DCIS (high grade) lump or Mast?

Have you had an MRI? 

I was in a very similar situation to what you face now.  I had a lot of high grade DCIS with comedonecrosis.  Two different surgeons recommended mastectomy, although one was willing to attempt a lumpectomy (but warned me that there was a good chance that the surgery might not result in clear margins).  Like you, I was resisting the mastectomy - it seemed like drastic surgery for such early stage BC.  It was an MRI that helped me most with my decision.  MRIs are better than mammos at showing high grade DCIS, and my MRI showed "stuff" throughout my breast.  My surgeon explained that there was no way to know if this "stuff" was more DCIS, but just the fact that so much of my breast wasn't clear was enough to convince me that a mastectomy was the right decision.  As it turned out, all that "stuff" was DCIS - my breast was pretty much full of it.  The good news from the MRI was that it showed my other breast to be completely clear, despite a recent biopsy for calcifications (benign) and three other previous biopsies.  So I felt very comfortable with the decision to have a single mastectomy.

That was over 4 years ago, and so far, so good - I've had no problems since with my remaining breast.  And as much as I don't like the fact that I had to have a mastectomy, I've gotten used to my reconstructed breast (I had immediate reconstruction with an expander, and then later, an implant).  It's not the real thing by any means but I can dress normally and I look normal. 

If you haven't had an MRI, that's my suggestion.  If the MRI shows a relatively small suspicious area, you might feel encouraged to try the lumpectomy; alternately, if the MRI shows a large area of concern, it might help you decide on the mastectomy.

I'd had radiation to my chest for a previous cancer and since they won't reradiate, mastectomy was my only option.  It seemed unfair to the point of ridiculousness to get a mastectomy for 3mm of DCIS.  I never felt particularly in love with my breasts but the idea of losing one seemed surprisingly unbearable. But you know what?  Life went on.  The surgery wasn't nearly as bad as I feared and I wasn't in a lot of pain.  Though I'm happy with my reconstruction, sometimes when I check my naked reflection in the mirror I get sad seeing the scars, but mostly I hardly notice and it hasn't even been a year yet.  That's not to push you in any direction, but just to let you know that there's light at the other end of a mastectomy.

 My PS won't do recons at the time of mastectomy in case the pathology shows a previously unknown finding.  I don't know if it's the same for expanders, but it may be worth asking about.

Hi-

I had DCIS 5 years ago. It was in 3 places so the doctor recommended a mastectomy. I did it and 4 years later I had IDC in the other breast.

If I were to do a mastectomy with recon, I would go to NOLA.

Sorry that you got DCIS. I dont know the best was to deal with it but I do know that it sucks !!

Since you can't do MRI, maybe you can look into a BSGI - Breast Specific Gamma Imaging, a test and machine made by a company called Dilon.  It's nuclear medicine, I think they inject you with something radioactive and then do....I'm not sure exactly, if it's like a mammo squish or if they wave a wand around your breast or what.... but it's new and supposedly like a faster & less expensive MRI.  It's not available in too many places yet, I think Dilon's website has a list.

Don't know if it will work for you, but thought I'd make the suggestion.

sweatyspice, the point that your surgeon made is really important.  As patients, we tend to think that a re-excision is a bad thing, but if you go to a surgeon who never needs to do re-excisions, what this actually means is that this surgeon removes lots of breast tissue - and often, more than is necessary. 

The reason that re-excisions are required is because the surgeon is trying to get acceptable margins, i.e. a reasonably sized band around the edge of the removed breast tissue that contains no cancer cells.  The wider the margins, the less likely it is that any cancer cells were left in the breast and the lower the risk of recurrence.  The easiest way for a surgeon to get good margins is by removing a much larger area of breast tissue than what appears to be cancerous.  The problem is that for many women, removing more breast tissue than necessary impacts the cosmetic appearance of the breast.  So a good surgeon will try to walk the fine line of removing enough breast tissue to get good margins, but not removing more than is necessary.  What makes this particularly difficult, especially in those cases of DCIS which present as calcifications (rather than a solid lump) is that the surgeon is in effect operating blind.  Cancer cells are microscopic; they are not visible to the naked eye.  This is why a marker is usually inserted prior to DCIS surgery - this tells the surgeon where the area with cancer is.  Heading into surgery, the surgeon's estimate of the size of the area of cancer, and his/her estimate of how much breast tissue to remove, is based on what was seen on the diagnostic films (mammos, ultrasounds, MRIs). These films are not always accurate so it's possible that the amount of cancer can be greater (or smaller) than what was seen on the films.  And when that happens, you end up with "dirty" margins and a re-excision is necessary.  The important thing to know is that requiring a re-excision doesn't mean that your surgeon screwed up and it doesn't impact your prognosis. 

Another important thing to understand as one decides between a lumpectomy and mastectomy is that it makes no difference if the cancer is pure DCIS or if some invasive cancer turns up in the final pathology.  I've read several posts in this thread that imply that a mastectomy is a better choice if the cancer turns out to be invasive, but this simply isn't true.  In fact, numerous studies have shown that mastectomies are required more often for DCIS patients than for those who have invasive cancer.  There are several reasons for this:

- DCIS cancer cells are confined to the milk ducts. This means that as the cancer cells multiply (as cancer cells do), they tend to spread out through the ductal system.  Because of this, it's not unusual to find women with large areas of DCIS.  Invasive cancer, on the other hand, tends to grow within one area of the breast (in other words, a lump forms as the cancer cells multiply).  So areas of invasive cancer are often smaller and it's often easier to remove invasive cancer and get good margins with a lumpectomy, than it is to have the same result with DCIS.

- Another reason why mastectomies are done more often for DCIS is because women with DCIS have fewer non-surgical treatment options.  DCIS women don't get chemo and they don't get Herceptin and they aren't put on AIs.  For someone with DCIS, the only currently approved non-surgical treatments are radiation and Tamoxifen.  Here's how this can impact the mastectomy vs. lumpectomy decision:

1. For someone with a large area of cancer, if the cancer is invasive, since chemo will be required anyway, chemo might be given prior to surgery, in the hopes of shrinking the tumor.  If this is successful and the tumor does shrink, a lumpectomy might become possible.  For someone with DCIS, this option doesn't exist.  If you have a large area of DCIS (as I did), a mastectomy is necessary since there are no options available to shrink the area of cancer prior to surgery.
2. The other difference for DCIS women vs. those with invasive cancer are the treatments available to reduce recurrence risk after a lumpectomy; chemo, for example.  Chemo is given is to address the risk of a distant (i.e. outside of the breast) recurrence.  Because DCIS cannot travel outside of the breast, women with DCIS do not require chemo.  But for those with invasive cancer, even if they are node-negative, there is a risk that some cancer cells may have escaped the breast (either undetected through the nodes or through the bloodstream) and moved into other parts of the body.  That's why chemo is given.  However, even though chemo is never given to specifically address local (in the breast) recurrence, chemo is effective at lowering local recurrence rates.   For HER2+ women, Herceptin is another tool much like chemo. Herceptin is a drug used to combat the risk of distant recurrence, and therefore it's not given to DCIS women.  But like chemo, Herceptin works to help reduce local recurrence risk, as well as distant recurrence risk.  For women who are post-menopausal, AIs are another option available to those who have invasive cancer, but AIs are not approved (except in a clinical trial) for those who have DCIS.  AIs, like Tamoxifen, work to reduce both local and distant recurrence risk.  What this all means is that those who have invasive cancer have more tools in their arsenal to lower recurrence risk after a lumpectomy, vs. someone who has DCIS.  A DCIS woman can have radiation and take Tamoxifen.  A woman with invasive cancer can have radiation and chemo, and take Tamoxifen or an AI and/or Herceptin.  So after a lumpectomy, someone with invasive cancer may be able to bring their recurrence risk down much more than someone who has a lumpectomy for DCIS.  And this is another reason why mastectomies are required more often for DCIS.

All this is not to say that invasive cancer isn't a concern. The concern with invasive cancer is not that it's in the breast; the concern with invasive cancer is that it can move outside of the breast.  Breast cancer in the breast is harmless.  Breast cancer that has moved outside of the breast can kill.  Anyone who has invasive cancer (even just a microinvasion) faces some level of risk that some cancer cells may have escaped the breast prior to the surgical removal of the cancer. Whether one has a lumpectomy or a mastectomy makes no difference and doesn't change or reduce this risk.   

I hope this all makes sense.  I know that for many of us, it is frustrating to think that surgery as drastic as a mastectomy may be required for DCIS, but sometimes it is, particularly for those who have large amounts of high grade/comedo DCIS, as I did.  And with that pathology, a mastectomy would not be considered "over-treatment".   Having said that, for those who have larger amounts of DCIS who don't want to have a mastectomy, there's no harm in trying a lumpectomy first, to see if adequate margins can be achieved.  If the margins are good after surgery, then it's on to radiation and possibly, Tamoxifen.  If the margins aren't good, then perhaps an attempt is made at a re-excision, or perhaps you move on to a mastectomy. Or if the cosmetic results after a lumpectomy aren't good (even if the margins are good), there is always an option to move on to a mastectomy.  Once you have a mastectomy, you can't go back.  But if you have a lumpectomy, you can still decide to have a mastectomy as a second surgery.  That's something to consider for anyone who really doesn't want to have a mastectomy (and I can certainly appreciate that feeling!).

ajmifaust,

We each recover from surgery differently, but in my case, I was outside taking a walk less than 48 hours after my mastectomy surgery.  Your arm mobility will be restricted for about 6 weeks, and during this time you won't be allowed to lift or pull heavy things; it also may be difficult to drive - I didn't drive for about 2 1/2 weeks - but other than that, I felt perfectly fine by day 2 and was able to go shopping, out to eat, to movies, etc., all with no problem. 

As for checking your right breast, chances are that everything is okay (I remember having all sorts of strange aches and pains after I was diagnosed; I think many of us do).  I think I read somewhere that about 3% of women are found to have BC in both breasts at the same time.  Still, it does make sense to do a double check of your "healthy" breast before heading into surgery. My surgeon insisted on it, so I had another mammo and the MRI and prior to surgery I ended up having a stereotactic biopsy of my "good" breast because some calcs were seen on the mammo; these turned out be be benign so I went ahead with the decision to have a single mastectomy only.   I do agree that since you are going into surgery anyway, you and your doctor might as well have the most complete picture possible of what's going on inside both your breasts.

Good luck!

The choice is yours for sure. I really suggest the masectomy. Had 5 lumpectomys. They were all scary and painful. Finally had a masectomy with immediate reconstruction. Now the recovery is emotional but no more surgeries or chemo. Good luck and know that we are here for you.