Am New here, would like some input...

Welcome to the forum.  You will find a lot of support here.  

One thing is you are in a position to do your research and decide what kind of reconstruction you might like if you go down this route.  Personally, from what you have said, it sounds as though that might be the best thing for you but two things to bear in mind.  Firstly, you will have no sensation in your reconstruction.  Secondly, they don't always work.  They do usually, and they also can be tweaked afterwards.  

See if there is a Keeping Abreast group near you because you can talk to people about their various surgeries and see results.  Having a double Mx makes it easier in a way because you can get a matching pair!  Bear in mind that you may not be suitable for certain surgeries so you may have to keep an open mind.

I've personally had a double mastectomy with implants and I'm very happy with the results.  If you have enough spare, and depending on the size you wish to be/are, you may wish to consider a DIEP flap reconstruction using tissue from your own stomach tissue or a TRAM using muscle from your stomach.  But there is a long recovery from these, and even the implants aren't exactly a walk in the park.  So do give it proper consideration. 

Speak to your consultant and discuss options.  And take your time.  Because it's not reversible when you decide to do it..  Good luck

Hi

Im so sorry you've had such a rubbish time over the past few years.  Im now 63 but like you had fibrocystic breast disease throughout my thirties and forties, had asperations almost every year and had a few surgical procedures to remove cysts which kept filling up again.   When I was 48 I was diagnosed with very early grade 1 ER+ breast cancer, no nodes affected so had a lumpectomy, followed by rads and never had any further cysts in that breast.  They continued in the other one.  However when I was 60 I had a new primary in the lumpectomy breast and had a mastectomy and immediate implant reconstruction.  

At the time of the second diagnosis I asked about a double Mx as I felt my life had been governed by visits to the Breast Unit for so many years with needles and bits being taken away.  However, my BC was not keen to do a double as he said there was nothing to suggest it would happen in the other breast.  However, my point was that I was fed up with these investigations taking over my life and affecting me emotionally for such a long time that I just wanted it to stop.   I didn't stick to my guns and went along with his advice but now regret it.   The mx and recon wasn't as bad as I expected and I now wish Id insisted on the double for my peace of mind.   I still have to go for annual mammograms on my good breast, have had a few cysts asperated which yes, were not cancerous or DICS, but what the surgeons don't realist is the constant worry and emotional trauma you undergo everytime which is just so exhausting.

I can therefore understand why youre thinking of a double Mx, especially given you have two teenagers, one with special needs, which I guess takes up a lot of time and emotional challenges.  

Only you can make the decision based on whats best for you, having got as much good information as you can.  If you do decide on the MXs and your Dr is not supportive, tell him what its like living with this constant uncertainty, the rollercoaster emotions (which in my case lead to high blood pressure for which I take daily meds) and ask him/her if s/he could put up with it!

Wishing you all the very best.

Carole x

Hi Nery,  Seems what you need is as much information you can gather to make an informed decision, but as already mentioned - There is no going back so you have to be 110% certain before deciding.

You have had some great replies and advice especially the comment about recon breast sensations not feeling natural because the tissue has come from elsewhere on your body and any nipples would either have to be constructed or 3D tattoo'd on. You may consider this alone a good enough reason to put you off, only you know how your current situation, and how much future worries and surgeries would be eased by going ahead.

Because we are not talking about cancer here (yet)  there may be an option where they could remove all internal breast tissue but leaving the external breast skin intact so you could have implants of some sort - no idea if this would mean you keeping your nipples though - Have you looked into whether this could be an option ?

Here's a couple of leaflets one about Hyperplasia and the other is 'Understanding Risk Reducing Breast Surgery' which is mostly aimed at those tested positive for the BRCA1 or 2 gene.  Be aware It does contain post op images of several of the various recon types.

Hope this helps, George & Jackie

Thank you all for your input and support, it's been very helpful. I have a question and was wondering if anyone knew the answer. In the midst of dealing with all tha I have been dealing with lately, my father was diagnosed with stage four non-hodgkins lymphoma back in March. He's already been through the chemo and we are waiting for results on pet scan he had done last week. Does anyone know (can't find online) if that increases my chances of developing breast cancer, especially with all that I've endured with breast issues lately and the hyperplasia?

Hi Nery

Never heard of a link with that.  I've heard that SOME ovarian and prostate cancers are linked (through the BRCA gene) but not non-Hodgkins.  I would take one thing at a time.  You could ask your oncologist (or his) if you get that far.

Hey, I think you need to read this article to understand fibrocystic breast disease well.

I've had cysts and fibroids since I was 18 (now 51). I had two removed and numerous visits for Mammograms and ultra sounds over the years. I've been on different types of medications and none of them really helped. I decided against having any drained as I knew it would only be a quick fix. Monthly cycles have always been a nightmare and I absolutely feel your pain. The decision to have a double mastectomy is yours alone as everyones journey is completely unique. I wish you all the best in what ever decision you choose xxxxxx

Hiya, you really are going through the mill right now!!

Just wanted to toss in nipple sparing surgery. I had left mx saving skin and nipple, and an implant. My last mammogram, the radiographer had to double check which side as she couldn't tell. And the nurse who did my last ecg didn't actually notice at all until I said she had to do bp on the right arm. 

I hope you come to a decision that is right for you.

Hugs xx