Deciding what type of surgery?

Options
A_Par41
A_Par41 Member Posts: 8 Member
edited October 2022 in Breast Cancer #1

Hello everyone! Has anyone here been diagnosed with DCIS non-invasive cancer on one breast but still decided to do a double mastectomy? My doctor recommended a lumpectomy with radiation and hormonal treatment. But I am thinking of doing the double mastectomy to avoid radiation and the pain and stress of worrying that it might come back. Anyone had this experience or advise? Thank you!

Comments

  • catlady2
    catlady2 Member Posts: 50 Member
    Options

    You have some important decisions to make. Ask you doctor why he/she recommends a lumpectomy followed by radiation and hormone therapy. If a lumpectomy are you eligible for the hidden scar procedure?

    Please think long and hard before you have both breast removed. Find out everything you can about the surgery. What is the recovery time? Are you going to go flat? or Do you plan on reconstruction? What kind? Implants-saline or silicone? Diep flap ?

    DCIS is Stage 0. What grade was yours? I was also diagnosed with DCIS-grade 3. After lumpectomy and radiation my chance or recurrence in 5 years is 4%. I was ER & PR negative so hormone therapy would not be an option for me. I am 3 years out, NED, and my doctor says she sees no reason for me to ever have to go through this again.

    I had a nasty reaction to the cream I was told to use during radiation. It took about a month for my skin to totally heal and for the fatigue to go away.

    Have you tried the Nomogram to find out you recurrence score? https://nomograms.mskcc.org/breast/DuctalCarcinomaInSituRecurrencePage.aspx

    or the Van Nuys Prognostic Index to find our your possible prognosis? https://dcisredefined.org/dilemmas/assessing-risk/van-nuys-prognostic-index/

    I wish you well with whatever decision you make. It is all scary and there is not a day that goes by that I do not think about what I went through. And thank my lucky stars that it was only DCIS!

  • A_Par41
    A_Par41 Member Posts: 8 Member
    Options

    Thank you so much for replying and giving me all this information! I wasn’t aware of a hidden scar procedure, doctor never mentioned that. I will definitely look into it.

    I was told I have DCIS stage 0. This is all new to me so all this information will be so helpful to me.

    thank you for replying and sharing your story. I’ve been praying and hoping that I get replies because it really helps to get info and make a decision when you talk to others that have gone through this!

    I am so glad that you are doing so well after your lumpectomy. Gives me hope!

  • pls9559
    pls9559 Member Posts: 6 Member
    Options

    I was also diagnosed with DCIS stage 0 recently. If they did a lumpectomy it would take 3/4 of my left breast. And my right has a very high chance of developing cancer. I've decided on a double mastectomy for a few reasons. I have very dense breasts which are painful, and I want to not only get the cancer removed, but remove future worry and most likely more treatment. Everyone is different, every body is different. I've talked to a few friends that have had/have breast cancer and they agree. But again, do what your heart tells you. It's not an easy decision for sure. My prayers are with you.

  • A_Par41
    A_Par41 Member Posts: 8 Member
    Options

    My prayers are with you and I hope that all goes well with your surgery! I’ve been doing so much research and talking to support groups that are going through the same experience or have went through similar experiences and it’s a very stressful and overwhelming decision to make but I too have decided to do a double mastectomy. I received my genetic tests and it came back negative but I feel that if I do a lumpectomy I will always worry no matter my results. I feel like I’ll be more at peace. I really do not want radiation in my body or any other treatments so I hope going this route gives me a bit of more peace of mind. Thank you for sharing your story with me :)

  • pls9559
    pls9559 Member Posts: 6 Member
    Options

    My prayers are with you as well! My heart feel right about this decision. We need to do what is right for us and I don't want all those chemicals pumped into my body. Those that choose to have radiation and chemo are making the right decision for them. Attitude is everything. God bless you.

  • mapilar
    mapilar Member Posts: 4 Member
    Options

    I decided for the bi-lateral (double) mastectomy and reconstruction after DCIS in just one breast. Best decision ever, so I am a survivor, the journey is not easy because I had 3 surgeries in 7 months. However, after 3 months I went back to work and got physically more active, walking, and traveling. I did not need chemo nor hormonal therapy. I just needed time to heal, so physically and mentally you just need time. First couple weeks after surgery is tough because you need help but after 6 weeks you should resume normal household work and driving (asuming no complications). Depending on what type of reconstruction you want (silicon implants or using own tissue) the recovery time is different, I chose my own tissue using flaps from my belly (so I got a tummy tuck) so mobility is restricted for the first 6 weeks. I am no longer worried about mammograms since I have no breast tissue left, I am very pleased with the plastic surgery (insurance covered all plastic surgeries because of the breast cancer diagnosis), I feel great! still sore but the recovery time may take up to a year. Have a friend that went thru the same two years ago and she feels great! I did not want radiation either because that kills good cells too, and hormonal therapy is for 5 to 10 years treatment so I did not want to take meds for that long period and deal with other side effects. Mastectomy to me(and my breast surgeon recommendation) is the best treatment for DCIS. However, every single BC case is unique. It worked well for me. Recomendation is to mentally prepare for the journey and share with your friends, family, neighbors they are key for your recovery and support. You have good support here in this network but engage with your close community.

  • A_Par41
    A_Par41 Member Posts: 8 Member
    Options

    Thank You for replying! This information is so helpful and now I know what to expect after surgery! I feel mastectomy is also the best choice for me. I am very nervous for my upcoming surgery but I am staying positive and hopeful that everything will go well. I am just looking forward to removing this toxic desease from my body and looking forward to continue my life with my beautiful family!

    Thank you for sharing your story :) if you don’t mind me asking, why did you need 3 surgeries?

  • mapilar
    mapilar Member Posts: 4 Member
    Options

    The first surgery was the mastectomy on both breasts and reconstruction (tummy tuck to use my tissue to fill in my new breasts) I chose for one size down, you can decided if want different size. I also lost a nipple due to cancer (non-spareing) The second surgery happened 3 weeks after due to infection on “my good breast”, so to reconstruct the nipple it has to be at least 4 month apart in my case I waited 5 and had my nipple reconstructed (some women do not chose this option and choose just tatooing it). This last surgery is also for the plastic surgeon to do the touch ups and see if we need to lypo fat and inject into the new breast to ensure simetry. After you first surgery you are too swollen and it is hard to see. This last surgery is 1 hour outpatient and you recover fast. My first surgery was 6 hours with 3 surgeons. Not everyone qualifies for that type of surgery due to risks if underlying other conditions. You can consult your doctor which reconstruction may work best for you.

  • pls9559
    pls9559 Member Posts: 6 Member
    Options

    Hello, I am done with my bi-lateral surgery and am amazed at how good I feel. The pain (in my opinion) is minimal compared to what I expected. The most irritating part for me right now is the itching. The surgery is a personal choice, for me I am so glad I did it! I spent one night in the hospital and home the next morning. The drains are cumbersome, and you'll get tired easily. God bless to whoever is on this journey!

  • A_Par41
    A_Par41 Member Posts: 8 Member
    Options

    Hello! I am so glad everything went well and you are recovering smoothly. That gives me some peace of mind, I hope I also recover well!

    did you get reconstruction and expander put in? I hope you don’t mind me asking. I recently canceled my surgery coming up because I got a second opinion with different doctor and felt she was the one I wanted to do my surgery. I wasn’t too comfortable with the previous surgeon. This doctor told me I don’t need expander so wondering if other needed expanders or doctor just put in the implants.

    hope you continue to recover well :)

  • pls9559
    pls9559 Member Posts: 6 Member
    Options

    Hi there! Good for you looking for the right doctor! I decided against reconstruction. For me it was the right decision. Everyone needs to be comfortable with what they decide. I wish you all the best! Always feel free to ask questions.

  • A_Par41
    A_Par41 Member Posts: 8 Member
    Options

    Good for you! I realized everyone’s experience and choices are different. Glad you made the right decision for yourself 😄

    thank you for your well wishes and I hope you continue to heal and recover well!