DCIS Recurrence after Lumpectomy and Radiation

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This is my first time here.  I was diagnosed in 2007 with DCIS intermediate to high grade 1.2cm.  I elected to have a lumpectomy and 30 treatments of radiation.  2 years later at my annual mammography they found DCIS again in the same area.  I have now elected to have a double mastectomy.  Can anyone tell me there experiences with recurrent BC after lumpectomy and radiation.  This has been like a kick in the stomach and I am worried it can come back again after the mastectomy.

Dianac

Comments

  • mittmott
    mittmott Member Posts: 409
    edited July 2009

    Hi, I had a small invasive my first time.  I had lump/ rads, and was told, I had to be watched, but I would be fine, it was very tiny.  6 yrs later I had an mri, they told me it was nothing , probably a lymph gland, had biopsy, and they found cancer. I was then told, I would have to have mast, due to the fact you can't do rads twice to the same area. Turns out it was dcis with a microinvasion. I elected to have a double mast, I don't want to do this a third time. They tell me the odds are good, that there should be no recurrence. Who knows, I don't live in fear of it, but I know it's something that can rear it's ugly head again.  With a mast though, you are decreasing your odds greatly.  Good luck.

  • KAK
    KAK Member Posts: 1,679
    edited July 2009

    Oh, Dianac, I'm so sorry to hear this.  Yesterday was the one year anniversary of my diagnosis of DCIS, similar treatment to you, and I still remember vividly the day they talked to me about recurrence risk.

    We are all a little different, but my recurrence risk after surgery was about 30%, or a one in three chance of getting it back.  Radiation reduces that by half, to 15%, or one in six.  Still not great.  Tamoxifen is supposed to reduce that by half again, to a 7 or 8% risk of recurrence, or a 1 in 12 chance.  

    So, we all end up living with perhaps a 5 to 10% risk each year of getting cancer again in the same breast.  Lucky you.   The risk of having cancer occur in the lymph nodes after a double mast is much much smaller than that, but I don't know the percentages off hand.  There's some good info on the site here, at www.breastcancer.org/risk/personal_history.jsp

    Good luck & let us know how you are doing.

  • Dianac
    Dianac Member Posts: 6
    edited July 2009

    Thank you for your reply.  I realized going into the lumpectomy my risk was low for recurrence.  I should be so lucky playing lotto.  I guess I should be thankful they caught it early again.  I am having my mastectomy on Monday, July 27th.  They are doing a sentinel node biopsy as a precaution as they can't do it latter.  I am believing everything will be ok but I really thought I would not have to go this route.  I will let you know how things go.

    Dianac

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

     Hi Dianac,
    I am 4 years out from first dx.  There's a suspicious lump in the site of my lumpectomy, and it needs to be biopsied.  I'm already thinking the cancer is back, and if it is, maybe asking for a double mastectomy.  I am just curious about reconstruction.  I had radiation on my left breast.  Are you thinking of reconstruction at this point, and if so, will your irradiated breast pose a problem? 
  • Dianac
    Dianac Member Posts: 6
    edited July 2009

    Hi Brenda

    I hope all goes well for you.  I did have  radiation and going to have reconstruction on both sides.  According to my plastic surgeon I should have no problems with the radiated side based on the fact that my skin tolerated the radiation very well so my chest muscle should be find.  I will let you know.  By the way, what was your first dx if you don't mind me asking?  Good Luck

    Diana

  • AnnieMc
    AnnieMc Member Posts: 17
    edited July 2009

    Hi Dianac,

     I am sorry about your recurrence of DCIS. In April 2004, I had a small DCIS/IDC.  It was mostly DCIS and grade 3.  I had a lumpectomy, chemo (for the IDC as it was ER/PR- HER2 -) and radiation.  In November 2005, I had a recurrence of the DCIS.  I had a unilateral mastectomy with immediate reconstruction (lat flap and implant) and a lift of my other breast. 

    When I was first diagnosed with the recurrence, I was floored and very scared. But, as I had DCIS only and no invasive disease, my prognosis is excellent.  I have had no issues with that breast since and I am very happy with my reconstruction.  I just passed my 5 year anniversary for invasive disease and this November will be 4 years since the recurrence.  I feel great and am currently training to run a marathon.  Life goes on.

    Good luck to you. 

    Anne 

  • Janathan
    Janathan Member Posts: 121
    edited August 2009

    Hi Diana,

    Soooo sorry to hear about your recurrence.  It really is a kick in the stomach, and I can relate. Followng a routine mammo in Oct. 2002, I was diagnosed with a small DCIS on the left, grade 3.  I underwent a lumpectomy, radiation x6 weeks, and Tamoxifen x5 years.  Following a routine mammo 7 years later in May 2009, I was diagnosed with right-sided DCIS, grade 3, 1.1 cm.  Bilateral MX was a no brainer for me this time around, especially since Tamoxifen didn't prevent recurrence, so 10 days ago I underwent bil MX with immediate Alloderm/TE reconstruction. Thankfully, margins were clean, and sentinal node biopsy was negative. My PS said I'd have no problems with reconstruction on the radiated side since I had no problems with radiation, and being just 10 days out from surgery, I'm doing remarkably well.  I got the drains out at the 1 week mark (relief) and have very little pain...mostly soreness.  The TE's are uncomfortable, but that's normal.  So far I have had no complications and have no regrets.  My PS is very pleased with the results.  Per his orders, I am only allowed to lie flat for the first 2 weeks postop with legs elevated (no crossing legs or ankles) occasional standing, and can sit ONLY for meals and going potty.  He emphatically said NO recliner and NO exercises for now.  See him Wed for another followup and see my oncologist 8/11 for his recommendations.  My BS said mine was a new primary DCIS on the opposite side and not a metastasis.  I'm fortunate to have an excellent BS, PS, and oncologist...all who I have total confidence in.  I've been given an excellent prognosis, and I'm keeping a positive attitude. The best advice I can give is to listen to your PS and follow his/her instructions, and check out the Shopping/Packing/To-Do List under the Surgery - Before, During, and After forum.  That was a big help to me!  Best of luck to you, and please let me know how it goes for you.

  • Dianac
    Dianac Member Posts: 6
    edited August 2009

    Hello all

    Had my bilateral mx last Monday, 7/27/09.  All went well.  My left radiated side according to my PS tolerated the radiation well and he said that there is no problem with the reconstruction. He implanted the tissue expanders in both breasts.  I just got my drains removed today.  Thank God.  Just waiting for my pathology report.  I am praying everything will be fine.

    Diana

  • Janathan
    Janathan Member Posts: 121
    edited August 2009

    Diana,

    So glad to hear all went well and your drains are out already.  Waiting on the pathology report is the hardest part.  I'll keep you in my prayers for good pathology results and quick healing.

     ~Janathan

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    I was diagnosed with IDC in Oct. 2004 -- had lumpectomy, chemo, rads. Thought everything was just fine and was having surveillance. Then Jan. 2009 I was dx with bc in the other breast - this time ILC and in 4 lymph nodes. I had bm followed by chemo and now doing rads. I am investigating reconstruction. I can't do implants because of rads. I have an appointment with a PS to talk about DIEP

  • Dianac
    Dianac Member Posts: 6
    edited August 2009

    Just got my pathology report back from my bilateral mx.  As expected found DCIS in left breast however got clean margins and no lymph node involvement.  Right breast was totally cleared.  I am very relieved.  Now I am on my way to healing.  Thank you all your prayers. My left side is much more sore than the right side due to the radiation I received on that side from the first go round with DCIS.  But according to PS that is to be expected. My right side is doing great.  I can lift my arm over my head already and this is only after 9 days after surgery.  To all hang in there.

    Diana 

  • Janathan
    Janathan Member Posts: 121
    edited August 2009

    Diana,

    Congrats on your path report..great news about clean margins and no invasion!  I'm 2 weeks out today from bil MX.  Saw PS today, and he put me on a stronger antibiotic due to some redness on the right, but the radiated left side is healing well.  Have to lie low another week.  See both PS and oncologist Tuesday and pray the redness goes away.  I wish you the best on healing,..take it slow and don't overdo it.

    ~Jan

  • Dianac
    Dianac Member Posts: 6
    edited August 2009

    Jan

    We will all get through this.  Healing does take time.  Keep positive and continue to enjoy life.  I am looking forward to it.

    Diana 

  • KAK
    KAK Member Posts: 1,679
    edited August 2009

    Oh, golly, I am soooo sorry to hear about all of you dealing with recurrence and new occurrence, but I am glad you are hanging in there.  Hugs to you all!

  • Gin52
    Gin52 Member Posts: 377
    edited August 2009

    8 years out from 1st dx of stage 1/grade 3/clear nodes/.8 cm/lump and rads, no chemo.  Just got new path report wed - invasive again, stage 2/gr3 and headed to surgeon to plan masectomy on monday.  one day at a time, one step at a time....we get thru it, because....there really is no option, right?  Good luck, and ((((((((((((hugs)))))))))))))) to all facing this 1st time or repeating!

  • TheShopMama
    TheShopMama Member Posts: 577
    edited August 2009

    Gin.. You are right.  There is no option but to get through it!   I was diagnosed in 2004 with IDC.  2cm tumor, grade3, HER2+.  I had lumpectomy, chemo and radiation and a year of Herceptin.  My risk for recurrence was very low.  In December of 2008 I was diagnosed with DCIS in the same breast.  Had bilateral mastectomy in January of this year.  All was non-invasive with no lymph node involvement (none the first time either).  The beast is wicked and evil.  We never know and that is why it is so important to be vigilant about checkups and spreading the word about early detection. 

  • Melykfarm
    Melykfarm Member Posts: 10
    edited October 2009

    I also have DCIS and its a large area in my right breast. I have opted for the simple mastecomy with recontruction. So nervous about the ordeal.

  • RoseK
    RoseK Member Posts: 4
    edited November 2009

    Hello,

    This is my first time doing something like this.  I don't know if I should start a new topic group. This group seemed like the closest topic to my sister's situation.   I'm making an inquiry on behalf of my sister who does not live in the US and who does not have reliable internet access where she lives/works in Kenya.  But her doctors, tx, etc is done in Israel.  She is considering 2 treatment options and she is very unsure about what to do.  I'd like to know if anyone has had a similar and recent experience to hers who faced the same or similar tx options. 

    My sister was diagnosed with DCIS 5 years ago.  At that time she had  a lumpectomy and radiation, and then 4 years and 10 months on Tamoxifen.   She had a recurrence near the lumpectomy scar in the left breast discovered during her recent 6 month medical check in Sept 09. 

    She had a bilateral mastectomy on September 22.  Pathology report shows that that tumor was .9 centimeters (less than 1 centimeter: 9 millimeters), HER-2 strong positive (+3) and moderately strong positive on estrogen (+2).  Progesterone is negative.  A sentinel node biopsy was done on the left breast, the problematic breast, and they were clean.  A node from the right breast was also examined and that was to be found to be benign. 

    My sister writes "my oncologist (the team she has been with for 5 yrs.) recommends that I undergo 12 weeks of chemotherapy with weekly administration of Taxol and Herceptin followed by a continuation of Herceptin every 3 weeks for a total of 1 year.  I decided to go for a second opinion with the head of the oncological ambulatory care at another  hospital.  She recommended that I undergo 12 weeks of chemotherapy also but with TCH, which is Taxotere, CARBOPLATIN  and Herceptin, followed by a continuation of Herceptin every 3 weeks for a total of 1 year.  Her opinion (as well as my surgeon's) was that TCH would better "blast" any remaining cancer cells than Taxol and Herceptin and, that it is better to blast the disease first since I may not have a second chance later. "

    My sister also write  "TCH - Taxotere, Carboplatin and Herceptin chemo vs. Taxol and Herceptin chemo.  What chemo is more appropriate for my situation relating to chances of longer term survival?  The reason I am asking is that I have heard of many instances where "appropriate" chemotherapy was given (in my case, Taxol and Herceptin) and, in any case, metastasis followed.  Therefore, is it better to do the more aggresive chemotherapy of Taxotere, Carboplatin and Herceptin (TCH) instead of the more "appropriate" chemotherapy of Taxol and Herceptin to provide more chances of avoiding metastasis?  What is the thinking in the U.S. on this subject?" . 

    I would appreciate  if anyone who  has had a similar diagnosis and faced similar treatment options can share their experience, offer any guidance so she can feel more settled in her heart about what to do.  This whole thing is very daunting since she must travel to Israel for tx,  far from where she has been living and working.  There is so much on her plate between the logistics of traveling and being away from home and work for this extended period.  I am hoping to find some online support or email buddy and information for her to access.  

    Thank you for your help.  Thank you for reading and considering this.

  • pitanga
    pitanga Member Posts: 596
    edited November 2009

    Dear Rose,

    Like your sister I had a lumpectomy but ended up with a recurrence in the same breast. Mine came 9 years after original dx. But my tumor was invasive whereas your sister´s was DCIS, and I had chemo the first time around in addition to the surgery and rads whereas she had only rads and lumpectomy. From what I understand, DCIS is somewhat more likely to develop local recurrences when treated with lumpectomy because it is often multifocal.

    As for which chemo combination is better for her, my situation is not very comparable. I also have a metastasis to my cervical spine so my onc felt that since I already had chemo (A/C) nine years ago, estrogen blocking therapy alone is the way to go for the time being. My recurrent cancer was grade 2 and growing slowly. You did not say what grade your sister's tumor was or what its growth rate was. These are important in determining treatment plans. Maybe since the first 2 oncologists had such different opinions, seeking a third opinion would be in order.

    Best of luck to her.

    Lisa

    PS-- You may get more replies to your post if you start a new thread. When new posts are added to an already existing thread, people sometimes assume it is more talk on the same person's situation. 

  • RoseK
    RoseK Member Posts: 4
    edited November 2009

    Dear Lisa,

    Thank you for your reply. Actually my sister has IDC  Invasive Ducttal Carcinoma now.  So I guess this is not quite the right discussion group.   I will take your advice to start a new thread. 

    I will try to have my sister register so that more of her  info shows as it does at the bottom of your response. 

    I thank you for writing and wish you all the best in your health and tx.

    Rose

  • Plils
    Plils Member Posts: 146
    edited December 2011

    Hi ladies,

    Just wanted to know from experiecned as you all have, I was diagnosed 3/2011 with IDC stage 1, grade 3, no lympnodes involvment, 4/2011 had lump/sent lymp node, 5/2011 chemo, rad finished in Sep,  11/4 total hyst/ooph.  Now I just noticed the other day that my bc breast is all of a sudden bigger than my normal one and a little hard on the bottom and my bc was at the top of my nopple, I am a lttle scared it might be a recurrance on new bc what do you all think for your experience oh I am not on arimidex.

    Lots of hugs to all

    Pam 

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