I can't find a doctor to take me seriously, and everyone else thinks I am crazy.

[lilima]

I have breastfed two babies, and I am not having any more children.

My mum went through breast cancer, and in the end had a double mastectomy and reconstruction.Then not long after that, my aunt was diagnosed and had to have a mastectomy as well.

So that is 100% strike rate in her family, as it is only her and her sister.

I have talked long and hard with my mum, and both of us think that me considering a double mastectomy and reconstruction isn't a bad idea. I have watched them both so sick, and think that it is stuck in my mind that I too will end up with breast cancer as well.

I spoke to my GP, who fobbed me off. I have spoken briefly with mum's specialist, who thinks I am crazy and too young.

This is not something that just popped in my head that I thought was a good idea. I really have thought it through.

So can anyone either recommend someone in melb, or know how I can get more info on the matter? I have sent an email to the cancer council so hopefully they will get back to me soon.

Also does anyone know what the costs are involved in the matter? As that is what it will come down to. Be it two healthy breasts, I may not be covered under medicare.

[Miss.September]

I found a lump last year while breastfeeding and my GP sent me to Caroline Baker in East Melbourne. She was wonderful, made sure I was happy with what she said, and gave me the honest impression that if I hadn't have been happy with her advice, she would've done what I wanted. I did have to get referred to her. I'll PM you her details.

Hope everything works out for you.

[lilima]

Thanks for the info

[krisp]

Wow!

Firstly let me say I take you seriously and I certainly don't think you are crazy, quite the opposite in fact, I think you are being totally rational and forward thinking.

I have had breast cancer, was diagnosed at 32y.o. so classed as "young". The thing is breast cancer doesn't care about your age, it doesn't discriminate on race, religion, it doesn't care about whether you've had children, are married and as the incidence in men is rising it doesn't even care what sex you are!

My heartfelt advice for you...

Before you go down this path there is one very important detail to find out - and that is if your Mum and Aunt are carrying the gene fault associated with breast and ovarian cancer called BRCA1/BRCA2. This is a gene change or fault that is inherited and if you possess this gene change then the risk of deveoping breast cancer at some stage in your life is increased. It is important for you to know crrying this gene change DOES NOT mean you will get breast cancer or ovarian cancer it means you are at increased risk.

Speak to a family cancer centre, they can arrange counselling for you and help you make this decision and also arrange the blood test to check for the gene fault. There are 4 family cancer centres in Melbourne and I'm sure there would be others in rural locations.

Austin Health Genetics Service
Austin Hospital, Studley Road, Heidelberg 3084
Tel: (03) 9496 3027

The Peter Mac Familial Cancer Centre
Peter MacCallum Cancer Centre, St Andrew’s Place, East Melbourne 3000
Tel: (03) 9656 1199


The RMH Familial Cancer Centre
The Royal Melbourne Hospital, Grattan St, Parkville 3050
Tel: (03) 9342 7151 Fax:

The Southern Health Familial Cancer Centre
Southern Health / Monash Medical Centre, 246 Clayton Rd, Clayton 3168
Tel: (03) 9594 2009

The surgeon I see for my regular check ups in Melbourne is wonderful and very understanding, I'm sure you would like her. Her name is Dr Jenny Senior and she is based at Cabrini Private Hospital, Suite 7, Cabrini Medical Centre, 183 Wattletree Road, MALVERN VIC 3144, Phone: 03 9576 0617.

If you do go ahead with this I can also recommend another surgeon specialising in breast reconstruction following breast cancer Dr Gillian Farrell based at Cabrini Medical Centre, Suite 4, 243 New Street, BRIGHTON VIC 3186, Phone: 03 9591 0255.

Lastly I wish you all the very best with this decision. It's one which is so incredibly hard to make and so very personal.

Remember you are not crazy, your fears are legitimate and keep shouting until you are heard. It could save your life....xxxx

If you want to chat feel free to PM me.

[LimeSlice]

Have you had the test for the gene? Did you mum and sister breastfeed? Breastfeeding significantly reduces your risk of breast cancer.
But personally, I would have the gene test, rather than just going on the family history alone.
You will most likely need significant counseling - the plastic surgeon wouldn't do it I hope without you going through this process - it is major life changing surgery and they will have to make sure you are in the right headspace.
I doubt it will be covered by medicare, as it will be considered elective cosmetic surgery.

I would speak with your GP about getting the gene test done, and go form there, and if he laughs at you, tell him you don't pay for that, you pay him to give you the referral you ask for. If he refuses, find one that will. It is not so rare these days for women at risk to have double mastectomies without any sign of cancer at all, based purely on family history and presence of the gene or not.


On a different note entirely, how does your husband feel about it? It will affect him and your sexual relationship also (obviously not your biggest priority compared with cancer, but a consideration none the less)


ETA: Have you considered simply having quarterly ultrasounds and breastchecks, with yearly mamograms to monitor rather than going to such drastic lengths?

[lilima]

Thanks everyone for your replies. KIris - Firstly - thank you for sharing your story. I hope that you are now fit and well. Yes I will be having the test done for the BRAC genes, but I think regardless of the outcome, it is something that I still want to do.

Lime - you make a good point about the mamograms, but it the whole going through chemo, and all the other vigors of ongoing tests etc, that I really do not want to do. My mum said that she strongly thought that she wanted a mastectomy when she was a similar age to me when she found a lump. The lump turned out fine, but no one took her seriously back then and she did end up with breast cancer.
My husband thinks that it is something that I should look in to, as he too was there through my mum and Aunt being so sick.
My mum has had a reconstruction, and to be honest, you can't even tell the difference, in fact her boobies look better than they did before!!!

I am at the start of this process, but I will seriously start looking in to it stating with genetic testing.

[LimeSlice]

Have a look here: Cancer.gov Factsheet Prophylactic Mastectomy.

It mentions that there are some drugs available to lower risk in high risk women, another option your doctor may suggest, thought you might like to look into.

[HotI]

I would speak with your GP about getting the gene test done, and go form there, and if he laughs at you, tell him you don't pay for that, you pay him to give you the referral you ask for. If he refuses, find one that will. It is not so rare these days for women at risk to have double mastectomies without any sign of cancer at all, based purely on family history and presence of the gene or not.

A GP can't just write a prescription for a genetic test. You need to go through a genetics clinic. This is because genetic info is special in that you knowing your results may have implications for other family members.

There are a number of genes that can increase your risk of cancer. For a non-affected person to have predictive genetic testing, the family genetic mutation (from one of the family members who has had the genetic cancer) needs to be known.

Has your Mum or Aunty had any genetic testing? How old were they when they were diagnosed? Are there any other family members with other cancers? What types? Did your Mum have cancer in one breast or two? All these questions can help determine your risk, which will affect what options (publicly funded) will be available to you. (i don't mean write the answer here, but just letting you know things that will be important)

[mrsmac]

You need to have a blood sample from a relative who has survived the disease to have the genetic testing. I was supposed to get it done as my mum had ovarian cancer and her mum had breast cancer, mum had already died but grandma was still alive- sadly because the wait for an appt was quite a few months Grandma died suddenly 3 days before the appt so i couldn't be tested. I wish I could have because grandma's mum died of cancer of the uterus in the 40s and i suspect it could've been the same kind of thing.

I would definitely get the testing done first.

[AnyDream]

Take a look at the Pink Hope website.

Welcome to Pink Hope, we are an online community that provides accredited information and support for young individuals who are at a high risk of Breast and Ovarian Cancer.

There is loads of info on this website, and their online community might give you some pointers re finding even a GP in the first instance who will take your request seriously and put in some time and effort to give you a referral a) for genetic testing, and b) to a breast surgeon and good plastic surgeon so you can discuss your mastectomy and reconstruction options.

It's important to note that newer & more sophisticated screening techniques like MRI are now funded under Medicare for young women with immediate family history of BC, so it's important to understand all the options - regular screening, preventive treatment like tamoxifen, as well as the fullness of what surgery with or without reconstruction entails. Then and only then will you have the info you need to make a decision on this scale.

I had a unilateral mastectomy and reconstruction after being diagnosed with breast cancer at age 37. I had it done in the public hospital system by an excellent surgeon (widely thought to be one of the best if not the best in the state) - I'm not sure but I think he may also do preventive breast surgery too. So explore your public hospital options because reconstruction esp can be very costly in the private system, health insurance companies are appallingly stingy in this regard. Feel free to PM me with any questions you have either now or in the future.

[AnyDream]

ETA - if you are considering BRCA gene testing, please make sure you have though about income protection or life insurance before you do, if you wait until later (once you know you have the gene) you may never have access to such insurance again.

[boomba]

ETA - if you are considering BRCA gene testing, please make sure you have though about income protection or life insurance before you do, if you wait until later (once you know you have the gene) you may never have access to such insurance again.

Definitely do that!

My friend has just undergone this surgery, She is 25. she had the gene testing done beofre her life insuance and now they wont cover her She had both breasts removed but unfortunately she had an infection so had to be reoperated on and the spaces taken out so she has to wait 5 mths...but like she says she would rather that then having cancer!

Good luck hun Hope you dont carry the gene x

[Mother Goose]

There is a breast clinic at St Vincent's (Public) Hospital - you could contact them to see what they say from a public hospital perspective.

I think also take you seriously. It isn't a decision to take lightly and it certainly seems you have considered it well. Some of the other posters have raised some important issues for you to also consider (I wouldn't have thought of the life insurance aspect!). Continue to do your research and keep knocking on doors hon.

MG

[lilima]

Thanks everyone for the comments. I have a lot of reading to do

[HotI]

I would recommend talking to a genetic counsellor. If you are still checking stuff out yourself there is also a risk calculator on the National Breast and Ovarian Cancer Centre (NBOCC) website that explains the different contributors to risk of getting breast or ovarian cancer and can give you an estimate of your risk, and ways to improve your chances (like breastfeeding).

Your risk and breast cancer - NBOCC

[lilima]

I just did the risk factor test, and I am on the higher side of being at risk. Be it that I don't drink at all, have breastfed for more than 12 months, and my BMI is in healthy range is all good for me, but still enough risk for me to look in to this further.
Thanks Kate

[ezymay]

I have no advice but just wanted to say I don't think you are crazy. Its your body and your choice. There was a documentary recently on this topic, called at my mothers breast I think. It was very interesting and thought provocing. All the best.

[AnyDream]

I would recommend talking to a genetic counsellor. If you are still checking stuff out yourself there is also a risk calculator on the National Breast and Ovarian Cancer Centre (NBOCC) website that explains the different contributors to risk of getting breast or ovarian cancer and can give you an estimate of your risk, and ways to improve your chances (like breastfeeding).

Your risk and breast cancer - NBOCC

Yeah except it's actually a pretty crude calculator, by its reckoning I should still have 2 boobs.