Seeking support and friendship

Dani1981

Hello lovely people,
My mum was diagnosed with early breast cancer last Thursday. I felt a rush of mixed emotions and thoughts. I felt scared, upset, sad, and isolated. My dad passed away just over a year ago and that left mum, my sister and me. My sister is not very helpful. She has her own health issues. So it's up to me, mainly, to support my mum through this. My mum is a fighter, she's the strongest person I know, she's been through so much. I'm so proud of her and how far she's come in life. 
I'm just so confused, and don't really know how I should feel. The doctors are being really positive and said that the cancer is quite early and a small lesion. The surgeon is planning on operating. And then maybe radiotherapy. But we will know a lot more after they excise the lesion. The reason for being confused is: I don't know whether we should go private or public. Finances are not an issue. 
I also feel guilty. I feel guilty about writing on here and reaching out, when there are so many stories of people who are going through a lot worse. I feel like a fraud. But cancer is cancer. My mum has always prayed that she shouldn't get it. So now that she has, I don't really know how scared she is, and how she is going to get through this. There is always going to be that fear that it would come back after treatment.
I guess I am just reaching out, to anyone who is going through a similar situation. 
Thanks for reading.

Sister

Welcome @Dani1981 Firstly, you're not the only family member on here who is reaching out and I'm sure others will get on board.  Cancer is cancer and it's bloody scary.  Scary for your mum and scary for you.  But breathe.  Early is good.  Your mum will probably have some tests and scans coming up.  Until they've done the surgery, they are still operating on what they can see from the scans.  Once the path report comes back, they will have a clearer picture of the cancer and your mum will have a better idea of her treatment plan.  You must already have a surgeon so I guess that your question about public or private is probably not about that.  For radiation, I would definitely go public.  In my experience, and from what I have heard from others, you don't really get anything more from going private (except maybe the moisturiser supplied) and it can be thousands - you cannot claim it on your health fund.  If you put your region (your mum's) on your profile, you will get info better targeted for you as obviously I cannot speak for other places.  Your mum is very welcome to come on this site but if it's not what she can do at the moment, then that's the way it is and it's great that you are looking out for her.  It's really important for most of us to have someone who can be our advocate when things get too much, and to be another pair of ears at appointment.  Take care.

Annie C

@Dani1981

Your sentence "cancer is cancer" says it all. It is cancer. It is frightening. It really does not matter if you are the one with cancer or the carer of one with cancer. The shock is real.

As someone who is now a cancer survivor (year 2) all I wanted from my carer was to stand beside me, walk beside me and put an arm around my shoulders when I faltered. 

Let your mum be your guide. If she wishes to talk, let her talk, it will be her way of processing this. If you can and your mum wants you to, please do go with her to the many appointments. There is information overload and I found that with the shock of the diagnosis I did not take in all the information given.

Never feel guilty about reaching out on this, the most supportive forum. We are here for you and your mum. 

Ask all the questions or doubts that you have. This forum is a wonderful warm supportive group of people who 'get it'. 

Someone on here will have the ideas, knowledge, information or personal experience that you are seeking.

I went public and I cannot not fault the care I received in the public system. My treatment was complicated by the fact that I live 2,300 from my treatment centre. However the Breast Cancer Centre in a  large public hospital worked with me and my GP to ensure that I received excellent care.

 What a wonderful loving daughter you are. Your mum is one very lucky lady.

Warm Kimberley wishes to you. 

Annie

arpie

@Dani1981 - as @Sister and @Annie C have said - welcome to the site - and NEVER feel guilty about putting questions up - if we can help you & your mum have an 'easier path' at this early stage of diagnosis & surgery - that will be a bonus.   

Hopefully we'll be able to help lessen the impact that this shitty disease has on both you and your Mum, as you help her thru it.  If you are going with her to appointments, consider recording them on your phone to 'go over' at a later date, if required, as it is very difficult to take it all in on the actual day.

Re Private or Public - there can often quite large 'out of pocket' expenses with private surgery (I'm up to about $6000 now with my private surgery & other gaps.)  So make sure you ask your surgeon - what the gaps are if you go private & also if he works in the public system (most do.)  It may mean a small 'wait' of a week or so for the surgery .... but this should not affect your Mum's outcome at all (except that you can use the money that is saved - to take your Mum off on a great holiday at the end of her active treatment!)     I went public for my radiation & couldn't fault it.

Well done for stepping up to the plate & helping your mum thru this - I am so sorry to hear of your Dad's passing.    

Take care  xx

Chris51

20 years ago I was in your situation with my mum. It was an extremely traumatic time and I still carry the stress and anxieties that we went through together. My mum was 80 when diagnosed and I really don’t think she ever accepted the diagnosis. Last year I was diagnosed with breast cancer - what a bugger! Given mum’s age and my age at diagnosis (67) they don’t believe there is the genetic factor - all seem to put it down to ‘bad luck’. The last 12 months have been a very anxious and stressful time as I moved through the treatment plan, I am now in a pretty good place although am feeling somewhat anxious as I approach my 12 month scan. I actually think I coped better with my own diagnosis than that of Mum. It is so complicated when you are the support person because we have to respect the feelings and decisions of the other person.  I remember saying to mum to write down all her questions and she was most upset with me because in her words, the doctors know best, and it is rude to question them! I was reluctant to ask my questions over the top of her.

My breast surgeon is private and I too ended up with about $8000 out of pocket expenses. My situation became a bit complicated and as a result was referred on to a public oncologist. I could not believe the level of care, compassion and treatment received by a large number of practitioners in a public hospital. I also felt guilty walking out and not paying a cent. The first PET scan I had cost me around $900, when I had the second 12 months later as a public patient, there was no cost. I will continue with my private breast clinic and accept there will be a cost involved, but I cannot fault my oncology care at a public hospital so will continue with this. All doctors are very happy about this and there is regular communication between them. They continually tell me it is the patients choice as to who they see, and it is important that this is your choice.

Make sure you take some time for you while supporting your Mum. The treatment plan seems to go on forever, and if you are anything like me, even the in between times were a constant worry for me as to how my mum was coping.
I lost mum 20 years ago now, but I have no regrets about the time I devoted to her at a time of great need. 

I hope you also have a strong support system around you.
Best wishes to you and your mum.

kmakm

@Dani1981 You come on here whenever you need. This forum is for anyone affected by breast cancer, you don't have to actually have it.

As the others have said, be guided by your mum, but don't be afraid to push a bit. Some people diagnosed seek to 'protect' their loved ones by not talking about it, even if they want to. She might want to talk, but not to you! Don't be offended.

There is no 'right' way to feel. You feel what you feel, and like many life experiences, your feelings will change over time. Feel all the feelings! And if you need support just for you, don't hesitate to find it.

Breast cancer is the most commonly diagnosed cancer in Australian women. One in seven of us will be diagnosed with it. Your mum will not be the last person you know to have it.

Early diagnosis is good, no spread is good. Please, please, please don't waste your time and emotional energy in feeling guilty. Cancer sucks arse no matter how it touches you. My mother was diagnosed when I was 20 (in 1986) and it was bloody scary. So cry, scream, get furious or whatever you need to do, with people you trust and know you can rely on. Speaking as a mum who had breast cancer, it was a help to know my children were venting their feelings and being supported by their friends, so do tell your mum that your mates are looking after you and to not worry about that.

I went private, virtually blindly, and would not do it again (though I wouldn't change my breast surgeon for anything). We all have different experiences, but my overall impression is that the care and support in the public system is better, more comprehensive.

Do let us know what town or city you're in. Someone may be able to give you some local advice. For example, I'm in the outer-east of Melbourne. We have an excellent breast and cancer centre attached to the local public hospital. They have a community counsellor and breastcare nurses who could talk to you if you wanted to make an appointment.

Does your mum have a breastcare nurse yet? They are usually happy to talk to and support all members of the family. You could also ring the McGrath Foundation and ask to speak to the nurse for your area. Breastcare nurses can be a bit hit and miss, but the good ones are worth their weight in gold. If you see a private breast surgeon they often have them attached to their service.

The biggest of hugs Dani, K xox

kmakm

@Formymum19 You may like to read through this recent thread. K xox

kamada

@Dani1981 Hello and welcome! I am a few months further along than your mum also with early stage but will have the whole gamut of preventative treatment. I think you are a similar age to my wonderful son so am drawn to sharing our experiences as a family. Nearly 7 years ago he was told he has MS and we were shattered. It has been a roller coaster ride with him as he has had success in keeping MS in remission with immunotherapy but awful and ongoing side effects. His beautiful partner(now wife) and my husband and I went your present journey with him and early on agreed that as a team we were stronger. We agreed on no secrets and after every appt they shared all details so there we could deal with knowns. We also agreed to acknowledge how we felt and so could help each other when one was struggling to look at the end goal. Now my diagnosis has added to what we have to deal with and caused tears and fears again. However by continuing the same way and recalling how much it helped me with being a support but helpless to change the situation I find that now the roles are reversed it is a great relief to be able to dip into the love and support that surround me knowing we are all on the same page. I went to a psychologist after his diagnosis and the CBT strategies she taught me then have stood me in good stead now. It also helped me unload those initial intense emotions on someone not directly impacted so I didn’t have to hold back for fear of adding to my loved ones problems. You can get up to 10 subsidised visits with a mental health plan from your gp if you think it would help you too. I can see the love you share with your mum and like me she is regarded as a strong person so you will find your way together and be stronger for the sharing of all the ups and downs of the roller coaster ride ahead. We find many things to feel lucky for along the way (especially the arrival of a beautiful baby this year) and I am sure you will too. Your mum’s first one is having you as her daughter - trust me! Thinking of you both. 😘

Anne65

@Dani1981 Sending you & your mum lots of love & strength. As has been mentioned, there are quite a few support people on this forum which just goes to show that cancer not only effects the individual but also family & friends. We are all here for you & will give you all the support & help you need. Your mum is so lucky to have a loving daughter like you & you will get through this together. You have all been through a lot in the past year with the loss of your Dad so I can only imagine the grief & anxiety you feel right now. 
One thing which is a positive is that the cancer has been caught early which is a big plus. My cancer was caught early also so I ended up having a lumpectomy. As my surgery was a success & my margins were clear, I only had radiation for 3 weeks with NO chemo & NO medications. I didnt even really need radiation but my cancer was aggressive so i decided to go ahead. Hopefully your mum may have an easy road ahead so try & think positive as hard as it is.
I learnt early on to only focus on the things I do know & not what may happen in the future. You have to deal with so much so its good to not worry about the "unknown" as it may never happen. Things change all the time through this "journey" so try not to overthink too much.
A far as public v private goes, everyone is different & has personal choices. i went to a private hospital for surgery & paid NOTHING for the entire procedure. I also went private for my radiation. It did cost me around $3k but i was happy with that as it meant I could choose my location & time of my daily treatment which was important to me as I live in regional SA. I was looked after extremely well getting a private waiting area & nurses who saw me every day before or after treatment to check me out.
 I know many others on this forum who loved the public system & swear by it & I think that is great that we have options & they are both wonderful so I guess the decision is up to your mum. Ask questions & get advice from her medical team but the decision is up to you.
I wish you & your mum lots of prayers, love & strength. take care xx

Dani1981

Thank you to all you lovely people who replied to my thread. I’m sorry that I wasn’t able to reply earlier but your words really touched my heart. I no longer feel alone, and I’d love to update you all who are listening:
So we decided to go private. And we saw the surgeon on Wednesday. He said that he would be looking to cure my mum from the cancer. I guess he can’t say that he WILL cure her but I took it as a positive outlook.
But, the opinions of others, and ideas they come up with... for instance, some of our family are suggesting a mastectomy. Now it was a shock to think of something like that, but even when i get past that shock, I still think it’s drastic. The lesion is 5mm in diameter! And I know that I’m not the expert in all this and I’m not the one going through it. But my argument is that if it was an option that would improve the chances of success - the surgeon would have brought it up, wouldn’t he? I’m going to ask the question at the next visit. Maybe I’m trying to own this? I’m not sure. What does everyone think? 

Beryl C.

Dani1981 - ask your Mum's surgeon to explain his preferred procedure and his reasons for his preference. It is always ok to ask and if you don't understand ask again - these 'meetings' can be very stressful so always take notes. Take care with the ideas of others and their suggestions - you may find this clogs up your clarity - boundaries are crucial and its ok to say 'no more suggestions'.

Blessed72

@Dani1981 the treatment is normally aligned with the category of breast cancer, that is invasive, non-invasive and also the various stages. I think first time treatment for non invasive is lumpectomy, followed by radiation...but this also depends on the area of affected breast tissue. Mastectomy does give a high chance of non-reccurence bit then again it all depends on factors as outlined above. Just ask questions on treatment options, risks involved, treatment success rates etc. At the end of the day, every person is an individual and statistics are there just as an indicator or guidance for the decisions you will make. Good luck to you and your mum.

Sister

The current thinking in breast cancer treatment is to be as minimally invasive as is deemed safe so where once a mastectomy would have been the only option, the surgeon is likely to go for lumpectomy with sentinel node biopsy if it looks to be containable, then reassess the situation should things look different under surgery or following the pathology report.  I'm guessing that this is what is happening here but ask your Mum's surgeon to be sure.  It might be best to remind people that your Mum is acting on the best current medical advice and that much has changed about bc treatment in recent years.

Anne65

@Dani1981 i totally agree with what @Sister has said above. We both attended a BCNA conference in Adelaide a few months ago & this was something we learnt from the medical professionals who spoke. Treatments are now changing & they are opting for the less invasive where possible. It makes sense really, why cut off your leg if youve only have a sore toe!!
Prior to my surgery, one of my local GP's spoke to me about getting a mastectomy over a lumpectomy to reduce the risk & it freaked me out as like your mum, mine was caught early but was aggressive. I was shi......ing myself on my way to my first appointment wondering what decision I would have to make. i was over the moon when my wonderful surgeon straight out said to have a lumpectomy without a doubt. She also took some tissue from below my breast to fill in the gap so you can hardly see anything.   
I would say your family are worrying & only want the best outcome to ensure the cancer is gone & doesnt come back, which is fair enough but it is your mum's decision. Write down all your questions for the surgeon to ensure you have all the facts. Your surgeon will have an opinion on their preferred course of action depending on the risk factors involved & the pathology report but your mum has to be comfortable with the surgery option. Good luck & sending you both lots of strength & positive thoughts. Let us know how you get on & what you have chosen to do. You are doing an amazing job for your mum. xx

primek

Honestly for smaller lesions a lumpectomy  with radiotherapy the outcome is the same as mastectomy. And these days not all cancers are treated with radiotherapy either..and yes, the surgeon would have suggested if he thought it was the better option. 
People believe mastectomy elimates metasteses risk...but sadly the stats do not support that. ..the risk is the same for both.
I chose mastectomy because I wanted to avoid radiotherspy (i live 500k from where it could be done) and my tumour wasn't seen in the mammogram so I was concerned if another or local recurrence happened it would not be found. I knew the stats were pretty much equal.