Looking for some answers

meridith4
meridith4 Member Posts: 1
in Breast Cancer #1

Hi, I would have never thought in a million years I would be facing this struggle but I've just been diagnosed as having "poorly differentiated invasive ductal breast cancer" with a estrogen positive and her2 positive diagnosis. The past two weeks have been a whirlwind of activity and I'm barely keeping it together. I have made up my mind that I'm going with a bi-lateral masectomy (possibly nipple saving) and am now on the fence about having a reconstruction or not. I'm a full "A cup" but I am looking for feedback from women who have been in this position before regarding to have reconstruction or not. I am 43, married and done with children. Husband and family is supportive regardless of what decision I make, however, I'm 50/50 on having reconstruction or not. Can anyone share any positives or negatives regarding either choice?

Also, does anyone know of any good support groups near Annapolis, MD or anyone nearby going through the same struggle. Really could use someone besides my husband who can relate to what I'm going through.

Thanks and prayers to all,

Meridith

Comments

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #2
    Very similar

    Hi Meridith,

    My situation was very similar to yours.  Poorly differentiated Invasive ductal with estrogen positive but her2 negative.  While mine was in one breast, it was in 2 locations in that breast and I has a very small spread to the nodes.  Due to dense breast, a family history and the start of spread, I opted for a bilateral mastectomy.  I was also a full A cup and since I was 40 at the time, it was important for me, personally, to have reconstruction.  I had expanders put in at the time of my mastectomies and then after chemo had silicone implants.  For me, having reconstruction was definitely the right choice.  Fully dressed (and in bikinis or what have you), I look normal.  I am very happy that I do.  I found the surgery to swap in the implants to be very easy and the process generally fine.  The expanders are a little uncomfortable, but I got used to them.  I'm now 8 years out and so far so good.  

    Very best,

    Clementine

  • cyn1957
    cyn1957 Member Posts: 3
    #3
    Similar choice to make

    Hi Meridith, I have recently been diagnosed with breast cancer for the second time, the first time was 17 years ago. In my first go round, I had a lumpectomy and ended up with one breast being much smaller than the other. I didn't wish to wear a prosthetic so I just wore scarves a lot to try and camoflauge the fact that one side of my chest was smaller than the other. In my current situation, I need to have a full mastectomy of the cancerous breast (the same one as 17 years ago) and I have decided to go ahead and have a double mastectomy to avoid having to face breast cancer again in the future and also so that both sides of my chest will match. I have opted not to do reconstruction. I am 62 and I am not in an intimate relationship where having breasts might matter to a partner, so I have decided to minimize the amount of trauma that I inflict to my chest. Ever since my cancer surgeries 17 years ago, my chest wall has been painful and wearing even the loosest of sports bras is really uncomfortable, so opting for no reconstruction means I won't have to wear bras anymore which I think will be much more confortable for me. I imagine that it will take some time to adjust to having no breasts at all, but I think that I will be more comfortable physically and that seems to be the most important thing at this stage in my life. If you have a husband who supports either decision, I would recommend opting for whatever you think will make you feel the most comfortable, physically and psychologically. I had to sit with this choice for a while, and I talked it through with two or three women I know just to hear their thoughts about that kind of choice. As time went on, I just paid attention to which option seemed to cause me the less stress and sense of worry. Good luck with your processing of this decision.

    Cynthia

  • anniemshe
    anniemshe Member Posts: 91 Member
    #4
    Breast reconstruction

    Hi. So sorry you are going through this. I was 42 when diagnosed and had a mastectomy and did the reconstruction surgery but this was 12 years ago. My doctors thought it was ok to have both the removal and reconstruction together and after that I had my chemo and radiation treatment. For me my implants became hard and it was uncomfortable after 8/10 months. My doc suggest another surgery to replace the implant as he thought the radiation could have caused the hardening. Did that surgery but in my case after a year or so it hardened again. I’m so sick of treatment and surgery I’m not having another surgery and about 2 years ago I was diagnosed with metastatic breast cancer so now it’s stage 4. I’m now focusing on that and don’t have time to be concerned with the implant. It’s not natural feeling and uncomfortable. If I were to do it over again I would choose not to reconstruct. 

    However perhaps things are more advanced now and I wouldn’t have the implant put in before radiation that’s for sure. Speak to your doctor and make sure you are clear about effects of radiation etc on implants. I was in a daze after being diagnosed and perhaps didn’t listen carefully to my doctor and think it through. 

    Prayers and best thoughts for your treatment and decisions. God bless you 

  • Elaine_wi
    Elaine_wi Member Posts: 124 Member
    edited April 2019 #5
    Mentor

    Hi Merideth,

    After my initial diagnosis my best support came from a mentor, who had been through a similar situation as mine. I found her through an organization called ABDC (After Breast Cancer Diagnosis)  www.abcdbreastcancersupport.org     800-977-4121

    I chose to have DIEP flap reconstruction (different from TRAM flap). The plan was to do the reconstruction during the same surgery as the double mastctomy, but, because I tested positive in a sentinel lymph node, it was delayed because I would need radiation treatments.

    A year later I had the reconstruction surgery (I had to wait for my skin to heal from the radiation). I am very happy with the results. Find a great surgeon, get 2nd and 3rd opinions, do your own research. Remember, breast reconstruction can be done months or even years after a mastectomy. You will be just fine... really.

  • Apaugh
    Apaugh Member Posts: 850 Member
    #6
    Personal choice

    I chose flat.  I have no regrets to that.  It was and still is tough but I am alive.  March 3, 2016.  Still taking the anti estrogen.  That in itself is a challenge.  The collateral damage of cancer bites.

    Now I am dealing with UTUC of the left renal pelvis so...the cancer fight continues.   

    Hugs and prayers,

    Annie

     

  • Patriot_Mom
    Patriot_Mom Member Posts: 10
    #7
    Bi-lateral Reconstruction

    During my first round of cancer (it returned in October 2018 after 4 years) I told my doctor to "just take them off" and would have been content to go from a D-cup to flat.  I was about 55 y/o at the time and my husband was supportive.  However, the doctor convinced me that was too radical and no reason to do that.  He convinced me that a lumpectomy and bilateral reconstruction was the way to go.  Now I had enough tissue to not need implants and just have a reduction on the other side to match -- they don't.

    Like I said it has returned and metastasized.  If I had it to do over I'd stick with my original decision.  However, I know that even that is no guarantee.  I'm not sure they'd have found that it had metastasized to my lungs if they hadn't been following me so closely afterwards, but still did not diagnose the return of it in time.  Good luck, whatever your decision.  Do what makes you happy, have no regrets and know that cancer makes up its own mind no matter what you do.  Hope for the best, plan for the worst and live for today.

    That being said, I've also found that a keto diet is helping me starve my cancer and I'm down 44% from baselines measures.  Now 6 months into treatment I think my doctor's estimate of 1 1/2 to 2 years lifespan is wrong.

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