Newly Diagnosed also have BRCA2 Gene

Rubylulu

Hi,

Sorry I'm a newbie, apologies if I'm posting this in the wrong section.  I have just been diagnosed with DCIS.  Had a lumpectomy 1 week ago and will get results tomorrow.  They have said if it's nothing worse will be followed by a course of radiation.  Although - everything appears different for me because I have the faulty gene.  My team of people are ever so gently "pushing" me to have a double masectomy to remove all risk.  I also had my ovaries and tubes removed a month ago - as risk reducing surgery (as also a high risk of Ovarian cancer with BRCA2).  Which has thrown me into early menopause.  I am 45.   Wondering if there are any others on this forum with the BRCA1 or 2 gene that are having a similar experience.

kmakm

Hi Ruby. I think you've posted in the right section just fine! Can I suggest that you put BRCA in the search bar on the homepage? That will turn up all sorts of info for you. 299 results in fact! Hang in there. K xox

lrb_03

Hi @Rubylulu, and welcome. Have a look on a site called "Pink Hope" regarding risk reducing surgery. If you're not sure talk to a genetic counsellor, if you haven't already,  about the risks of further diagnosis vs preventative surgery, or if there are any other options for you.
Take care

onemargie

Hi there love. I’ll be honest with you. I had a double was diagnosed aged 43 with triple negative BC. No nodes involved. Scans clear and negative for the gene. I wouldn’t hesitate to get the double with recon if you choose especially since you are so young and you’ve dodged a bullet as you probably don’t need chemo. It will take the stress out of life worrying ebout the fucker coming back for sure. Trust your gut on this one. I know it’s more surgery for you but it’s a small price to pay for a long healthy life. I had a girlfriend who was positive for the gene had the double and the hysterectomy and no regrets from her. Totally up to you love. Whatever you decide you will have plenty of support on here. Margie.  Xx

primek

I had a bilateral mastectomy and reconstruction due to invasivse cancer.  I had a very strong family history but don't carry the identified gene on my father's side (multiple deaths from ovarian/breast cancer ). I would  have had my ovaries and tubes out too if I had carried the gene. However I have a sister  (diff Dad ) who died from breast cancer and her daughter had breast cancer. As yet no faulty gene identified but all my sisters have to remain vigilant.  

I didn't want to spend my life in fear waiting for local recurrence or a new primary growing. It was recommended by my surgeon. My cancer was not detected by mammogram 5 weeks before I found  it due to breast density. It was an aggressive cancer and if it had been located deep in my breast...well we might not have had this talk.

So whilst I will always miss  my breasts. I've never regretted my decision. Some lumpectomies are very disfiguring and worsened by radio. If it does recur elsewhere in the breast that treatment can't be repeated and reconstruction options then are more limited due to the effects of radiotherapy on the tissue.

Realise that breast surgeons only recommend this surgery to give you the best odds of never having to deal with breast cancer again. This is more likely due to the gene and asking about how likeky that is, is important. You will not  need radiotherapy, nor will you need chemo unless there is lymph node involvement or it is idc. If planned at time of mastectomy the reconstruction results are extremely favourable and you might even be able to keep your nipples. 

We have a reconstruction group you can join if you want to see some results of members. Kath x

Rubylulu

Thanks for all your replies.  Got my results from lumpectomy today and my margins were not clear.  So next step is more surgery to hopefully get clear margins or else go straight to a bilateral masectomy (would take off the other breast as well to reduce further risk because of my BRCA1 gene).  They say I am the ideal candidate for skin sparing and nipple saving reconstruction with implant, due to my shape and small size.  I've seen the surgeons photo's of before and after pics using this method and I honestly could hardly tell the difference.  Although my main concern is reducing all my further risk.  If I choose to go for a 2nd lumpectomy where they take a bigger margin, I will most likely be left with different shaped breasts and then radiation would adversley affect the outcome of this type of reconstruction.  Just don't want to make a decision that I will regret.  I meet with the surgeon again in 1 week to decide.  They keep saying my cancer is very early stage and the margins showed pre cancer cells.  If I opt for the mastectomy they will take some nodes at same time and if all clear there should  be no need for radiation or chemo they say.

lrb_03

Hi @Rubylulu. It's a decision only you can make. Just know that we're here for you whichever way you go.
Take care

kmakm

I'm having a bilateral mastectomy and reconstruction next Friday.

I had a 1.6mm tumour with no spread to the lymph nodes. I had a wide local excision (lumpectomy) but there weren't clear margins so my surgeon went back a week later to take more. This turned up a big bit of DCIS that hadn't showed up in any scan or ultrasound. I am generously endowed in the chesticle department so while you can see a difference now it's not too noticeable.

From there I could have proceeded to radiation and left it at that. However my family history is dreadful. My mother had BC at my age and survived, but my sister didn't when she got it, dying less than two years ago at 47. Genetic testing was done but no known gene was found. However there is something going on in my family and I am considered at high risk for having more. As I am now raising my sister's kids as well as my own, there's no mucking about with this bugger of a disease. I had a genomic test to see if chemotherapy would be curative on any stray cells that were looking for somewhere else to roost. The test came back clearlypositive so I had chemo.

There are a number of other factors that have led to my decision to have the bilateral mastectomy. I was also influenced by radiation mucking up the chances of a good recon. These decisions are massive and highly personal. There's no wrong or right. Listen to your gut and your medical team. How risk averse are you? Can you live with yourself if you don't have a mastectomy and you develop a BC? Or is life too awful to contemplate without your own boobs? A very useful thing for me was to write down all the reasons why I was proceeding, when a friend asked me on WhatsApp. It unexpectedly clarified everything for me and I stopped going backwards and forwards on it.

Think about it, talk about it but also do an activity you enjoy and don't think about it! Let your subconcious mull it over for a bit. Best of best luck Ruby. K xox

Rubylulu

Still can't make up my mind - a re-exision (hopefully to get clear margins) or forget that and go for the double masectomy.  Just when I think I've come to a decision, the little voice in my head questions it.  I just can't shake the idea that a double masectomy for DCIS seems just too "radical".  My surgeon says I can do either, but no guarantee the re-exision will show clear margins.  Very difficult to work or sleep at the moment as my thoughts are totally consumed by this.  I meet with surgeon in 2 days to book in for next operation - the questions is - which one!!  I know it's only a decision I can make but just feel I need to 100% committed if it's a masectomy and at this point I'm not.  

kmakm

Have you made your pros and cons list, actually written it down?

iserbrown

Oh dear not easy decision!  Here's a link that may help, hopefully

http://www.breastcancer.org/treatment/surgery/mast_vs_lump

Sister

What @kmakm says is a good idea - a list of pros and cons is always helpful in clarifying exactly what is important to you.  I have a distant American cousin who did this when she was diagnosed a few years ago.  Some of her items about what she needed the other breast for were rather funny such as "do I need the breast to work with the horses".

Rubylulu

Met with surgeon today and booked in for Bilateral Mastectomy & Reconstruction at the same time.  Now that I've finally made the decision I feel like a weight has lifted off my shoulders.  Yes it was early stage DCIS (although they did say it was twice the size of what they originally thought) the issue of family history and I have BRCA2 gene was just too much to ignore.  In the end I had to go with my gut feeling and whatever would give me the most peace of mind.  Surgery is not until another 4 weeks.  Finally feeling good with decision!  I know there will some pain and emotional times ahead, but I'll get through it with great support from family and friends. 

Sister

Good to have made that decision, I'm sure.  Try to let it go (as much as you can) now until surgery.

lrb_03

A hard decision, but I'm glad you are going with your gut, and sound ok with it. 
Take care 

Anne65

@Rubylulu Glad to read that you have now got a path to follow & more important, one that you are happy with. Reading your story, i would have done the same thing! I had invasive DCIS, stage 1, no node involvement so had lumpectomy. My surgery gave clear margins so I was advised I only needed to have 16 doses of rad as precaution BUT as my mum died of ovarian cancer, they sent me off to have the gene test before they were happy to commence my rad. I was very afraid of the result as if it were positive then I would have had to face your choice which seemed too radical for DCIS. As you know, once you have had rad, it makes recon harder if you have to have it in the future so i was throwing up what to do ( rad v mastectomy) waiting for the results. The test came back negative so I went ahead with the rad & needed no chemo or HT. As a precaution, I did have my ovaries & tubes removed from advice from my medical team as mum caught the dreaded disease at 39 y.o & died at 46 y.o. i am 52 y.o so don't need them anymore & may gyny onc said it was a no-brainer for me to have the op. Peace of mind is such a strong feeling & you must now feel like a weight has been lifted. I reckon you won't look back now as you will not have to worry about the BC coming back once you have the op & you will have a "new couple of girls" that won't cause you any grief!! Hugs & strength to you xx