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

It would be nice in some ways if dcis wasn't considered a true cancer. Like it was said, a minor surgery and be glad you caught it before it became cancer (that is you only had a lumpectomy. A mx is a major surgery and permanent change to your life). Also...not so because once you've been dx with cancer it's on your medical record as cancer. The first questioned I'm asked when seeing a doctor is "You had cancer?" Although it's been removed they look at you as a cancer patient. I respond, it was a non-invasive cancer and has been removed, I no longer have cancer. The doctor doesn't quite know what to make of dcis dx and there are some who seem a little skeptical of your seemingly knowledge of cancer or dcis. AND...try to get insurance. Often they won't take you if you have been dx with cancer.  Most people, and believe it or not some medical people, don't know the difference between dcis and cancer. To them, cancer is cancer.

Yeah, they told me "No rush" in my case.  Originally, mine was a 5 mm. calcification area, then turned into 4 cm. area of DCIS on MRI.  Still, no rush.  Just DCIS.  Well, after waiting over a month for surgery, they found 3 mm. tumor.  I was so disgusted that I was told to wait.  I could have found another surgeon to get me in right away.  Sometimes it doesn't pay to trust doctors.  We have to be our own advocates these days. I really wish it wasn't so hard to manage our own health and to have to deal with the insurance mess on top of it all!

btw love this discussion

Susan.

It's logical to think that if you wait a month or two for surgery and then some IDC is found in with the DCIS, the development of the IDC happened during that waiting period. In reality, that's most likely not what happened at all.  

The simple fact is that there is always a chance that the diagnosis might change once the final pathology is in. That happens in about 20% of cases where the initial biopsy showed only DCIS. So if you have a diagnosis of DCIS from a biopsy, when you have surgery you have to be prepared that the diagnosis could change.  This can happen if you have your surgery 2 days after your biopsy, 2 weeks after your biopsy, or 2 months after your biopsy.  My microinvasion was found during my excisional biopsy, after my needle biopsy showed only ADH.  My excisional (surgical) biospy showed lots of high grade DCIS and the microinvasion of IDC.  I had my excisional biopsy only a week after my stereotactic needle biopsy.  Then I had my final surgery, a mastectomy, two and 1/2 months after my excisional biopsy.  That pathology report showed a lot more high grade DCIS, but no more microinvasions.  I know that if my microinvasion had been in the area of breast tissue removed during the mastectomy - and not in the breast tissue removed during the excisional biopsy  - I would have thought that the 2 1/2 months wait was the culprit and the invasive cancer developed during that time.  But obviously that wouldn't have been true.

There are two things to keep in mind:  First is that in most cases, breast cancer takes years to develop.  Second is that screening methods are not perfect and in most cases DCIS and IDC look the same on film - and even with an MRI it's difficult if not impossible to spot a tiny amount of IDC in the middle of an area of DCIS.  Similarly in an area of calcifications, it's difficult to distinguish what is DCIS and what is IDC. So in the vast majority of cases where IDC is found when the final surgery is done, the likelihood is very high that the invasive cancer was there all along - it didn't suddenly develop over those 2 days or 2 weeks or 2 months.  Yes, it could happen that way but that would be a pretty rare occurance.  

So if it turns out that some IDC is found when your final surgery is done, don't kick yourself - or your surgeons - for not getting the surgery done sooner. It probably would have made no difference at all.  

thank you from me, as well, Bessie.  It probably was there but probably just a microinvasion.  Most of my DCIS was low grade except for around my tumor.  So, its probably why only a 5 mm area of calcifications was evident on mammogram.  It was just the area around the forming tumor.  The fact of the matter is that they found it when they did.  And I am thankful for that!!

Susan

I really struggled with depression after my DX and MX.  I think a big part of it was my frustration with my own thoughts of "but I'm one of the lucky ones! Mine is stage zero. It is non-invasive."  I have a very good friend who is stage III.  I just lost my 4 year old niece to neuroblastoma.  What right do I have to feel depressed or even scared?   I was ranting to my mother, listing all of the above and she told me "Yes, you are lucky but you weren't lucky enough.  If you were really lucky, you would never have gotten cancer at all."  And that is it, it is true.  No, I will probably never ever know the true fear of a patient who has stage I or II or III or IV.   I can't, I'm not in those shoes.  However, I do have cancer and I lost a breast to that and I will have to live with that fear and the medical scrutiny for the rest of my life probably. My daughter will have to live with it and her daugthers (if she has any...she is only 5 )

Someone, I can't remember who it was had a signature that really summed it up for me and unfortunately I can't quite remember it. It went something like Stage O is like Death tapping you on the shoulder. You know you aren't going to die, but you are going to live the rest of your life looking over your shoulder.  

So I think it is deeply personal but yes I think DCIS deserve the term survivor (though I am not sure I like that term). 

I TOTALLY Agree with The Lady Grey. There is so much controversy surrounding DCIS and it probably is over-treated. Is DCIS Pre-cancer? Earliest Cancer? Pre-invasive cancer? Still, it's removed because it is a Risk factor for developing a true invasive cancer later. The problem: Doctors don't have a good way to tell which women are at risk of DCIS returning as true cancer and which aren't. So there are Vast differences in how it's treated, from a simple small surgery to a full radiation- and chemo blast. It's time for major research to answer the risk question and determine who could skip harsh treatment And who really needs it. Although I believe this growth shouldn't be ignored, I also believe that for something that is so complex and controversial to doctors/specialists/experts shouldn't be treated so aggressively especially mastectomies with or without radiation and chemo. This issue is similar to cervical cancer, where abnormal cells form on the surface of the cervix before invading and is what doctors Now call a pre-cancerous condition, they once termed "cervical carcinoma in situ."  Why couldn't active surveillance be an option for those of us who have DCIS with treatment Only if there is any progression? 

Fightslikeagirl,

I think about those bad cells lurking all the time too.  As you said, all my docs are pretty much done with me too.  To them, I'm fixed so move on but this is so hard to do.  They say a local recurrance can present as a rash or pimple that won't go away but if I find something and go in for a check, I get the feeling that my BS thinks I'm crazy.  I didn't do counseling either because I was ashamed to go when others have been through so much more. 

Emaline,  That signature is so true...."the rest of your life." 

Just my 2 cents. I think of myself as a survivor. I was diagnosed in July 2011 with DCIS. I have had a bilteral mastectomy, just had my 1st fill today. And scheduling to have my ovaries removed due to BRCA 2. When you have been through what I have, you have earned the right to be called a survivor.

rc778, It's good to know I'm not alone in my feelings. I guess I should have at least gone to counseling just to maybe find out more info. I now realize reaching out would probably have helped me with a lot more answers. Live and learn. Gee it took me almost a year to come on here and start looking around.

TraciN,

 I totally agree. I'm sorry you've had to add more to this tough journey. You're right we are survivors . I didn't do the braca testing, but 8 years ago. I had a total hysterctomy, though I didn't have to go that drastic, no cancer but fibroids and dermoid and family history of cervical and ovarian cancer. No breast cancer so figured I dodged that kind of  cancer... go figure.  All the best to you. We fight to survive, So we can continue to live!

I would think the moment you have an incision on your body you are a survivor of something. Cancer or pre-cancer is reason enough for being tested more often and therefore you're part of that club. A lot of it has to do w/how much you think you have to endure. I knew I didn't HAVE to have a bmx so I felt as if people were feeling too sorry for me. Sorry as if it was a tragedy when I had it done. I think if the doctor said I HAD to do it it would feel like a bigger traumatic event. It made me feel a little uncomfortable w/the sympathy as if it wasn't deserved. I realized if I wanted to live longer and reduce my risks I HAD to do it. Just because the doctor gave me choices doesn't mean I didn't suffer mentally or pay my dues like any other cancer survivor. But you start to doubt your story and see others worse off and you feel less worthy of sympathy. For me it was like this at times. That being said we're all going thru something that's not fun and I have to think we're all worthy of whatever sympathy/title given to us.

Hello ladies!

Wow, I am happy to find this thread.  Even if it was 'early' and no matter our treatment choices, cancer involves so much more than the physical 'stuff'.  Within a few months of finishing treatment it feel like everyone else has moved on and forgotten, except me.....strange n a way, good in a way.

I do feel like a survivor, because cancer is cancer in my mind.

Debbie 

I am a survivor on remission till I die, or it comes back again, one or the other, I count from the day of my mastectomy. I would never say cancer free or cured.

It can came back any time and anywhere. My cancer cells are in remission .

P.S. The other thing I've realized on this journey is that I am the only one who will ensure that the right thing is being done for my health. I take that role very seriously, and I am very "on top" of ensuring that my blood work looks all right, that my body feels okay, and that I am eating nutritionally and getting rest. I've tried to abolish as much stress as possible so my body and mind can recover from the shock of getting the DCIS diagnosis.  I don't mean to sound preachy, but we are truly our own best advocates when it comes to health.

Ladies,

I came upon this thread by accident.  I actually meant to go to the LCIS section, but once I started reading this, my heart went out to all of you.

I have an incredible family history of breast cancer.  My mother passed away at 38 from it, my grandmother at 47, and my mother's sister at 41.  There are also lots of aunts and cousins on my fathers side who were diagnosed, but have survived.

I just think its really sad that you are made to feel this way, but I can relate.  I have had 6 biopsies, and 3 excisional surgeries (one when I was 14 years old) and have been diagnosed with ALH, ADH and LCIS.  LCIS is even more controversial than DCIS.  My GYN Dr. told me, if my wife came home and told me she had LCIS, I wouldn't hesitate to tell her to have both breasts removed.  He said he had seen lots of patients suffer with breast cancer, so why wait if you can do something to prevent that.  My breast surgeon says its nothing serious at this point, you don't have cancer, but if you want both your breasts removed, I will support you given your family history.  

I saw an oncologist this week who said I had "baby cancer".... nothing invasive, but that it needs to be dealt with.  I am seeing a genetic counselor tomorrow.

I have decided to have both breasts removed with immediate reconstruction.  It took a while to come to this decision.  I remember being 11 years old... I was at home alone with my mother and she said, "I'm going to show you something... it's not to scare you, but I want you to promise me that you'll do everything you can not to have to go through this".  I remember it like it was yesterday. Although, I didn't really undertand at the time.  She showed me where she had her breast removed.  I remember her being burned from radiation (it was Britain, 1973.... things have come a long way).  I remember her being so sick from chemo.  I am keeping my promise!

My family is totally behind me.  My husband more or less begged me to do this because he couldn't handle the worry.  But still... I don't tell many people.  It's too hard to explain that I don't have cancer, but I am being pro-active against something that might not ever happen.  But, if it did happen, and I did nothing to prevent it, I believe would be worse.

So, sorry for rambling   But, I just wanted to say that you all deserve to do whatever it takes to improve your quality of life.  Whether we have pre-cancerous cells, cancerous cells or invasive cancer ... we need to do whatever we can and support each other.

Take Care,

Valarie