Changing my mind to lumpectomy?

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hray1993
hray1993 Member Posts: 342

Me again, I feel like I'm constantly posting about making this decision between lumpectomy and mastectomy. Here's my thought process, when first diagnosed I chose double mastectomy wouldn't even consider anything. Then after hearing recurrence rates are the same doing lumpectomy with radiation I chose that option. Well then my tumor started growing while on chemo and it scared me so I went back to double mastectomy. Now I'm on AC chemo and my tumor is so small now I can barely feel it. Before AC chemo when I was on taxol it was over half the size of my breast so it has shrunk a lot. Now I'm thinking of doing the lumpectomy again with radiation. I'm young, 27, and I feel like I just can't make the big mastectomy decision and be confident in it right at this moment.Partly because I'm scared to death of that huge surgery and then I think about all the complications that could come with the surgery that could affect my quality of life for the rest of my life. Do I have to make a decision now? Can I choose lumpectomy now and if say in a year or so I decide I want the mastectomy would my insurance cover it at that point or would I have to do it now for it to be covered? I feel like I'm in over my head right now. I have chemo wearing on me so much and I just feel like I can't be confident enough to change everything so drastically right now so I'm wondering if I can choose lumpectomy now and then once I'm better and have a clear mind decide if I should do mastectomy or not. Please give me your stories on how you chose to go with lumpectomy instead of mastectomy. What helped you make that decision ?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2020

    hray - of course you have questions, its a big decision! I think you are smart to consider the pros and cons of each type of surgery so that you are making an informed decision rather than one based on an emotional reaction. Firstly, I am brokenhearted that you even have to wrestle with this at such a young age, it is so very unfair. I am old enough to be your mom and I struggled with the very same question. My oncological breast surgeon initially offered lumpectomy and 5 day brachytherapy rads as an option. I had large B cup breasts and a tumor that was a minimum of 2.6cm and located at the outside edge of the breast kind of where an underwire in a bra would end. I had surgery prior to chemo and I was concerned that taking that much of my breast in that location would pull the nipple to the side and bug me due to the asymmetry. My secondary concern was that this very palpable tumor did not show up on my mammogram, only on ultrasound. I did not trust that imaging going forward would pick up a recurrence or a new primary. I had been closely monitored (imaging every six months) for quite a while, but I still had extremely dense breast tissue even nine years after surgical menopause, so I was difficult to image. How was your tumor found? Was it easy to see on mammogram, or did it require additional forms of imaging to detect? I realized that for me personally, bi-lateral mastectomy was the only surgery that would give me peace of mind knowing that my larger tumor in my smaller breast couldn't been seen on the first line of imaging. I ended up having a bunch of unseen DCIS with my triple positive IDC on the cancer side, so much so that it had also moved into the lobules, and also had copious amounts of atypical lobular hyperplasia and atypical ductal hyperplasia in the non-cancer breast, so potentially a ticking time bomb - surprise! Have you had MRI done? It is important to have a full picture of all that is going on in both breasts before a surgical recommendation can be made. I had always had numerous cysts in both breasts simultaneously, all the time, so self-exam was pretty useless, further complicating things. Several questions to ask yourself - if the lumpectomy creates a non-symmetrical breast, will you be ok with that? Not that this will be a foregone conclusion, but is a possibility depending on your anatomy and how much tissue needs to be taken. Your surgeon should be able to address this and should be discussed. One option, if you are a candidate, is talking to a plastic surgeon who does oncoplastic work so that they can rearrange some tissue during your lumpectomy and fill in the lumpectomy defect for better appearance. Something else to consider, if you did lumpectomy and radiation now it may complicate mastectomy with reconstruction later should you choose that later. Radiated skin doesn't stretch well and can eliminate some kinds of reconstruction down the road - usually implant - leaving autologous flap surgery as your only option. It is important to consider whether this is something you want to undertake if you would choose to reconstruct. Previously radiated skin is less of an issue if you choose to go flat but can cause some healing problems even in that scenario. How do you feel about the level of imaging surveillance you will need if you choose lumpectomy? Some really struggle with their worries and emotions when it is time for mammograms after lumpectomy, and particularly if something shows up and further imaging is needed. You would likely be on an accelerated schedule of imaging for some period of time following your active treatment, so it is important to give that some thought. There are people here who have had a lumpectomy and later opted for mastectomy, your surgeon should be able to tell you whether your insurance will cover the later surgery - usually they have to code it so that it is medically necessary - but I think for the most part it is covered. You would potentially have additional expense with a new deductible in a new insurance year for the additional surgery. I sure wish you didn't have to make this decision, it is hard, but particularly so for a 27 year old. Wishing you the best, hang in there.

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    Thank you so much for all the information. I'll try to answer all your questions without skipping anything. My tumor was found by myself. I felt it one day then went to my gynecologist and so began the journey. I had an ultrasound first because they believed it was a cyst because of my age. It was easy to see on ultrasound then I had a mammogram and was also easy to see on mammogram. I'll attach a pic of my mammogram. Im on a clinical trail so I've had I think 4 mris by now of it. I'll be getting another mri tomorrow. It's easy to see on mri as well. I always have them show me when it's done. I'm a very deflated looking D cup, and my tumor started at 3.5x4 cm at diagnosis in December. When I started chemo it was 7x7 cm. It went down some to the smallest so far 2.9x3 then once I finished clinical trial drugs and was taxol only it grew to almost 6x 5.5 cm. I started AC after that and when I went for my second AC treatment it had went down to 2.5x1.5 cm thank God!! I'm getting the MRI tomorrow to make sure the AC is working because if it wasn't we were going to stop chemo and go straight to surgery. I feel like my tumor has shrunk even more since my second AC because I can barely feel it now. I'm hopin on the scan it's less than 2cm. But we will see. I feel like if the AC can shrink it down even just a little more or get rid of it completely I'd feel comfortable doing lumpectomy for now until I can make a solid decision on mastectomy. I worry about recurrence but I also worry almost more about my quality of life. I have 50+ years left I hope and I'd hate to be in constant pain every day from complications from a mastectomy. If I do choose mastectomy I know for sure I don't want implants. I had planned on doing the diep flap surgery so that would be fine with me if that was my only option in the future. I feel like if after lumpectomy I continued to have abnormal imagin check ups I'd go ahead at that point and have the mastectomy. I just really am lookin at my quality of life right now because chemo has really shown me how much It can be affected. I feel like if I choose lumpectomy now I can have a more normal quality of life without complications from that huge surgery. I should probably add I have no lymph node involvement. There was an enlarged lymph node at diagnosis but it was biopsied as well and came back clear.imageimage

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

    I'm sorry are dealing with this so young definitely. The choices you have to make at the beginning is very hard sometimes and easy to question.

    I had ER+/PR+ and HER2nu- cancer. My breast surgeon told me it was "nice cancer" if that is any help to you in your decision.

    I did try lumpectomy myself at first. They do check for "clean margins" (which I did not have) and then I had re-excision to get more after that. Still not and at that point the decision to mastecomy was done.

    You don't have to rush right into mastecomy if you do not want to though. If you can get clean margins you can have your non-cancer side reduced and lifted to match if you want since you are so young your may prefer to do that. I was already into my 50's by the time I got my mastecomy and kind of wanted my non-cancer side to stay "me" so I am totally lop-sided at this point but it is ok. I have no cancer in me right this minute to my knowledge.

    Best wishes to you and for speedy recovery. With hormonal meds afterwards you should have a nice life ahead of you to look forward to.

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    bcincolorado, how big was your tumor when they tried lumpectomy and couldn’t get clear margins? I’m honestly so ready to get back to work and to a place where I feel like I can support myself again. I know with the mastectomy it would take much longer for recovery then reconstruction and still the possibility of radiation and I’m just ready to be done and get on with a new normal in life

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    hray, it is completely your decision, and these decisions are very personal for all of us. I can give you my experience having done both a lumpectomy and a mastectomy at a young age.

    For me, the lumpectomy was preferable: it was lower impact physically, mentally, emotionally, and sexually. After the lumpectomy it was easier to put all this cancer stuff behind me. I still looked the same, felt the same, and was "at home" in my body. I also had no chronic pain with the lumpectomy, because the lumpectomy is just not as invasive as a mastectomy. After the mastectomy, I had much more physical discomfort, and my body was forever changed. I still feel disfigured by that surgery, and that is difficult from an intimacy perspective.

    Sometimes a mastectomy is necessary, but my personal opinion is that a lumpectomy is preferable if it's an option. Here is a study which also found that for young women, quality of life is more negatively impacted by a mastectomy than a lumpectomy. You might find it to be an informative read: https://www.mdedge.com/obgyn/article/191479/breast-cancer/qol-poorer-young-women-after-mastectomy-bcs

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    buttons, thank you for that read it was very helpful. Up until now, seeing how chemo affected me I hadn’t really thought about my quality of life. Now that I am I think having a better quality of life long term outweighs the small chance that my cancer could come back. It just doesn’t seem a life worth living if I’m in pain every day for the next 50 years due to mastectomy changing things. I think I’d rather have a good quality of life, range of motion, etc and to worry about cancer if it does come back one day at that time.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2020

    hray - I am so glad that you image well, and that your tumor could be seen with mammography - that is a bonus at your young age, since younger women usually have denser tissue. My personal opinion - and that is all it is - you may be well served by lumpectomy. It will preserve feeling in your breast(s), allow you to move forward more quickly, and since you would not be looking for implant recon in the future the radiation piece after lumpectomy is potentially less damaging and wouldn't limit your options going forward. Since you are hesitant about mastectomy, I would listen to that voice in your head for the moment. Once your breasts are gone, they are gone. Lumpectomy allows you a minute to breathe and think about the future. Two things - look at talking to a plastic surgeon about oncoplasty during lumpectomy if there will be a significant defect after surgery, and also check and see if your surgeon can have the margins looked during surgery. There is an instrument called a Margin Probe (see link) that can help minimize the need for re-excision after lumpectomy, which normally happens about 20% of the time. I don't know how commonly this is used, but it is worth asking about. Good luck!

    https://www.breastcancer.org/symptoms/testing/types/marginprobe

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    specialk, I think that’s what I need. A minute to breathe and think about the future. Plus being so young I hate to use up all my defenses now. I’m already doing AC which I can’t ever do again if it comes back, if I were to choose mastectomy then I don’t have that option if it comes back. If I do radiation then that option is gone if it comes back too. I think I’m going to do lumpectomy and hormonal Therapy now so I still have some good defenses if it happens to come back one day. I hate to use them all up now and be left with nothing except clinical trials if it comes back one

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited June 2020

    Such a difficulty decision and I am sorry you have to be in this situation at this young age.

    I was diagnosed with a small cancer and I was recommended lumpectomy. I decided to go for BMX with nipple spearing for these reasons:

    1. I didn't want to be fearful anytime if I would feel something weird in my remaining breast.

    2. I didn't want to worry when I would had mammograms, etc.

    3. I was concerned that if it happen once, my body has the predisposition to create breast cancer again.

    4. I had a dense breast and mammograms didn't show much. I would have to fight with insurance to do other screenings.

    5. Lumpectomy would create a different shape of the breast and look different from the other breast - a cosmetic problem that wasn't very important when you fight cancer but it is there.

    6. I didn't want radiation that comes with Lumpectomy.

    I can say that having BMX was a good decision for me. Pros:

    1. cancer was found accidentally in the other breast after it was removed.

    2. recovery from BMX was easier than I thought

    3. I don't worry about breast tests anymore

    Cons:

    1. I didn't expect that I would lose the feeling of breast area. It is getting better but feels strange.

    2. Implants are not the most comfortable thing. One side is fine, the other one feels tight when I stretch my arms or exercise.

    I also thought all these women around the World pay for implants for cosmetic reasons, it would be OK for me to have a normal size implants, same size as I was before.

    It is your call and how comfortable you would feel. Good luck!



  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    hray, for invasive cancer a lumpectomy will typically need to be done in conjunction with radiation to be effective.

    That being said - don't worry too much about what can or cannot be done again in the future, let the doctors figure that out if the situation ever arises - which hopefully it will not!

    I did get radiation to the same area twice. I also had the chest wall resection (kind of like a radical mastectomy) due to a local recurrence after a failed mastectomy.

    I only mention that because I was told by some doctors early on that "you can't do this or that again" only to find that the reality was a bit more complex.

    I hope that makes sense. Hugs and best wishes for your decision.

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    does anyone know if radiation has to be done at the same place your chemo was? My chemo is done at the hospital I’m using which is an hour away but if I have to do radiation I’d like to do it in my hometown so I don’t have to drive two hours every d

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    Hray - no. My oncologist was with one medical school affiliated with a major hospital. I had my chemo there. My breast surgeon & plastic surgeon were with another major hospital, where I did all surgeries. I got recommends for two ROs from my MO - neither of whom were with EITHER hospital, but both of which were much closer to home. I ended up at an MD Anderson outpost for rads. Be sure that at least your MO (who drives the bus for cancer treatment) can recommend a rad place closer to home.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    Ditto what MinusTwo said - you can ask your MO to recommend a radiation oncologist closer to home.

    The second time I did radiation I opted to do it far-ish from home, and my cancer center was able to set me up with a temporary housing for patients for that month. That might be another avenue to explore if necessary.

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    I hadn’t thought about that. Was the temporary housing expensive?

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

    When I was first diagnosed with cancer I have dense tissues. They thought mine was .7 cm and very small originally so they did not take out much the first time around. Then when there were not clean margins she called me to tell me and we scheduled the re-excision to take a little more. Then after that time around and no clear margins they said it had to go. My tumor size was really 5 cm and not small at all.

    Mine could NOT be felt like yours at all and was found on mamo only. Breast surgeon even said what a good job the radiologist did in finding it because if he had not marked where it was on there she would have had a hard time seeing it.

    Yours is more defined I think. It is still what she called "nice cancer" as far as cancer is concerned. Some are very aggressive and harder to treat. Taking a pill a few times a day for many, many years beats cancer any day in my book.

    Best wishes.










  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2020

    They were able to do the housing at a sliding scale rate - and since I'm single and under the income threshold, it ended up being really affordable for me. I think my radiation oncology nurse practitioner put me in touch with a social worker who set it up. It was a big help to have that, and I did drive home on the weekends.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2020

    hray - if you are going to Birmingham for rads there is an American Cancer Society Hope Lodge there that can offer free housing, see link. We have one here in Tampa, co-located at Moffitt Cancer Center, an NCI center, it is a wonderful facility.

    https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge/birmingham/staying-with-us.html


  • jcp
    jcp Member Posts: 112
    edited June 2020

    hray, You seen to be handling this well and with grace being so young. I was 42 at DC in 2005. I agree with others not to worry about what is left to do later if needed and get done what is recommended now if you are comfortable with that. The thing is IF God forbid there is a recurrence for anyone, by then hopefully there will be even better treatments. You probably want to do what will work for you now giving you the best chance it won't come back. I do understand about the lumpectomy / rads vs mx. I was married 6 weeks prior to my diagnosis and only3 weeks out from a big move with my 6 yr old. In 2005 it was all about breast conservation if possible. Not one dr even mentioned a mastectomy and I had three different opinions. So that is what I went with lumpectomy/ rads .Its not so much that I chose lumpectomy and rads, but I was in a fog and that was the path I was being lead to. Idk.The healing and surgery etc was not bad at all. No lymphedema but took only two nodes out. The rads went quickly and I did rads at a different place than chemo. Years later, I now wish I had got bilateral mastectomies bc it has caused a lot of worry since I came off hormonal therapy after 10.5 years due to bone loss. I just feel unprotected. However, my mom who had also gone through br ca and had mx, said after the fact that she really thought the mastectomy would have been too much too handle emotionally for me and w my new husband and new location where I pretty much knew no one in the whole city and my son had a new school, stepfather, etc...... Looking back I think she probably was right. I was told I can still get a mastectomy this much later and get it covered by insurance but I dont know the details so I dont forsee that as a problem if you decide to do it later. Take care of yourself. If you need anything let me know. Glad to try and help. JCP

  • hray1993
    hray1993 Member Posts: 342
    edited June 2020

    specialk, I am getting my treatments in Birmingham. I didn’t know anything about the hope lodge. Thank you so much for telling me about it!! I’ll definitely keep it in mind when the time comes

    Jcp, that is a good point to think About that hopefully there will be better treatments later if a recurrence does happen. I think mastectomy is just too much for me to handle right now. I need a breather. I was diagnosed in dec and my fiancé's mom passed away in February so it's been difficult helping him with his grief on that as well. It's been a lot emotionally I feel like lumpectomy will give me the breathing room I need till I'm ready to make that decision on mastectomy or not. I have no lymph node involvement and my tumor thank God has shrunk drastically and I still have two AC treatments left to go so I feel like lumpectomy is a safe decision at this time. I need to get back to feeling like I have a life and being able to be there for our kids instead of just making it through the day and feeling like some washed up lab rat they are just injecting poisons into. I need to feel like I'm a person again and I think lumpectomy would help me do that quicker

  • mightlybird01
    mightlybird01 Member Posts: 217
    edited June 2020

    i am much older than you (50), but also had a really hard time to decide between those 2 options. I ultimately decided I wanted to safe my body the radiation, and my mind the follow-ups MRIs etc, and worrying about that cancer breast. A friend of mine had lumpectomy and radiation, and one year later, they found something on that breast, which means another biopsy only to find that it is some sort of scar/fat or god knows what tissue, benign. Of course the cancer breast will always be looked at with uttermost scrutiny, so any small thing will be followed up. Lots of anxiety and worry.

    I only had single mastectomy, so that is probably easier than double, but really, recovery was not very hard and I must say I am 100% back to normal strength. The first 3 weeks were the worst, and by 5 months it was pretty much back to normal. I did not even have reconstruction (small breast to begin with) and found a great bra that I really think I look well in. I really think that either way you will be fine. While my Dr. did not push me one way or another, they seemed very happy with my decision of mastectomy rather than lumpectomy with radiation. The oncologist was leaning more towards the mastectomy, breast surgeon also always assured me that usually young (if you believe it or not, I qualified as "young" :-)!), active, thin people do very well with mastectomy. I guess you just have to make a decision and stick with it....


    Good luck!


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