DCIS and the terms 'survivor' and 'cancer-free'

ej01

I hear people talking about being a breast cancer 'survivor'....at what point do you consider yourself a survivor?  Is it an appropriate word for someone who has DCIS and nothing more (where DCIS itself is not life-threatening?)  Or is it only appropriate when DCIS mutates into something invasive that can be life threatening?

 Also, at what point do you consider your self 'cancer-free'?  ...i.e. if you were going to celebrate 1 year cancer free, etc?  The surgery date?   After rads if you are doing rads?

They are terms that I hear all the time but I am not comfortable with them yet.  But since I had my lumpectomy earlier this week (awaiting pathology results) I may want to get comfortable with these terms soon.  

I know there are no right or wrong answers here.  I am just curious how other DCIS 'survivors' use these terms.

Natters

I struggle with those terms, too. Since my DRs assured me there was no chance that I was going to die of DCIS - how can I be a survivor? But some of my friends and family act like I am a survivor. In fact, two very well-meaning friends pitched in and bought me a t-shirt that says "Hero" in pink breast cancer ribbons. I was touched but super embarrassed.

I assume I have been cancer-free since it was all cut out this summer, but just in case, there's rads and Tamox. I feel like if I am a survivor of anything, it's a survivor of all these treatments! I never had a single symptom of DCIS. Just some calcs that barely showed up on some snowy mammo and US pix (I have very dense breasts). It's the treatments that have made me feel bad, like surgery. I will not be celebrating the anniversary of my surgery, even if it is what made me cancer-free. 

As much as I like to complain, I know I'm lucky. I haven't had to survive IBC, not even micro-invasions. I haven't had to survive chemo. I won't get Lymphedema. My MO thinks I only have a 6-7% chance of recurrence after all my tx. So I'm going to move ahead and celebrate everything else I have going on in my life besides cancer.  

J9W

I had DCIS, grade 3, and went the mamo route. Started Tamox but got off of it a year later. I never have considered myself a 'survior' because in the big scheme, I got off easy. However, I'm not so sure I did get off 'easy'. I lost a breast, I get nervous over every ache & pain, I have a lump on my foob that I am obsessing over even thougth I have two docs who told me not to worry about it. Then, I know it can come back even though I had the mx, and no node involvement.  So, maybe the term survivor does apply to those of us with DCIS...because as of now, I am one.

cycle-path

The thing about cancer is that it encompasses so many things. It's almost like the word "mammal," which includes elephants as well as hamsters.

At one end there's non-melanoma skin cancers, which one can easily keep track of and which can be lopped off in the doctor's office with a little local anesthetic. On the other end there's stuff like ovarian cancer which (as I understand it) is rarely discovered until "too late."

IMO a small DCIS stage 0 is just a step or two up from a skin cancer. But a large invasive IDC might be just a step or two down from ovarian cancer. I sometimes feel inauthentic when I say I'm a survivor since I had one of the minor ones. In general I tried to avoid the subject.

Here's what I took away from the DCIS stage 0 experience: once you've had cancer, other than maybe non-melanoma skin cancer, to the medical profession you become "a person who has a tendency to get cancer," a little like a person who has a tendency to get sunburned. And then everything that happens to you medically is taken more seriously.

Since I'm labeled "a person who as a tendency to get cancer," just as a woman who got IDC would be labeled that way, I suppose that's something that supports the Survivor tag.

TheLadyGrey

If I have no chance of dying of this disease, why in heaven's name am I being told I need to cut off both my breasts?

THAT is what I find so confusing.  

I don't want to cut off my breasts for no legitimate good reason.  

When I sit down and really think about it, I'm inclined to do nothing for this pre-cancer non-cancer cancer that may not be pink worthy.   

mebmarj

Ductal carcinoma in situ = DCIS right.

There is your answer. Cancer in the duct just waiting to rear it's ugly head.

You are a survivor, as the world terms us after a cancer diagnosis on the day of your diagnosis.

No one gets off easy no matter what their stage. Lumpectomy, mastectomy, rads, chemo- it all stinks to have to endure, but NEVER sell yourself short. You caught it, treated it and will be vigilant for concerns in the future. Best of luck to you sister. Keep on thriving!

Beesie

TheLadyGrey, I know exactly how you're feeling!  I really resisted having the mastectomy but after my MRI showed that my breast was full of "stuff", I realized that I didn't have a choice.

Here's the thing about DCIS.  It's a pre-invasive cancer.  In their current state, DCIS cancer cells can't hurt you. But these cells might not remain in this current state forever.  At some point in the future these cells might undergo a molecular change and then they are no longer DCIS cells - at that point they are invasive cancer cells.  With low grade non-aggressive DCIS, it might be years before this molecular change happens (although it could happen sooner). With high grade aggressive DCIS, it likely will happen much sooner (but it could take longer). 

But here's the really interesting thing.  Even when the DCIS does evolve and the cells convert to become invasive breast cancer, if the cancer cells remain in the breast, they still can't hurt you. Breast cancer in the breast is not dangerous.  The danger from breast cancer occurs only when some of those invasive breast cancer cells start to travel, either through the lymphatic system or through the vascular system, and move into other parts of the body. That's when breast cancer becomes life-threatening.  The problem is that with any amount of invasive cancer, even just a tiny bit (like a microinvasion, such as I had), there is a risk that some particularly aggressive cells could make their move toward the nodes or sneak their way into the vascular system almost immediately. 10% of women with microinvasions (invasive tumors that are 1mm in size or smaller) are found to have nodal involvement.  And the fact is that for anyone with invasive breast cancer there is really no way to know if any of the cancer cells made their way out of the breast before the cancer cells were removed from the breast.  This is why it is often said that breast cancer can't be cured.  That's because for anyone who's had invasive breast cancer, there is always the possibility that a rogue cell escaped into the body and years later might start to grow and suddenly develop into mets. 

What this all means is that with DCIS you are actually 2 steps away from having any serious health concerns. The first step is the conversion of the DCIS to IDC.  The second step is the movement of the IDC cells to somewhere else in the body. Given this, it seems quite reasonable to consider leaving DCIS in place and just monitoring it closely. Watch for that molecular change to IDC.  And as soon as that happens, whether it's 6 months or 6 years or 20 years, at that point quickly have the surgery to remove the area of cancer cells before any rogue cells have the opportunity to escape into the body. But our breasts aren't transparent - we can't see what's going on inside - and there is no way that even the most careful monitoring will tell you when that molecular change takes place.  That's why DCIS cancer cells, particularly aggressive ones, need to be removed.  And if you have a large area of DCIS, as I did, unfortunately at this time there is no effective way to remove and/or kill off these DCIS cells without removing all the affected breast tissue.  That means a mastectomy.

I know you know all this.  But I also know how easy it is to question why all this is necessary for "just DCIS".  Personally I believe that DCIS is often over-treated.  But I do strongly believe that, at a minimum, DCIS cells need to be removed from the breast.  There is simply no way that you can ever know when DCIS will evolve to become IDC and when the IDC will become dangerous.  Unfortunately if you wait too long to remove the DCIS, you may have waited too long.  But if you remove the all the cancer cells while they are still DCIS, they can never harm you.  

beacon800

Beesie, I really like your explanation - this also makes me feel quite good about where I am with LCIS, even though it is different from DCIS.   Thank you for posting this - made me feel good.

jyg

Ah yes, the question of whether those of us with Stage 0 cancer (DCIS is cancer) are worthy to wear the pink, to walk, to run, to be sisters. DCIS - the disease where current treatment is worse than the disease but the potential outcome is even more worse. 

The word "survivor" has little meaning to me in any context. Cancer free - who knows if any of us are ever cancer free? Certainly those of us with DCIS who have the cells removed one way or the other and then who choose radiation and Tamoxifen (or not) have very little chance of breast cancer recurring in that treated breast. But free from cancer - any type of cancer? Who knows?

(Call me 'Debbie Downer" today.)

lovesnature

I think this issue is highly personal and probably different for each individual with DCIS.

 For me I had high grade, hormone negative, comedo necrosis. The most aggresive form of DCIS, the most likely to cause future invasive status.

That said, with my BMX and reconstruction I don't feel like a cancer patient, or even cancer survivor. I feel like a surgical patient. Yes I now have to go forward with vigilance and anxiety of stuff that would not have bothered me before. Yes I have had to go through some mental anguish and sadly lose my breasts. Still I don't feel like a cancer survivor.

cycle-path

It's true. You can't die from breast cancer. Not even the biggest nastiest breast cancer can kill you.

What people do die from is the cancer that occurs when it gets out of the breast and into an important organ like the liver. That's why we want to get the damn thing out while it's still in the breast. If there was a way to make sure it would never escape the breast, or if we could guarantee that a particular case of DCIS (or even IDC or ILC) would never escape the breast, we could just leave the nasty thing alone. Maybe some day that will be possible. 

Hindsfeet

After my second lumpectomy, my bc surgeon said that I dodged two bullets. I thought at that time perhaps I dodged cancer, and I could not consider myself a survivor because I actually didn't get it. BUT...to think about the bullet analogy... the cancer bullet was in my breast, just wasn't hit as badly, but still hit. The bullet had to be removed, so yes, I am a survivor.

Once dcis is removed are we cancer free? Hopefully...Only God knows.

mom3band1g

see, this is where I am still having a problem.  DCIS in it's current form causes NO harm.  And yet I lost my breasts and still had radiation and all that goes with it.  I am still angry about my treatment.  I have recently realized that I am still angry about what has happened to me.  I don't know if I would have felt better had it been idc.  That just sounds crazy.  I don't tell anyone my diagnosis as I don't want people running off to 'google' it and tell me how I didn't really have cancer (like my Mom did).  Sometimes I really wish I could go back in time and not find that lump.  I need to work past this anger and I know that.  I also 'know' we are fortunate to have found our 'issue' as early as we did.  Doesn't help the sadness over the surgery.  I wonder if I would feel better if Ihad been able to have only a lumpectomy? 

Hindsfeet

mom3band, I got three lumpectomies because I didn't see any of my dx serious enough to warrant a mx. Sometimes, I wish I had a mx with reconstruction to have it all over and done with. My six months screening is a reminder that I am at high risk for another recurrence. You don't know if your breast is housing more cancer cells. So, either way, you wonder if you did the right thing, mx vs. lumpectomy.

I can understand your anger on a smaller scale in that it angers me that my sentenal nodes were removed when dcis doesn't spread to nodes. My surgeon said at my third dx, which was invasive, but not a aggressive type of cancer, "Oh, this is real cancer, not dcis." I thought then why did you try to push radical treatment for dcis? My opinion, but I think the high grade dcis was a more serious dx in that if it did develop a invasive component the out come would not had been so favorable. Your dcis was 6 c...I would say you were lucky it was only dcis...usually lumps found with dcis are at higher risk for invasive type of cancer. What I don't understand is if you had a mx then why rads?

For me, I love telling people I had early stage cancer that did not spread elsewhere because I hate the look they give me when telling them I had cancer. I don't want anyone unnecessarly worrying. At this point, I guess when it comes to the topic of cancer, I'm committed to educating women dx with dcis as I feel so many are rushed through without having the time to process their options. And, Deidre strongly suggest before mx to go for counseling before considering a mx...I agree. It's a big decision, and it needs to be your decision.

Beesie

mom3band1g, I really identify with what you are saying.  When I read all the debate about DCIS and whether it's really cancer and whether it really needs to be treated, I admit that I sometimes go "Phew! Thank goodness I had that microinvasion. No one can argue with me about whether my cancer needed to be treated!".  But really, how stupid is that?  I had 1mm of invasive cancer and over 7cm of DCIS.  I didn't have the mastectomy because of the IDC - that could have been removed with a small lumpectomy. I had the mastectomy because of the DCIS.  But like you I don't go into those details when I talk to people.  And frankly I don't talk to very many people at all about the fact that I had breast cancer. From the start I never told many people because I didn't want to be known as 'cancer girl' and I didn't want the way that people viewed me to change because I had cancer. Now, 6 years later, those things are no longer an issue.  Now I simply don't want to get into a discussion about my diagnosis and treatment.  Whenever I do talk about it, I get these strange questioning looks about how it could be that I needed to have a mastectomy (the pathology report proved that to be true) but I didn't need to have radiation or chemo. Hmmm.... what sort of cancer is that? It goes against most people's basic (and of course, incorrect) understanding of breast cancer and how breast cancer is treated.  If you need to have a mastectomy, it must have been really bad, right?  Otherwise they could just treat it with radiation and chemo, right?  Why would you need to have a mastectomy for such an early stage BC?

Personally I do believe that I would feel differently if I'd been able to get away with having a lumpectomy only. For most of us whose first instinct upon hearing our BC diagnosis was not "cut them both off!", I think having a mastectomy is a really big deal and is not in any way comparable to having a lumpectomy.  I've had 3 excisional biopsies in my life.  Beyond the few weeks of healing, they have had no impact on my life. Granted, I never had radiation, but from reading this board, it sounds as though most women get through radiation with no long term impacts.  My mastectomy, however, is with me every day of my life.  After 6 years I rarely consciously think about it, but when my arm brushes against my chest, I feel that my breast isn't natural.  When I exert myself, I feel the muscles straining against the implant.  It's always there, in one way or another. 

I really hate that such an early stage BC has had a permanent impact on my life.  I am sad that my body has been forever changed.  But from the day that I came to terms with the fact that I had to have a mastectomy, I have accepted it and I have not been angry about it.  I think this is because I realize that the reasons for surgery would have been no different if I'd had more IDC or only IDC. DCIS in it's current form causes no harm.  But IDC in the breast also causes no harm. Whether you have DCIS or IDC, the medical reason for surgery is so that the cancer cells can be removed from the breast before they cause harm.  That's true for DCIS.  And it's true for IDC. Whether you have DCIS or IDC, if the area of cancer can be removed with a lumpectomy, then a lumpectomy is all you need but if the area of cancer is too large to remove with a lumpectomy, then a mastectomy is necessary.  Whether it's DCIS or IDC, the type of surgery does not impact survival.  The role of surgery is simply preventative. Get the cancer cells out of the breast so that they are prevented from doing harm in the future because if left in the breast, these cancer cells, whether DCIS or IDC, may evolve and spread into the body.  

The difference between DCIS and IDC is not how the cancer cells in the breast are treated; the difference lies in what may have happened before the cancer cells were surgically removed from the breast.  And this is why we are lucky that our BC was caught as early as it was. Anyone who's had IDC can never be sure that some of those IDC cancer cells didn't escape into the body before the cancer was removed from the breast. Surgery, whether it's a lumpectomy or mastectomy, isn't going to make any difference if some of those IDC cells have already made their way into the body.  Radiation isn't going to make a difference either.  This is where systemic treatments are required, either chemo or hormone therapy. 

I hope that some of this makes sense and is helpful.  Basically what it comes down to is that you shouldn't think of the need for your surgery and radiation for DCIS as being any different from the need that someone with IDC has for surgery and radiation. Cancer in the breast is harmless.  But cancer cells in the breast need to be removed.  Sorry I rambled for so long to get to that point... I really do need to learn to write more concisely!

Claire_in_Seattle

Beesie.....thought your points were very well written.

I want to chime in even as a Stage II "high risk" patient.  I believe I got off very easy, and also choose to believe that I am cured.  I knew it didn't matter medically as long as I completed all the therapy, and it made a huge difference as to how I would approach the rest of my life.

Exactly two years post surgery, I am thriving.  I don't look at those who had "only DCIS" as being that different than my situation, except that most needed less treatment.  I got off with a lumpectomy, so I didn't face any of those issues.

The texture of the breast with lumpectomy + radiation is a bit different than the other breast, but that is fine with me.  I found out the hard way that the lower pec is weaker when I did ten miles of x-country skiing in deep snow and injured it.  It is still recovering (think I keep re-injuring it too), but I am used to sports injuries.

I am so grateful that modern medicine exists and that most of us will be just fine.  I am not angry.  Stuff happens, and glad I got something that is curable.

I good some good things from this experience.  I love the way I look now as really needed an update.  I have the courage to go forward with my life and career.  I am fitter than ever.  I am much more appreciative of the life I have.

BTW - I use the "survivor" as starting with my surgery.  Because that is the moment that the beast was extirpated from my body.  So lots to celebrate this week. - Claire

gkodad

 I had a recurrence of cancer after 9 years...intially Stage 1 IDC, although predominantly DCIS; just DCIS this time caught very early.  But this time I had a mastectomy.  So I guess I am a survivor, although like many of you, I feel uncomfortable using the word,  My journey has been so much less dramatic than many others, but I'm missing a left breast, so that definitely makes me something!

I hope I'm cancer-free now, and I hope I stay that way.  That's about all I can do.

exbrnxgrl

Whether one chooses to use the word survivor or not is a personal decision. My opinion is that any type of bc, regardless of how "serious" or how difficult the treatments are, makes one a cancer survivor. I feel as if we can support each other better if we don't develop a caste system depending on what type of cancer we have. Yes, I know there are some very real differences but let's not have these differences divide us.

Caryn

1WonderWoman

ej01: you raise a good question and the answer is different for everyone.  People ask me periodically if I am a "survivor," "in remission" etc... and I never really know how to respond.  I am not being dark when I say I don't think I will *ever* be cancer-free.  The very phrasing is ludicrous, in my opinion.  It is all semantics.

When you take into account that every day our body makes cancer cells, I just don't think cancer-free is even possible.  I think, however, it is possible to live a normal, healthy life after treatment and bear in mind that we hold no control over our ending, just our existence.  More to this point, if it makes you feel better to call yourself a survivor, then do so.   Enjoy all of your days and just don't get caught up in the labeling and cancer jargon.  Just use whatever words build you up and make you feel better about this situation and enjoy your life!

etherize

Wow, this is such a helpful thread!  It comes at a perfect time for me.  Lots of great info.

Beesie, thanks for your long breakdown of DCIS and IDC. 

I just met with my BS yesterday and got the written path report from the lump/SNB.  When she'd told me the results over the phone (prior to this meeting), she said the "small spot" they'd removed at the same time as the large tumor was "not cancer".  But after the meeting, when I read the written path report, I see the "small spot" was DCIS!  So I've been wondering why she said it wasn't cancer ...  

She also told me I was "cancer-free" and I was a "survivor" even though I haven't yet had a bone or CT scan.  (She assured me those would be clear, too!)  

Well, yeah, the cancerous lymph node and the tumor(S!) are out, but ... I wondered how she could so emphatically use the term "cancer-free".  If I was really cancer-free, why do I have to have chemo, rads and hormone therapy?  I didn't want to voice the question, though, because I want to believe I'm cancer-free. :-)  (Although I agree with lizzymack1, we're always making cancer cells ...) 

I can't speak to the (over)treatment of DCIS but from my perspective, it's as much a "real" cancer as anything else.

cycle-path

etherize, some people, including doctors, say that DCIS isn't cancer. Also, some doctors tell you stuff to keep you from worrying. 

However, if you've had surgery to remove any known tumors, you can legitimately say you have "no evidence of disease" (NED), which is another term for cancer-free.

You say you had DCIS but your diagnosis line says 2 cm of IDC. So now I'm confused... was this a different instance? 

etherize

Cycle-path, I figured she was trying to keep me from worrying. ;-)

I had a SNB and lumpectomy to remove my 2.3cm IDC tumor.  At the same time there was a wire localization to find/remove a "small spot" only visible on the mammogram.  

When the BS gave me the path results over the phone, she told me the "spot" wasn't cancer, and when I met with her in person, she didn't mention it.  It was only after I left the meeting and read the written path report that I saw the little "spot" was in fact, DCIS.  

So apparently I have (had) both, but I was unable to add DCIS to my dx line.   When I tried to, the other one (IDC) went away.  Hope this clears things up.  

SusanHG

Speaking from someone who has lived through both scenarios (From my biopsy, it appeared I only had DCIS.  After surgery, I had 3 mm. triple neg. IDC), DCIS patients are DEFINITELY survivors.  Not only will you always have to worry about a local recurrnece, just like the rest of us, there is a teeny tiny chance that DCIS had become invasive but did not show up on pathology.  While my risk for metastasis is 1-2%, for pure DCIS this would be much, much smaller.  Still, even so, and in my case even with my tiny chance, we all have to worry because we all have been diagnosed with cancer.  I have been through the exact same treatment that I would have had if it were pure DCIS and it was no walk in the park, believe me.  I am still having after radiation trouble 4 months post-rads and have developed breast lymphadema on top of it all.  So, yes, IMHO, you all are survivors and should count yourselves as warriors just like the rest of us.

Susan

lalisa

I don't like the term survivor and never use it, but that is just me. I had DCIS and small IDC. I usually tell people who ask that they caught it early but with bc you just never know. When someone says they are "cured", well, that sounds kind of ignorant to me, but maybe that is what they need to believe to go on. But it strikes me like the bragging of the insecure. None of us knows what the future holds and I prefer to spend my energy trying to be okay with that, rather than trying to deny it.

I hope I don't sound too harsh.

cycle-path

Susan, I have a tiny nitpick. Yes, with DCIS there can be a local recurrence and there can be a new cancer because there was an undetected invasion. 

But the way I look at it is this: once you've had BC, even DCIS, you are a different species to a doctor. You are "a person who's had cancer" or "a person who has cancer tendencies" rather like a person who gets nosebleeds or freckles. I know my docs have started watching me for every little thing. 

So anyway, I think it's not just that you can get a local recurrance or a metastasis. You can just get a brand new cancer that was unrelated to the first one. I don't worry a whole lot about getting cancer again, but I think if I get BC again it will be a new one.

Laurie08

I for one am thankful for this topic.  I agree with everyone- as I don't know how I feel about it either.  I had DCIS, I had a BMX, I don't think I did that for nothing.  I think there was a life threatening danger growing in my breast by the age of 34.  I read where other women are diagnosed with DCIS and go on to stage IV, not common so it can happen.  When I have aches and pains I think the worse, I am terrified of recurrence.  But everyone says why you only had DCIS.  My only response could be yha.... but.

With that being said, my experience is minimal compared what other ladies have gone and are going through with a higher stage cancer.  My mother had been diagnosed stage IV.  I went to the chemos with her and the rads.  I didn't have to endure that so it makes me minimize what I have endured.  It makes me say it is no big deal what I have gone through.  In comparison maybe it's not.  But having part of your body removed, kind of is a big deal.  Sigh- you see where I am going with this.  I just don't know what I think about it.

I have walked on our local cancer walk since 1998 raising funds.  Way before my mother was diagnosed and passed away from BC, before I was.  Last year I was offered the survivor sash.  I literally almost ran from the woman, no way in hell was I wearing one of those, I didn't deserve it.  Now it's almost time to walk again and I know I will be offered one again.  I still feel weird about it, but not as strongly.  It;s been a long year.

Thanks for letting me think out loud. 

SusanHG

cycle path:  totally get what you are saying.  I guess the way you look at it is much better.  I think at my age, the total risk of dying of any cause is 2%.  So, should I even worry one second about a cancer recurrence if I really don't put much thought into dying in a car crash or of a heart attack etc?  Also, then why should the doctors put so much stake into over testing us.  When I found out I had a small invasive BC, i was given a brain scan by my migraine doctor and countless unnecessary scans for a minor trigger point in my back.  That''s a whole lot of radiation.

So, maybe it would be better if we don't count ourselves as survivors.  Then we can go on with our lives as if cancer had never happened to us.  Would be nice, wouldn't it?  If only we could take a cancer amnesia pill and give it to our coctors as well...

Susan

ej01

Thanks everyone for the responses   I think SusanHG summed up my feelings

"So, maybe it would be better if we don't count ourselves as survivors.  Then we can go on with our lives as if cancer had never happened to us.  Would be nice, wouldn't it?  If only we could take a cancer amnesia pill and give it to our doctors as well..."

I guess I am struggling with the terminology because I am not ready to accept that this DCIS diagnosis is more that a major inconvenience.    The lumpectomy was an inconvenience...not major surgery.   If I choose radiation it will definately seem more like cancer.

Deirdre1

Wow I also feel what Mom3band1g was stating.. I'm 4 years out and I STILL remember every morning that I have a bi-lateral mast. for DCIS!!!  Hell we survive a good night sleep so I don't really get hung up on the word "survivor" BUT I do get hung up on the title DCIS!  I don't know what they should be calling it but the phrase gets such confussed reviews.  I had an attorney (I was working with that the time - nothing to do with bc) state that it felt to him that we must be in some "prehistoric warp" to have to removed the breasts for even small invasive cancer so of course he was mortified with the idea that someone would have them removed for DCIS.... I had doc's tell me to "have them both removed and be done with it" and other's state that with my family history I should be grateful I found my cancer at such an early stage...  And who can be sure we have dodged anything???  Delayed it maybe but dodged it?  Not enough research out there for my satisfication...  And then there are those that claim we (WE the PATIENT) "over treat" -- what comes to mind with that is the commercial of an insurance company where the PATIENT is on the phone with his doctor and the doc is giv'n the PATIENT instruction on how to do surgery on himself and of course the confussed look in the PATIENTS face as he exclaimed "shouldn't YOU be doing this".  I went to doctors to get their PROFESSIONAL opinion and then I took their opinions seriously.. in no other dx would people be saying it is the PATIENT that is overtreating - gallbladder?  hysterectomy? appendix?  etc... NO one questions when those operations are done that the PATIENT was incorrect in their decision.. now there have been studies that suggest that DOCTOR'S over treat with these surgeries... but it isn't the PATIENT that is chastised for "over treating".. sorry for the rant but I think this is actually the problem.. I am not allowed to go to a hospital and say "I need my apendix out" they want to speak to the DOCTOR who advised and referred and approved this surgery.....  Only in women's surgeries does the medical profession ever suggest that it is the PATIENT who much take responsibility for their "over treatment" of anything!!!   Something's wrong with this picture!!!

cycle-path

ej01: "I guess I am struggling with the terminology because I am not ready to accept that this DCIS diagnosis is more that a major inconvenience."

I think we can call ourselves and our experiences any damn thing we want to call them. We can even use different words different times and with different people.  

Some women need MX or BMX for DCIS, some do not. What so many people who haven't had BC don't understand is that BC is really an umbrella term for a bunch of different diseases. A large grade 3 DCIS at age 35 is completely different from a small grade 1 IDC at age 60, and treatments will be different.  

rcox

What a great thread!  I also struggled with the question of whether or not DCIS is "really" cancer through my first two lumpectomies.  I had no idea what to tell people.  If I actually used the words, they'd think it was more than it was and I'd have to accept something I didn't want to accept.

After the 2nd lumpectomy and path reports that showed good margins, my RO (at the time they were thinking RADS would be the best course) sat my BF and I down and said that he wasn't comfortable accepting me as a patient.  Turns out (because you learn more from every single appointment), the total affected area that they had removed was over 9cm.  What had shown on the initial mammo was 2cm.  None showed on the MRI. The dilemma was - if we couldn't see it before, how will we know if and when it comes back?  So, our choice was bmx.  We couldn't imagine the rest of our lives wondering if it was back or not - even after each scan. 

We got lucky.  Final path showed yet another 3 cm area in yet another quadrant that hadn't shown in any of the previous testing - but it was found and dealt with early enough that there won't be any chemo or rads or drugs.

So, my round about way of saying this is that yes, I do believe I'm a survivor.  In fact, I'm pretty proud of that distinction.  I'll be carrying the scars for the rest of my life and my foobs will never be a perfect substitute for the pieces of my body that were carved off.  In my case the treatment was worse than the diagnosis, but much better than the potential long term impact.  My date is 8/12, the day of the BMX.