Received DCIS Diagnosis - Comments Invited

BlairK - there's so much to respond to, I hardly know where to begin.

I was ... 52 at diagnosis, no family (so I can't help with that), and I'm a research fanatic.  Information gave me the illusion of control, I suppose.  No, scratch that, it actually did give me some control.

A very close friend of mine was diagnosed with lymphoma a few months after I received my DCIS news, she NEVER researched, went on messageboards, spoke with others.  I encouraged her to do so but she refused.  We all have different ways of dealing with this, and though you may not agree with the way your wife chooses to handle it, I think you need to respect her choice.

Several people pushed me to see a psychiatrist, take anti-depressants, etc - it was something I didn't feel was necessary and their hounding made me angry.  I did finally see someone associated with the cancer center, mostly to shut everyone up, and as you'd expect given that mindset it was a waste of time.  I only saw him once or twice.

So, I'd say to do your best to support your wife - rather than trying to push her into handling things in a certain way.

Now, as to the DCIS....

You are dealing with the edges of medicine.  It's not all that well understood, it's controversial, there are differences of opinion. 

Someone posted a link above to a 2009 NIH conference on DCIS.  In addition to the abstracts, video of the entire conference was available online.  I'm not sure if it still is - but I can help you find it if you're interested.   I watched the whole thing, twice.

Microinvasion:  The biopsy takes a tiny amount of cells, comparatively.  There's not all that much to look at.  The "definitive" surgery - whether lumpectomy or mastectomy, will (hopefully) remove all the nastiness, providing the full area to examine.  You won't get a final answer on microinvasion, or anything else in the pathology, until that time.  It can take up to a week or so for those results to come in, and it's an unpleasant wait.

I did not personally have any invasive component, so I'm not qualified to speak on how that might change things. 

MRIs are controversial.  I, along with many women on this site, are very pro-MRI.  At this point, they are the most sensitive imaging tool.  Imaging is not perfect.  Sometimes neither MRI, mammo or ultrasound will catch a cancer.  Often they catch things that turn out to be benign.  The common complaint is that MRIs are too sensitive and cause too many "unnecessary" biopsies - with all that entails - money, stress, pain, etc.  That said, I figured if I was going to have surgery, I might as well know if anything else was lurking. 

I had a pre-surgical MRI and it turned up another suspicious area in the same breast. This too was confirmed as DCIS on biopsy.  Now I was faced with multicentric DCIS, for which the standard of care was mastectomy. 

I believe in second opinions. The biopsies from both areas were reevaluated at different institutions.  The doctors all agreed.

I was completely emotionally unprepared to go through with a mastectomy.  I tried to wrap my mind around it, I researched all the options (and there are several options for reconstruction - that's a category in itself.  I won't get into that here, but I saw several plastic surgeons and did a ton of research.  I think I know as much about the process as can be known without living through it.). 

I kept pushing back, and eventually was able to find a breast surgeon/plastic surgeon team who presented an option I could emotionally accept.  I ended up having a bilateral breast reduction - removed the cancerous areas in one breast and made the other breast match in size.

I'm sure a lot of this had to do with my being single, and although I still have my breasts I do feel disfigured.  On the other hand, I still can't imagine mastectomy unless I had absolutely no other choice. 

With my particular pathology, I have a much higher than average recurrence risk.  I see this period as bonus time with my breasts.  If I need to have a mastectomy in the future, I'll deal with it then.  Since my scarred breasts are not as lovely as they once were, it will probably be an easier loss to handle.

One thing to remember about mastectomy is that even with reconstruction, breast sensation is gone.  Some women can live with that more easily than others (me).  Even so, I look at other women's cleavage now and I'm just....sad and jealous.  And I still have my breasts.  Well, a percentage of them, anyway!

Mastectomy is the most personal of decisions.

SNB (sentinel node biopsy):  If there has been any invasion, it is reasonable to check to see if any cancer cells have gotten into the lymphatic system, which would enable the cancer to travel elsewhere in the body.  It is now common to remove the "sentinel" nodes, the nodes which would be the first to which the cancer would travel, rather than taking a large number of lymph nodes, for this purpose.  A dye (there are 2 different processes which may be used) is injected into the breast, the lymph nodes which collect the most dye are removed in surgery (or something like that).

As I understand it, this is always done in mastectomy (because once the breast tissue is removed it's impossible to go back in and do it later), and is an option in lumpectomy.

There is a risk of developing lymphedema when any nodes are removed.  A sentinel node biopsy carries a much smaller risk than an axillary dissection (in which more lymph nodes are taken) - the more nodes taken, the greater the risk - but some risk is always there (2-3% for SNB).

My biopsy report showed no evidence of microinvasion though some surgeons thought it was possible (they disagreed on how likely they thought it was in my particular case).  Apparently 15% of women with DCIS on biopsy have microinvasion, or some invasive component.  So yes, your wife's diagnosis may change.  

My surgeon and I decided not to remove any nodes, and if on final pathology it was determined that I did have any invasion, I'd go back in for a second surgery.  As it turned out, I was "pure" DCIS and thankfully my nodes remain intact.

Margins - with any surgery, but especially with lumpectomy, margins are a concern.  A "good" or "clean" margin is 2mm or more - distance between cancer cells and the end of the piece of excised tissue.  Because there is no lump with DCIS and the DCIS is invisible to the naked eye, the surgeon is guesstimating how much to remove. 

There are clips inserted at the time of biopsy, and before surgery wires (like long thin fish hooks) will be inserted to indicate where the clips are. The surgeon follows the wires, makes a judgment about how much to remove, and.....you wait for the pathology report. 

Apparently the overall rate for re-excision (when the margin is too small, the surgeon will go back in and remove some more tissue) is about 30% of patients.  As one surgeon said to me - "Sure, you don't want a surgeon with a very high re-excision rate, but you also don't want a surgeon with a very low one.  If their re-excision rate is 5%, you know they're generally taking more tissue than necessary."

So, there's a possibility that there will be a re-excision with lumpectomy.

Re-occurrence: There is a risk with lumpectomy, but there's still a risk with mastectomy.  I think it was lump+rads+Tamoxifen at 4% vs. mastectomy at 1-2%

Radiation:  I had standard (5 week) whole breast radiation, without a "boost."  Normally, a boost is an extra week of radiation given to the specific area from which the lump was removed.  That was not appropriate for me, because there had been two areas and the tissue had all been smushed around.  Radiation wasn't that difficult for me physically, but it was rough emotionally.  I felt like I was putting myself into a microwave oven every day; and like a Peep, I might explode. 

The first few weeks my breast felt like it was swelling, and swelling (much more than it actually was).  I thought if I kept it up for weeks the damned thing would explode.  It didn't.  I did get a sunburn and some slight skin breakage under the breast at the very end.  You keep cooking for a few weeks after radiation ends, the worst effects usually emerge after treatment has ended.  Looking back, it wasn't so bad, really.  

I brought in a different CD every day which amused the techs, made them blast it.

I had prone (?) radiation.  I was on my stomach, my breast dangling through a hole, getting the radiation from below.  This is allegedly better because less radiation hits the rest of your body (heart, lungs, etc.)

So many procedures require one to lay on a table and dangle one's breast through a hole - like a car in the shop.

Apparently, radiation to the right breast carries less risk of damage to heart, lungs, etc. than radiation to the left breast.  I had radiation to the right breast, so I didn't really look into the implications had it been my left breast.

There is also the slim possibility that radiation would be recommended after a mastectomy, if the margins weren't good.

This is very much a "one step at a time" process.  You can't make decisions about the next step until all the data comes in from the previous step.  When I was diagnosed, one of the nurse practitioners told me that it was a process, and it would probably take about a year from start to finish.  I didn't want to hear that, or believe her, but she was correct.

My surgeon said that she sees a lot of women go through a very dark tunnel but they do come out the other end, and that in time I'd see this as just one more really annoying thing I had to live with/through.  She was also correct.

I'll leave Tamoxifen out of the discussion for now, I should have gotten out of the house an hour ago.

Oh, and who knows about the meat - or what caused the cancer.  We'll never know.  It makes sense to want an answer to "why" - but there is no answer, not yet.  If she wants to change her diet she'll make that known.  Just don't give her a reason to blame herself, she's probably doing enough of that already.

Cost:  Tamoxifen is cheap, $5/mo (after insurance).  Radiation was $100,000 (before insurance).  Surgery...well I didn't have a typical lumpectomy surgery which would be far less expensive, and I didn't have a mastectomy with DIEP reconsruction (which is what I would have chosen if I'd gone the mast route) which would have been far more expensive.  I'd ballpark my surgery at $50,000 (also before insurance).  Thank God I had insurance coverage, even though I had a high deductible plan at the time.

I've probably left out other things I'd like to communicate but......

And apologies for the sream-of-consciousness writing style.....

You're probably asleep in China.  I wish I was there, sounds very exotic!

Wishing you and your wife all the best!!

Blair, I'm not on the board much these days but I signed on to read my PMs and I came across your thread. You've had great input so I'll comment only on your concerns about the possibility of a microinvasion, and the mastectomy vs. lumpectomy decision.  I have experience in both of these areas, having had a microinvasion along with my DCIS, and having had a mastectomy after having had several excisional biopsies (which are the same surgery as a lumpectomy).

I notice that you are quite focused on the significance of whether or not a microinvasion will be found and you've commented that that you would lean towards a mastectomy if there is a microinvasion.  Here are some things to consider:

First, a lumpectomy is a perfectly acceptable operation (vs. a mastectomy) for women who have invasive cancer (IDC).  In fact the majority of women with IDC have lumpectomies.  So the presence of a microinvasion (which is a tiny area of invasive cancer) is no reason to jump to the conclusion that having a mastectomy is either necessary or a better option.  In fact, mastectomies are medically necessary more often in cases of DCIS than in cases where the cancer is mostly IDC.   This is because with DCIS the cancer cells are confined to the milk ducts.  Cancer cells have a tendency to multiply and spread - with invasive cancer, the cells usually multiply within the same area, forming an ever increasing lump.  But with DCIS the cancer cells tend to spread out within the ductal system of the breast.  As a result, with DCIS it's not unusual to find a  large area of cancer, requiring a mastectomy, while IDC is more likely to present in the form of a defined lump, which often can be easily and effectively removed with a lumpectomy.

In my case, I had over 7cm of DCIS spread throughout my breast, along with a microinvasion, a 1mm IDC tumor.  I saw two surgeons and both recommended that I have a mastectomy, not because of the microinvasion, but because of the large amount of DCIS.    

As for the significance of having a microinvasion (should it be found that your wife does have a microinvasion), although most women who start with a biopsy showing DCIS fear that a microinvasion will be found during their surgery, in most cases the only thing a microinvasion changes is the need to check the nodes.  With DCIS, an SNB is optional.  Once a microinvasion has been found, an SNB is necessary. This is because DCIS cannot spread into the nodes (because the cancer cells are confined to the milk ducts) but invasive cancer can.  The rate of nodal involvement for those who have a microinvasion is about 10%.  Once the nodes are checked, if there is no nodal invasion, then the rest of the treatment is identical to what it would be for pure DCIS.  And although the presence of a microinvasion means that there is a very small risk of mets (and this is why those who have a microinvasion are considered Stage I rather than Stage 0), overall the long-term prognosis for those who have microinvasions is almost as good as the long-term prognosis of those who have pure DCIS.

So really, having a microinvasion is not as big a factor as you may think.  DCIS cancer cells are harmless - as long as they remain DCIS.  But over time, DCIS cancer cells may evolve to become invasive cancer cells.  What nobody knows is when this might happen in any individual case.  Will it be 6 months or 20 years?  In some cases, it might not happen during one's lifetime.  When a microinvasion has been found, it simply means that the biological process of the DCIS cells starting to convert to become invasive cancer cells and break through the milk duct has started.  This heightens the importance of doing something to address the DCIS - and that's probably the greatest significance of finding a microinvasion.  For those (like me) who have a microinvasion, there's no question that the rest of our DCIS cells will convert - soon! - to become IDC, if not removed.

The best visual depiction that I've found of the progression of DCIS to IDC is from BC.org: http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp   

You can see how the DCIS cells start to break through the wall of the milk duct and move into the open breast tissue, first as a microinvasion and then as full blown IDC.  How this happens is still a medical/scientific mystery, although there are a number of theories. Generally it seems to be believed that DCIS cancer cells need to undergo one final molecular change before they have the ability to break through the duct wall and survive and multiply in open breast tissue as invasive cancer cells, but it's not known what triggers this final change.

Second topic, mastectomy vs. lumpectomy.  This is major decision, a very personal decision and only your wife can decide what's right for her.  The experience of one woman - good or bad - is no indication of what the experience will be like for another woman.  Some women breeze through their lumpectomies and radiation.  Others don't.  Some women have little to no pain with their mastectomies and reconstruction, and love the results.  Others find the process to be extremely painful and are very disappointed with the results.  So what's right for one woman might not be right for another.  And what you think is right for your wife might not be what she can deal with emotionally or physically.  And if the surgery leads to emotional distress or long-term physical pain or on-going fears and anxiety, you don't want to be responsible for that.  So you need to be careful to not pressure your wife one way or the other.  Share whatever information you can but make sure that you leave the decision to her.  This decision is just too emotional, too significant and has too many  long-term implications.  Hope that makes sense.

Blair,

I read through most of the comments that you received from everyone and they are great.  I was diagnosed in April 2011 with DCIS and freaked out.  Like you I needed information and found lots of it on this website.  I ended up having two lumpectomies and the SAVI radiation treatment( 10 treaments in one week).  I am currently on Tamoxifen.  The one thing that I have not seen you being given advise on is - ATTITUDE!!.  Your wife's attitude will play an important part in everything.  You must help her to get to a better place so that she can battle this cancer with everything she has.  My attitude during everything was that I was too younn (48) and had too much to do to be beaten by cancer.  With the support of friends and family, I was able to get through this.  Remind your wife that they found it early and that as bad as it seems it could have been worse. That has been my mantra this days - IT COULD HAVE BEEN WORSE. I gave myself a week to have a pity party (crying, and wondering why me) and that was it.  Tell your wife that she is better than this and she can and will beat it.  She has three wonderful reasons to get better - you and your two children. Even my doctors commented on my attitude and said it has a lot to do with how you handle things.  Good luck to you and your wife and remember that this is place to find any information you may need.

Blair K - Sorry you (and your wife) are here, but this is a good place to be once you are in need of this type of information.  Tons of helpful information - and that and having a great team (surgeon, oncologist and rad team, etc.) is the best way to get through this - and you guys will get through it.  I have to emphasize that trusting and feeling comfortable with your doctors can make a world of difference!!

Your wife's diagnosis and treatment sound similar to mine, but not exactly, and I believe everybody's time frame is different, it depends a lot on your doctors.  I was diagnosed April 8th and did not have my lumpectomy until May 18th, part of it was waiting for the breast surgeon my primary care physician recommended to return to town and the other was all of the various testing done before surgery.  I was freaking out, because I thought why is there not a rush to get this mess out of me :-), but in talking to my doctors and others having gone through it, my understanding is that 6 weeks or so after diagnosis is "normal"

I was fortunate that the tumor was small, stage 1, "caught early", lymph nodes were clear, ER+ and PR+ and Oncotype showed a very low recurrence score.  I did not require chemo, I had 28 whole breast treatment and 5 boost treatments (directly to the incision or where the tumor was).

My husband was there for moral support and chauffeuring me to all of my million appts, but I am the web surfer in our family and I read everything I could find to read about it and still do, so I recommend that you continue doing that to help your wife through this.

My child was 19 and away at college when I was diagnosed.  I did not tell him while he was at school.  He came home about two weeks before my surgery, by then I had so much information that I was able to talk to him with information rather than emotion and he took that very well.  Even with your children being much younger, I think that is the way to go, wait until you have all the information and pretty much know how things will go (sure there may be some changes or unexpected stuff along the way), but this way you can tell them pretty much everything that is going to happen at least up until the surgery.  It also depends on the personalities of your children.  I have a 19 year old son who just kind of rolls with things, he came to me a couple of times after I told him to ask questions, but I think he was OK, because I appeared to be OK.

I finished radiation about 3 weeks ago, had follow up with Rad Onc and Med Onc this past week.  Everything looks "good" and I just started taking the Tamoxifen two days ago, I have to go for a mammogram next month, that will be 6 mos from diagnosis.

Once you talk to your doctors you will probably feel much better, because they will be able to answer a lot of your questions, and that's another thing ASK QUESTIONS.  My doctors probably wanted to tell me to stay off of the Internet - LOL!  But when they said "any questions" I would start with "well, I was reading on the Internet......

Blessings to you and your family!

One thing I would be careful not do.... take complete charge of this for your wife.  Also I would not compare your treatment for ezcema to the full radiation that your wife is going to go through. When you say something like that it may sound like you are trying to minimize what she is going to go through.

BlairK - In 2006 I was diagnosed with DCIS which was found through a mammogram and was also in the form of microcalcification clusters. The radiologist took six samples during the biopsy.  One of these samples came back with microinvasion. One out of six samples.  I had a lumpectomy, and none of the tissue removed during the lumpectomy showed any evidence of microinvasion.  So I was "lucky" in that one sample in six of the biospy had advanced, but it was removed during the biopsy.  I had six weeks of radiation and a follow up of Tamoxifen. I hope all the best for your wife, your family and you in the upcoming months.