What is my best decision

Options
auntpondie
auntpondie Member Posts: 14

I need some help guys! I was diagnosed with invasive ducal carcinoma, stage 2. It is only in my left breast and the surgeon told me yesterday that I do qualify for a lumpectomy followed by radiation. However, before this, she had me meet with a plastic surgeon to discuss my options with him in case I choose to have my breast removed and reconstructed. I just don’t know what to do. Everyone says it is my choice but I’m scared to death to make the wrong choice. Am I overdoing it if I choose to remove my breast? I just need feedback from some folks who understand what I’m going thru. I have been a crying mess because I just don’t know what to do

Comments

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2020

    Nobody here can tell you what to do. It’s so personal. You didn’t say what type of recon you are considering. Do be aware it’s more surgeries, pain, copays, risk of infection, longer healing time.

    Some ladies here do it, and are very pleased with the results. Others, not so much.

    I had bmx 8 years ago, am happy flat. This doesn’t necessarily need to be decided on immediately, give yourself some time to think it through. You could do it later.

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    As Spookie said, no one here can, or should, tell you what to do. This is simply too personal a decision. We all look at it differently, and whichever decision you make, you are the person who has to live with the consequences - so it has to your decision based on what's best for you.

    The information and questions included in the following thread might help you with your decision:

    Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

    https://community.breastcancer.org/forum/91/topics...

    .

    Good luck with your decision! And once you decide, don't look back and don't second guess yourself.

  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    the reconstruction would be placing spacers in at time of surgery and then having implants. I did not qualify for using my own tissue. It’s just scary all the way around

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2020

    Hi auntpondie, and welcome to Breastcancer.org.

    We're so very sorry you find yourself here, but we're really glad you've found us. As you can already see, you're sure to find this Community a helpful place for information, support, and advice -- we're all here for you!

    As spookiesmom said, this is a very personal decision and one that doesn't come easily. Others will likely be by shortly to weigh in with how they came to their decisions. But in the meantime, you may be interested in checking out this page from the main Breastcancer.org site on Mastectomy vs. Lumpectomy, to help you weigh the benefits and drawbacks.

    We hope this helps and that you find solace in your decision. Please let us all know how we can continue to help!

    --The Mods

    Edited to add: We posted this before we saw Beesie's response. Both spookiesmom and Beesie are long-time members with great advice -- you're in good hands! <3

  • cake8icing
    cake8icing Member Posts: 58
    edited May 2020

    Hi AuntPondie:


    Firstly, my <HUGS> to you in dealing with your new diagnosis. It is scary and overwhelming and the doc is putting all this decision making in your lap, and you feel like, hey, you’re the doc, you are supposed to tell me what to do! But the thing is, every woman feels differently about her body, possible treatments, recovery, all of it! The doc really does not know how you feel about your own body. I am not an expert here on the disease....suggest you connect with Beesie on that, who has written so many great posts from a laywoman’s point of view but with broad knowledge from her years dealing with BC. But I can walk you through how I decided on my path forward.

    Every choice is personal and it is the right choice if you have thought about risks/benefits and are willing to accept them. For me? I had only DCIS, stage 0; very frequently women with this DX choose lumpectomy and radiation. But I chose Mastectomy. Why? For a bunch of very personal reasons: it was my left breast, which is over my heart, which means my heart would have a risk of receiving adverse effects from radiation. I already have a heart condition, in addition to very sensitive skin, which would likely be highly susceptible to the effects of radiation. My DCIS spanned almost 4 cm over a small breast, meaning a lumpectomy would excise a very large part of an already small breast. And then, finally was the info that with MX, I would have only a 2% chance of recurrence, vs having to have lumpectomy plus radiation plus tamoxifen to reach that same risk level. When I added it all up, mastectomy was the right choice for me. Also, I chose no reconstruction, because my sister suffered a MRSA infection during her autologous recon...that really scared me off reconstruction. Wearing a prosthesis in a mastectomy bra works for me. Anyway, these are some of the personal points of view that led me to my decision. Every woman’s decision is right for her as long as she has considered all the risks and benefits.


    .
  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    thank you all for sharing. One thing I do know, no one is alone and that helps more than anything. I know I have some soul searching to do but reading about others experiences and choices are really hitting home and helps more than I thought they would. I did not qualify for reconstruction using my own skin/tissue, so I would have spacers placed at time of surgery and then implants in a few months. On top of it, I am so angry, depressed, scared. I seem to be rambling, but it’s nice to let it ou

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 322
    edited May 2020

    It's such a personal and difficult decision because there is always that what if, am I making the right choice? I remember in the beginning what a mess I was. I went back and forth for weeks. I originally was set on lumpectomy but after reading up on things, and other factors such as my age etc. I decided to go with Bil NSM. I am happy and at peace with my decision especially after finding out my "normal" boob was full of LCIS. So just listen to your heart and go with it.

    I have implants and I saw in your other post that you wanted to know everything about surgery, good and bad. I have been pretty lucky as to not have many issues. The worst part about the process was the drains and expanders, they are extremely uncomfortable and painful. I had to have my drains for 3 weeks which made it almost impossible to get comfortable and sleep. But once they are removed it is instant relief. As for the expanders (cement bricks) I only had them in for 4 months but was in pain majority of time. Again, once they are removed and implants are placed it is instant relief. The other issue was ROM. My ROM was pretty bad after the MX and didn't get better until I found a PT who specializes in BC patients. It made the world of difference and my ROM is almost fully restored. As for the cosmetic outcome, I am very pleased. My boobs look very natural. The only downside is - I have rippling which drives me a little crazy. And am now dealing with some scar tissue on one side. But otherwise no complaints.

    Just know things get better as time goes on. But let yourself be angry, cry, and vent if needed. We all have those days, especially in the beginning. I wish you the best going forward :)

  • Lostchick
    Lostchick Member Posts: 27
    edited May 2020

    My personal experience was that I had a positive biopsy of invasive lobular carcinoma diagnosed via biopsy on my right. I also had been diagnosed with LCIS on the right. There were 3 spots on the left that they wanted to biopsy but I was just so freaked out by it all that decided to have a bmx with reconstruction. I felt at times leading up to the surgery that it might be overkill but I also really didn't want to go through chemo or radiation. I ended up doing bmx on 5/12. They found 2 invasive ductal carcinoma tumors (small 4mm and 5mm) on my right during pathology after the bmx. 2 nodes were removed on each side 2 weeks before bmx that came back negative so surgeon is calling this a definitive surgery! The surgery was not easy and I miss my breasts but feel justified and thrilled with my decision.

    That being said, the decision is yours entirely. I know it's hard. Wishing you the best whatever you decide

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2020

    I feel for you. I remember what it was like when I had to make that exact decision. I wanted to just have someone TELL me what to do, but no one would. I chose lumpectomy because I would be back at work more quickly. Definite pros and cons though. My number one issue is that now, a few years out, mammograms hurt because of the scar tissue around the old surgical site. But, that's only once a year.

    It's tough. I'm sorry you have to go through this!

  • Smebfcacom
    Smebfcacom Member Posts: 1
    edited May 2020

    Sending you hugs and strength. For me it seemed like I'd just been pulverized with a cancer diagnosis and now was expected to make a decision on which surgery to have because they say it's up to you, but many of us have no idea of what to do. I knew so little at the time I was diagnosed. Thank God for the internet, youtube and community chats like this one. I kept my diagnosis between myself and one friend until I learned more and had all the pieces. It was a rollercoaster of changing diagnosis, very poor sleep, fear, anger, anxiety etc. Once I heard multi centric (dcis in multiple areas throughout the left breast) high grade, necrosis and microinvasion, I had decided mastectomy was my best option. Even though my doctors told me that there was less than a 4% chance I'd get cancer in my right breast after mammograms and an MRI with contrast cleared it. I still went ahead with the double to treat aggressively, avoid future mammograms and possibly avoid having to go under the knife again in the future just in case. When they removed both breasts during surgery, they checked the right breast tissue under the microscope and found lobular precancer after I was cleared by both mammograms and MRI, scary stuff. It turned out that I made the right decision to remove both, as that may have also turned into cancer in the future. Both breast surgeon and oncologist told us at post follow up appointment. That being said, the decisions we make are personal and the best we can do is to research and try to make the best decisions for ourselves and our loved ones. The surgery itself wasn't too bad, I was walking up and down my driveway the day after surgery. Four weeks out and I'm walking nearly 3 miles a day just for pleasure and I feel stronger than before. My major complaints are how I wished someone would have told me to start taking stool softeners right after surgery, as the pain meds gave me SEVERE constipation. The expanders are a bit uncomfortable as expected, but I got used to them quickly. They do plan to start expanding next week, which I hear is very uncomfortable and painful. I'm trying to brace myself for it and keep a positive attitude. We've received so much support and prayer from family and friends. I thank God everyday and continue to pray for complete healing for all of us. Wishing you the very best of luck! Take good care of you, it's your time now.

  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    I met with the surgeon and after many prayers, tears and conversations, I decided to have the lumpectomy with radiation. Hopefully that will be all that I need, but as we all know, things can change in a second. i feel at the time that this is the right decision and i appreciate you all more than you know. thank you again to all of you who has shared and continue to share. i will update my story when another chapter has been written!

  • QueenB44
    QueenB44 Member Posts: 27
    edited July 2020

    This post is very helpful to me, thank you. At this time I'm having a hard time making a sound decision. I really understand that its easy to be at a loss on what to decide. I was just diagnosed a 2nd time with DCIS High grade, Comedonecrosis on a breast that I had a lumpectomy 18 months ago for DCIS low grade. Now it's in multiple locations. I'm leaning toward a BMX that some are saying is an aggressive approach, yet I'm feeling like it just all needs to go. I'm also reading about so many going this route and the pathology finding more that the mammo/mri didn't find which is scary and even more reason to have the bmx. Now I'm just nervous about the surgery and after effects. Good luck to you and thanks again for posting your experience.

  • auntpondie
    auntpondie Member Posts: 14
    edited July 2020

    I went with the lumpectomy and just had a second surgery to widen my margins. I actually go to the dr tomorrow for follow up from this. I’m writing this not knowing if everything went well with the second surgery but I feel as tho I ultimately made the best decision for me at the time. I am still filled with a lot of fear of what is next, if there is a next or was this it. I’m so proud of everyone on here for being strong and being there for each other. Each post is helpful in its on way. Good luck with each journey

Categories