DMX & Recon

Options
AquaMarina
AquaMarina Member Posts: 14
Hello ladies,

I'm in dire need of advice from the community regarding dmx and recon.
I'm currently on a trial treatment prior to lumpectomy in mid December. I have triple negative and also a BRCA1 carrier. There has been an ongoing conversation with my surgeon and plastic specialist at Peter Mac to my options for mastectomy and reconstruction as well as the option of remaining under observation in case I'll decide to keep my boobs. I find it extremely difficult to make a solid decision and stick to it. I'm concerned about my body image as I'm only 38, haven't had kids and in great form from training in competitive sports for a large portion of my life.
Those of you out there who's undergone reconstruction and could share your experience with me and whether you think it's better or worse remaining under observation for the years to follow or pull the trigger and get dmx instead? Nipple sparing surgery or tattoo?Any information would be greatly appreciate it!

Comments

  • June1952
    June1952 Member Posts: 1,867
    edited October 2023
    Options
    Welcome @AquaMarina - please join the Reconstruction Group as you will get lots of info there, stories and photos.  
    Under Groups you will see one titled Choosing Breast Reconstruction - go into that and request to join.
    There is also a FB group apparently which someone else can tell you about as I am not on FB.  Something like Reclaim your curves.  Hope that helps.
    Thinking of you  💖
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    @June1952 Thanks so much for the info! 
  • arpie
    arpie Member Posts: 7,686
    Options
    Sorry to see you join us here @AquaMarina ... there is a Webcast on Triple Negative  on Tues, Oct 24th - see if you sign up for it & even submit questions. 

    Overseas in the UK and USA, they are doing trials with a Triple Neg vaccine, showing promising results - but it is not available in Australia yet - nor likely to be in the near future. :(   Maybe you could question them on this!?
     
    https://onlinenetwork.bcna.org.au/discussion/25877/q-a-triple-negative-breast-cancer-on-tuesday-24th-october-from-4-30-6pm-aedt#latest

    take care & all the best.

  • Abbydog
    Abbydog Member Posts: 482
    Options
    I'm sorry for your worry. There is also a Triple Negative group here that you can join. And a young women's group. Maybe they could be helpful.
    I've had Mastectomy with delayed Reconstruction. I was stage 2 Grade 3 on diagnosis, Estrogen positive. I was not given the option of observation. Your concern re body image is understandable. Have you asked to see photos from your surgeon, of other similar patients.
    My new boobs are not the same as the old ones. But mine were older than yours, and probably not as attractive. Because of the Radiotherapy I had after Mastectomy and Chemo, my Recon options were limited. I had a Latisimus Dorsi and a Prophylactic mastectomy. I now have Implants ( after having had expanders). I have no nipples, but do plan to get nipple Tattoos. I am happy with my choice.
    It can be a difficult decision. 
    Do I understand that you have a planned Lumpectomy? Is that definite and then observe?
  • Julez1958
    Julez1958 Member Posts: 1,153
    Options
    Hi @AquaMarina
    I had double mastectomy and DIEP reconstruction and 2 years on am very happy with my decision.
    My story with photos along with lots of others are in the private Choosing Breast Reconstruction group - call the helpline ( Min to Fri) if you have trouble joining .
    Also check out the Reclaim your Curves website.
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    Hi @arpie
    Very interesting! I’ll have a look into it. 
    Thanks so much for the info and link!! 
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    Hi @Abbydog,

    Thanks for the message and info it makes me feel supported receiving messages like yours. 
    It’s a tough one for sure. 
    I’m still waiting to be accepted into some of those groups here. Will try the young women one too. 
    Because I’m currently on a trial of PARP inhibitor drug and immunotherapy which is a neoadjuvant treatment prior lumpectomy after which it will be determined whether I need chemo and how much of it. But most likely looking at 6 months of lighter chemo than a traditional one with my stage and grade, same as you’ve had stage 2 grade 3. So no dmx advised for now for the body to have enough strength to deal with chemo in case it will needed. Also I’ve been told I won’t have to undergo radiotherapy if I’ll decide to go for dmx. I’m sorry you weren’t given that option. I know radiation can be really painful and intense. Observation is an option at this stage but it may change after the surgery. You know how it can be with those things. There will be more info given post surgery I’m sure. 
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    Hi @Julez1958,
    Thanks for the message, most appreciated!
    I’ve been given the DEIP option as something I may like to consider later in life when I put on a bit of weight as for now there isn’t enough fat around my tummy and so I was given the implant option. The 3rd one was transplanting fat from my inner thighs but it would mean more scars and more recovery time so I’m going to leave it for now. 
    It’s really good to hear you’re happy with your reconstruction! Still awaiting to be accepted into the group. Gonna check out the website too. Thanks again! 
  • Abbydog
    Abbydog Member Posts: 482
    Options
     I’m just putting it out there. Not everyone has a hard time with Chemo, it is very individual and  very unpredictable. I was lucky. My side effects were all manageable. And Radiotherapy was not hard either. I had 5 weeks/25 sessions. No burning etc. They used Mepitel,  a dressing worn 24/7. Tell you more later, if there is a change to your plans. Our BC is different with the order and type of treatment. I am happy with what I had. My surgeon wanted my cancer removed and Chemo started as soon as recovered from Mastectomy. In my case it did take some patience before Recon.  As I said. I’m still happy with all of my treatments. I have been very fortunate that I have had great Drs all the way through. They have all given me great explanations and time to ask questions. My surgeries have also gone well. No complications. I hope you are just as lucky with everything. 
    My photos are in the group 'Choosing Reconstruction'
    Under Latisimus Dorsi  called by me 'Not suitable for DIEP, my reconstruction'
  • Julez1958
    Julez1958 Member Posts: 1,153
    Options
    One other thought @AquaMarina
    Regardless of  any Sydney/Melbourne rivalry (😋)  I understand both cities have a number of centres considered “centres of excellence” for breast cancer surgery.
  • Stone90
    Stone90 Member Posts: 17
    Options
    Hi @AquaMarina

    I'm in a similar boat to you, but BRCA2, and diagnosed at age 32 (Dec 2022).

    I've found the https://www.reclaimyourcurves.org.au/ website very helpful, as well as https://www.bcna.org.au/tools-breconda/

    The EVIQ website https://www.eviq.org.au/cancer-genetics/adult/risk-management/3814-brca1-or-brca2-risk-management-female has also been helpful with considering the BRCA part. Pink Hope is another charity group which you may found helpful. https://www.pinkhope.org.au/

    For me, at this stage, I've decided to go for DMX and DIEP recon. Unfortunately the public waitlist is long for me (as I am currently cancer free). I've also decided to do nipple sacrificing, because even if you do keep your nipples they have no sensation. I will at some point have nipples tatooed on. 

    All the very best to you. Happy to answer any further questions you have. 
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    @Stone90

    Hey beautiful,

    Thank so much for the message and info!
    Sorry to hear about the long wait. Must be so frustrating being in that limbo stage, I’d imaging it could take a toll on your mental state too. 
    Nipples is a huge one for me even if they have no sensation I’d rather spare mine if I can. I have however seeing some very realistic tattoos and they look great! 

    All the best to you too Xx
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    @Abbydog,

    That is really good to hear! 
    Gives me hope that I may cope alright too. 
    My mum wasn’t too bad either when she’s gone through it 16 years ago and had no recurrence since.
    I have been finally accepted into the reconstruction group so I’ll have access to more info and photos now.

    Thank you!
  • AquaMarina
    AquaMarina Member Posts: 14
    Options
    @Julez1958,

    Haha absolutely!

    I’m feeling very lucky and privileged to live in Melbourne and to be looked after by some of the best doctors. Peter Mac has lovely and committed staff and since day one I’ve been feeling supported in the best possible way.