Changing life

MaryAnnie

It has really been a challenging 2 months for me and my life is changing so fast.

I am 47 and was diagnosed with a 1 cm DCIS, end of October. Had a lumpectomy and a re-excision in November, No micro invasion. BS then referred me to RT. My gut feeling is to skip RT and have bi-lat Mastectomy due to family history of bc. I met up with a PS to discuss reconstruction Also met up with the radiologist oncologist. My mind is just spinning because I was afraid that I was making too drastic a decision to have bi-lat mx. I think I was less scared of having a mx compared to making a wrong decision.

Fast forward and 2 days ago, my genetic test came back positive for BRCA 2 abnormality. This now takes the decision out of my hands and I will have a bi-lat mx for sure. I am surprisingly relieved that I now have certainty that a mx will not be a wrong decision. But I am now sad and worried if I passed this terrible gene to my kids. They are currently too young for testing.

Now my mind is also filled with making plans for more surgery to remove my ovaries and tubes. And I am reading up about all the terrible side-effects which I will have when my body becomes suddenly menopausal.

On top of that, due to my genes, I have increased risk of pancreatic cancer which is difficult to screen and is normally found out too late.

It is funny how one’s life can change in a blink of an eye.

We really must live our lives everyday like it is the last. Treasure every moment. Don’t waste time being angry or negative or cross. Count our blessings and look for the silver lining behind every cloud.

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finisterre

Hi MaryAnnie, I am also 47 and recently diagnosed and operated on. I'm glad to know there are other women my age on this site, as I am the first among my friends to have any kind of cancer and it has been a major shock.  Did your oncologist suggest genetic testing or is it something you have to ask for?  I don't have a family history of breast cancer, but my family tree has more men than women (no aunts, no sisters, no female cousins) so it's kind of hard to tell.  My husband's family is Ashkenazi Jewish, which is also a risk factor, so I worry for my daughter too (she is only 10).  I guess it makes more sense for her to be tested than me, when she's older.  
I am also unthrilled by the prospect of imminent menopause! Still, if it keeps us cancer free, I guess that's a win. 
I hope you have a great surgeon and team to help you through your upcoming treatments. 

Zoffiel

I'm 53 and had a recurrence last year. I was 43 when I was first diagnosed. I haven't had gene testing but two of my maternal aunts died of BC in their late 40s.

Ten years ago getting a bi-lat mx proved a bit of a challenge. I had lobular BC in one breast which had taken ages to diagnose and given my family history I decided those boobs had to go. I was busy and didn't want to go through the whole shitfight twice.

Living in regional VIC really complicated things. The surgeons up here were happy to lop a tit off but they would not do both at once and there are no options for reconstruction.  I ended up in Melbourne where I had to interview three more surgeons before I found one that would do what I wanted. 

I'd decided on implant reconstructions which were distinctly unfashionable at the time. One surgeon would only do tram flap retreads which sounded just ghastly. I needed my stomach muscles. Another would use tissue from my back but would only do one at the time and was fretting because I wasn't fat enough to form a substantial reco. In the end a surgeon at Peter Mac agreed to do what I wanted. By that time I had finished chemo, so off they came.

In hindsight I wish I'd just gone for flat and fabulous. The implants and I have not got on, but there really was no way of predicting that at the time.

When my cancer came back last year it turned up  in my armpit. Really? Who gets cancer in their armpit? Anyway, more surgery, another poisoning, rads then hormone therapy. I decided in the middle of all this to get rid of my ovaries as well. I was perimenopausal so thought 'What the hell?,' I'm happy with my choice but that last step into menopause was a doozy. Realistically it would have happened anyway, but I'm not overly pleased with some of the old lady things that are suddenly part of my life.

Yes cancer changes your life, but you sound like a pragmatic person who is making tough choices based on the evidence you have. Good on you @MaryAnnie. And good luck for the future. Marg xxx

Brenda5

I am 55 and had bc 2yrs ago. I had a single mastectomy and then a full node clearance under the arm. I do not miss that breast. It tried to kill me and I am not interested in having surgery to make one so I have a matching pair. I loathe hospitals and do my best not to have anything to do with them. So far, I have never had to be admitted again.

Japa

I am new to the bcna site and was trying to find more information about DCIS when I read this post.

I am 49 and was diagnosed with DCIS in 2015 when I found a big lump on my left breast. I had a nipple sparing mastectomy as the tumor was big (4cm) and my breast very small. I was told there was no need of any other treatment apart from surgery and thought I'd have to worry only about the right breast.

Last Dec I found another lump close to my nipple during my regular annual checkup and had another surgery on the same breast I had previously had the mastectomy.

This time, the surgeon recommended either radiotherapy or hormone therapy. I'm thinking in doing radiotherapy and avoid hormone treatment as the side effects are not nice.

Just make sure, you continue doing regular checks as there might be recurrences even after mastectomy. The chances are very low 1-2%, but as you can see, it happens. 

As  you said, one's life can change in a blink of eyes, but it's important to keep calm and deal with things as it comes. I live in the present and try not to overthink about the future. You must have some headspace. 

Jen79x

@maryanne43 it’s a rollercoaster isn’t it. I’m facing similar to you but with the brac1 mutation. Life changer. I’m 37, my cancer is triple negative so I’ll gaving chemo first then double mx. Reconstruction and then sort out the ovaries etc. 
its good you are choosing preventative double to lower the risk. Ovaries are scary too. Have they spoken to you about time frames for all of this? Mine said deal with the breast first and then we will get onto the rest. It’s lije being in a whirlwind 

primek

@Japa ...yes we have to keep checking. I'm on hormone therapy and all very liveable. I'd personally...but this is just me...be doing radiotherapy and hormone therapy. My tumor was close to my nipple and I chose not to attempt to save it as it is a risk when tbe tumor is close. I wanted to avoid all risk of recurrence. Yes side effects of medications are not always pleasant but definitely better than another recurrence or metastatic spread. Take care. Kath x 

Mollygirl

Oh @MaryAnnie, that's a lot to deal with. I too am 47, lumpectomy and nodes out last April, 5 months chemo for triple negative tumour then bilateral with no recon, I didn't have to do rads as did mastectomies. It's a big decision to make, take your time if you can. Ask us lots of questions we all have tips and tricks that are as individual as we are. Big hugs xxx 

Mollygirl

And PS @MaryAnnie, about going into menopause... I won't lie, I found the flushes and night sweats horrendous. I had chemo every 3 weeks and that first week dampened everything and I had a reprieve from them - then they'd be back with avengeance. But I have been on Remifemin Plus for some months now and it has really helped out of sight. Xx