Choosing between Lumpectomy+Radiation & Mastectomy

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SavingGrace
SavingGrace Member Posts: 30
edited December 2018 in Radiation Therapy - Before, During, and After

I am newly diagnosed with invasive ductal carcinoma. The tumor is small (8mm) on the left side, and from the initial imaging tests this is the only tumor in existence. The standard treatment is lumpectomy with radiation. Because the tumor is on the left, there is an increased risk of heart damage, which makes me very, very worried. I am in my 40's and otherwise healthy. Should I take on the risk of harming my heart, which I will need for as long as I am alive, or should I just go ahead with the major surgery (mastectomy with reconstruction), and take on the risks of complications? I am told by multiple doctors that the risk of radiation is small and I should not worry, and there is always a possibility that I will need radiation even with a mastectomy. I just cannot get over the fact that I am choosing something that will damage a healthy heart. I read the information online and talked to people. Still really torn by the decision. HELP!

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2018

    It's a really tough decision--sorry you have to make it. Welcome to BCO though!

    It's true that a mastectomy doesn't guarantee you won't need radiation--nothing will be certain until your post-surgical pathology comes back since imaging doesn't always show everything. Hopefully someone who has had left sided radiation will come along and address your concerns. Have they told you what your hormone receptor status is? Have you had a consultation with a radiation oncologist who can describe what they will do to try to protect your heart? I think there are several techniques they can use to minimize risk.

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  • SavingGrace
    SavingGrace Member Posts: 30
    edited November 2018

    Both hormones are positive but negative on the other (can't remember the name). My team won't let me speak with a radiation oncologist until after the surgery when the results are in, but did let me know the risk is small and say they can do something to protect the heart, in a very general term.

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  • DanceSmartly
    DanceSmartly Member Posts: 69
    edited November 2018

    Hello SavingGrace:

    I, too, am in my forties, have a very healthy heart and was diagnosed with early stage breast cancer on the left side. I finished my radiation 9 months ago.

    Depending on the location of your tumour, you may be a candidate for DIBH (deep inspiration breath hold) radiation like I was. The idea is that you hold your breath during radiation to drop your heart to the back of the chest cavity and thus out of the way of the radiation path. When you go for your tattoos and simulation, it is likely that the techs will do 2 simulations for you: one breathing normally and one holding your breath. Then a lot of modeling (computerized physics!) will be done to determine which angle(s) will expose your heart and lungs to the least amount of radiation. I asked to see my simulations before starting radiation, and my RO showed me how holding my breath dropped my heart completely out of the radiation path (my left lung did get some exposure, however). So, I decided to go ahead with radiation. I had to hold my breath 4 times each treatment for up to a maximum of 15 seconds; it wasn't overly difficult (though I understand the number of times and the length of time for DIBH varies for each patient).

    Hope this helps!

    Dance

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    SavingGrace - I am 41, L breast IDC, had my Lump + RADs. Just finished on Halloween.

    I was worried about RADs affecting my heart and lungs. My RO was able to assure me that this would be minimal, if at all. Plus, like DanceSmartly mentioned, I also received Gated Breathing RADs, which dropped my heart out of the affected field.

    I'm guessing with being newly dxed that you have not met your Radiation Onco (RO) as of yet? I know I didn't meet mine until after surgery was over and everything was a "known" factor.

    If this is the case, and you are worried (rightly so to be concerned for your health - we are our own best advocates), perhaps you can talk to your Surgical Onco (SO) to see whom you would be referred to for RADs if you choose that route, in order to meet and discuss your concerns before you make a surgery decision?

    Hang in there. THe beginning is the worst. So many decisions, doctors, questions, concerns, stresses, and unknowns....not to mention the waiting to figure out what will be happening and the exact pathology that determines so much. It's a rollercoaster, but we're here for you.

    Keep us posted and ask questions.....we'll help in anyway we can.


    ((((((SAvingGrace))))

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    Oh, meant to add these diagrams my RO gave me, in order to expain how the RADs would work for me. Maybe this might be helpful for you to see. (posted originally in October & November 2018 Radiation Threads)

    https://community.breastcancer.org/forum/70/topics/868068?page=3

    image


    image

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    SavingGrace,

    Welcome to Breastcancer.org! We're so sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see, our Community is chock-full of amazing members always willing to answer questions, offer encouragement, and support you all the way!

    Please come back often, ask lots of questions, and get the support you need. We're all here for you!

    --The Mods

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    Oh, sorry to post again, but did want to say what has your team mentioned about MX vs Lump?

    My team informed of the following....

    image

    I found it helpful in deciding. On their website there's a chart that can be informative of identifying pros and cons of either surergy.

    https://ww5.komen.org/BreastCancer/DecidingBetweenMastectomyandLumpectomy.html


    That, plus Genetic Testing/Counseling (came back negative for Genetic predisposition for Breast Cancer) gave me peace of mind choosing Lump instead of MX.

    No matter what you choose, it's your choice, your body, and you need to say "I'm comfortable and at peace with this decision.". Keep asking questions and don't be afraid to seek out a second opinion either. Most drs are open to that because, hey this is life and death type decisions, that have long-ranging impacts on our lives.


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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    I'm another left lumper, and I'm about 2/3 through with radiation. I'm not having to do the special breathing; the radiologist explained that the beams actually go AROUND the heart and lungs. Have you ever seen string or wire art, where straight lines are used to make a curve? That's how the beams are done, to arc around the outside of the inner organs. I asked because I was concerned about the one zap from the back (under the table), and besides explaining the curved ray, he also explained why it takes about a week or so between setup and start of radiation - it's all factored to the individual, considering size, weight, tissue density, location of tumor bed, nodes, and who knows what else. Everything is finely calibrated in their computer system, and rechecked and aligned at each session. Hope this adds to your information for making a decision!

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  • SavingGrace
    SavingGrace Member Posts: 30
    edited November 2018

    Thank you all for your quick responses. I am so touched by your support. Your insights are helpful, too.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    I second the advice that, given the concern, it makes sense for you to meet and consult the radiation oncologist *before* you make this decision.

    From what mine told me, they have come a long way in terms of the technology, and results from older cohorts are not going to be very relevant for predicting outcomes going forward. He actually used the word 'zero' for how much radiation would be going to my lungs and thyroid (and heart, but for me less of a concern because of the side of the lump). He was very confident that the right positioning and aiming would have no side effects.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2018

    My RO looked me in the eye and said, “I will not irradiate your heart.” I did do the breath hold when it was on the left side but that was not difficult at all. I think it’s not an issue these days.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited November 2018

    My tumor was left side at 2:00. I did the gated breathing and have had no problems for 9 years. Good luck.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    You may want to look into Proton beam radiation as well - depending on where you live and what your insurance is like.

    Part of why I chose MX was to avoid radiation. I knew going into surgery that I still might need it. Thankfully, I did not. But - my tumor was much larger and they were planning to take a lot of breast tissue for LX. I also had already done chemo and had some concerns with family history of cancers (although genetic testing was negative).

    Radiation is generally a "one time only" treatment as well. I didn't want to use it up, so to speak. They are SO much better these days at limiting exposure, however.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited November 2018

    Another left lumper here.  I was also worried about my heart.  My RO explained the breath holding method which I agreed to- however my simulation plan failed.  I had radiation treatment in the prone position.  I was face down on the table with my left one hanging down and my heart/lungs well out of the way laying on metal part of the table.  I felt safe either way.  Just wanted to mention you could ask to do another position.  Good luck!

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    I asked my doctors about radiation being a one time only thing, because that was concerning to me. They said that doesn't apply to this. The amount of radiation used does not approach the life time limit for the breast. Although standard of practice has been MX for local recurrence, that's not required because of the radiation thing. In fact, they are now starting to try second LX for certain cases, with success

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited November 2018

    Just to chime in, my MO also stated similar stances as mentioned by Salmandra, regarding RADs being used in recurrences vs opting only for MX. I'm sure it's case by case, no matter what, but it does seem that there are more options now than there were years ago.

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  • PebblesV
    PebblesV Member Posts: 658
    edited December 2018

    SavingGrace - mine is on the right breast but I was worried about impact to my lungs since I have asthma. My radiologist was able to show me very detailed diagrams and X-rays (which I posted here: https://community.breastcancer.org/forum/70/topics...) of the radiation path. I think you can get the same from your radiologist for re-assurance. They have ways of blocking certain rays so they don't hit your organs.

    Also, I'm 26 out of 30 radiation sessions in and faring really well, skin is still good, just tanned!

    On the lumpectomy vs. masectomy decision, you have to consider the following too and decide what's right for you:

    - With a masectomy, there's usually a second surgery with breast reconstruction.

    - With a masectomy, you might lose your nipple. They have options nowadays like getting it tattoo'd on in reconstruction so it looks the same.

    - Recovery from surgery after a masectomy is longer (4-6 weeks vs. 1-2 weeks for a lumpectomy).

    It's all a personal decision, with your tumor size so small, you are fortunate in that you have the option to preserve your natural breast. Not everyone has that option.

    I found this article which asked some useful questions to help with that decision:

    https://www.verywellhealth.com/mastectomy-or-lumpe...

    And this one which is really details and pros and cons of both, with pics! https://imtakingcharge.com/lumpectomy-or-mastectomy-how-to-decide/

    This article is also interesting as it talks about 'quality of life' perceptions after lumpectomy and masectomy: https://www.researchgate.net/publication/14886626_...

    For me, it mattered to preserve my natural self as much as possible so I chose the lumpectomy followed by the radiation treatment. Others who choose the masectomy may feel more at peace for having "gotten it all" so it works out well for them. At the end of the day, it's just about making the decision that's right for YOU. I'm really happy with that decision and my only advice is to make a decision that you will feel at peace with, and forge ahead with it!

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