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Preventative Mastectomy

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#1 Bendersmum

Posted 13 March 2019 - 05:44 PM

My mum has been having treatment for breast cancer for the last few months. She's doing really well but it's definitely knocked her around. Next up is radiation and then fingers crossed she's all done.

Last week my sister was diagnosed with breast cancer too. Hers seems to be more aggressive and they're talking about treatment to shrink it and then a double mastectomy.

Mum has has the genetic screening done. She doesn't have any of the known mutations. Our family history is horrible - aside from mum and my sister both grandmothers, one grandfather and aunts on both sides have all had breast cancer. Another aunt died from a different kind of cancer.

Between us my sister and I have three daughters. I'm a bit scared for them as well as me.

I've got an appointment to see a breast specialist. As I'm under 40 I can't access BreastScreen but apparently I qualify for free MRI screening until I'm 40 then it's mammograms or ultrasounds.

I'm seriously considering a preventative mastectomy. I figure while I've got the appointment I might as well canvass it with the breast guy. I don't want to end up like the rest of the family. Has anyone had one/know someone who's had one? Any thoughts?

#2 fluffybun

Posted 13 March 2019 - 06:00 PM

My cousin has a similar family tree with her sister and mother both having breast cancer and she had one. It was covered by medicare including a reconstruction as they have the BRAC gene. We had genetic counselling and it wasnt on our shared tree but it would have been something I would have done as well just for peace of mind.

I think a good chat to your GP or genetic counsellor is a great first step. I wish you and your family all the best im so sorry you are all in this situation, cancer sucks!!

#3 Ruf~Feral~es

Posted 13 March 2019 - 06:09 PM

Bendersmum - I am so sorry you and your family are going through this!  

I was diagnosed with breast cancer last year, and have had a lumpectomy.  I am now on Tamoxifen and surveilance.

If it reappears I will have have a total bilateral mastectomy - no questions asked!  

I can't offer any other advice, other than to have the BRCA testing  and gather all the information you can.  Speak to as many people as you can and make an informed choice - for you and the girls around you.

Wishing you all the very best - it's a scary journey, but catching it early is always best.  Head in the sand doesn't help anyone, so you are doing all the right things!

#4 Soontobegran

Posted 13 March 2019 - 06:11 PM

That is unusual but not impossible to have such a strong family history for BC without the genetics. I often wonder if there are genetic mutations which are not yet identified.
I have Lynch Syndrome, which is where there is genetic mutation that makes me very much increased chance of several cancers yet my father who has had bowel cancer along with 12 members of his family does not have the gene which means I got it from my mother who did not have nor did any of her family aside from one we know for sure have cancer.

If I was you I would be asking to be tested despite the negative from your mum although it would not change what I would do in your position and that is to have a prophylactic mastectomy.
It is handy to know your genetic status as your children may like this information as they get older.

It is a tough decision I know but to remove the possibility would be such a relief for you.

I am having surgery in 4 weeks that will ensure that my ditched organs will not kill me by becoming cancerous.

Good luck with your decision and I hope your mum continues to do well.

#5 Staying Strange

Posted 13 March 2019 - 06:13 PM

I'm happy to chat with you via PM

I carry the BRCA2 gene and have an appointment with a breast surgeon later this month to book in  a preventative double mastectomy.

I'm also having my ovaries and fallopian tubes removed... that specialist appointment is booked  for next month.

I've been having annual MRI, mammogram and ultrasoundsfor the last few years and last year decidedto proceed with surgery.

I have 3 girls too....

#6 JoanJett

Posted 13 March 2019 - 06:43 PM

You and your sister should also see the genetics service, if you/she haven't already.  Known mutations are a small group in familial breast cancer. The genetics service can discuss all the options for reducing risk, which includes medical therapy as well as surgical options.  With your family history, tissue/blood banking would also be of interest for most services, for continued tracking of undiscovered mutations.  

Good luck to you and all your family.

#7 xxyzed

Posted 13 March 2019 - 11:05 PM

Look up the organisation Pink Hope. The website has a lot of information around this topic.

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