DCIS not "real" cancer??
I just had my appointment with my surgeon today and scheduled the lumpectomy for September 7th. He was explaining that he wasn't concerned about the fact that it is a Grade 3 because it is so small. He then said "It just means that you'd have a greater chance of it turning into real cancer" I thought it meant there is a greater chance of it becoming invasive. While I realize it is a precancerous condition, I still feel it is turning my life around at the moment and feel silly that my husband is telling people that I have breast cancer if its not. I almost felt as if I shouldn't even be there today.
Comments
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Well, i don't have any cancer and i think you should find a new doc. It does have a greater chance of becoming invasive. It is real cancer that is why it is called carcinoma, it just hasn't changed to "real cancer" as your doc likes to call it. And yes grade 3 is important and more agressive. And there are times when invasive cancer is found along with the non invasive so time for a new doc if i were you. Please don't feel silly because you aren't sick enough with your cancer.
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RN ... I had DCIS, IDC and LCIS. When I tried to talk to the oncologist about the DCIS and LCIS, he was quite dismissive and acted like I was wasting his time. I believe they are all 'real' cancer, and all three kinds mattered to me.
Will be thinking of you next month on the 7th ... warmest wishes,
Bren
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IMO, cancer is cancer, regardless of its size, grade, etc. I think it was a little disrespectful of your Doctor to word himself that way, although I'm sure he was just trying to put you a little more at ease with it all.
I have been keeping up with your posts...... I remember in one of your posts that you wrote that invasion could not be excluded...... you do what you feel is right for you, when you feel it is right for you and your family.
meme31 said it very well......don't feel silly....... lotsof hugs hun....
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RN, I know how you feel when people say that to you. I agree with the other posters here - find a doc who cares if you can.
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My story .. I had DCIS, stage 1 ... however, I also was Her2 positive. I am still unclear as to which is better .. triple negative, triple positive .. IDC, LCIS ..e t c
As previously stated .. Cancer is Cancer .. Please try to get a 2nd opinion before proceeding forward with any treatment or surgery.
Vicki Sam
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m4babies, here's what the main Breastcancer.org site has to say about DCIS, just as you said: http://www.breastcancer.org/symptoms/types/dcis/
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rn4babies: I'm sorry you're going through such a hard experience and have some providers minimizing it. DCIS is cancer. It is a stage 0 cancer with a good prognosis with thorough treatment, but, it is cancer. There has been a push by some to refer to it as a pre-cancer. The idea being only "real cancer" has the risk of metastasis. That makes no sense really. There are other tumors considered locally aggressive without metastatic potential that no one tries to call a pre-cancer. I think some health care providers think by calling it small, scoffing at the risk etc they will make us feel better. I would think it would make someone feel better to know how good the long term prognosis is, but, why someone would think minimizing going through surgery and potentially radiation or mastectomy would make someone feel better totally escapes me. It is cancer, you'll be living with the effects long term, don't let anyone make you feel like it isn't a very hard experience for you and your husband to go through.
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It is quite confusing when professionals disagree. My friend was telling me about a friend of her's that was recently diagnosed with DCIS. She had a lumpectomy. I asked if she was doing any further treatment and she said, "No....they told her since it wasn't cancer she didn't need to do anything else." And this was at a major Seattle Cancer center. Yet, I see women on her getting double mastectomies and/or going on Tamoxifen? So hard when there doesn't seem to be any sort of consensus?
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If your doctor was being a jerk, I'd say go get yourself a "real" doctor. If he was trying to minimize it so that you wouldn't worry, then it was just unfortunate - that might be an encouraging attitude to some people.
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I have a recurrence of DCIS and am having a bilateral mastectomy on August 23. It is most certainly cancer -- otherwise, I wouldn't be losing my breasts. My original lesion was about 1 cm, almost entirely removed by the stereotactic biopsy. I had a lumpectomy and re-excision, 28 regular rads and 8 boosts, and took tamoxifen for 4 years before being diagnosed in June with a recurrence. DCIS is not "pre-cancer" -- it is "pre-invasive" cancer. It would be better if your doctor respected your diagnosis a little more. Trying to comfort you is one thing ... trying to minimize it is another entirely. Only you can judge what he was trying to do. Good luck to you.
L
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I am so sorry.. It is cancer, my first biopsy said my DCIS 1cm, first lumpectomy turned out to be 4cm, 2nd lumpectomy maybe more. I am going for my 3rd lumpectomy to get clear margins, I only have 3 clear margins. I am scared I could be facing a lumpectomy.
Get a Dr who takes this seriously, it is nothing to joke about or brush off. You might consider getting a breast MRI, to see the exact size of the DCIS, I did not. and now my Dr and I wished we did because that could have eliminated some lumpectomies!! But the biopsy showed 1cm. Remember DCIS is microscopic and it hides.. Take it from me that is what I am dealing with!
Tons of hugs and blessings!
Terri
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Whether or not DCIS is "real cancer" isn't (to me) the real problem. DCIS needs to be removed because it pretty frequently hides a small area of IDC. And by anyone's measure, IDC is "real cancer."
The danger in thinking that DCIS isn't cancer may lead to women deciding to ignore their doctors' recommendation that surgery is needed. My suspicion is that if a doctor could guarantee that a given DCIS lesion had no IDC in it, s/he might leave it alone. Someday maybe doctors will be able to do that, but today they can't.
Basal cell skin cancers very, very rarely invade other tissues either, but no one would say they're not a "real" cancer and no reasonable doctor would suggest that they be left alone.
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When the top radiologist that he referred me to called me, her exact words were, "I'm sorry but unfortunately you do have a small cancer in your breast" She is from a top breast center. He is a general surgeon that does alot of breast surgery. My insurance will not allow me to go to any other hospital to have my surgery done. He is an excellent surgeon but doesn't answer questions and pretty much has a God complex. He's that way with everyone. Maybe I expect too much. BTW, my sister had a bilateral MX at the age of 37 for DCIS. A top breast surgeon in Pittsburgh did hers. He must have taken hers seriously!
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cycle-path my thoughts exactly! I have read too many posts by ladies on this board where they went for their surgery thinking they only had DCIS and came out finding out there was another invasive cancer as well. You don't know what you have until the final pathology, which is why it needs to be removed.
As for whether it is "real" cancer or not, I am shocked that this came from a doctor. I'm used to it from people who feel reading Wikipedia qualifies them to make medical diagnosis and prognosis. My BS is the medical director of the breast center of a major hospital and he certainly feels it is cancer. It is cancer that is still in place, meaning not invasive but it is still cancer. However it can change...and you don't know when.
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RN4babies, I understand the limit of insurance etc.. I am extremely underinsured and paying for 99% of this myself. But with the history of your sister, do not make the same mistake I made, get a breast MRI to truly detect the size of the DCIS. As I said before, my biopsy said 1cm, I am now getting my 3rd lumpectomy to get the rest of my margins clear(hopefully), I am at 4cm to 6cm now. With this next lumpectomy if I do not get clear margins I could be facing a mastectomy.
These women on this site are amazing, I never thought I would be here and I was in denial about me having breast cancer and thought I would whip this DCIS with 1 lumpectomy and radiation.. now look where I am.."facing a possible mastectomy"
I don't know how old you are.. I was at risk as I am 54 and never had children.
You are loved here and everyone wants to help you as these women have helped me.
Keep all of us posted, and keep fighting as I am!
Terri
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HMPH. I wonder what would happen if someone told your surgeon he had cells that were like DCIS is his penis but because it was a small area it was no big deal. I bet he would be concerned then...
My surgeon was so much nicer. He told me I had fully formed cancer cells that just hadn't started acting like cancer cells. YET. And there is no way to tell when they would. And that in fact, about 20% of the time, after surgery, he finds it is invasive cancer.
Of course, it is your body, and your diagnosis, so if you don't want to tell people you have breast cancer, I totally get that. But understand, you totally SHOULD be here. It is scary, and there are so many questions and emotions. Where else can you share all of it, without judgement? Don't let one silly surgeon scare you away!
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@gamergirl.......I love your comparison! I wish I was brave enough to ask him that! I think this is the most awesome website ever! I have learned so much from everyone's experiences and advice. I will continue to use this website as my source during my treatment. Thanks to everyone for your comments and advice!
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@tacichon....I'm 47 with mother, maternal aunt and sister all with DCIS. Mom and aunt lumpectomy, radiation and Tamoxifen and as I posted earlier, my sister had a BMX. As for the MRI, my Dr. never suggested it. I have BC/BS insurance I pay through my employer which has a home hospital plan. You can't go anywhere else unless our hospital doesn't do it. It's a small town hospital. My husband is still waiting after one week to get the OK to get an MRI when he awoke last week and couldn't walk due to severe pain in his leg and hip. He's off work and still waiting. It's a shame. I work very hard for our insurance. I doubt that they'd pay for an MRI for something thats not "real" cancer.
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I had stage 0 DCIS and a plastic surgeon friend tells me often that I didn't really have cancer. I felt that guilt and telling people I had cancer until my husband reminded me that I was treated for cancer. Whether the DCIS was really cancer, everyone has agreed that there was a 100% chance that it would have ended up that way. No matter what, you are a breast cancer survivor. No one can argue that.
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There's no way of knowing that all one has is dcis until the final lumpectomy or mastectomy pathology report is generated. Trust me, I had zero signs that my grade 2 dcis had a pinch of idc in it -- nothing showed up on mri, mammo., ultrasound, no family history . . . blah, blah, blah. See my signature.
That's why you treat dcis with seriousness and remove it.
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I started out with LCIS in one breast 6 years ago. After multiple needle biopsie, MRI's, mammos and ulta sounds, I went for a second opinion (while I did really like my first BS, every time I brought up "other options" he would say "one step at a time). My new BS looked at my hx. (maternal grandmother dies of BC-and I know they usually only consider mother and sister); I have VERY dense breasts; and I'd had two major excisions (one called a "partial mastectomy") for LCIS and when I brought up the idea of PBMX, she was all for it. I had it done 8 weeks ago. And, what they found, was DCIS in the other breast-never any issues there before. When she called my with the path reports, she said, we could be having a very different discussion in a year or two had you not made this decision. By the way, they rated my chances of cancer "invading" because of my risk factors at 37% in the next 5 years and 70% in the next 10....
I think you really have to take into account ALL your risk factors (my previous BS never said dense breasts were a risk factor, though he commented each time on how dense my breasts were) and then see if you need another opinion.
I agree with others here-the whole debate about whether LCIS or DCIS is "really" cancer is a useless debate-believe me, I got into it with a mammo technologist and it didn't go anywhere good. If it's not cancer, then why is the word "cancerous" in the dx.? I do understand it's a "precursor" to more serious cancer, but don't underestimate the significance of it.
My thoughts and experience, obviously, only.
Pat
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I never heard it was not a real cancer, so I am surprised. For "not real", I had a radical mastectomy and lymph nodes removed, and now have mile lymphedema issues...my whole life is changed.
My doctor also felt since it was so multi focal, that had to be removed within 2 weeks after the incision biopsy. He took it seriously and acted quickly. My second and third opinions agreed completely.
And now I have been told for the remaining breast, that a MRI is needed every year, my mammograms did not pick up my DCIS, which ended up being in 22 of the 26 samples taken. My breast is dense with calcifications...so it does need more care than just a mammogram.
I think your doctor was disrespectful.
d
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rn4babies, I really understand, and I wish your husband a speedy recovery. We all just share our experiences on this website and support each other with what ever their decision is. OK? Best thing is you caught it early!! Remember we are here to support you.
I have many horror stories about being laid off twice in the last 5 years, I can't get a full time job with a health insurance benefits, I am a techinical contractor, they give us or we pay for some type of insurance that is minimal. I have no paid vacation/sick days etc
Hugs and blessings
Terri
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People are no damn good.
I have a friend who was getting married several years ago. His father is a PhD, and he was marrying a woman whose father is an MD. I don't remember the details, but some newspaper announcement said that she was the daughter of Dr. Something and he was the son of Mr. Something. The groom called the paper to make a correction, and he was told his father was not a "real" doctor.
People are no damn good.
Then of course there are people who will tell a gay couple who've been together for 50 years that they're not "really" married, people who will tell you your child isn't "really" gifted, that a convert to Judaism isn't a "real" Jew, and so forth.
People are no damn good.
All this one-upsmanship is stupid. Who's a real doctor, who's a real Jew, who's really gifted or married, who really has cancer. The need to one-up other people is a basic and very obvious symptom of one's own insecurity.
Anyone who wants to play this game is going to have to find someone other than ME to play it with. I know who I am and what I've got.
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my first suggestion is to look through the search engine for Beesie's posts. She is a wealth of information when it comes to DCIS. From what I have been told and what I have read DCIS is "real" cancer, it has just not become invasive as of yet. Perhaps it never would become invasive, perhaps it would in a month- perhaps-perhaps. Who wants to wait and see how it grows?
Explain to others that what you are going through is real, painful and mind altering. If DCIS was not a threatening condition, why would a surgeon, my surgeon, along with many others, allow us the choice of a BMX?
Just because we were fortunate enough to catch the disease as it started does not mean that we are not suffering or afraid of what it is doing or can do to us. Don't let anyone minimize or trivialize the way you feel.
Best of luck to you and ((hugs)).
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rn4babies, my heart goes out to you. The ladies on the thread have given you great advice and even if you need to strongly advocate with both your doctor and the insurance company it is probably worth your energy. One thing I think you mentioned is that you are young (<50) with this diagnosis and your mother and aunt both have breast cancer. You may want to look into genetics counseling and the option of testing for the BRCA genes.
I'll share my experience. My annual screening mamo showed microcalcifications in April, needle biosy showed DCIS and possible micro invasions in May, after meeting with the surgeon, I had a breast MRI, they found two additional suspicious areas, they did two more core biopsies in r and l breasts, final biopsy result was one area of DCIS, lumpectomy with clear margins in June and radiation scheduled in August. I've had a very proactive medical team, but noone asked about my family tree, turns out I have two risk factors for BRCA gene - my early diagnosis with breast cancer (I am 48) and a family tree that goes back to Eastern European (Ashkenazi) Jewish heritage on my father's side. I don't know my outcome yet as I just had blood drawn last week. I opted to put rads on hold pending the results because the treatment options/plan are quite different. I wish this had been identified before my lumpectomy. In your situation you were diagnosed young and you have a mother and aunt with bc which may make it worth looking into. Lot's for you to consider here.
Sending prayers for wisdom and peace your way
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I dop't know. I consider DCIS a real cancer or I would not have had bilateral mastectomies as well. My surgeon and oncologist never said it was not a real cancer, but could become an invasive one. Find another doctor. Doctors can be odd sometimes. And not too bright.
Agada
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Half the doctors out there graduated in the bottom half of the class.
Find one who has a clue...
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I remember prior to my biopsy the breast surgeon telling me she was certain it was just a little DCIS. As she put it, In the big pool of cancer you're just barely dipping your foot in the edge of that pool. That was not reassuring at all. Cancer is Cancer, Period. Reguardless of our stage, we all live with the fear of finding ourself in the middle of that pool one day.
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You know this is very personal. At the end of the day, whatever makes you feel better is the answer - so long as you keep up with your mammograms. I am happy that DCIS is Stage 0 and hopefully will not come back (you never know). I have also read some people in the medical community want to take the carcinoma out of the name. Even Dr. Susan Love seems to refer to it as pre-cancer in some of her articles.
If I had a mastectomy and they told me that I would not be very happy - to say the least.
I had a lumpectomy, so for my peace of mind, I don't mind thinking that it is a pre-cancer and I got it early. It really makes me feel better. I do go to all the doctors every 6 months (surgeon, radiologist, oncologist, dermotologist - which I like to go to, because if they find something it will hopefully be caught early) - I know it's a lot for something that's a pre-cancer, but it still makes me feel better thinking that. It's been a year and I still don't lilke saying that I had breast cancer, so I say I had DCIS.
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