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

This is a very interesting thread. I have to agree with those who have said that essentially cancer is cancer and we're all in the same boat. I was diagnosed with an ER+/PR+/HER2+ IDC so the good news was that surgically I could have a lumpectomy but the bad news was that I needed chemo and radiation as well as a year of Herceptin due to the Her2+. When I read about all the cases of women who have DCIS (and I have a close friend who has been diagnosed this week) and are often faced with much more extensive surgery than I had, it reminds me that there is no easy road with breast cancer at any stage. I consider my surgery date as my "survivor" date because that's when the tumor was removed and as far as I know I have been NED (no evidence of disease) since that time. I prefer the term NED because I think cancer-free is misleading.  

DJL, Wow 6 surgeries that's incredible... This friday I go in for my 3rd thats the C-V Flap nip surgery. I waited quite a while because I wasn't happy with my reconstruction at first. Everyone kept saying "well you're alive, be thankful"  well DUH to that...people are unbelievable...but anyway when you were listing pre cancer , cancer mastec.....yeah!  when we see that list we know we are survivors. I have  a coworker who was diagnosed with stage 3 BC the year before me and she keeps telling me we are ALL survivors. and oh that mirror thing daily hmmmm oh well there it is right.

dragonfly1, I also consider my surgery date my survivor date. you have a lot on your plate but awesome your chemo and rads are over. will have to checkout your jump for joy!

EJ01 congrats on finishing your treatment. What you say makes sense.  I like your view the cancer doesn't control you. I saw an interview with Robin Roberts of Good Morning  America and she calls herself a thriver which I also love!

Hi blessings2011.  Just wanted to send thoughts and prayers to you for your upcoming surgery. It's a journey we find ourselves sort of thrust into, but here on this site we are traveling it together ,as survivors ,thrivors or however we choose to call ourselves.  There are strong women on this site each with such knowledge understanding and experience. I wish I had had known of this site last year when I was first diagnosed. Blessings to you

I struggled with this for a bit, after all, my cancer was cured with a mastectomy and I did not have chemo or radiation.

Until last month DCIS hit the other breast (I was told because of the success of my first surgery I had less than a 1% chance of having it in my other breast)...so now I have had 2 mastectomy's, lymphedema from the first one 18 months ago...no breasts, foobies that are never quite right...

Yes, i am a survivor. I don't go into the details with others about what "kind" of cancer I had, I just make sure I don't scare friends and be sure if they notice something "different"...see a doctor.

But I do think we are all survivors, this was very scary, it required us all to step up to the plate in some way, and we have learned very much about our breast cancer sisters who have had so much more surgery and treatments, and by standing strong, we help them and everyone understand this better.

Wishing you all the very best!

The way I have always seen the word survivor is someone who has "survived" the treatments and is so far cancer free.  There is an end of survivorship though if the cancer comes back.  But, once it is found and is treated again, then one becomes a second time survior.  Actually, it is a very weighted term, at least the way I look at it because "survivor" in essence means that life will never quite be the same because of how much we change emotionally and as individuals through the process.  We say goodbye, not only to those discarded cancer cells, but to the person we were before and move on.  If we look at it as survived and defeated cancer then 1 out of 4 of all Americans would never be cancer survivors-they will eventually die from cancer.  I see a cancer diagnosis as a catastrophe like an earhtquake--if you come out alive at the end, after treatments, then you have survived.

Okay I've read this entire thread and loved it.

I didn't have the mental strength NOT to have a bilateral mastectomy. I had tiny breasts, they had biopsied 5 areas the first time, in both breasts. Anybody have that Wire Guided biopsy procedure?! Wasn't that a hoot? I know chemo, radiation, and oral meds for BC have side effects and they're not fun either...Yes, I threw up in the trash can, during this procedure, blood running down my chest and onto my hospital gown. No, sorry we can't give you anything for pain or relaxation, you're going straight to surgery from here...

Then waiting for the results, that's fun. BS telling me he won't do a bilateral mastectomy, it's too radical, you don't need that. We'll have to re-excise, you know to get clean margins, one came back DCIS. What if you don't get clean margins, I ask him. Then a mastectomy. Okay, so you're telling me that you'll do one mastectomy but not both if you can't get clean margins?! The other breast has issues as well!! I will get clean margins...

A MONTH later he calls and tells me he got clean margins. Am I relieved? NO. My breasts are ticking time bombs to me. I don't want them on my body. I don't want to incubate them like a HOST! Hatch them into full blown invasive cancer.

You are free to go. That's it? He laughs, well I can give you the name of an oncologist if you want, but you don't need the side affects from any treatment. YOU DON'T need any further treatment. What are my chances of developing BC again? 10% same as any other woman.

FIVE YEARS later of close monitoring, mammo's, sonograms, both breasts I'm talking about, I have a re-occurance in the same breast. I go to him. Will you do the bilateral mastectomies now? I can't deal with this stress. No. I go for second opinion. Oncologist Breast Surgeon orders MRI, never had an MRI...before. That finds a large snakey long patch of DCIS, this did not show up on other tests. BS told me I didn't need an MRI, this patch is really deep and close to my chest wall.Your medical records from your previous breast surgeon? Yeah? States that you refused any further treatment...Really? Show me...that is a lie. I don't see your signature here...it's a lie, I asked him about further treatment, he made me feel like a paranoid idiot for asking, he kind of laughed at me. Hmmm... 

Phone rings, she asks me if I'm 100% sure I want a bilateral mastectomy. Absolutely. Good, because you will have nothing left if I take this as a lumpectomy procedure, then there are three more close to your nipple... You know what I want. Lets get this scheduled.

What I don't understand is this: WHY does it matter? Why feel inferior or not as important as people who suffered more than I did? What it all boils down to is compassion, the fighting spirit in us, the support, and the knowledge.

I have a 'friend' who lost all of her hair, all of her finger nails and toe nails, got sores in her mouth, found trouble in the breast she didn't have removed and they couldn't do an MRI because of the tissue expander in her recon breast.

Now ask me why she asked me if I was going to have any further treatment. It only takes one little cell, ONE and it can spread through your body, There could still be DCIS on my chest wall too, on the skin they saved. YOU could have cancer cells left in your body after your chemo, you could get cancer in the breast you didn't remove...

The madness of all of us. The cancer demon. She just couldn't accept the fact that I wasn't doing any further treatment. Several dr's told me so. Big effing deal, there are no sure things. Dr's have steered me wrong before. We're all just hanging in there, with or without cancer, the whole world is just hanging on.

There are no survivors and nobody is completely cancer free. Why any of us are ashamed for JUST having DCIS is mad. Completely insane. Any woman on this forum wouldn't wish what they had to go through on their worst enemy. I know I wouldn't. Why do we let other's make us feel so shitty? You didn't even have cancer!! Why did you do that? You didn't need to do that! Well, I went through all I could take, I couldn't worry anymore, couldn't lose any more weight. God only dishes out what he knows we can handle. I think that's my answer.

Hi Evebarry :-) I know I should have told him I wanted a 2nd opinion from the first visit, because I knew what I wanted. But I was too scared. Too lost. He intimidated me, lied to me, told me I didn't need any further treatment. My oncologist surgeon? When she told me that his paperwork and records for me documented that I refused futher treatment, I was utterly shocked. I could not believe it. He laughed me out of his office, literally, even telling me that if I was his wife, he wouldn't push oral meds and their side effects on her. But my oncologist told me this treatment 'may' have prevented the re-occurence.

When I went back to him the second time, he said "I think they're just trying to scare you. We can biopsy or watch it for six months. I don't think it's DCIS."  I'd like to have an MRI. You don't need an MRI, totally unnecessary at this point. Well when I went to the oncologist that's the first test she ordered. That test found the DCIS that a mammogram nor sonogram could find. DCIS is nothing to rest on. I don't trust it. It's taken all the joy from my life that I'm willing to give anymore.

It is all experience. you have to be in control of what they do to your body. Do to this, sometimes it takes more assertion than some of us have with our first dx. I had to get mad and take action the second time around. I guess another point I'm trying to make here is that my initial breast surgeon, (not an oncologist) belittled me and my DCIS. I 'could' sue him, but I'm not like that. That's not how I roll.

I just want to be healthy and I wish you all my best too! My very best of luck to you.

Liora, My heart goes out to you. My BS gave me my options, his suggestion and then I decided for myself to do the bilateral mast. I questioned it in mind for quite a while. How can a stage 0 cancer warrant such drastic action. But the fear of not having clean margins and having to do another surgery helped me decide. My DCIS was in three areas and three lumpectomies would have taken most of that breast. The other breast had a benign area that needed to be removed...so as long as they had to mess with that one too, I said just do it. All my best to you as you continue this journey we never asked for.

Liorra,  My sympathies for what you went through.  I had a surgeon who did the lumpectomy and then told me she got all the DCIS out, but I'd need radiation.  I got a copy of the pathology, read some recent studies, and realized that the LCIS in my margin made me a higher risk for recurrence.  I went to four more doctors, who split pretty evenly on masectomy versus radiation.  I opted for bi-lateral masectomy, and they found a couple more inches of DCIS in there.  Bottom line for me: you need to be your own advocate.  Get a second, even a third or fourth opinion.

I d feel funny, though, when I think of myself as a survivor as compared to those women who had invasive cancer.  I don't have any problems with the flat look - I actually kind of like it most of the time. But I have still have pain that radiates around from my chest to my back and down my arm, on the side where they took the sentinol nodes; I lost my job because I could no longer schlep a 25 pound box of documents to court (I was a public defender). I can't do everything that I did before the surgery - or at least can't do it comfortably.   And I still have the fear of cancer with every unexplained pain or bump.   So, I guess I am a survivor after all.   

Just to let you know. I had to have a mastectomy also and I am mad still and it has been a little over a year. It gets a little less each month but occasionally it rears its ugly head and I have to talk myself down.

I hate breast cancer, I hate that I had to lose a breast. I hate that research is slow.....I guess anyone is a cancer survivor who has been thrown into the 'cancer world' (and if you are talking about it, you are there) and have to navigate through it.

I did the shortened protocol for radiation - if you qualify for it, then go for it, the less time in treatment the better, as it is every day, and can get to be a real drag if you have any distance to travel to the facility.  My RO said that studies have shown that there isn't any significant difference in breast damage/burning between the two therapies.  Now I am on tamoxifen. I had DCIS with a little microinvasion, but clean margins and nodes on my first surgery. 

Great disscusion. I too hate pink and the term survivor. However I am a survivor. I had Dcis in my right breast and because there were two spots, was told a mx was probably he way to go. Because of my family history, mother and het two sisters died from bc. All of them had it in one and my aunts then had it in the other that was found too late. My mom decided on a BMX because of that. The invasive cancer was found in the other breast. Guess where they found my invasive1.6 tumor that was not visible in the mammogram, and us? Yep in the one I insisted on removing too. So I was "lucky". My mo was kinda flabbergasted totally unexpected. I too had gotten flack from the people at work that I was overtreating. But obviously not overtreated LOL. Much love.