Received DCIS Diagnosis - Comments Invited

The reality tends to sink in in waves as well as your understanding of what is happening and how you want to proceed.  There is much to learn and take in.   Make sure you both give yourselves time to process what is happening and how you feel before you make any big decisions.  The first 2 to 3 weeks after diagnosis were completely overwhelming for my husband and I.  It does get better after you've gathered all your information and made your decisions.  Hang in there! 

What a wonderful,supportive husband you are! I also think that by becoming an active,educated part of the treatment team that you are finding a positive way to cope with a situation that no one wants to find themselves in. I hope your wife can get to this point because it is supposed to be very helpful in the healing and recovery process. I am almost 55 and my children are grown but I am an elementary school teacher (1st grade). I taught for the first 10 days of this school year before I went out for surgery. I read almost every children's book available on telling children about breast cancer. Most of them applied to the parent/child relationship so I didn't use them with my class but many were quite good. Check out your local library, the American Cancer Society and amazon.com. As for a second opinion, I had one at a major teaching hospital (Stanford) and it provided peace of mind which is a very valuable commodity when you are dealing with a bc diagnosis. Lastly, it seems that you have figured out that things are not cut and dried with this disease. Each test, biopsy and pathology report can change what you thought you were dealing with and how to proceed. Learn all you can but don't get too far ahead of yourself and be prepared for things to change at times. Caryn

May you have smooth flights home and best of luck to you and your wife with Thursday's appointment.

GOOD LUCK TODAY!!!  keep up posted on what the Doc says.....

Thinking of you, BlairK. 

OH...ooops...I must have read something incorrectly...I meet with my Doc again on 9/15 too.  I will wish us BOTH good luck :-) 

Dancetrancer, what an excellent idea!  My MO is Indian with a heavy accent.  I've met with him once, and go back this month to discuss hormonal therapy.  I was joking I needed to bring a translator with me, but recording and listening back later makes a lot of sense.

Pat

Blair: now let's back up here a little. You're not sure your wife understands how serious DCIS and complex DCIS is? It's true there are a lot of treatment options, and there's a lot of science behind it. If human medicine was not complex you wouldn't have to go to school for a long time to practice it.

But serious? I dunno.

I absolutely agree that a DCIS diagnosis, even if microinvasion is not expected, is something that should be thought about seriously, and there should be some follow-up. That being said, I don't believe it's generally a very serious cancer. There's a certain chance that, even if she were to have no surgery, she'd live a long and healthy life. DCIS doesn't kill anyone. (Though it may harbor or change into something that will.)

So I think you should keep this diagnosis in perspective. Perhaps your wife is underreacting a bit, but when you say you hope the meeting with the doctor "will bring home how serious this is," I have to say I get the impression you're overreacting some.

It also sounds to me as though your wife is just a teensy bit stubborn. ;^) If so, the more you try to get her to believe "this is very serious," the more she will try to deny it. 

Blair, I read your post and had the same reaction as cycle-path.  cycle-path, well put!  

I agree that DCIS is complex. It's a heterogeneous disease, and there is no one-size-fits-all treatment. Different grades, different subtypes, different hormone status, different sizes of tumors...  a diagnosis of a 1cm, single focus low grade cribiform DCIS is very different from a diagnosis of a 6cm, multi-centric high grade DCIS with comedonecrosis. Understanding and decifering it all, and figuring out the appropriate treatment for the diagnosis that you have, can be confusing.  

I'm another though who really doesn't see to DCIS to be "serious". Not really serious, anyway. Like any diagnosis of breast cancer, a diagnosis of DCIS is shock to the system.  For most of us, our diagnosis is life changing.  It may change how we see ourselves (a new sense of mortality), it may change how we see our bodies (they can fail us) and it may result in permanent physical changes to our bodies. It will also affect those closest to us, as you are certainly discovering. These emotional reactions and physical changes are the same whether one is diagnosed with DCIS or with a more advanced invasive cancer. I would never downplay these impacts. I've been there. I've been impacted. However I've also always known, from the very first phone call when I got my diagnosis, that I got off lucky. No, I'm not lucky to be diagnosed, but then 1 in every 9 women will be diagnosed, so why not me?  And since it was me, I was extremely lucky that my BC was caught at such an early stage, a stage at which I really don't need to worry about my mortality - although admittedly sometimes you can't stop those thoughts from entering your mind (but trust me, it really does go away with time).

So as cycle-path said, it's important to keep a DCIS diagnosis in perspective. DCIS is breast cancer, and that stinks and that can be scary. But as breast cancer goes, DCIS is as good as it gets. It's the least serious diagnosis you can get. For me, as I was struggling with all the fears that a diagnosis of breast cancer brings, I found that it was really helpful to constantly remind myself of that. Blair, if your wife has come to terms with her diagnosis and if she has moved away from that initial irrational fear, that's a good thing.  It's not something you want to change.

By the way, in an earlier post you mentioned "our pathology report". I think it's great that you are doing all this research but remember that it's your wife's pathology report. This is her diagnosis. It's her cancer.  It's her body. The doctors you will be seeing are her doctors. Your wife has to deal with this in the way that works for her.  I really don't mean any offense but in some of what you are writing I sense that you have become so involved with this that you are seeing this to be your (you and your wife's) diagnosis and your (you and your wife's) treatment plan.  Be careful of that.

And yes, if the doctor is at the same facility as where your wife had the tests, she should have all the reports and films and anything she needs for the discussion with your wife.

I hope that Thursday's appointment - your wife's appointment with her doctor, which you will be attending  ;-)  -  goes well. I hope it helps your wife come to terms with her diagnosis, understand her diagnosis, and start to formulate her thoughts about her treatments.    

BlairK, on a different note....

I sense that your intention is to get off that plane and get your wife straightened out in her thinking -- educate her and persuade her down the path you think is best, because you know better than she does.

 I will tell you having dealt with clinical depression for my entire life that one HUGE trigger for a downward spiral is feeling out of control of your life.  For me, it is like the sun rising in the east and setting in the west -- when I feel like my autonomy is being circumscribed, I will become clinically depressed every time.  

 Being diagnosed with cancer is an out of control thing in and of itself.  For those of us who don't tolerate is well -- and your wife may or may not be one -- being told what to do is, shall we say, counter productive.  Compliance spells depression.  Non compliance spells who knows, but whatever it is may be better than depression.  

 My diagnosis is recent.  I have explained to my husband that telling me what to do is the surest way to incline me the opposite direction.  Lecturing me or educating me is a form of telling me what to do because the information conveyed is selective towards reaching the decision he wants me to reach.

 There is a TON of other emotional stuff going on.  But I will tell you that this is it -- this is, quite literally, the hill I am willing to die on.  And I will -- I am absolutely that stubborn.

 None of this may be relevant to your wife, but I offer it for your consideration. 

Blair, nope, I'm not in the medical field.  I've just been reading about DCIS for 6 years and thanks to that and my professional background, I'm able to weed through all the garbage on the internet to find the gems, and I'm good at understanding the important pieces of research when I find them.  But I'm just a BC patient like everyone else (more accurately, a former patient). So don't take my word on anything.  Do your own research and talk to your doctors.  

As for the term "serious", I believe that a diagnosis of DCIS should be taken seriously. I believe that the decisions that one has to make after a diagnosis of DCIS are serious decisions. I believe that there can be serious implications if DCIS is not treated appropriately. I worry when DCIS is downplayed, called a pre-cancer or not taken seriously.  But I also get concerned when I see people overreact to a diagnosis of DCIS. I've seen too many women who've reacted irrationally or made decisions based on fear ("I don't want to die and leave my children", "I had my BMX to save my life"). So I think it's important to think about DCIS in the context of all breast cancer.  Looked at that way, it's not so serious. That's just how I see it. 

Blair,

The beauty of this board is people are going to give you feedback and play devil's advocates, etc., etc.  Each of the posts you have received is helpful, even if they may or may not accurately reflect how you plan to interact with your wife.  They are just making sure you don't push her away or overwhelm her with information.  I believe you understand that based upon your responses.  You love your wife and are doing exactly what I would be doing if my husband had some type of illness.  He is not the research based one in our relationship - I am.  So keep up the good work, but as always remember to temper your interactions with your wife to avoid pushing her away.  You are a wonderful husband to care so deeply for your wife!