DCIS ! Mastactomy OR Radiation+tamoxifen

Sheidaii
Sheidaii Member Posts: 7

Hi my dear sisters!

I am a new member and am so glad to find this website and see and feel other patients concerns and problems, and share my concerns with them.

I am a 37 years old woman that have recently been diagnosed with DCIS. I had a lumpectomy to remove the cancer on March 16, 2015. My tumor was small (less than 1 Cm), low nuclear, and the amount of cancerouscells was very limited. The number of block examined were 9, and the number of blocks with DCIS was 3. The tumor was 100% estrogen and Progesterone positive (+), and even though I have a strong family history of breast cancer, I was BRACA1, BRACA2 negative.

I am married and have no kids, but was planning to start a family. I am told that I have only a few days to decide if I want to go for Radiation + Tamoxifen OR have a double mastectomy with an immediate reconstruction. I am also told that I can keep my nipples. Now, I am sooooo devastated, because I can't make a decision. I would really appreciate that if any of you could help me with this matter.

Do you think in my situation having a double mastectomy is consider an over treatment?

When it comes to getting pregnant and having children, which one is a better choice (Radiation + Tamoxifen OR double mastectomy)?

Comments

  • Jeeper4
    Jeeper4 Member Posts: 70
    edited April 2015

    I recently saw a thread on here about coming off Tamoxifen to get Pregnant. Tamoxifen is usually given for at least 5 years so that would delay pregnancy. I don't think a double mastectomy is an overtreatment, just a very personal one and reading through some of the threads here, for a variety of reasons. Some women have several small areas of DCIS where a lumpy would be very disfiguring so they do the MX, others may only have one small area but just don't want the rads, meds, and frequent screenings so they choose MX. Have you read Beesie's A Layperson's Guide to DCIS in the DCIS forum? I have heard of some women with very small tumors whre the nuclear grade was low forgo additional treatment after surgery and be vigilant about screening. For me personally, the strong family history would be play a big part in my decision but I don't have the stats for that. No right or wrong to it, just be informed about each option and the risks involved. Usually when the decision is made to have a LX, it is automatic signup for rads and Tamox/AI (if indicated). Did you have an excisional biopsy that removed the DCIS? Was a little confused seeing that you had a lumpectomy and now considering double mastectomy but I haven't been in this BC world very long myself.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    as Jeeper said, it is a very personal decision, one based on a lot of different factors; but if you are planning on trying to get pregnant soon, tamoxifen would not be an option right now. Who is giving you a deadline of a few days to make your decision? (and why?) There is no big rush with DCIS since it is non-invasive, you have time to research your options and make a decision based on knowledge. Don't let them rush you!

    Anne

  • Sheidaii
    Sheidaii Member Posts: 7
    edited April 2015

    Thank you so much dear Jeeper4 for your respond,

    Yes, I had an excisional biopsy that removed the DCIS, with a 2 mm margin. So, I don't need any more surgery if I decide to not to go for a double mastectomy. I just need to go for radiation (33 sessions) and tamoxifen (5 years). My oncologist told me if I really want to get pregnant, I can take tamoxifen for 2-3 years. Then stop it and get pregnant, and again continue tamoxifen after delivery. But I am afraid if tamoxifen somehow would make my pregnancy more complicated, or if it would make me to be menopause soon, and on the other hand it may even can increases the risk of my cancer coming back if I stop taking my tamoxifen.

    Also, radiation can change the skin so, if my cancer come back, it can make my mastectomy and reconstruction more complicated.

    But, on the other hand, doctors say the chance of recurrence for my cancer after Radiation+tamoxifen is less than 9%. So, I don't know if it worth it to go under such a major surgery (double mastectomy) or not.

    Bottom line, what is the standard treatment for DCIS? In my situation, more women go for Radiation+Tamoxifen or go for mastectomy ?

    Again,

    Again I appreciate your consideration dear Jeeper4

  • Jeeper4
    Jeeper4 Member Posts: 70
    edited April 2015

    as awb said, do not let them rush you. These are major decisions and personally ones I could not make in a few days given all that is involved. If you want to get pregnant in the future then a big concern will be what is safe for your baby. You may need to get second or third opinions to be sure and ease your mind. Makes me wonder if there are specialists out there that deal with fertility/pregnancy during/after cancer treatment. I wish I could say what is standard treatment for DCIS. For your situation and other women with similar diagnosis, I would think that many go for rads/tamox unless strong family history, positive for the BRCA tests, or high Oncotype. Did you ask the Oncologist about proceeding with radiation and delaying tamox until after pregnancy/breastfeeding? Maybe that could be another option. Then you could have time to fully research the pros and cons of MX if you decide you would like to do that in the future. Also, do you have a copy of your pathology report? It is pure DCIS right? Nothing invasive?

  • Sheidaii
    Sheidaii Member Posts: 7
    edited April 2015

    Dear friends (awb and Jeeper4)

    I had my ultra sound needle biopsy on Feb.11.2015, and had my excisional biopsy (my lumpectomy) on March.16.2015. My doctor told me I have between 4-6 weeks after my lumpectomy to start either my radiation or have a double mastectomy. Today is April.24 so, according to my surgeon and also my radiation oncologist, I have only 6 days to decide. Don't you guys agree ? How long you think I can wait until collect all the information and make a decision ?

    Unfortunately I did not ask my oncologist about proceeding with radiation and delaying tamox until after pregnancy/breastfeeding. I wish I could some how get an answer for this in a few days. But yes it is pure DCIS, Nothing invasive. Out of 9 blocks examined only 3 were DCIS, and the other 6 were Atypical ductal hyperplasia. The only this is that my sister got breast cancer at the age of 44, and my niece (my brother's daughter) got breast cancer at the age of 30. I am 37, and BRACA1,2 negative.

    Thanks again for all your help,

    Sheida

  • Jeeper4
    Jeeper4 Member Posts: 70
    edited April 2015

    I am copying over a post put together by Beesie, one of the resident experts on the boards. It gives a good, non-partial list of things to consider as you make your decisions:

    "Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. 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.

    Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:

    Lumpectomy May Have Better Survival Than Mastectomy

    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

    Now, on to my list of the 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 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?

    (saw this reposted by ruthbru in another column and thought it might help you)


  • ballet12
    ballet12 Member Posts: 981
    edited April 2015

    Hi Sheidai, the radiation and Tamoxifen decisions can be made separately from each other. And by the way, I didn't start radiation until about 2 1/2 months after completing the third surgery (took three to get clean margins).  Also, being that you are currently 37 years old, it might not be wise to wait three years to try to get pregnant--so, maybe you should consult with a fertility expert who deals with cancer patients. At the same time, you should discuss if there are any risks to getting pregnant so soon after treatment (vis-à-vis pregnancy hormones, etc.) On the other hand, if you wait, and you need some fertility assistance (as in hormonal treatment to get pregnancy) that could be a risk, as well. I completely agree with the others, take your time to make a decision and, if possible, consult with an expert in fertility in cancer patients.  Those specialists (often obstetrician/gynecologists) are often in larger teaching hospitals and also breast cancer treatment centers.

  • GoodConstitution
    GoodConstitution Member Posts: 43
    edited April 2015

    CHECK with your DR. I believe tamoxifen will put you into immediate menopause. You might ask about an aroma taste inhibitor. I wish you the best. I have DCIS with close margins and am debating the same thing. I am 62 however and have my lovely girls and grandchildren. All my best to you.

  • GoodConstitution
    GoodConstitution Member Posts: 43
    edited April 2015

    Thank you! There is so much to learn!

  • april485
    april485 Member Posts: 3,257
    edited April 2015

    Whatever you decide, you do not have to rush into it  and I am unsure why they are tightening the reigns on you so much. Tell them you want to research further as the best option for you is critical since you want to start a family. The usual protocol after having a lumpectomy is to have rads and tamoxifen if ER+, but sometimes one or both can be skipped. It so depends on your personal BC! Do not rush this. It impacts you in a big way in terms of that family you want to start. As posters said above, it is not invasive so you can take your time! HUGS! Best to you whatever you decide to do.

  • have2laugh
    have2laugh Member Posts: 132
    edited April 2015

    Sheidaii- Just wanted to reiterate what ballet12 said-if your decision is highly influenced by what is best for a future pregnancy-I would include a fertility specialist or at the very least your own OB/GYN. Others may say you have plenty of time but my RO and surgeon were clear if I wasn't going back for  bilat mastectomy I would benefit from starting rads quickly-I started within three weeks of last surgery but had very close borders. Perhaps you should ask if there is a reason they would like you to start quickly. If getting back to work is an issue-you may wish to forge ahead.

    Like you I have strong family history and I will caution you, close follow up is a bit exhausting and expensive. I had great surgeon and good results aesthetically but it has not always been easy. I had my second child at 40-diagnosed at 43-I think if I was in a position to consider more children I would have eliminated any risk AND further worry, follow up. It is easy to say mastectomy doesn't necessarily reduce risk but it takes away the worry and financial and emotional stress for some. Neither decision or path is easy-I wish you luck in your decision making. 

  • Sheidaii
    Sheidaii Member Posts: 7
    edited May 2015

    Thank you to all my dear sisters for taking your time to answer my question. I have been super busy since I posted my question, and my computer was broken, so, I couldn't thank you earlier.

    I am going to have to choose between my 2 options before May.4.2015. I know DCIS is not an emergency, but since I had my lumpectomy on March.16.2015, I have to start my radiation therapy as soon as possible (May.4.2015). I cancelled my last appointment for radiation, because I had not made my decision, and pushed it to May,4th. It has been already more than 6 weeks from my surgery (lumpectomy) now, and I guess I should not wait longer. But guess what? I have not make a decision yet !!!

    I am trying to put my thoughts about having children aside :( and just focus on my treatment, this may makes thing less complicated. I have read all your great answers ones, very quick, but I am going to read them one more time very carefully, and make some notes, so, I may can become with a decision. I have only one more day and some hours to decide, so, I may ask you some more questions, if I need. Thanks again to you all my beautiful unseen friends. You are my angles.

  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Hi Sheidali -- I just had to make this decision myself. I had DCIS in September, very small (2 mm) with "clean" margins (although they had ADH in them). I chose to not have radiation -- when it is a small area that is a choice. I too have a strong family history of bc (mother and her sister both died of it), and I have dense breasts that are hard to read on a mammogram (you probably do too, given your age). When I went for my six month follow up mammogram, they found new calcifications. I had two biopsies, and one of them came back as a benign tumor called a papilloma. However, papillomas can hide cancer, so it has to be removed in yet another lumpectomy. Also, it wasn't there six months ago so the speed with which it grew is concerning for hidden cancer. I did not want to take Tamoxifen, just because I don't like taking medication AND it was no guarantee I wouldn't get cancer again, or that we could find an early stage cancer because of my dense breasts.

    This is what I wanted to share: I knew immediately what I should do, but I didn't know why I knew -- if that makes sense? Women's intuition I guess. I then went through and researched for a week. I was so confused and didn't want to make the "wrong" decision. Then I realized: I'm not choosing between Disneyland and Six Flags. There is no "good" decision. Either choice results in concern, fear, anxiety, possible side effects, etc. For me, I do not want to risk that I get breast cancer that spreads before I can catch it. So I have chosen PMBX. That doesn't mean that is the right choice for you -- this isn't my first lumpectomy, I've had six biopsies, and I am 51 and not thinking about children. Hopefully the Disneyland and Six Flags analogy can help you.... Good luck it's a tough one.

  • Sheidaii
    Sheidaii Member Posts: 7
    edited May 2015

    Thanks a lot dear ispy for sharing your experience. Yes, you are right, I do have externally dense breasts. I just don't know what "PMBX" means. Would you tell me what "PMBX" stands for?

  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Prophylactic Mastectomy, Bilateral (both). I might have reversed the letters :)

  • Sheidaii
    Sheidaii Member Posts: 7
    edited May 2015

    Thanks ispy ! Your case is very similar to mine. My understanding is that if it was the first day of your diagnosis, you would directly go for a double mastectomy, right ? So, maybe that can be the best choice for me as well.

  • I_Spy
    I_Spy Member Posts: 507
    edited May 2015

    Actually, no. I would still have gotten the lumpectomy first. Because they didn't know it was cancer until after the lumpectomy. And it seemed like they had gotten it all and I was done. But now with this new issue, I'm like that's it time to bring in the big guns.

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