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Topic: Has anyone had Reoccurance of DCIS after a Mastectomy

Forum: Just Diagnosed with a Recurrence or Metastasis — Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: May 12, 2009 06:04PM

ClaudiaBernard08 wrote:

I had DCIS - Comedo type, High Nuclear Grade, with micro invasion in 2006. I had a full mastectomy and breast reconstructive surgery. What are the odds of this cancer returning? I am worried it will. BC does not run in my family, I am 54 years old and in good health. I did not have chemo or radiation. Thanks everyone!  - Fondly Claudia

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May 12, 2009 07:01PM Nichola wrote:

Hi Claudia

Well I would never say never, but removing the breast for a pre cancer is radical treatment and I'm confident your prognosis is extremely good.  It was 6% for me returning after a stage 1 grade 1 IDC and I guess as a DCIS is probably more like 2 or 3%?   No harm in asking your onco-surgeon, but my advice would be to get on with your life!

Sending you love and luck...

Nikki x

Original DX Stage 1, Grade 1 multifocal IDC 2004. Multiple nodule recurrence in skin of reconstruction, Nov 2007 and reconstruction removed. DIEP/tram replacement reconstruction Dec 2008. May 2010 DX chest wall recurrence.

Dx 11/27/2007, 1cm, 0/10 nodes, ER+/PR+, HER2-
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May 14, 2009 11:46AM BCWarrior wrote:

Hello Claudia, I am almost 58 years young and was initially diagnosed in Jan. 1998 with Stage I-II DCIS. After 2 lumpectomies, what remained of my left breast was just short of a mastectomy. I opted for a bilateral mastectomy even though my surgeon said it was highly unlikely for cancer to return in the other breast. My sister is an RN at a local hospital in the Ambulatory Surgery dept. She told me they were seeing more and more women coming back because cancer had indeed moved to the other breast. Followed up my mastectomy with tram flap reconstruction. Never got the nipples though. Didn't figure there was much point. Think I'll be getting tattoos instead. :)  I spent 1998 taking 8 chemo treatments and 37 radiation treatments. My sister said they gave me "the big guns". Took Tamoxifen for 5 years. In Sept. 2005, I had a pleural effusion for which I had a thorocoscopy and pleuradesis. Pleural effusions are caused by one of two things, trauma or disease. Subsequent PET scan showed bone mets in spine, rib cage, pelvic bone, scapula, right ankle and femur. Figured I was screwed. My oncologist put me on oral Femara to block estrogen (my cancer is estrogen positive). His theory was eliminate the food supply, eliminate the disease. Future PET scans showed considerable improvement. My tumor marker was initially 880 and got down to as low as 33 (38 being normal). As with any drug, your body develops a resistance to it eventually and after 14 months on Femara, I was switched back to Tamoxifen. After 5 months, PET scan showed the tamoxifen had virtually no effect. Now I have been on Xeloda (oral form of chemo) for 13 months.  It's a given that  everyone on that drug gets what oncs call "hand/foot syndrome". My feet were never a problem  but my hands were a different story. They adjusted the dose 3 times but I finally had to say "enough". Both hands . . . particularly palms and between fingers were constantly cracking and bleeding and I tried everything to get it under control. No success and just 2 weeks ago my onc took me off the drug to give my hands time to heal. So now I am faced with a decision . . . try a lower dose of Xeloda or get an IV infusion weekly. I've spent considerable time over the years researching alternative therapies. I'm currently trying to find someone on this forum who has taken Protocel. If you know of anyone, please let me know.

I realize you're concerned about recurrence. Perfectly normal. Are you a fighter with a positive attitude? If so, as far as I'm concerned, you're good to go. Live your life, slow down and you'll find an appreciation for things you never gave a second thought about. Everyone's in such a friggin' hurry and they don't realize what they're missing. By the way, I feel good and don't intend to ever grow up. I ride my motorcycle and jetski and enjoy my life immensely. I've spent 11 years drilling into my brain that the big "C" will NOT get me. 

Wishing you a life of peace and harmony and, of course, good health.

BCWarrior

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May 14, 2009 12:19PM ClaudiaBernard08 wrote:

Hello BC Warrior,

What an ANGEL you are for sending me a reply. Your courage and determination to fight breast cancer is more than amazing,you're a micacle! Good for you... I have my mamogram and breast cancer screening test tomorrow afternoon. I am better today about my worry than yesterday... your email helped a lot. Thank you so very much!

Greetings and thanks from Sunny California!

 Claudia Bernard

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May 28, 2009 10:18PM digger wrote:

Nichola,

I'm sure you didn't mean it to come out the way I'm interpreting it, but I have to admit I was taken a bit aback by your statement:  removing the breast for a pre cancer is radical treatment.

DCIS is non-invasive cancer, but it's still cancer.  And some people need a mastectomy because their DCIS is so widespread, as mine was.  The mastectomy wasn't radical treatment and an over-reaction that was way over the top, but it was what was necessary in my situation.  I certainly didn't have the surgeon just lop off my breast for some little pre-cancer thing.   

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May 28, 2009 10:29PM Member_of_the_Club wrote:

I think Nichola meant this to be reassuring.  By radical, it sounds like she meant aggressive and that she thought this was a good thing.  Maybe in britain, where she is from, they refer to DCIS as precancer.  I know my surgeon here does, but of course this is controversial.  But I think she was saying that Cluadia has taken a big hammer to the beast and can assume its dead.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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May 29, 2009 05:17AM sunkistmi wrote:

I had DCIS, Stage 3 in '06 w/right breast mast, SIEA reconstruction.  I was told I had a 10%-20% chance of it coming back on left side, which meant 80% of it NOT coming back.  Told them I was going to be one of the "lucky" ones.  '07 mammo was clear.  4/08 was not.  Significant DCIS involvement in left breast.  Since tummy fat had been taken in '06, that was not an option.  No fat on butt for GAP's so went w/TUG, using tissue on flabby thigh.

In hindsight, I truly wish I had done the bi-lat in '06.  Really made me mad when BS made the comment that 90% of her patients were having bi-lats done because the chance of it coming on the other side was pretty good, especially when the involvement in the first breast was high.  I said "you never told me that!"  She insisted she had.  I countered with the fact that IF she had, I would not have made the comment about being "lucky"!!!!  I was so angry,

Whatever you do has to be the right decision for you.  Wishing you the best.

Blessings,

Wendy

Dx 5/27/2008, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-
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Jul 1, 2009 03:29PM Krisseykatz wrote:

HI there, Unfortunately, I have.  I was told I had a less than 1% chance of it returning.  Go live my "happy life".  I had a Bi-Lateral Mastectomy for treatment of my DCIS.  In 1 and 1/2 years later, I developed 2 new lumps on my reconstructed breast.  After MRI, and U/S I had 3 lumps....almost 2 years to the day from my first Diagnosis I had 3 lumps removed.  All cancerous...all different types.  I am now less than 1 year out from very agressive Chemo and Radiation.  I am NOT  the norm.  It does happen...but it shouldn't happen to you.  By the way, I wa 39 at first diagnosis.

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Jul 6, 2009 12:08AM ree wrote:

Krisseykatz - Your post alarms me. I had DCIS comedo both breasts same time in 2006 so had partial mastecomys and radiation.  It came back a few months ago so I  had the bilateral mastecomy.  I'm told no more mammograms so I'm wondering - - how you knew your cancer was back.  The great thing about DCIS is that it's found early with mammograms but it sounds like the only way to figure out if it's come back is to wait and find a lump?  That doesn't' seem right.

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Jul 6, 2009 11:10AM ClaudiaBernard08 wrote:

Hi Krisseykatz,

 Claudia here from California. I am so sorry to hear that your DCIS has come back! After reading many posts that some of you have had BC return I asked my doctor to check both breasts even though I have had a mastectomy on the left side. The doctor not only did a mamogram but also ultrasound to check for any new cancer. I am fortunate that it has not returned, but as many of you here, I have been finding out that it does come back more than what they claim. I can only say that once you've had this horrible stuff you need to be agressive as hell with your doctors and force the issue to be checked by any method out there !! Krisseykatz, I wish you well... please keep me posted ....

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Jul 7, 2009 02:18AM PT6 wrote:

I had stage 1 BC in 1978 when I was 29 (BRCA 2+, though this was not known at the time). There was a brief discussion of BMX at the time. I did not go for it. I liked my remaining breast and managed to keep it for 31 years. I was dx with DCIS and had a mastectomy of the remaining breast June 4th. There was alot of enjoyment in having my breast for 31 years.

Dx 4/10/2009, DCIS, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 7, 2009 08:06AM suegmomof3 wrote:

Hi Ladies, I'm confused and concerned ... I was diag'd with DCIS in my left breast in Jan 09.  I opted for a BLM and my breast surgeon told me that no further treatment is needed since I have no breast tissue left.  I have been going through reconstruction with tissue expanders and am having my exchange surgery next week.  How did DCIS come back with mets to your bones when DCIS is supposed to be non-invasive cancer that does not spread outside of the breast tissue???  Or did they find DCIS with invasive components after you had the masc?  I thought I was free & clear based on what my dr told me, but now I'm getting concerned that I may not be out of the woods 100%. 

Krissykatz - what type of reconstruction method did you have performed?  I just don't understand how DCIS can come back after a BLM ...... thank you----sue

Dx 1/22/2009, DCIS, 2cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR+
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Jul 7, 2009 08:20AM, edited Jul 7, 2009 08:22AM by Dejaboo

Hi BCWarrior,

  Im sorry that you had to rejoin us BC sisters.

Can you explain your 1st Diagnosis again.  

Im not sure I understand it as you say you had ...Stage I-II (DCIS is Stage 0)

"was originally dx'd in Jan. 1998 with DCIS. Had 37 rad treatments, 4 rounds of AC and finally 4 rounds of Taxotere."

If it was only DCIS why did they have you do Chemo?   Traditionally that is never done unless it is Invasive Cancer.

Thank you,

Pam

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Jul 9, 2009 05:23PM Beesie wrote:

Wow, this thread is confusing!   Since I've spent close to 4 years reading everything I can find about DCIS, let me try to clear up some of the confusion and ease some of the fears.

Claudia, if I understand correctly, your question was about the risk of recurrence after having a mastectomy for DCIS.  The answer is quite clear.  Most studies - and I've read dozens of them - put the recurrence risk at about 1% - 2%.  One or two studies state the risk to be higher (5% up to even 10%) but the overwhelming consensus of all the studies puts the risk at 1% - 2%.  What this means is that of every 100 women diagnosed with DCIS who has a mastectomy, 1 to 2 of these women will have a recurrence.  KrisseyKatz is one of those women.  The reason that a recurrence is possible after a mastectomy for DCIS is because even with a mastectomy, a tiny amount of breast tissue will always be left - maybe just a few cells - but that breast tissue will be there and that's why there is a risk.

When DCIS recurs, there is approx. a 50% - 60% chance that it will recur as DCIS and a 40% - 50% chance that it will recur as invasive cancer.  Pure DCIS cannot recur as mets, as least not without one step in-between.  The step in-between is that first the DCIS would have to recur as invasive cancer.  It could happen that if DCIS recurs as invasive cancer and this recurrence isn't found until it has progressed to become mets, it might appear that DCIS has recurred as mets, but in fact this isn't true - there was that step in-between.  For someone who had a mastectomy for DCIS, the likelihood of the DCIS recurring as IDC and then progressing to mets is extremely small.  For all women who have DCIS, including the approx. 60% who have lumpectomies (who generally have a higher recurrence risk), the risk of having an invasive recurrence that then progresses to mets is only 1% - 2%.  What this means is that the long-term survival rate for DCIS is 98% - 99%.  So for the 40% of DCIS women who have mastectomies, the risk would be significantly lower than 1%.

DCIS, because it is non-invasive, cannot recur in the other breast.  Of course, anyone diagnosed with BC one time is at higher risk to get BC again, and this includes those who were diagnosed with DCIS.  So someone could be diagnosed with a new occurrence of BC in the other breast but this would be a new cancer, not a recurrence of the original DCIS. 

DCIS is Stage 0, non-invasive breast cancer.  Anyone diagnosed as being Stage I, Stage II or Stage III does not have DCIS.  Because so many women have DCIS along with their invasive cancer (DCIS and IDC are often found together), this can be confusing because the term "DCIS" is included in the pathology report.  But any staging other than Stage 0 means that there is invasive cancer present.  And what happens then is that the invasive cancer "trumps" the DCIS and the diagnosis and treatment is based on the invasive cancer, not the DCIS.  In these cases, the DCIS in effect becomes irrelevant, except that it needs to be removed.  So there is no such thing as DCIS Stage I or DCIS Stage II or DCIS Stage III.  There is only DCIS Stage 0. 

Similarly, because DCIS by definition is confined to the breast and cannot travel outside of the breast, and because chemo is given to address the risk that cancer cells have escaped the breast and moved into the body, chemo should never be required for DCIS.  So it's pretty safe to say that anyone who is given chemo does not have DCIS (although there may be a DCIS component to their cancer, along with the invasive component).

Breast cancer is very complicated.  It's not one disease; it's many diseases.  And even one tiny difference in pathology can make a significant difference in the diagnosis or treatment.  While DCIS is very commonly found together with invasive cancer, pure DCIS is distinct in it's treatment and prognosis.  Claudia and Sue, I hope that this clears up some of the confusion and reassures you, at least a bit!

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jul 9, 2009 05:43PM rubybuttons wrote:

Thank you Beesie!

Dx 10/15/2008, DCIS, Stage 0, Grade 3, 0/10 nodes, ER+
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Jul 9, 2009 07:08PM, edited Jul 9, 2009 07:09PM by Beesie

Daisy, if it's pure DCIS, there can't be lymph node involvement.  Of course for the women who've responded who didn't have pure DCIS, lymph node involvement may be have present from the beginning.  Just trying to avoid more confusion.... Wink

Here's some info on DCIS recurrence rates after a mastectomy:

  • http://www.scienceblog.com/community/older/2004/4/20043379.shtml  "Of the 1,136 patients, 286 had had a lumpectomy and radiotherapy, 444 had had a lumpectomy only, and 406 had had a mastectomy. After ten years, cancer had recurred in the same breast (local recurrence) in 18 per cent (lumpectomy and radiotherapy), 30 per cent (lumpectomy only) and 1.8 per cent (mastectomy) of the women. " 
  • http://www.ajsfulltextonline.com/article/S0002-9610(06)00447-8/abstract "Clinical, pathologic, and outcome data were collected prospectively for 1236 patients with pure DCIS accrued from 1972 through 2005.  There were 150 recurrences (87 DCIS and 63 invasive). Invasive local recurrence after mastectomy was rare (0.5% of patients) and after breast preservation was more frequent (12.0% of patients). "
  • http://www.aafp.org/afp/20070101/tips/4.html "For the 430 women treated with mastectomy, the 12-year probability of local invasive recurrence was 0.5 percent "
  • http://www.annalssurgicaloncology.org/cgi/content/abstract/15/1/235 "The 8-year overall local recurrence rate was 12% after breast-conserving treatment (BCT) [15.6% after WLE and 8.8% after WLE+RT (P = 0.161)] and 0.9% after mastectomy (P < 0.0001). "
  • http://cme.medscape.com/viewarticle/447028  - % loco-regional recurrence: 1.6% "First, DCIS carries an excellent overall prognosis, with only 1% of patients developing metastatic breast cancer. There is no substantial difference in survival expected for any of these local treatment choices. Second, mastectomy provides excellent local control in DCIS. Lumpectomy is associated with a roughly 1 in 4 risk of local tumor recurrence. By contrast, the addition of radiation therapy to lumpectomy reduces the risk of local recurrence by half, to approximately 1 in 8. "
  • http://www.dcis.info/treatment-options.html  "The recurrence rate and overall chance of dying from (DCIS) after simple mastectomy is between 0 and 2%. "

I hope that eases some minds.  Of course, it doesn't mean that a recurrence after a mastectomy for DCIS isn't going to happen.  1% - 2% is a small percentage, but considering the number of women diagnosed with DCIS every year, it's still quite a large number of women.  So it's important to be vigilant and continue to check for lumps.  And we shouldn't be surprised when we meet someone here who was in that 1% - 2% group.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jul 9, 2009 07:26PM deedee61 wrote:

I am also in that 1% that had a recurrence of DCIS.  Diagnosed in 10/06, mastectomy and tram reconstructiom in 12/06. Asked about the need for a bilateral mast. but dr. said odds of reoccurence in 1 year was less than 1%, 8=10% in 10 years so just had left breast done.   Went back for my yearly mammo of remaining breast and there it was again.   I have met several women with same dx over the past few years through friends and once they heard my story, opted for bilateral.  My breast surgeon did make sure he told me that though they do their best to remove wntire breast, there is still a chance a few cells will be left behind. 

 Beesie, thank you for all the info you posted.  Even though I am "done" with breast cancer I feel like  I  need to reeducate myself.

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Jul 9, 2009 11:19PM Beesie wrote:

Deedee, if you had pure DCIS the first time, then your second cancer in your other breast was likely a second cancer, not a recurrence.  DCIS cannot recur in the other breast.  And even invasive cancer rarely transfers from one breast to the other. 

For those who have pure DCIS, recurrence risk refers only to a recurrence of the original cancer in the same breast.  But there is another risk that we also face.  For anyone diagnosed with BC who has a lumpectomy or a single mastectomy, our risk to get a new cancer, unrelated to the first diagnosis, is about double the average for someone our age.  This varies by individual based on other risk factors that we might have, but "double the risk" is a good guideline. In my case,  I was 49 when I was diagnosed.  The average 49 year old has an 11% chance of getting BC in her remaining lifetime (to age 90).  This meant that my risk was about 22%.  This new cancer could occur in either breast, however since I'd had a mastectomy, my risk on my mastectomy side is only about 1% and it's my "good" side that carries most of this risk.  So while after my mastectomy I have only a 1% - 2% chance of having a recurrence of my original cancer, there is a much higher risk that I might be diagnosed with a new breast cancer.

In your case, since your 2nd cancer was in the other breast and since your first cancer was DCIS, from my understanding this means that you weren't actually in the 1% who has a recurrence after a mastectomy.  Instead, you were in the larger group (20% - 25%, from what I've read) who unfortunately get diagnosed with BC twice.  Having said that, in my case I decided to have a single mastectomy and forgo Tamoxifen despite knowing that I'm high risk to get BC again.  Although at the time of my diagnosis my risk was 22% (the good news is that it comes down every year that I don't get BC so now it's about 20%), in making my treatment decisions, I preferred consider the fact that there is a 78% chance that I won't get BC again.  For me, that was a compelling reason to keep & enjoy my healthy breast for as long as I can, hopefully for the rest of my life.  Still, I understand completely that others might look at that risk level and decide to have a bilateral.  It's all a question of how you view risk and what risk level you are comfortable living with.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jul 9, 2009 11:34PM LynnVA wrote:

"DCIS, because it is non-invasive, cannot recur in the other breast.  Of course, anyone diagnosed with BC one time is at higher risk to get BC again, and this includes those who were diagnosed with DCIS.  So someone could be diagnosed with a new occurrence of BC in the other breast but this would be a new cancer, not a recurrence of the original DCIS. " 

 Thanks Beesie.  You sound like you have done your homework. Thanks.  I had BL w/ DCIS no chemo but did have rads, surgeon could not get clear margins due to large area on the chest wall.  Do you know of any recurrance rates or studies on this?

BL Mast w/ TE, Rads, waiting for exchange

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Jul 9, 2009 11:48PM, edited Jul 10, 2009 05:33AM by dkhancock1948

This Post was deleted by dkhancock1948.

Debbie http://www.caringbridge.org/visit/debbiehancock

Dx 11/12/2008, ILC, 2cm, Stage IIa, 3/6 nodes, ER+, HER2-
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Jul 10, 2009 12:05AM Beesie wrote:

Daisy, I've been mulling around what you said in your post.  You mentioned that your doctor said that you had a 10% recurrence risk and your commented that you thought that it might be because you are ER/PR- and HER2+++ and therefore are not a candidate for treatments like Tamoxifen.  Thinking about that, it doesn't fit with my understanding.  The fact is that most women who have a bilateral for DCIS aren't given any other treatment, which means that your situation is not unusual - it's the norm.  So there's no reason that I can think of why your recurrence risk should be any higher than anyone else who has a mastectomy for DCIS.

After a bilateral mastectomy (which I believe is the surgery that you had - please correct me if I'm wrong), for someone who has pure DCIS, the only risk of recurrence is if some cancer cells are left (and start to grow) in that very tiny amount of breast tissue remaining against the chest wall or the skin.  Our surgeons try to scrape away all the breast tissue but they can never remove absolutely all the tissue.  If you consider that on average the recurrence rate after a lumpectomy for DCIS is about 12% (don't quote me on that but I know I'm in the ballpark) - and these are women who still have all their breast tissue - it starts to make sense that the recurrence rate for those of us who have a mastectomy (and have so little breast tissue left) is only 1% - 2%.  Similarly, for those who have a bilateral, the risk to get a new breast cancer would also only be 1% - 2%.  So, while Tamoxifen can reduce the risk of recurrence and/or a new BC by 40% - 45%, with a risk level of only 1% - 2%, the benefit from Tamoxifen is less than 1%.  Considering that there is a small risk of serious side effects from Tamoxifen, this is why women who have bilaterals for DCIS rarely are offered Tamoxifen, even if they are ER+.  So in your case, being ER- and not being able to take Tamoxifen shouldn't change your prognosis or outlook.  Similarly, although you are HER2+++, as per the discussions on the DCIS forum, there is no consensus within science as to what this means for someone who is DCIS.  So it certainly cannot be said that being HER2+++ increases your recurrence risk.

So all that said, I don't understand why your doctor would say that your risk of recurrence after a bilateral for DCIS is 10%.

One additional note:  For those women who have invasive cancer who have a bilateral mastectomy, Tamoxifen might be beneficial because in addition to reducing local recurrence risk, it also reduces distant recurrence risk.  Someone with pure DCIS doesn't have a distant recurrence risk but anyone with invasive cancer does.  So for this reason, being prescribed Tamoxifen after a bilateral for invasive cancer is not unusual.

Lynn, recently I've seen a couple of studies that show that when there are small (less than 2mm) or positive margins after a mastectomy for DCIS, the recurrence rate can be higher.  I can only find one of the studies now - this one found a recurrence rate of 16%: http://www.ncbi.nlm.nih.gov/pubmed/18954711  If I recall correctly, the other study had a lower recurrence rate than that.  Adding radiation, as you did, generally cuts the recurrence rate by 50%.  I'll add to this post at another time if I can find out anything more.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jul 10, 2009 08:28AM suegmomof3 wrote:

Beesie, thanks so much for your explanations & links.  That helps me feel better as to why my dr told me I didn't need any further treatment after my BLM for DCIS.  I will have to get MRIs every other year since I am having implants for my recons.  sue

Dx 1/22/2009, DCIS, 2cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR+
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Jul 10, 2009 12:09PM LynnVA wrote:

Thanks Beesie, any and all info is very appreciated!

BL Mast w/ TE, Rads, waiting for exchange

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Sep 23, 2009 10:56AM Beesie wrote:

There is no such thing as Stage I DCIS.  Pure DCIS is always Stage 0, whatever the pathology may be.

The addition of a microinvasion changes the staging to Stage I but when that happens, the diagnosis is no longer pure DCIS - it is DCIS with an IDC microinvasion.  It is the presence of this very small amount of IDC - invasive cancer - that moves the staging to Stage I.  No amount of DCIS alone, and no type of DCIS alone, is considered Stage I.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Sep 23, 2009 12:37PM Beesie wrote:

Daisy, I don't care what you've been told or what you believe. 

What I do care about is miscommunication to others who've been diagnosed.  By stating that you have Stage I DCIS you are providing incorrect information about the diagnosis & staging of DCIS to anyone who is reading this thread (or other threads where you have stated this).  That's why it bothers me.  I don't care if I convince you - and I know that I won't - but I do want to help ensure that others who are diagnosed with DCIS, or with DCIS with a microinvasion (as I was), understand how DCIS, and DCIS with a microinvasion, is staged.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Sep 24, 2009 12:25AM debbie6122 wrote:

bump

masectomy, chemo, node positive

Dx 12/20/2009, IDC, ER+/PR-, HER2-
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Sep 24, 2009 08:19AM LynnVA wrote:

Isn't that what these boards are for?  Advice and information sharing.  Lets keep the conversation going. I appreciate all who take the time to reply and try to help others along the way :)

BL Mast w/ TE, Rads, waiting for exchange

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Sep 24, 2009 08:49AM AnnaM wrote:

I had a bilateral mastectomy for widespread, high-grade DCIS and the subsequent pathology report listed two microinvasions, 2 positive nodes, stage II. The microinvasions were in the two nodes. They were in the millimeter range but even so, they trumped the widespread DCIS.

Bilat. MX + DIEP 9/2005, 0/9 nodes and 2/2 nodes; IDC, <1cm, Stage IIa, Grade 3, ER-/PR-, HER2+; 4x A/C, 4x Taxol and 1 yr. weekly Herceptin

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Sep 24, 2009 11:41AM cs34 wrote:

Daisy,

I just had this conversation with my sister 30 minutes ago about reoccurances and my ignorance to it and why it happens. I say this with a ton of caution, love and respect to all with reoccurances but it frustrates the heck out of me that it happens and i truly don't understand why it happens when we're all getting "checked."

i was actually going to reach out and ask but i felt stupid and didn't want to insult anyone. (i had a double mastectomy, 3 positive nodes and immediate latt flap reconstruction. just finished chemo last week and i have to do rads the middle of October at the boob & lymph node area. i thought i was in the clear having the double mastectomy from rads but nope!)

can you elaborate a little more about what you know regarding the dietary changes, etc?

thank you!!!

DMX-immediate latt flap, chemo, radiation, ooph

Dx 1/2/2009, IDC, 5cm, Stage IIb, Grade 2, 3/8 nodes, ER+/PR+, HER2-
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Sep 24, 2009 12:26PM Beesie wrote:

Daisy,

You are absolutely right - I'm not a doctor.  That's precisely why I usually try to include links to reliable medical experts and research studies in with my responses.  I don't expect anyone to believe me and wouldn't want anyone to take medical advice from me or make decisions based on what I've said.  I think however that the doctors who are on the advisory board at breastcancer.org, the doctors who advise the American Cancer Society, and the doctors who write the breast cancer treatment guidelines for the National Comprehensive Cancer Network (these are the guidelines used by most doctors in the U.S.), are industry leading experts and they can be believed. Those are the links I provided in my earlier post, supporting the point that DCIS is always Stage 0.  That's what they all say.

I agree completely that we are all best helped by talking to our doctors and asking them our questions.  However, when there is a specific issue, I've found that sometimes it helps to go into my doctor armed with the information I've already gathered and incorporating that into the discussion, with questions such as "Can you explain why you say that I'm Stage I when everything I've read suggests that pure DCIS is always Stage 0 ?".  This way I get a more direct answer to my very specific questions, and it builds on what I've already learned by doing my own research.  

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Sep 24, 2009 02:38PM pip57 wrote:

My Mom had DCIS years ago when it was considered stage I.  Her doctor has since told her that pure DCIS is considered stage 0 because it is noninvasive.  It is only when an invasive component is involved that it can be staged above 0.  It is interesting that there still seems to be some controversy about this.  Perhaps older doctors are still using the older system?

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex

Dx 2/1/2007, IDC, Stage IIIb, Grade 2, 9/16 nodes, ER+/PR+, HER2-

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