reconstructive surgery planned, but think I might need genetic testing first.

I was diagnosed with BC aged 42 in Sept 2007. I had a mastectomy and immediate reconstruction with temporary implant at the time. In January 09, I am due to go in in to have a permanent implant inserted and an uplift on the other side. However I have just found out that my BROTHER aged 50 has been diagnosed with BC, and had a mastectomy this week. My mum aged 70 died of secondary BC ten years ago, 13 months after initial diagnosis. When I was diagnosed, I was told it was just coincidental to my mum’s. I was sceptical at the time, I certainly don’t believe it now.
I am now wondering whether to go ahead with the planned surgery or to ask for genetic testing/counselling to help me make a decision as to whether I should have a mastectomy on my ‘good side’? Do I approach my GP or go via my old BC nurse? How long does the process take, as I could be going in a few weeks? (The surgery should have happened last week, but I was bumped off the list the week before, so its being rearranged). Any advice is welcome.

Hi marathonknees

I do hope that Breast Cancer Care can help you and your brother with some of your questions here. I have put for you below links to three of BCC’s publications, firstly the resource pack which is designed for the newly diagnosed but you will probably find it helpful. This is an A5 binder which contains lots of information to help you through your BC journey, your brother may also find it helpful. You can order copies on line and they will be posted out to you free of charge. Secondly, I have put the link for BCC’s publication regarding men and breast cancer, and lastly the link to BCC’s publication regarding BC in families. I do hope these help you both. Alongside these publications you and your brother are both more than welcome to phone BCC’s helpline, the staff here are all either breast care nurses or people with personal experience of breast care issues. Lines to the helpline are open Mon - Fri 9am - 5pm and Sat 9am - 2pm, calls are free, 0808 800 6000.

Your brother may also like to join the forums, we do have a number of men who have either gone through breast cancer treatment or are currently going through treatment who, I am sure will be only too willing to support your brother through this. There is a separate forum room for men with breast cancer (listed to the left of this page)

Resource pack : breastcancercare.org.uk/content.php?page_id=7514

Men with BC: breastcancercare.org.uk/content.php?page_id=333

BC in families: breastcancercare.org.uk/content.php?page_id=691

Hope all or some of this helps you both.

Kind regards,
Jo, Facilitator

Hi, I’m sorry to read your news, do ask for an urgent referral to your nearest genetics clinic…my Oncologist’s team sorted out my appointment which came through in a few weeks and that wasn’t an urgent appointment. If your Oncologist is hard to get hold of I would ask your GP rather than the BC nurse. Take Care…x

Hello Marathonknees

This is my own personal raction to your predicament. I would go for a prophylactic mastectomy, based on your family history. Then perhaps have screening so that you can prepare any children you may have. I would imagine your surgeon would be able to do this at the same time as your planned surgery.

It took me a total of four years from asking to be tested and to having surgery. In the end I was told I do not have brca 1 or 2 mutation, but was still considered a high risk due to family history alone so I found the whole testing process a waste of time. I have had bi-lat mastectomy with immediate recon and the relief I feel now is huge. Rather than putting yourself through the worry of it coming back, or another operation years down the line, I would go for it now.

This is my strong opinion, and I am someone who has never been diagnosed with BC, but I have seen my mum go through it all twice.

Best wishes
Jackie.

I found out recently that I have the BRCA2 gene (although I now have secondaries) but my mum and my aunt were both pre-menopausal when they were diagnosed with breast cancer and both sadly died within 3 years of the diagnosis. I also have a couple of great aunts who died of breast cancer but don’t have much information on them.

The genetics team do a scoring system which is connected to your family tree and if you score x amount then (as far as I’m aware) they will do a genetics test on you. It took 18 months for them to find my gene (found out this September) but my cousin (my aunt’s daughter) found out within 3 weeks because they had my ‘grid’ number and were able to go directly to it and she also has the gene. We’re waiting to see if my brother also has the gene as there’s also a prostate connection with BRCA2.

I think it only affects between 5-7% of all breast cancers but you can still have a strong family history without being identified as having one of the genes that they have so far found (BRCA1, BRCA1 or p53). It makes me wonder whether there are other genes out there that they haven’t yet been able to test for.

It sounds as if there’s every chance that you do have one of the gene misprints.I was diagnosed several years ago with BRCA2, and opted to have the remaining breast removed (I’d had a mastectomy due to primary BC a few years previously.) No reconstruction, nor prostheses for me-I was more comfortable and confident being flat, and have never regretted this. I wish you well, but perhaps now is the time to postpone, until such times as you know the outcome of genetic testing. It would be such an ordeal to have reconstructive surgery in a few months, and then feel several months later that you should have bilateral mastectomies. Good luck, and do let us know what you decide.

Thank you all for your advice, quite honestly this has knocked me for six.I thought I was coping well after the initial diagnosis & treatment, but this has really shaken me. I will be following up in the morning. Will keep you posted.

hi every one
ive just turned 21 and abt a year ago i found out that i have the BRCA2 gene that runs in my family
i under gone the first part and had expanders put in
was wondering if anyone else has had this op
thanks lisa xx