Forum Discussion

Christine_66's avatar
Christine_66
Member
5 years ago

Second time around

Hello....
I was diagnosed with DCIS Invasive grade 2 breast cancer in my left breast in Nov 2009 when I was 43yo after been sent for a mammogram because I had never had one before. I had a lumpectomy and a sentinel nobe biopsy. A dot of inconvenience was found in one of the lymph nodes which led to a second surgery and an ancillary clearance removing a further 24 lymph nodes. This surgery had an ‘all clear’ result but I needed 4 rounds of chemo as a precaution and then 6 weeks of radiation. I then took Tamoxifen for 5 years as the cancer was hormone receptor positive. 

I have continued with my annual mammograms and ultrasound, have needed a couple of fine needle biopsies but generally had a pretty good run the past 11 years. 

Until Nov 2020 😢 my routine checkup resulted in a vacuum assisted core biopsy of my right breast and the diagnosis DCIS. F@@k her we go again! Abnormal cells were located as they had calcified so could be seen on imaging! How lucky was I? If the cells didn’t die, would have been a whole lot different in 12 months time as My surgeon requested that I have a MRI to check for anything else. An area of 3-4cms was located which meant the surgical margins were increased to get a ‘clear result’. 

I am now going through the motions of deciding what to do next? Can opt to just do radiation again and then roll the dice a third time and see what the future brings? But I am 99.9% decided to have a bilateral mastectomy.. I took the genetic test for BRCA 1/2 mutation...results were negative, so it’s just me 😜 I also found out from my surgeon that once you have had radiation on your breast, you can’t have it again so if it was in my left beast, I would have had it take off anyway. With radiation alone, the risk of breast cancer coming back would be 20% versus just 1% after having a mastectomy..
In my head it’s a no brainer but I am really starting to grieve about my decision and they haven’t even gone yet!  

I have spoken to a private reconstructive plastic surgeon and I would be eligible for a ‘Tram Flap’ recon which seemed quite appealing in the start as I would be getting a tummy tuck too (had to be a silver lining there somewhere) but the length of the operation and the out of pocket cost was a lot more that I expected and I have decided not to weigh myself down with that for the moment. The breast cancer support centre ‘Choices’ advised me to just put my name down on the public waiting list, so I think that is what I will do and decide that in a couple of years... I just need to get my head around what I am going to look like on the other side of the mastectomy surgery?

I know I am stronger to cope with this having been diagnosed for a second time. The first diagnosis definitely made me stronger and more resilient in my life. I am not backward in coming forward, never hesitate to eliminate things in my life that cause me grief. That’s why I don’t feel any loyalty to my breasts as they definitely are not my BFF’s. I have breast fed 3 beautiful kids (now all adults) so I really don’t need them anymore and the thought of never wearing bras around the house is starting to feel pretty good! I am currently a DD size so I am quiet envious of my daughter coming home and the first thing she does is take her bra off!!
 
In all seriousness though....I just need to get my head around this choice as it’s not like going to the hairdresser and having a bad hair cut and saying ‘it will grow back’. Once they are gone, there is no coming back. But I just don’t want to roll the dice again 🤔

thanks for reading my story, any advise would be greatly appreciated ❤️

Christine x
coping
double-mastectomy
new-diagnosis

14 Replies

  • Sister's avatar
    Sister
    Member
    5 years ago
    Only you know what you can live with - inconvenient, but true.  So, the question is, are you always going to be anxious about what's going on in the remaining breast or are you going to be able to put it to the back of your mind?  I wouldn't worry too much about the recon as that can be done at the time or later if you want it (although obviously another surgery) so maybe keep that thought process separate.  Whatever your decision is, it has to sit right with you so that you are satisfied that you have done the right thing, now and 10 years down the track.
  • Anj_j2020's avatar
    Anj_j2020
    Member
    5 years ago
    Hi @Christine_66 . I was adamant I was only going 'under the knife' once, so took a whole ten seconds to decide on a double mastectomy without reconstruction (after being diagnosed with early Her-2 positive last year). The surgeon considered it over the top, but my decision was found sound when a tumour was found in the tissue of the other breast post-surgery.
    I now have a very tidy thin pink line across my chest. I'm happy.
    Some people have called me brave, but it isn't that. It's simply the only course of action that made sense to me.
    Good luck with whatever you decide! <3 :)
  • Zoffiel's avatar
    Zoffiel
    Member
    5 years ago
    Ha @allyJay  I also went from an 18 DD top with a 12 waist and a 14 arse --those were the days-- to a situation where I could buy a shirt off the rack that was not SM (small marquee) and actually button it up.

    A fit of midnight senses saw me enter a local radio competition to win $2k to pay off my credit card. My application? I needed the money to replace my melon managing lingerie with apple enhancing versions. The money came in very handy and my exes horror that I would share such a story was icing on the cake.

    Sometimes you have to see the humour in this stuff, black as it is. Mxx
  • Dory65's avatar
    Dory65
    Member
    5 years ago
    That sounds like a good plan. Great work on the weight loss @Christine_66. Impressive. It's bizarre, but despite improving my diet and exercising more, I simply cannot seem to shift my weight! I realise I may have lost a bit of fat and gained a bit of muscle, but the stubborn lack of movement on the scales frustrating.  :/
  • Christine_66's avatar
    Christine_66
    Member
    5 years ago
    Hi Dory65,
    thankyou for your reply. 
    As I don’t need Chemo this time round my surgeon has told me there is no rush for my decision... can take up to 3 months. I will be going back to see her next Thursday 14th Jan to discuss my treatment options. I will be asking her what I would like to do but if surgery is recommended to be earlier than the end of March, I will go ahead with her recommendations. 
    I have been on a medically monitored weight loss program since the start of March 2020 and I really want to finish my 12 month program so that I can lose my last few kilos and go into this surgery feeling really healthy!! I have lost 23 kgs already and who knows the mastectomy may help me to lose the last couple of kilos to get to my goal! 🤞🏼🤞🏼
    Christine x
  • Dory65's avatar
    Dory65
    Member
    5 years ago
    Hi @Christine_66,
    I'm sorry you are facing this again. These are confronting choices. I'm wondering about the delay between your surgery (with clear margins, thankfully) and either radiotherapy or mastectomy. I don't want to add to your anxiety, it's just that when I had surgery with clear margins there was concern about the delay between surgery and commencement of radiotherapy or chemo. I was told they had to commence one or the other within twelve weeks, ideally. Mine was invasive stage 2, not DCIS. Maybe the issue is not applicable to DCIS. All the best, Lx