DCIS Recurrence after Lumpectomy and Radiation

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.

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 

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

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

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!

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. 

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.

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