons shave my head (which they thought was hilarious and I thought was devastating) about a week after my first chemo session.  I put on a brave face for the boys but ran upstairs and cried my eyes out once it was done!  I wore a wig most of the time as this kept my family more comfortable but I also went bald a lot at home.  When I went out, I almost invariably wore a wig.  I worked all the way through my chemo and my clients (I'm an accountant) didn't realise that I didn't have my own hair!!  I bought two wigs from a US website (makemeheal.com) and I also borrowed one from the Cancer Council Wig Service (free of charge).  You can go in and see the Cancer Council ladies before she loses her hair and choose one that is close to her own style (or try something completely different if she wants to!).  They are so helpful and you can use the wig for as long as you need it.  The wigs look lovely and natural too.

I went private for both my breast cancers and was definitely out of pocket but probably only about $2000 each time.  I was more comfortable to be able to choose my own surgeons etc and have a private room for my recovery.  I had reconstructions done both times.  The first time was a delayed reconstruction due to an allergic reaction that I had in my initial operation.  I wore a prosthesis for about 4 months and absolutely hated it!  My reconstructions were both different kinds (one TRAM flap and one Lat Dorsi) but both look very realistic.  My second reconstruction was done at the same time as my mastectomy - with my lat dorsi muscle and expanders inserted, then a subsequent small operation to replace the expanders with permanent prosthesis.  If you have any questions, please feel free to ask :)

With the lymph nodes, generally when you go into surgery the surgeon will at the very least do a "sentinel node biopsy" which involves taking the first node that the area drains to to see whether it contains any cancer cells.  If this is clear then the won't take any more lymph nodes (other than incidental ones which are taken as part of the mastectomy site).  I only had my sentinel nodes taken each time.

I can't help with the fertility side of things.  I was 35 the first time that I had BC and had already had my kids.  I'm sure you will get advice from others though.  Chemo didn't put me into menopause and my ovaries are still working perfectly fine now (I've just turned 45).

Tell you sister to keep a positive mindset as this really helps in the way that you cope with everything that is going on and with the recovery.  I was surprisingly ok when I woke up after my first surgery with only one breast, so if she can't have a reconstruction straight away, tell her not to be too worried.  By the way, if she has to have radiation, they generally won't do an immediate reconstruction...

Keep in touch and let us know how she goes and if she has any questions, you know where to come.

Take care,

Louise x

Sorry Cass... not sure where i got Beck from there - blame chemo brain. xo