Calcifications recurring after radiation and while on Tamoxifen

Options
2»

Comments

  • SaraInVA
    SaraInVA Member Posts: 2
    edited December 2013

    Hello all.  I am new to the site, but couldn't have stumbled onto a more appropriate topic.  I was initially diagnosed with DCIS in my right breast in January 2009, had a lumpectomy in February 2009, followed by six weeks of radiation.  I started Tamoxifen in May of that year.  I, too, have both mammograms and either an MRI or BSGI (Breast Specific Gamma Imaging) each year -- the mammograms in December, the other test in June.  Other than a cyst that was discovered a couple of years ago in the left breast in a sonogram (which I don't normally have -- I was part of a clinical trial), my tests have all turned out clean.  Until today.  My yearly diagnostic mammogram is showing a small microcalcification in the surgical bed of my original cancer in my right breast.  One measly little spot and I'm finding myself right back where I was five years ago -- a bit scared and trying to control my emotions.  The radiologist recommended a "wait and see" approach -- they want me to come back in six months and have another mammogram in that breast (in addition to the other imaging I would normally have done at that time).  Much like some of you have indicated, the radiologist said that this could be the result of the initial surgery/radiation -- she called it a "fat necrosis," and said that it could happen several years after surgery.  They want to take another look in six months to see if the spot changes, if more spots appear in the area, etc. before they would recommend a biopsy. As you can imagine, my emotions are all over the place.  At times I don't know how I'm going to get through the next six months with this hanging over my head -- I want to know NOW.  At other times, I try to see the bigger picture -- they're being cautious, if there IS a problem, they will have caught it early (although the treatment ramifications kind of bother me, given that I've already had radiation in that breast), and there's always the possibility that it's nothing at all.  I'm trying to learn to live with the uncertainty that comes with being a cancer survivor -- knowing that even if this turns out to be nothing this time, it's likely that these kinds of things will happen again. (I'm 51 -- I was 46 when I was originally diagnosed)  Reading through the posts on this site has been very comforting.  Not only has it given me a better perspective on all this, but it's always good to hear from people who've been through it and come out the other side.  So I immediately signed up for an account, and will be checking back regularly.  Thank you all for sharing.

  • lane4
    lane4 Member Posts: 175
    edited December 2013

    Hi, SaraInVA - I am currently in the same position. My October mammo showed new calcifications in the surgery area and I will have another mammo in April to see if there are any changes. I could have had a biopsy done if I had insisted, but I am comfortable waiting for now. At times, my mind does go into "what if" territory, but I try not to dwell on it. In 2011 when I was two years post treatment, my MRI showed a suspicious rapid enhancement in the same area. My surgeon told me then that I would have to have a mastectomy if the biopsy was positive (I knew that already), so I think he was trying to prepare me for the possibility. But the biopsy showed fat necrosis. So I'm mostly convinced that this is just more fat necrosis, and at the same time wondering if this kind of scare will happen every couple of years. (By the way, I am 53, diagnosed at 48.) Hopefully, yours will prove to be nothing more than fat necrosis. I think it's pretty common a few years out.

  • coffeelatte
    coffeelatte Member Posts: 209
    edited December 2013

    Very interesting thread.  Lane 4, I am so glad you had no further problems in 2011 with that scare. And SaraInVA you have nerves of steel to be able to wait six months.  I am not able to do that.  I had a biopsy for calcifications in the left breast in 2005 that turned out to be benign.  Then a substantial lumpectomy in the right breast in 2010 for a growth that looked like an almond on the chest wall; again benign. Then more calcifications found in the left breast in June of this year. So after being called back for more mammogram pictures; the radiologist sat me down and said to wait six months because she did not think it looked suspicious. She said if it were her she would wait. Well, I could not wait six months so I asked if I could please have a biopsy for peace of mind.  They agreed and sent me to a radiologist who does them and sure enough they found grade 3 DCIS that was both estrogen and progesterone negative.  I was sent to a BS immediately and had a double mastectomy four months ago.  I do not know if the outcome would have been any different if I had waited six months; maybe not. I wrote this only to share with you what my experience was after being told to wait.  Lane4 had a totally different experience.  It is so hard to wait when it comes to rolling the dice with cancer.  I wonder if a consult with a breast surgeon, your PCP or some other means of a second opinion might be a good thing?  I know this is not easy.

  • SaraInVA
    SaraInVA Member Posts: 2
    edited December 2013

    To lane4 and coffeelatte -- thanks for sharing your experiences.  Interesting how things can turn out so differently for people in similar situations.  As for your suggestion, coffeelatte, about talking to a breast surgeon, it's actually my breast surgeon who orders all of my mammograms and other imaging ever since my initial surgery, so she will be getting the report of the recent findings.  I was actually thinking about contacting her after the holidays to see what she thinks.  I'll keep you all posted.  Thanks again.

  • jmb5
    jmb5 Member Posts: 532
    edited December 2013

    I had DCIS 4 years ago, and was just recently diagnosed with a recurrence. I am waiting to find out my surgery date for a BMX and DIEP flap reconstruction. This conversation about calcs on a mammogram is interesting. My routine mammogram in October found a cluster of pleomorphic calcs, and the biopsy showed ADH. My surgeon (just a general surgeon who did my lumpectomy 4 years ago), sent me to a breast surgeon at the Cleveland Clinic. When I met her, the radiologist in Cleveland took a look at my mammogram and found not one, but 3 different clusters of calcs. The previous radiologist saw 2 spots, and said one that was linear was vascular calcs caused by the rads 4 years ago. The new radiologist said it definitely wasn't vascular, and thought it was DCIS. They did a second biopsy on the larger calcs and found the DCIS recurrence, grade 2. Maybe the technology is better in Cleveland. I don't know, but they sure seemed more on the ball then the first radiologist/surgeon. An interesting thing to note... when I asked the general surgeon if we could wait 6 months and see if there was any change, he said if it is DCIS, it could sit there and not change anyway. There is no way to tell when or if it would change and possibly become invasive. Because of my history and the fact that the calcs were pleomorphic, clustered and linear, they thought a biopsy was in order.

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi JMB, you are fortunate that the Cleveland Clinic was on the ball.  My surgeon, who is a DCIS specialist at Memorial Sloan-Kettering, would have concurred with yours.  She doesn't like to wait, in the event that it might be DCIS.  At the same time, it does sometimes mean getting a false positive (which I did recently).  Best of luck with your BMX and DIEP. 

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    Hi ballet - Interested in your post just now.  How did they uncover the fact that your recent biopsy WAS a false positive (am looking at those future possibilities)?  Thanks - P.

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi Percy, what I meant by false positive was that there were the suspicious calcs and then the biopsy was negative.  The false positive was the fact that the calcs looked suspicious for cancer.  The actual pathology report was clearly negative.  My point was that my surgeon doesn't want to "watch and wait" when they see suspicious calcs.  By the way, I would have waited this time.  The radiologist was on the fence, but since the surgeon wanted to move on it, we did it.  This was in the other breast, actually the first time in that breast (after five in the other breast over the years.)

  • percy4
    percy4 Member Posts: 477
    edited December 2013

    So glad it turned out well. xx

  • jmb5
    jmb5 Member Posts: 532
    edited December 2013

    ballet, that's part of why I am choosing the BMX this time. I had the DCIS diagnosis in the left breast 4 years ago. Then 2 years ago, I had some calcs on a mammogram in the right breast. (They were scattered, not clustered like the first time.) The radiologist and my oncologist said I could wait 6 months for a follow-up mammogram, but my surgeon (not a BS, just a general surgeon) said because of my history that I shouldn't wait. It scared me, so I went ahead with the biopsy. Found out there was no cancer and went into debt with a $3000 deductible. Now 2 years later they find the calcs in the left breast again, which turned out to be a DCIS recurrence. These calcs were clustered and pleomorphic and no one gave me the option to wait 6 months because of their appearance. One of the things about DCIS is they don't know when/if the cells will change and become invasive. You could wait 6 months or 6 years and they might look the same on a mammogram. It really is better to biopsy them when they look suspicious.  

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    jmb, I agree, and I'm sorry that it has turned out this way for you, but also so glad that it was, hopefully, all caught in this pre-invasive state.  For most of us, the DCIS is, likely, a one time event.  It sounds like you are prone to develop the abnormal tissue, and taking care of it as both treatment and prevention sounds like the way to go.  Let us know how you do.

    By the way, like Percy, who just posted her picture, yours is so beautiful as well.

    I hope both of you can still have somewhat decent holiday weeks.  Happy New Year.

  • jmb5
    jmb5 Member Posts: 532
    edited December 2013

    Thanks, Ballet. I figured I might as well let you all know what I look like since I'm going to be hanging around for awhile. SmileAnd you're right, DCIS is usually a one-time event. I saw my oncologist 2 days ago, and I asked him about that very thing. He said he would have some notoriety in the profession if he could answer the "why" question. I have no family history, was negative when I did the genetic testing, don't smoke or drink, am a healthy weight, etc. I have 2 older sister, both who have never had any issues. And here I am going through round 2. I have a strong faith, and believe that God will use this for good. I know I will have the opportunity to encourage others when they go through this, or other difficult times. It sucks when we go through it, but it's a good feeling to come out stronger in the end.

  • april485
    april485 Member Posts: 3,257
    edited December 2013

    jmb5, my thoughts will be with you for your surgery. Your story scares me a bit, I won't lie as does this thread, but I guess it is the life of having had BC. We all try to put it in the past but most of the time, we are waiting for results on tests. My first mammo at the 6 month mark was clear. Hoping that my one year one will be as well as that is coming up next month. Hugs and best to you and all of us.

  • ballet12
    ballet12 Member Posts: 981
    edited December 2013

    Hi April,  when I stated that most don't go on to a second event (DCIS or otherwise), this is statistically true, but certainly that still leaves many women like jmb, who do.  We are certainly under surveillance, which makes it feel like the second event is around the corner.  I am more fortunate than you, in that I will be on a 12 month monitoring schedule, rather than 6 months (although I did have a 6 month check of the other breast due to calcs and a subsequent negative biopsy).  So, while I can't forget it all, I won't have that acute worry that comes with constant upcoming mammos and MRI's (which I won't be getting unless I develop a problem).  Then you just hope for the best.

    Good luck with your upcoming mammo.


  • ginadmc
    ginadmc Member Posts: 263
    edited December 2013

    jmb - I'm having a similar experience. I had IDC (left) 12/8/09 and this year at my annual mammo, the diagnostic mammo and the radiologist said the calcs in my other breast (right) had increased in size and area and recommended biopsy. The results (12/10/13) were DCIS with microinvasion. I've been on Tamoxifen since 9/2009. My onc said he's a little miffed that the Tamox didn't prevent this. I'm scheduled for lumpectomy 1/16/14 and then on to rads. We may change from Tamox to an AI after rads. I don't drink or smoke, I exercise, eat healthy and keep my weight in check. No family history either. I'm scheduled for genetics counseling 1/2/14 but my surgeon and onc think the results will be negative. I'm not happy about dealing with this again. 

    PS - I'll be changing my annual mammo to a different month. I can't take any more bad news in December~~~it makes everyone's Christmas a little subdued.

    Gina

  • jmb5
    jmb5 Member Posts: 532
    edited December 2013

    ginadmc, I'm so sorry you're going through this again. And on the other breast! That's a whole new cancer, and if I understand it correctly, more rare than a recurrence. I did the genetic test last month and everything was negative. If insurance will pay for it, you might as well. It's good information to have, for you and any sisters or daughters you have.

    I did not take Tamox. It was recommended, and I just couldn't do it. My oncologist said my chances of getting DCIS again without the tamox (I had lumpectomy and rads) was 13%. With the tamox was about 6%. I thought those were pretty low odds.

  • lesliecusana
    lesliecusana Member Posts: 97
    edited December 2013

    Wow this thread is interesting! As I am about to start radiation for high grade DCIS with microinvasion that was ER-PR-HER2+! So no Tamoxifen for me! I just don't believe it when the Drs say they got it all and there is very low risk of reoccurance! I guess they just don't know! It's so hard to believe its over when you hear of others with reoccurance or new cancers! I hope the screening will catch anything early enough!

  • Maito
    Maito Member Posts: 11
    edited January 2014

    I'm so glad I found this thread.  I was dx with DCIS in October 2013 and had a lumpectomy in mid-Nov. I should have started my rads by now (8 weeks post-op) but am still trying to decide between DMx with DIEP reconstruction vs rad followed followed by Tamoxifen for 5 yrs.  I was hoping to dodge rads. Unfortunately, I  got a 69 score on the Oncotype test which means that rads are a must should I decide not to do a DMx.  My oncologist thinks  a Mx is an overkill for DCIS. I lost a child not so long ago and I don't feel like I can deal with the stress of rads, SE of tamoxifen, close monitoring et al atop my grief - I just want to get this DCIS issue over and done with if at all possible ...  Would appreciate any suggestions and advice.  Many thanks in advance!

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi Maito, wow, so sorry that you have to deal with these incredible burdens simultaneously. I can't speak about the mastectomy side, except to say that mastectomy plus reconstruction with autologous tissue transfer (as in the "DIEP") is major surgery with a relatively long recovery period, even when everything goes smoothly.  So, you would "get this DCIS issue over with", but it's not necessarily an easier road, just a very different road, with reduced long-term risks of recurrence.  You should visit the surgery and reconstruction threads, and post your own there, if you haven't done so already.  Beesie also has a very comprehensive review of the pros and cons of mx vs. lx.

    I chose the lumpectomy route, which involved three lumpectomies and definite cosmetic changes.  I was able to squeak by with the third lumpectomy and not get a mastectomy.  Again, that was my choice.  I did radiation, with no long-term side effects, and very minimal other side effects--no skin changes  and a brief period of extreme fatigue.  I chose not to do the Tamoxifen or aromatase inhibitors because of concerns about those side effects.  I didn't do an Oncotype test.  It wasn't offered to me because I had a large amount of high nuclear grade DCIS with necrosis, so that alone determined the need for radiation.  I wonder how I'd feel if I knew I had a high oncotype score, if that would affect my decision regarding the hormonals. So far, I'm happy with the decision.

    Now, if you don't want to go through annual or biannual screenings with mammo, MRI, etc. and would potentially have a constant fear of recurrence, then maybe lumpectomy is not the way to go. Is the DCIS so extensive that lumpectomy is not likely to achieve clean margins?  Did you have an MRI to help determine if there is more disease present?  All these things bear on the decision.

  • Maito
    Maito Member Posts: 11
    edited January 2014

    Hi Ballet12, many thanks for getting back to me so quickly. Tthe surgery went very well, I got wide margins the first and only attempt. The closest  margin was1.5 cm. The extent of DCIS was 1.7cm so it was quite quite small.  I have not done a post-op MRI.  

  • ballet12
    ballet12 Member Posts: 981
    edited January 2014

    Hi Maito, so you have wide margins (very!).  It seems, then, that the decision would be based on how you feel about continued monitoring over time, as well as concerns about radiation and hormonal therapy.  Most people (underline most), seem to get through radiation well.  You might be able to request the Canadian protocol, which is three weeks of radiation in a higher dose, but shorter treatment period than the traditional five week treatment.  That's what I had.  Then you could decide about the Tamoxifen, or try it and see if you do OK.  Many people do.  So, then it boils down to the question of anxiety about recurrence and wanting to put it all behind you.  The mastectomy plus DIEP is a big deal, so you would eventually be able to put it behind you, but again, it's a tough road.  I hope you have support from family/friends, and although we are only "electronic" friends, we can also support you.

  • Maito
    Maito Member Posts: 11
    edited January 2014

    ballet12, thanks heaps for  your insights - much, much appreciated.  I am meeting with a PS who specializes in DIEP to find out whether I would even qualify for this procedure. If am not a good candidate, then my decision will be so much easier because I do not want implants.  So, it is either DIEP or rads+tam.  I have lost so much weight the past few months and I might not have enough abdominal fat to make two size B breasts.  I will let you know my decision as soon as  I meet with the PS.

    Once again, many thanks for your advice and suggestions.

    Best ...

  • jmb5
    jmb5 Member Posts: 532
    edited January 2014

    Maito, if you really want to be over and done with everything, MX is not unreasonable, and a lot of women make that choice. It is a radical choice for DCIS, but in my opinion, not unreasonable. I was diagnosed with a DCIS recurrence recently and am having a BMX with immediate DIEP reconstruction in less than 2 weeks. I cannot have radiation twice, so mastectomy is really the only option. I have since learned that the radiation damage to the breast can compromise and limit reconstruction options. (This is part of why I chose DIEP.) I cannot have a nipple sparing mx because of the previous rads also.

    There are lots of things to weigh, and frankly none of them are great options, but whatever you chose, you'll get through it and you'll have tons of support here to help you along the way. Here is the DIEP 2014 thread that you can check out. Some of the women there have recently had surgery, some are waiting to have it. They are a wealth of knowledge and support... http://community.breastcancer.org/topic_post?forum_id=44&id=816167&page=1

  • mema4
    mema4 Member Posts: 574
    edited January 2014

    Laurie,

    This whole experience is mind boggling. Not only do you have to deal with the emotional and physical aspects, you have to learn the terminology and be expected to know the right choice to make.  I was diagnosed in late December and with the help of my BS I decided to gamble and go with the lumpectomy. Everything looked like a sure thing on all the tests. The only question I had was the radiation part. I had a gut feeling to radiate the whole breast. But, I didn't have the chance to act on it. My BS had explained the choices so when we reviewed the path report it was a crap moment to learn my gamble didn't pay off. Had a mastectomy the next week which was 3 weeks ago. But here's the thing, I got to make a choice. You can do that. If you have good health care and a good support team, all that can lay out the information clearly (I asked the same questions over and over until I got it right in my mind) then you look at those options and choose what is best for you. And follow your gut. If I had succeeded with the lumpectomy, the choice I was making with radiation would have been right for me.  I too will be thinking of you; prayers for your health and prayers for your peace of mind as you walk through this valley.

  • Lbwagner69
    Lbwagner69 Member Posts: 45
    edited April 2014

    Hello All,

    I can't believe I hadn't posted since the initial startup post.  The biopsy did come back as a recurrence of DCIS.  My option was a mastectomy (BMX- tram flap) due to my having lumpectomy and radiation 2 years prior.  I was taken off of Tamoxifen during the period of the surgery.  I am very fortunate the doctor didn't wait to see if more changes would occur in the calcifications, because they did find a small (.5cm) area of invasive in the pathology report which was HER2+.  Had I waited, I would have been in a totally different situation.  I had the BMX and found no lymph nodes were involved and have been on Herceptin treatments for a year now (2 to go!!)  SO...I guess I answered my initial question if it were possible for a recurrence while on tamoxifen after receiving initial radiation treatments!  I am well and looking forward to a clean slate as I finish my treatments!  (oh..not sure why, but I am back on Tamoxifen).  Wishing all of you well, too!

    Laurie

  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    Laurie - 

    Thanks for the update and glad you are doing well, although I am of course sorry you had to deal with this again!

Categories