DCIS- mastectomy or lumpectomy and radiation

Hi penguin, I'm sorry you've had to come back again, too. I had a very small (3mm) DCIS in 2005, lumpectomy, no rads, and hormonal therapy for almost five years. A large area of microcalcs was found by mammo last fall, DCIS again as confirmed by stereotactic biopsy.



I decided on BMX because it was clear to me that my body has figured out how to turn normal cells to cancerous cells and it had done it again. Mine was a second primary, not a recurrence. The new area was also very large and another lumpectomy would've left me quite disfigured, although my BS was willing to do it.



After surgery, the pathology found a 1.1 cm IDC tumor in addition to the DCIS and my prophy breast was filled with ADH. Chances are that would've been breast cancer again given enough time.



BMX is major surgery, the recovery is long, and the tissue expanders are uncomfortable. Its been okay, though, and ultimately I'm glad I made the choice I did. Another lumpectomy would not have found the IDC (it was in another quadrant too) and to my way of thinking, my prophy breast was a ticking bomb.



(My Mammoprint results indicated no benefit from chemo, so it was just the surgery for me.)

Hi. I'm new to this site and just learning to get around. Learning a lot too. Just learning the shorthand too. So bear with me.



I think my signature tells the tale but in case not. I had Bilateral Mast on 1/30/13. I had DCIS in both breasts. I could have opted for Lump and Rad. My BS said it could be disfiguring and would continue to have to be on watch. I had Sentinel node biopsy and 3 nodes on right were positive. BS said it was rare to have two tumors in both breasts.



Still just yesterday I looked at myself and thought why did I agree to the Bil Mast? Now reading your posts I see he was probably right. Still it's hard to lose both breasts. I'm 62 and still feel that way. Would still rather have my life though.



I'm grateful for this Community for the support and education. Still a lot to learn.



Blessings to all.

Deb

MNSusan,

Thank you so much for sharing your story. It actually spurred on a conversation I had with my BS today. I had a lumpectomy about 1.5 weeks ago. Scheduled to see a RO on 5/2. I have grade 2/3 DCIS with a dirty margin after surgery. Not a super dirty margin, only one cell found in the margin, but not squeaky clean either. While we were discussing radiation your story came to mind, and I asked "In addition to the dirty margin how do we know nothing else is hiding in there?" I was also concerned that if we did radiation and I had either a reoccurrence or a new primary site, reconstruction after an MX when you have had radiation is much more difficult. What we finally decided is that I am going in for another mammo prior to my visit with the RO. If we find any missed microcalcifications or anything else I am going to have a MX and no radiation. If we find nothing I am going to move forward with the radiation and hope it cleans up any left overs in the margin.



Just wanted you to know that your story really helped me come up with the right questions.



Thanks!

Thank you for the correction. I said it was a continuing education. I wasn't sure how to answer some of those questions. I see the point. I see you've had recent diagnosis and surgeries so good luck to you.

Guess I need to say bye since I don't belong here. Best.

Penguin, have you seen Bessie's post about choosing between MX and lump/rads? She did a good job of laying out the pros and cons. I'm so sorry to hear about the loss of your mom. That has to color your experience quite a bit. I had two lumpectomies that had involved margins, so ultimately the choice to have MX was not my own. There is great piece of mind with MX. I can't find a MO to follow me since my prognosis is so good. One interesting thing about my second lumpectomy was that there was more DCIS found behind a clear margin, which scares the heck out of me in retrospect! I wish you the best in making your decision. Listen to that little voice inside and she will not steer you wrong.

Thank you all for your support and encouragement. I think one of my confusions is that I was diagnosed with DCIS through biopsy. I had DCIS on both sides. Both the BS and Onc called it cancer. In fact the Onc said it was like winning the lottery twice in one lifetime - I had two separate cancers were his exact words. The only good thing was they were the same type of cancer. Much more difficult to treat if they were different. The BS said I could opt for lumpectomies but felt with my family history and two cancers he recommended Bil Mx. (I've got to learn these abbreviations. Hope this is right.). His experience was that other lumpectomies were often called for then Mx. He said the lumpectomies could be more disfiguring and the Bil Mx would be more "clean" for reconstruction later. I was simply scared, didn't opt for a second opinion because he was highly recommended.

I had Sentinel Node Biopsies during surgery. They took two nodes on left and three on right. The two on left were clear but the three on right were not. They found microscopic cells in these three. The BS said these could even have been cells he "shook" loose from the tumor during surgery. No one has ever changed the dx or said I had IDC so it never occurred to me the dx had changed.



My Onc originally said chemo was up in the air until the Sentinel Node Biopsies came back. I guess that made me high risk. I had OncotypeDX test but do not know the results yet. Grade 1/3 on right and Grade 2/3 on left. I really don't know what this means. All I knew was I had cancer on both sides. Let's get it!



I just finished the four rounds of AC every two weeks and start the four rounds of T on 5/1 every three weeks. I am most upset about the idea of blocking all my remaining hormones. I'm 62 and post-menopausal but still would like to have some womanly aspects. Actually not feeling too womanly anyway with no breasts, no hair, no energy or sex drive!



Now this may be TMI but maybe all this can help someone else. Thanks for listening.

Hi Penguin, great thread!

I agree that Beesie's info on DCIS is brilliant. I actually printed it off and handed it out to friends and family so they would really understand what it was about.

I also agree with the Winning the Lottery analogy!

I was lucky that my latest mammo was at a facility wth newest, Digital machine available. Would you believe that, in the country! Had I gone to my previous place it may not have been discovered, it didn't show up on the last one. Very scary, doesn't bear thinking about!

Thanks for the kind words. I must admit, having a man like Colin,who has never complained and has achieved the most amazing things in the 35 years he's been in a wheelchair, makes this seem easier for me to deal with. He has been a rock for me, and has been involved every step of the way.

I had a really easy time with my recovery from my UMX. I was fortunate that Colin's carers picked up much of the household chores for me. I pretty well backed off doing everything so that I could really heal well. Not because I'm a "Princess" LOL but because I didn't want to jeopardise my being able to do all Colin's care when needed. When we travel, it is just me as the carer, so I need to be fit.  I was told it takes a while for everything to attach back to the chest wall, so I let it have all the time it needed. I am almost 60, and have been on Rheumatoid Arthritis meds for 16 years, so I have to really take care.

As I have mentioned on other threads, for me, this wasn't a painful op, (I didn't need any pain meds after it), it was an op of strange sensations. I had a few little problems, a small infection in the incision, a seroma and a haematoma, but the weirdest was Mondors Disease, a ropey cord running down my abdomen and branching off at my ribs. It did resolve itself after about 7 weeks, with no medication other than low dose asprin.

Obviously, a BMX is a bigger op, longer under anaesthetic, and often followed by reconstruction, so that will be entirely different to my experience.

I wish you all the best for an easy time with whatever you decide. Take caree, and please come often and let us know how you're doing.

You're welcome, Heart.  I'm so glad you were able to get to a plan you feel good about.  

I remember asking my BS if I needed any further studies before surgery (MRI, u/s, etc.) and she said no because of my BMX decision.  If I had opted for lumpectomy, she would've ordered all necessary radiological tests and I'm sure they would've found the IDC.  As it turned out, she was really surprised there was an IDC tumor in there.  Me too!  

ttkslee, the study that you referenced with the 96% and 90% survival rates is for INVASIVE cancer, not DCIS.  There is a world of difference. The 5 year survival rate for DCIS - whether it's ER+/PR+, HER2+ or triple negative, is virtually 100%.

Since you had a lumpectomy + re-excision for your DCIS, and since you ended that process with clear, wide margins, the risk that you might have some DCIS left in your breast is probably very small.  Rads is usually still recommended as a precaution but you really shouldn't be worried that after your surgery you still had DCIS in your breast that over the past few months has converted to become an aggressive invasive cancer. Of course nothing is impossible that would be extremely unlikely.

You say that your surgeon and oncologist disagree about what you should do next.  What are they each proposing?  

It is true that some women develop BC even after a mastectomy. A BMX is not a guarantee.  In some cases what develops is a recurrence of the earlier cancer; in those cases, it's possible (but again, not guaranteed) that rads after the MX might have stopped this recurrence from developing. In many other cases, however, what develops is a new primary breast cancer. Even after a BMX, there is still a bit of breast tissue left and cancer can develop in that tissue. Having rads now would not stop the future development of a new primary breast cancer.  So having a BMX gets your risk level to as low as it can be, but there's nothing that will get it to zero. 

Do you have a link to the study that you referenced?  I'm curious to read it because the 5 year survival figures are a lower than any figures I've previous seen for early stage BC (even triple negative). 

ttkslee, thank you for providing the info about the study. Now I get it.  And now it makes more sense.  It was my error - I was misreading / misinterpreting what you'd written.  

What the study is saying is that women who have triple negative early stage invasive cancers (node negative and tumor sizes T1 - T2 - so this clearly does not include DCIS) have a 7 year locoregional recurrence rate of 4% if they've had a lumpectomy + rads (i.e. 96% locoregional recurrence-free survival) or 10% if they've had a mastectomy without rads (i.e. 90% locoregional recurrence-free survival).  So the study isn't talking about 7 year survival rates; it's talking about 7 year recurrence-free (survival) rates.  Now I understand. 

In terms of your situation, I wouldn't interpret your breast surgeon's recommendation against rads and his comments about rads and reconstruction to mean that he is expecting that you'll have a recurrence. Not at all. With your two surgeries for your DCIS diagnosis, you were left with clear, wide margins.  So your recurrence risk is probably very low. Unfortunately, however, because you are BRCA1 positive, your risk to be diagnosed with BC again - a new primary, not a recurrence - is probably quite high - in fact it's almost certain to be a lot higher than your risk of recurrence. So I'm thinking that your surgeon's hesitancy in recommending rads is based entirely on your BRCA1 status and actually has nothing to do with your DCIS diagnosis. 

According to this website on BRCA cancers, being BRCA1 positive confers a "40 percent to 60 percent lifetime risk for second breast cancer (not reappearance of first tumor)"  Hereditary Breast Ovarian Cancer Syndrome (BRCA1 / BRCA2)   So I understand your breast surgeon's position on this.  I think this warrants a further discussion with your oncologist to understand why he feels your risk is low enough that he's not recommending a BMX. Perhaps you have a particular BRCA1 mutation that is lower risk than most - that could be something that your oncologist understands but your breast surgeon is unfamilar with.  That would be good news, but considering the risk level that's usually associated with being BRCA1 positive, it's something that your oncologist should certainly be explaining if he's saying a BMX isn't necessary.   

Hope this makes sense!  And good luck finding the answers you need to make your decision. 

Penguin, any decisions on your front?

Deb,

There have been many studies that have shown that the recurrence rate after a MX for DCIS - regardless of the hormone status of the DCIS - is around 1% - 2%. There have also been a couple of small studies that have shown that if the surgical margins are very close, the recurrence rate increases substantially - one study I recall had a recurrence rate of 14% for those with narrow margins.  So when you consider that those with close margins would logically be included in the bigger studies that yielded the 1% - 2% result, it means that for those with wider margins, the recurrence rate after a MX for DCIS is likely less than 1%. 

As for the issue of the microinvasion, there are two schools of thought on how that should be handled. Having a microinvasion moves you up to Stage I, it presents you with approx. a 10% risk of being node positive, and it also opens you to the risk of mets. So it's scary to learn that you have a microinvasion. But if you are node negative, then the risk of mets is very very small and the long-term prognosis is almost as good as it is for someone with pure DCIS.  For those reasons, those who have just a one or two true microinvasions (i.e. invasive tumors that are no larger than 1mm in size) usually get the exact same treatment as someone with pure DCIS.

I had a microinvasion that was found during my excisional biopsy.  Other than the fact that it made a sentinel node biopsy a necessity rather than an option when I had my mastectomy, there were no other changes in my treatment plan.  My microinvasion was not HER2 tested (well maybe it was tested since I allowed my tissue samples to be used in medical research but I never received HER2 results) and I'm glad about that. If I found out that my microinvasion was HER2+, I probably would worry more, but there would be nothing different that would have been done from a treatment standpoint. And there really would be no reason to worry. There is nothing I've ever seen that suggests that the prognosis is any different for someone with an HER2+ microinvasion vs. an HER2- microinvasion; similarly, there is no indication that those who have a triple negative microinvasions have any different prognosis than those who have ER+/PR+/HER2- microinvasions. 

The other side of the coin is that we are always learning more. New research is released every day.  So knowing the hormone status of your microinvasion could be relevant in the future, if new research comes out that says that there is something different about HER2+ microinvasions or triple negative microinvasions. But if there is nothing you can do with the information at the time that you are being treated, do you want the information?  Some would say yes; for me, I'm happy to not know. The way I look at it, I was diagnosed when I was diagnosed (2005) and I was treated based on the best information available at that time.  I'm fine with that.  If new findings out come today, I don't want to be second guessing the treatment I had 7 years ago, well before this information was known. 

One thing that's really important to understand with all this is that there can be a significant difference between a true microinvasion and a diagnosis of DCIS-Mi, vs. having slightly larger invasive tumor. Treatment guidelines for HER2+ and triple negative invasive cancers change when the tumor is >5mm in size. Some oncologists implement those treatment guidelines even for tumors that are 3mm or 4mm in size. So while it might seem as though a 1mm microinvasion is not a lot different than a 4mm invasive cancer, it actually is a lot different.  There are a lot more cancer cells in a 4mm tumor than in a 1mm tumor, and those cancer cells have likely been around for longer, so the threat and the risk that some of those cells might break off and move into the nodes or the vascular system is quite a bit greater.  A microinvasion is invasive cancer but it's really really tiny invasive cancer. 

Ductal carcinoma in situ with microinvasion: prognostic implications, long-term outcomes, and role of axillary evaluation  "Our data imply that the natural history of DCISM closely resembles that of DCIS, with a low incidence of local-regional and distant failures. On the basis of our large dataset, the incidence of axillary metastasis in DCISM appears to be small and not appear to correlate to outcomes, and thus, microinvasion alone should not be the sole criterion for more aggressive treatment."

Ductal carcinoma in situ with microinvasion: clinicopathologic study and biopathologic profile  "DCIS-MI seems associated with good prognosis. None of the patients had relapses or metastases. Our data seem to suggest that the natural history of DCIS-MI resembles DCIS, and we, therefore, suggest that all the surgically removed area should be examined histologically to avoid missing foci of infiltrating breast cancer larger than 1mm."