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How much did your breast change/shrink after rads?

mouthymodel
mouthymodel Member Posts: 3

It's been recommended to me to have a lumpectomy with rads however through research I've discovered that obviously the lumpectomy removes volume, but that radiation can significantly shrink or damage the breast. I'm already a B cup and asymmetrical and the mass is in my smaller breast. I'm VERY concerned that the outcome will leave me with a quite small/hard and uncomfortably different breast compared to my healthy one. As well as hearing that if I have a recurrence in the future the breast that had rad treatment could not be reconstructed or an implant placed due to the previous tissue damage. Some of the possible nerve side effects of rads are also concerning because I'm a professional photographer, so having nerve damage or weakness develop on the same side I use to hold my camera in the air would destroy my career.

And since I just turned 43, recurrence in the next 10 to 20 years is a strong possibility. For these reasons I'm leaning towards a double mastectomy and reconstruction now even though I'm only stage 1 and it's not technically medically necessary.

Could you please tell me what your experience with rads was and how it effected you, and how you feel about it? Thanks so much.

Comments

  • salamandra
    salamandra Member Posts: 727

    I was 38 when I was diagnosed and my doctor gave me the option of mastectomy but recommended lumpectomy plus radiation.

    Since breast cancer runs in my family, I had been anticipating having to do a mastectomy and my relief at lumpectomy being recommended was immediate and clear. But everybody has a different relationship with their breasts.

    Cosmetically and physically, I can't hardly tell a difference between my radiated and nonradiated breast. My breasts weren't perfectly symmetric to begin with and probably it helps that it was the naturally larger breast that was operated on, but I really can't see or feel a difference. I don't think other people can tell looking at them either.

    Most of the short and long term physical impact came from the sentinel node biopsy, which you would have to have regardless, and it just wasn't that bad.

    You should also know that it is still possible to need radiation after a mastectomy - it depends on your final pathology. It's not frequent but it's not exactly rare either.

    But radiation wasn't bad at all for me. Kind of a pain logistically is all. For me, finding a hormone blocker that didn't give me terrible side effects was a much more difficult ordeal.

    Given my family history and young age, I also have a real possibility of the cancer recurring. If I need to have a mastectomy, at this point I don't think I am likely to opt for reconstruction anyway. To me, the technology for reconstruction still leaves a lot of room for complications and a lot of need for follow-up (in addition to a much longer recovery time). Finally, if my breasts make cancer twice, I think I wouldn't want anything that could make it more complicated to detect the cancer coming back a third time. Of course, that's all theoretical, and in the moment, I might change my mind.

    But if your reasoning for opting for mastectomy - which has a longer recovery time, higher rate of complications, and equal or worse long term outcomes compared to lumpectomy plus radiation - is primarily around the cosmetic and physical outcomes, I think it is definitely worth doing a lot more research into reconstruction before making your decision.

    Not every reconstruction technique is an option for every woman. Not all women have access to good surgeons for different techniques (and the surgeon's expertise can make a huge difference). Many techniques have tradeoffs in terms of total number of surgeries needed, total down/recovery time, and long term maintenance.

    There are some great surgeons doing great reconstruction work, but I think it makes sense to clearly identify your options first.

    The good news is: in terms of cancer, both mastectomy and lumpectomy+radiation have good long term outcomes, so even though it can seem like a tricky choice, you really can follow your gut and feel good about your decision whichever way you go.

  • serendipity09
    serendipity09 Member Posts: 769

    Salamander gave you some really sound advice.

    I chose a double mastectomy with immediate reconstruction for various reasons, but my biggest reason was to avoid radiation. I had my exchange to implants (9 months later) and was dx'd with a recurrence a few days later. Had to do 5 weeks of radiation, which damaged the implant and just recently had a DIEP.

    There are a lot of SE's from having a MX too. I've been struggling with torn rotator cuffs that occurred during surgery along with muscle atrophy and tendonitis amongst other things that were not told to me. So please, please research.

    There are many many others on here that have had radiation and deal with nerve issues, but have been able to continue working. I honestly don't think that that radiation will keep you from continuing your profession.

    None of this is easy, but it is all doable.

    I really hope that everything goes well for you.


  • ruthbru
    ruthbru Member Posts: 46,727

    My breast actually got (and stayed) more plump after radiation. I had chemo first, so for me, radiation was the easiest part of the whole experience. I had no bad side effects from it then or later. I would not get a mastectomy just to avoid radiation. Depending what they find while doing surgery, you may end up with radiation even with a mastectomy.

  • ruthbru
    ruthbru Member Posts: 46,727

    Here is a wonderful, helpful, and impartial post on the topic of having a lumpectomy vs a mastectomy written several years ago by Beesie, who was one of our resident experts.

    Years ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. Over time I continued to refine the list and add to it, thanks to great input from many others. Over the years I have posted this many times, and although I don't spend much time on this board anymore, a number of the long-time members here have continued to re-post it when the question comes up. In reviewing the post, I have updated a few of the considerations based on new research, what is now available with reconstruction, and new issues I've seen raised on this board. I have also rewritten and added to the research section at the beginning, to incorporate the latest research findings.

    Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term. Please note that this list is specifically written for those who have invasive breast cancer; some of the considerations are different for DCIS.

    Before getting to the list of considerations, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX or BMX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale, it's important to look at the research to see if that's really true. What the research has shown is that in most circumstances, long-term survival is the same regardless of whether one chooses a LX with radiation, a Unilateral Mastectomy, or a Bilateral Mastectomy. This is largely because it's not the breast cancer in the breast that affects survival, but it's breast cancer that has moved beyond the breast that could lead to the development of a metastatic recurrence. The risk that everyone with invasive breast cancer has is that some breast cancer cells might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy with rads or a MX or a BMX, as a rule doesn't affect survival rates. It is important to note however that with a lumpectomy, it is assumed that the patient will also have radiation therapy. In fact, a number of recent studies suggest that there may be a small survival advantage in having a Lumpectomy with rads (vs. having a UMX or BMX) possibly due to the benefits of having radiation.

    ***UPDATED*** Here are a few studies that compare the different surgical approaches:

    Survival Comparisons for Breast Conserving Surgery and Mastectomy Revisited: Community Experience and the Role of Radiation Therapy

    Overall survival according to type of surgery in young (≤40 years) early breast cancer patients: A systematic meta-analysis comparing breast-conserving surgery versus mastectomy

    Breast-conserving surgery followed by whole-breast irradiation offers survival benefits over mastectomy without irradiation.

    Survival after lumpectomy and mastectomy for early stage invasive breast cancer: the effect of age and hormone receptor status

    Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

    Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

    Lastly, the following is not a research study, but is an excellent write-up summarizing the implications of the most recent research:

    Decision Making in the Surgical Management of Invasive Breast Cancer—Part 1: Lumpectomy, Mastectomy, and Contralateral Prophylactic Mastectomy


    ***UPDATED*** Now, on to the list of considerations:

    • Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
    • Do you want to avoid endocrine (hormone) therapy (Tamoxifen or an aromatase inhibitor) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or endocrine therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen/an AI by having a mastectomy or a BMX.)
    • Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
    • How will you deal with the side effects from Radiation? (Note again that some women who have a MX may still require Rads.) For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
    • Do you plan to have reconstruction if you have a Mastectomy (MX) or Bilateral Mastectomy (BMX)? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
    • If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you have significant problems with your surgery or reconstruction, or if you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
    • How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, options that will help you get a more natural appearance including having a nipple sparing mastectomy (NSM), having pre-pectoral implant reconstruction, or having autologous reconstruction (such as DIEP or GAP surgery). Not all plastic surgeons are trained to do these procedures so your surgeon might not present these options to you. Do your research and ask your surgeon about the type of procedures you are interested in. If he/she doesn't do that type of reconstruction, it may be worth the effort to find a plastic surgeon who does, in order to see if the option you prefer is available for you, depending on where your cancer is located in your breast and your body type.
    • If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases, the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
    • If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
    • If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time, but it can take a few years. For this reason, some women choose to have a BMX in order to avoid the anxiety of these checks.
    • If you have a MX or BMX, how will you feel about the minimal screening you will have in the future? For most women, a MX/BMX significantly reduces the risk of a localized (in the breast area) recurrence or a new primary breast cancer. However because it's impossible for even the best surgeon to remove every cell of breast tissue, there always remains a small risk (1% - 2%) that cancer could recur or develop in the area of the removed breast. But with no breast(s), most women no longer receive imaging tests - no more mammograms, ultrasounds or MRIs (although some with implants may get MRIs on occasion to check the integrity of the implant). Women who have a MX or BMX should be aware of this and need to consider how they will deal with this and what they will do to monitor their breasts.
    • Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
    • Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. Keep in mind however that over time the fear will lessen, and having a MX or BMX does not mean that you have completely eliminated your breast cancer/recurrence risk; although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
    • Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Breast cancer rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis). This second breast cancer diagnosis could happen in just a few years or not for decades. As compared to the average woman who has not had breast cancer, several studies estimate that breast cancer patients have about double the risk to be diagnosed again over their lifetimes. This risk level may be compounded by the type of breast cancer you had (lobular breast cancer may be higher risk to occur contralaterally; the research goes both ways on this) or if you have other risk factors. Find out your risk level from your oncologist and determine if genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk to carry a BRCA mutation). Those who have a genetic mutation may be significantly higher risk to get BC again (depending on the specific genetic mutation) and for many women, a positive genetic test result is a compelling reason to have a bilateral mastectomy. On the other hand, for some women a negative genetic test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your doctor. Because we've all had breast cancer one time, we are all higher risk than the average woman to be diagnosed again but the risk level is different for each of us so find out your risk, based on everything that is unique to you.
    • How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
    • How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

    I hope that this helps.

    And remember.... this is your decision and yours alone. Don't make the decision based on what someone else (partner, parent, child, friend) wants you to do or based on what another breast cancer patient did. How someone else feels about each of these considerations, and the experience that someone else had with their surgery and recovery might be very different than how you will feel and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!