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

[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

[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.

[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

[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.