Lumpectomy or complete removal

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auntpondie
auntpondie Member Posts: 14

I want to hear from both sides with thoughts, fears, pros and cons of each surgery. I want to hear the good and the bad stories. I have a big decision to make and I want to hear from other warriors out there for some advoce

I have to tell the surgeon by Wednesday I what I’m going to do. I know where my heart is leading, but would like to hear from some of you who are already going thru this. . I appreciate full honestly pleas

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  • toria1212
    toria1212 Member Posts: 136
    edited May 2020

    Hi there,

    I was diagnosed Stage 1 IDC with a 5mm area. I really was not recommended to have a mastectomy and during COVID19, I decided a lumpectomy was 'safer'. Had it NOT being during the virus, I may have considered a double mastectomy, I don't know. The area is so small, and so E+ that it was not too hard to choose a lumpectomy.

    Can you provide your diagnosis information? I am sure that may help some of the ladies here.

    I am sure you will make the best decision for you. My recovery has been pretty smooth, I have already started on my hormone suppressor, and my radiation appointment is this upcoming week. I feel blessed that things are moving along for me.

    This is a strange time in the world-and it adds anxiety and stress to an already frightening situation. Some of it is a leap of faith-I did not "shop" around in any way for doctors, as my gynecologist recommended all three of my docs, and they are all amazing. It's so individual. I get overwhelmed by too much info-some people want to research, research, research. I tend to throw fear into the mix. Not that I was not informed, but even now, when I read bc stuff, I tend to get upset.

    There is so much support and help here-I hope you feel supported as I have

    xx

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited May 2020

    It's impossible to give you an answer without knowing pertinent information like the size of your tumor and your age, for starters. And even then, my decision might have nothing to do with what is best for you. It's just one of the things about breast cancer, having to make that decision for yourself.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited May 2020

    Having done both a lumpectomy and a mastectomy, this is my opinion:

    A lumpectomy was lower impact physically, mentally, emotionally, and sexually. For me a few weeks of radiation to my breast was MUCH easier than getting a mastectomy. After the lumpectomy my body, range of motion, sensation, and everything else was the same, except for the little scar.

    The mastectomy is a bigger surgery, and resulted in more longterm impact. Nerves are cut, there is always numbness, and sometimes ongoing pain. My shoulder stability, range of motion, pain, and body image are very different now, and not for the better. I'm a stomach sleeper and the tissue expander felt like lying down on a dessert plate.

    There are no guarantees with either surgery. I had local recurrences after both the lumpectomy and the mastectomy. My advice would be to do what you need to do to deal with the cancer, but do what YOU feel like you can live with the most happily for the longterm.

    I'm not trying to influence you. That was just my experience with both surgeries. Best wishes for your decision. It's hard for sure.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited May 2020

    Cancer is hard because for the first time you have to make all these decisions. It was so much easier when a doctor said take this or do that. You have to trust your doctors totally and then decide for yourself.

    I attempted lumpectomy. When they do it if all the cancer is not taken out you can have a second surgery called "re-excision" where they take more (that happened to me).

    After the 2nd try the breast surgeon said it had to go at that point. I had the mastectomy done.

    I had very dense tissues and they firs thought my tumor was .7 cm and the final pathology was over 5 cm large!!! Could not be seen or even felt on exam.

    Every person is different. Even as big as mine as they said my cancer was "nice cancer" (like there is such a thing) because it would respond well and I had a low onco score I managed to escape chemo.

    Because of having the mastectomy's being done I also escaped radiation.

    Best wishes for a speedy recovery from surgery. The waiting right now is the hardest part to get through.

  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    I can’t thank you all enough for responding. Hearing others stories means a lot.

  • jcp
    jcp Member Posts: 112
    edited May 2020

    aunt blondie, Do you have an estimate of the type it is like DCIS, DCI, lobular, etc, the size, if it is Er and pr positive , if it is her2 neu negative from biopsy or any info at all? That would be important in thinking about which one to do . Post back and I will reply asap. My mom had it , I've had it, and I will let you know what I have learned as all the others are so generous. Thank you. JCP

  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    JCP....

    Invasive ducal carcinomaGrade 2 Stage 2 (2 cm) ER and PR positive HER was negative

  • jcp
    jcp Member Posts: 112
    edited May 2020

    aunt blondie, This is JCP again. I can give you my feeling and story but a lot of it would depend on factors of your ca and your feelings. First off, I was diagnosed late 2005 from a mammogram.

    It was IDC invasive ductal carcinoma with sentinel node biopsy showing no node involvement when I did a lumpectomy. At that time in early 2000s, the medical community was all about breast conservation. No dr, and I went to three, recommended a mastectomy. I know my Mom had a mastectomy back in 1987 but that was the thing at that time. I knew my mom had a mastectomy but I was like overwhelmed, and I truly wish they would have said something about the possibility of getting a mastectomy. I didn't know any newer facts about getting a mastectomy compared to 17 years prior w my Mom. I think one dr did say it is the same outcome w either one but w the lumpectomy radiation would be done following surgery. That was not difficult at all. It was just the commuting 20 miles daily to the hospital and getting back home. I was in there for maybe 15 min max. The size and location of mine just less than 1 cm they all recommended lumpectomy/radiation, not even mentioning that mastectomy was a choice for me. I was in a fog and dont remember addressing the choice. I had the lumpectomy without any complications. It was not that bad at all. I had absolutely no problems with the area they took out the sentinel nodes probably bc they only took two. I am thankful for that as I was a newlywed of 3 weeks and had just moved 300 miles away from my city w my six year old. I knew no one but my husband and child. I spoke to my mother about it afterwards, and she said she really thought it was too much for me and new husband to handle the mastectomy along with the move, etc. I was easily transitioned into radiation and at that time chemo was recommended more often so I was recommended with oncotype score of 18. Which was right on the cusp of needing it vs not according to the standards at that time. By today's standards I would not have had it unless I was at 25 or 26 oncotype. So all went okay, chemo a little rougher than radiation. Radiation caused no redness or anything and to this day it the exact same color as other breast. I am thankful for that as well. But, a couple of years ago when I had to come off the hormonal therapy due to the estrogen blockers for postmenopausal women causing me osteopenia and osteoporosis and it was getting worse. Also I had been on estrogen blockers for 10.5 years, and she said it is standard to come off it after ten years. Well that caused a whole lot of anxiety bc I felt no sense of protection. That is the time my onc recommended for me to get a bilateral mastectomy only due to my anxiety. Medically she said it was not needed. I asked and she did say that it reduced my chances of recurrence from upper single digits to teen numbers down to like 1 percent! I was like omg wth didn't anyone tell me this when I first got diagnosed. I was very regretful about not getting them both off back in 2005. I could still do it now but it is a huge undertaking with reconstruction that requires multiple surgeries and a risk for complications including complications from the new implants. You dont have to have to get recon through. I really wanted to do it so I saw another dr and another surgeon. Surgeon said you dont need it. The other onc said he would let me have two mammograms a year that I had wanted but may have to pay for one I soul searched and eventually I went back to my regular inc of 10 years who would not give me additional screening. She said I am recommended to get the same screening as everyone even if they haven't had cancer which I disagreed with. It was a mammogram yearly. She said she wouldn't know what to put on order for MRI which I originally wanted yearly so we couldn't do that or extra mammogram. Ok enough said but if I had to relive 2005, I would have gotten it all done in one fall swoop. A bilateral mastectomy, one prophylactic, one not. The recon would have probably been the hardest. That's why I haven't done it yet. My mom went through so much with her draining tubes hanging down, getting stretched for implants or whatever it was. It was a long process. It did turn out well though and her body accepted them fine. It was very very long though or it seemed that way with trips to plastic surgeon regularly and operation(s). I really like how much less risk it would be now. It's a game changer but my onc said it really isn't. To me going from like 15 percent or more likely single digit like 8% anywhere in that approximate range of recurrence to 1% of recurrence in breast is a LOT! I was dumbfounded that she didn't think it was much of a difference ! OH well, so I stayed with her bc it was too difficult for me to leave the onc with me for 10 years. Now there is a company that's been around for at least 15 years called Herscan in a few states, and you dont need a dr order to get ultrasound done so I do that once a year in addition to mammogram. It is not as thorough of a report unless something is found. It is read by radiologist and last one said "normal." But better than nothing I suppose, and I do get 3d mammograms now.

    Ok so I wish I had done the bilateral mastectomies but you can always do it later if you choose to get lumpectomy now. Insurance covers it then, too. Let us know what you chose. You will do great either way! Sorry for my long history. Once I start writing I find it difficult to stop! Susan JCP




  • jcp
    jcp Member Posts: 112
    edited May 2020

    aunt blondie, I just saw your info before I turned in my experience. How old at diagnosis? That is important


  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    I am 47 and thank you so much for your story. It means a lot to have other women share such personal ecoer

  • jcp
    jcp Member Posts: 112
    edited May 2020

    aunt blondie, This is not medical advice but if you are over 60 or if you are younger than that but have other significant health issues that you have to take care of and monitor, like diabetes, kidney, heart problems, etc or of you've had a tough couple of years in the past with personal life or medical issues, then if I was in your shoes, I would choose lumpectomy. But that is only me, not YOU. You have to consider your current situation with support, etc and come up with what is BEST for YOU! If you are under 60 and have generally good health and a decent support system, along with life being generally okay the last two years, personally, if I were you and I AM NOT, I would do the a mastectomy or bilateral mastectomy depending on how much of a worrier you are and if you're young. If you're a worrier regularly and/ or if you are in your forties or younger, if I were you, I'd get both off bc being younger you would have many more years with screening etc.and I saw on these pages that the older you get (relatively speaking) the chances increase for br ca. Now I don't know if that includes the ages of 70s and 80s though. The bottom line is, and I know you know this, is that YOU make the choice. I think really you'll be just fine, either way. You are hormone positive and that means you can take hormone blockers if you want to and it's recommended. Even if you weren't hormone positive, though there are other treatments for that. Let us know what you decide and we will support you all the way!! Susan JCP

  • jcp
    jcp Member Posts: 112
    edited May 2020

    aunt blondie, you are young! My mom was 46 at diagnosis and I was 42 yet neither of us had genes associated with br ca.and I recently had the whole panel of like 12 or so of them! They do say that there are probably even more genes and just haven't found them yet. It's just so odd that families can have multiple people diagnosed and there is not a gene linked to it. If you can get tested before surgery that would also help lead your decision. If you cant it's fine but something to consider later.hugs, JCP

  • mitziandbubba
    mitziandbubba Member Posts: 177
    edited May 2020

    I had the genetic testing after surgery - my doctor didn't want me to make a rushed decision. I didn't have any genes associated w cancer either. For me, lumpectomy was the preferred option due to the added risks of the more invasive surgery and the longer/harder recovery time. I am very physically active and this was the most important thing to me. I was 48 btw and this did not factor into my choice. Mast was not a choice for me, I would have of course done it if there was no choice. I am very happy to have been able to have the lumpectomy. I look and feel pretty much the same as pre cancer, although I am still regaining my strength/fitness level.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited May 2020

    mitziandbubba, that was my experience too - before cancer I was athletic and really valued being able to do things physically, and being pain free. After the lumpectomy I was nearly back to my usual self. I've never been able to get back to that after the mastectomy. I feel like the mastectomy made me less physically able, and I have more pain even with ordinary things, like doing dishes. Anyway, we do what we must to get rid of the cancer, but the lumpectomy was much better for me.

  • auntpondie
    auntpondie Member Posts: 14
    edited May 2020

    Good Morning. I have my appointment with the surgeon this morning and after A LOT of prayer and soul searching, I have decided for now that the lumpectomy followed by radiation is the best decision. Once the pathology reports are back, we can pray for the best again at that time. I appreciate you all being so candid with me and letting me ask questions and share my fears. Hugs to all of you

  • jcp
    jcp Member Posts: 112
    edited May 2020

    good luck, Auntpondie! You will do just fine! Susan JCP

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited May 2020

    I hope everything goes smoothly for you and that you have a quick recovery!

  • Iamloved
    Iamloved Member Posts: 228
    edited May 2020

    Saying a prayer for you tonight. Tough decisions for sure. 🙏

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