So Confused and Need to Make a Decision :-(

stef324 · May 2014

I have been diagnosed with grade 2 DCIS with necrosis in my left breast on 4/15/14. I now need to make the big decision of what to do, lumpectomy/radiation or mastectomy/reconstruction. I have read and met with everyone I can to have every bit of info going into this decision process, yet I feel just as confused as when I was given my diagnosis. I am a thin woman with very small breasts, I am a AA !!! Radiation itself scares me because my BC is on the left side and next to my heart. I also have asthma. I am a very sensitive person and pick up on the slightest things that my body is going through, usually before a doctor can tell. My fear is that I will start to again feel something with my lungs and heart that a doc won't pick up on and be told I'm imagining it. Also, what will be left of my already tiny AA breast once its been through lumpectomy and radiation. If I have nothing left, why did I save it? My other option of mastectomy and reconstruction scares be death that I will make an extreme choice and have not needed to. I have no family history. Although my doc has told me that half the women dx with DCIS do have mastectomies. I feel like I will have another problem arise down the road if I have radiation, is that just being ignorant on my part? What should a small breasted girl do? I am so grateful that I have a choice and lesser diagnosis, yet so stuck on what to do.

SpecialK · May 2014

Just so there is no confusion, if you have pure DCIS your stage is 0, not 2. I am thinking that you have confused stage and grade, and that what you meant to say was that you have grade 2 DCIS. There is always concern about whocomes along later and reads these threads and might panic at seeing stage 2 DCIS, and think this is possible. On the question of what type of surgery to have, to offer a suggestion it would be important to have an idea of what size your mass is. You are correct that lumpectomy and radiation could impact your already smaller breast (I had the same concern, although my cancer was on the right), but also correct that mastectomy is a bigger surgery, and should be carefully considered. If you had double mastectomy do you wish to remain the same breast size? If so, you might be a candidate for a one-step procedure, where a smaller implant is placed at the time of surgery which can eliminate the need for more than one surgery. Depending on the location of your mass, a nipple sparing procedure may also be an option for you. Have you spoken with a plastic surgeon yet?

stef324 · May 2014

Yes! Thanks so much for the correction, I have gone back and edited that so there is no confusion, the last thing I want to do is scare someone into thinking there is anything but stage 0 for DCIS. It is grade 2 DCIS. I have spoke to a reconstructive surgeon, who specializes in dealing with only women with BC. My BC is near my nipple and I am very small, so they cannot have nipple sparing surgery. And since my right breast is a bit smaller than my left, I would opt for increasing my size to a large A or small B. That would entail having mastectomy and reconstructive surgery together for my left breast, followed my nipple reconstruction and implant for my right breast 3 months later. That's big time surgery. But the thought of radiation causing a physical problem down the line, or leaving me with nothing of a breast since I'm so small, or long term side effects, seems just as scary. Does that make sense...or am I just overthinking this?

SpecialK · May 2014

No, you are not overthinking things, you are making a carefully considered decision, which is the prudent thing to do. I feel that is a better alternative to immediately having a double mastectomy based on fear. I was originally a lumpectomy candidate but ultimately self-elected a BMX due to ongoing issues in both breasts. Even though you can see by my signature line that I have had some complications with reconstruction, I have no regrets about that decision, but that was my individual choice based on my pathology and history. The good news with DCIS is that you do have a bit of time to sort out your decision. Have you looked at any photographs of reconstruction results with your plastic surgeon? This might help you decide how you feel. Also, I don't know if you have looked at Beesie's excellent lumpectomy versus mastectomy thread but I will include it here in case you have not. Also linked is the decision making matrix from this site:

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 hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone 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 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 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 MX or 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 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, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).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 (and except with a new untested reconstruction procedure) 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. However some women choose to have a BMX in order to avoid the anxiety of these checks. 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. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - 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? Keep in mind that breast cancer very 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) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA 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). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).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?

http://www.breastcancer.org/treatment/surgery/mast_vs_lump

stef324 · May 2014

I have read both Beesie's thread and the link. They are a great source of information. Thank you for sharing them both. I meet back with my breast surgeon today, but perhaps I still need to wait a few more days before making my final decision.

SpecialK · May 2014

Wishing you the best - none of this is easy. it is difficult when there is no clear cut decision and the final determination rests with the patient.

april485 · May 2014

Just chiming in here because I too have smaller breasts and opted for lumpectomy/radiation and it is my left breast. I had the same fear as you did, not because of asthma, but because I was a (former) smoker and worried about my lungs and my heart. I had partial breast rads (clinical trial) and my trial had CT scans daily to make sure they pinpointed the rays exactly to my area where the lumpectomy was. I had rads for one week, 2x a day, dose dense but I had to qualify and they were doing the trial at Yale where I was being treated.

As it turns out, she could NOT keep the bottom tiniest corner of my left lung out of the field no matter how she worked with the dosimetrist so I opted for it anyway knowing I had a small risk of an issue. I am a year out and feel fine. I am happy with my decision.

Hoping you can come to the right one for you. Once you make up your mind, don't look back! It will make you nuts. Just know that at the time, you made the best decision you could. I believe with my heart that either one will be fine. Hugs!

stef324 · May 2014

April, thank you for sharing your experience and insight, I greatly appreciate it. I am happy to hear that you are doing well. I think today has been a bit of an overwhelming day for me leading up to my appointment. I was hoping that 3 weeks out from dx I would have a better understanding of what I'd like to do, but it looks like I need to give myself a bit more time to digest and decide. Reading and hearing from women who are in the same boat as I am is helping tremendously

Moonflwr912 · May 2014

Hi. Thought I'd chime in here with just a bit more information to consider. If you do chose mastectomy either uni or bilateral, you may or may not need chemo. If you don't good. BUT if you do, there is a chance depending on the chemo used, of injury to your heart as well. It is a small chance. I just wanted to point that out as I didn't see it mentioned. So if you were leaning to BMX or uni, and needed chemo, you'd be seeing some risk as well. Now that's not to say that you WOULD have chemo OR problems but something to ask your MO about. Because you do have time to think about all the ramifications of treatments, just another piece of advice, do not drive yourself crazy! Make the best decision you can AT THIS TIME WITH ALL THE INFORMATION YOU HAVE NOW, and go with that. Don't look back or worry. Know you made the decision right for you. Much love.

lovestorun · May 2014

stef -

I'm sorry that you have to go through this. The good news about DCIS is that you have choices, but that can make things very hard and very confusing. As for me, I found it very hard to process percentages and risk since I had been on the "bad" end of statistics with my initial biopsy.

FWIW, I chose lumpectomy + radiation + tamoxifen (grade 2, comedonecrosis, ER+/PR+) over mastectomy. I am one year out of radiation this week. I was 45 at diagnosis. So far I don't regret my choice. I was apprehensive about having radiation on my left side so close to my heart, and I was concerned about my lungs. Had a great radiation onc and team - we did a gaited breathing technique to get my heart out of the way. Since last May I've run 3 half marathons and one ten miler. My ticker and lungs seem to be doing just fine!

One cautionary note about lumpectomy which I don't know if you and your surgeon have discussed - it's not uncommon to have a re-excision to get clear margins. If you are concerned about how you will look post-lumpectomy, I'd recommend discussing the possibility of re-excision and potential effects with your team. In my case, it meant some (more) sleepless nights and a few more weeks in overall treatment time, but that's it. Size-wise, I'm about the same as I was, and my scar has healed really well.

One thing I hope you are picking up on all of these responses is that you want to feel good about the choices that you are making. It's a whirlwind. These boards are great resources. Hugs to you.

(ps you mentioned today being an overwhelming day leading up to your appt.; you are not alone. I never slept well the night before an appointment and was always a little on edge the day of. Even now, at follow-up appts I feel a little bit the way I think my dog does when we go to the vet, even though my health is great and I like, and more importantly respect, all of my docs and providers.)

snowflower · May 2014

Stef324, I'm a AA too and had a mastectomy and diep flap on the one side where DCIS was found 12/15/10. I did not need radiation or tamoxifen afterwards and the PS did a good job matching up the right with the other side. The PS told me to "go with my gut" about if I wanted a UNI or double mastectomy. I wanted to keep the breast that had no cancer and I'd also never had any problems in the left. Over the years I'd had 3 biopsies on my right breast plus a fibroadnoma that had been there for 30 years, so my breast was going to be looking a lot different from the other if I had a lumpectomy and radiation. I wanted to look and feel as close to my normal self as possible and I kept as much of myself as I could. I would just advise you to try and go with your "gut feeling" about it.

stef324 · May 2014

Thank you Snowflower, Lovestorun and Moonflwr912 for sharing your experiences and advise, it means so much. I visited with my BS last evening and have decided to take step 1....lumpectomy. I will have a date by the end of the week and it may be as soon as next week. I have opted out of having the SNB until I receive my final pathology (will have it done if results don't look good). My BS and I agreed that if she was not able to receive clear margins that it would be best to then go for skin sparing mastectomy and reconstruction. As it is, my PS will be there for my lumpectomy to make sure I look pretty after my procedure. If they were able to obtain clear margins, I can then go on to have radiation, if I choose. If I decide that I want the mastectomy anyway after obtaining clear margins, they can do that as well. I feel this is the best first step for me at this time.

ej01 · May 2014

Stef, I was also concerned about radiation. I went with a lumpectomy and partial breast radiation to limit my radiation exposure.. There are a few different partial breast radiation techniques, including one that provides radiation during the surgery (IORT), and techniques where a radiation device can be positioned during surgery for later radiation treatments and external radiation. I did not read all of the comments, but you might want to see if your situation would make any of these techniques an option for you. You can meet with the radiation oncologist ahead of time to help make the decision. Good luck with your decision.

lovestorun · May 2014

Stef - I hope you are feeling good about your decision and that you find out your surgery date soon. Will be sending good 'clear margin' thoughts your way.

lettie17 · May 2014

Hello! Just chiming in here as well... I was diagnosed with Stage 0 DCIS November of last year, and the waiting and thinking also made me crazy. At the onset, I was assigned a team of breast surgeon, reconstructive surgeon, and oncologist, who discussed my options.

Stef, I'm sure they already explained to you all your options at this point; if not, you have to ask your breast surgeon. As SpecialK mentioned, most depends on where your mass is.

But, apart from this, I'd like to share my own experience, esp. since I think DCIS can really be trickier than we think. First of all, we should remember that medicine is a science that is still not perfected. What is perfect anyway after all? Second, our diagnoses depend largely on technology that is also not perfected. Again, what is perfect anyway after all?

My DCIS is on my left breast with initial dx as 2 cms, 9 o'clock position. Although high-grade, it was very tiny and appeared to be contained; hence non-invasive. Since I was concerned about possible side effects of radiation and chemo, including oral medication that I might have to take; I chose the most aggressive treatment for my case.

I had simple double mastectomy, with skin/nipple sparing, late Feb this year with first stage of reconstruction (tissue expanders). And the plan was, after 3-4 months, the tissue expanders will be replaced with implants. And that's it!

Unfortunately, the tissues taken out from my breast tested for positive margins. It turned out that my cancer size was actually 4 cms, hence the mass went all the way behind to the edge of the tissue. Also, they found a mass on my right breast, which although benign at that point, could possibly develop into something of concern later. It turned out that these did not show in the mammograms done to me before they biopsied me and marked the calcifications that showed. They said these new findings were not calcified, hence was not captured by the mammogram.

Although these "after-the-fact" findings very well confirmed that my decision to do double mastectomy was right, I am still left distraught. What's next? Though looking at it the positive way-- I know I should still be thankful that: (1) the mass extended to the back and not towards my nipple, otherwise, they wouldn't have spared my nipple; and (2) the mass, although larger in size, remained contained, and therefore I still didn't need to have other treatments.

But there are changes in the plan--- When I go back for the supposed second stage of my construction sometime July-Aug, my breast surgeon would have to go back in and scrape more skin from me to ensure clear margins. And, according to my reconstructive surgeon, if it turns out that a lot of skin would have to be scraped off and therefore may result to "oddity" in the reconstructed breast, he will not proceed with the reconstruction.

And so I asked-- is there a way to know beforehand what can exactly happen? The answer I got--- NO!

I did worry a lot for a time... but it didn't do me any good. Life is too short to spend it all in worry. I went back to work after 6 weeks of leave... laughed more in-between chores at home and doing stuff again for my husband and kids... I tried (and actually still am trying) to go back to my normal pace of zumba... socialized more... reconnected with old friends, esp. those who have been thoughtful and mindful of me with my condition now...

I actually fear my next surgery more, but what can I do?

I remember other BC (DCIS-dxd) survivors who I have met in this journey-- one was regretting that she did not do reconstruction. Dxd with DCIS on her R breast, she did single mastectomy, without reconstruction. She did radiation and handled it well. She is now clear. Except that she regrets that she did not do double mastectomy. Overall, she does not feel good about herself. She said she feels her confidence has gone down. The other person I know had lumpectomy first, and then another one on the other side because something was found months later. After a few more months, another mass formed in the originally-diagnosed breast and she had to go through another lumpectomy. Then, another... On the third time, she finally did double mastectomy, however no reconstruction due to rads and chemo she had to undergo. It's been 2 years now, and she thinks of doing reconstruction. She said she feels that something was taken out of her, and she does not feel good about it.

Stef, I wish you the best in your decision. I know it can be overwhelming, but I do hope that this BC board is helping you. Keep tab of your questions and ask your doctors; do not hesitate. And whatever you decide, don't regret it... don't even look back. Just move forward. There will always be something good in anything.--:)

stef324 · May 2014

Ladies, thanks again for sharing your personal journeys with me. The information I have received is something I could never get reading a generic article on what to expect with each procedure. I had my lumpectomy yesterday and will have my final pathology next week. I cannot say that I am any closer to a final decision, but I am taking it moment by moment at this point. I wish all of you good health, healing and happiness with each new day

Moderators · May 2014

Stef, thanks for checking in after your lumpectomy. We'll be waiting right along with you for your pathology report.

• The Mods

Jill_MN · May 2014

Stef, I hope you're recovering quickly from the lumpectomy. Please know there are many others who share your anxiety about the "right" choice of treatment. In 2012, I was Dxd w/ DCIS stage 2 in my right breast. Had 2 lumpectomies & radiation. On 5/6/14, I was Dxd with DCIS in the left breast. A bilateral mastectomy has been strongly recommended so I'm scheduled for that on 5/29. Reconstruction choices are difficult due to my irradiated tissue. Fortunately, I had 3 fat graphs to fill in the divet created by the lumpectomy. My PS feels the stem cells helped heal the irradiated skin & muscle so I'm going to have TEs then permanent implants.

Knowing I would develop more cancer, I would never have undergone radiation but who can predict the future? We all just need to keep moving forward. I like the advice of our fellow posters...make a decision and then don't look back. Good luck & God Bless.

lovestorun · May 2014

Stef - thanks for checking in and I hope you are feeling well now that you are a few days out. Hope you get good news on the path report - am sure you are anxious for it to arrive. All best to you!

So Confused and Need to Make a Decision :-(

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