DCIS not "real" cancer??

cycle-path

Susie, with respect: I think everyone reacts differently, and I don't think "cancer is cancer." The squamous cell skin cancers I've had are much less serious than DCIS, and DCIS is much, much less serious than Stage IV IDC. 

I realize I have a higher risk of other cancers now that I've had DCIS, and I take certain things more seriously because of it, but I really don't live in fear of another cancer. I realize many people do, and I don't think it's unreasonable, but not everyone has that reaction.   

SuziePA

It took a lot of sleepless nights to convince myself that a mastectomy was the right treatment for me, although my BS told me I really didn't have a choice given the extent of DCIS.  In fact when I got the patholgy reports from the operation and SNB, I had only DCIS and clear margins.  I thought to myself, "What if I lost my breast for nothing, and the DCIS could have just continued to lay there for years not bothering me."  Then, a couple days after the final pathology report, one of the lab people sent an e-mail to both my BS and PS telling them "a minute focus of just under 1 mm of invasive well differentiated ductal carcinoma appreared on the additional sections prepared for hormone receptor stains."  1mm today, and who knows how much by next year's mammogram?  They didn't find that tiny bit of invasive cancer on any of the mammograms, sonograms, biopsy, lumpectomy, two re-excisions and an MRI.    --All that to say that DCIS most certainly is cancer and I'm just thankful that my BS took it as seriously as he did.  That mastectomy may have saved my life or at least the side effects of chemo and radiation later on.

Almost more than hearing people say it's not cancer,  I really hate it when someone tells me it's the "good cancer."'  Geeze Louise, what are they thinking?!

Susie123

You're absolutely right SuziePa. I've always found the term "good cancer" to be a bit of an oxymoron

piano13

My experiences absolutely mirror others.  DCIS is cancer.  My largest "lumps" of it were 2.5 centimetres, or about an inch wide.  Also it was grade 3 with necrosis.  Most of that piece and the others were in the top of my breast, but the BS (does that mean breast surgeon?) said she couldn't get good margins so I'd have to have a UMX (unilateral mastec?) on that side.  AFter quite a workup of tests, and an mri-biopsy, nothing found in the other breast, but on all films has been dense, calcifications, etc. like the other one.  So I did consider a BMX but decided not to at this surgery.  My DCIS is ER/PR-, which the Center's tumor board said was atypical.

When I saw the oncologist about further treatment, he hesitated to prescribe, because of my chronic depression and a medium-severe case of fibromyalgia ( I take 80mg of Oxycontin/day for pain).  Since my treatment plan calls for an mri and mammogram in 6 mos., he felt that I had a good plan for monitoring the clear breast.  Then he did say it was my decision, but I'd been thru alot this summer (also a very badly sprained ankle that tore most of the ligaments, still have a brace on it.)  So I decided to wait for now to take tamoxifen.

Does anyone else have this type of cancer (er/pr-), and NOT taken the hormonal therapies?  The oncol also said that neither radiation nor chemo seemed appropriate, since I'd had a MX, clean margins to the chest wall, and negative sentinel nodes.

I think I've made the best decision for now, but I'm curious to hear feedback and other similar experiences with DCIS and an MX but no further treatment beyond the 6 month mammo and MRI of the clean breast.

Thanks so much for all the info in this forum!

Aggiecat52

I originally was told I had DCIS after my core biopsy. Once I had my lumpectomy the final path report showed ILC. I was shocked but I should not have been. I think they can't really tell until they take it out and analyze the tissue. For me, it meant another surgery to check sentinel nodes for cancer before I could continue my treatment. I was lucky the nodes were clear so I did not need to have chemo, just radiation.



Good luck with your surgery in September and I hope you do have only DCIS and no invasive cancer. The earlier this stuff is caught and removed, the better!



Aggiecat

1WonderWoman

RN: I concur that you need a new doc/2nd opinion.  This surgeon sounds a bit daft!  It was my understanding that IDC was, at one time, DCIS!!!!!   I don't think one needs to be a psychic friend to know, left unattended to, the maturation cycle of DCIS!!!  Sounds rather precarious to even suggest taking it lightly because it is not in it's most lethal form YET!  

Best of luck to you and I don't care if you live in Taiwan, get yourself to Hong Kong and get a 2nd opinion!  

karla2011

According to my Onc Dr. I asked this very question last Monday and he said without a doubt, triple negative (that is, Her2/neu ER/PR) negative is the worst.  I was confused about all this as well.  Newly diagnosed.

beacon800

Your doc may not be very tactful, but maybe he was trying to help you feel calmer, hard to say.



From everything I understand DCIS is cancer, but it is not invasive at the moment. It's the "at the moment" stuff that gets me worried! For mine, LCIS, I still am not totally sure if that is or is not cancer. People ask if I had breast cancer and I am not quite sure the answer. I say what makes me feel best, which is, no cancer, just a dangerous form of atypia. Who knows!



If you have any room in your insurance have the MRI! Also, if possible, get a surgeon who only does breast oncology surgery, not general plus breast. Mine does breast cancer surgery only, nothing else and has done this week in, week out for 20yrs. Has seen it all! I had BMX with no pain, no problems, no loss of motion, really good outcome and I give him the credit.

lbarbados

Hi,

I agree with just about everything folks have said!  I just went through a UNI MX last month for DCIS, which had a "strong suspicion" of microinvasion.  Thankfully, no invasive cancer was found on the final pathology, but due to my mother's stage III IDC, I am very glad that I did the MX.  I don't think that the two top Breast Surgeons I consulted would have recommended an MX if it wasn't "real" cancer, or something to not to be taken very seriously. My thoughts are with you, rn4babies, this is a tough thing to sort out!

piano13- I have the same diagnosis as you, DCIS that is ER-/PR-.  I am going to see an onc. for the first time tomorrow, I will let you know what she says and recommends for me.

--lisa 

BetsyR

Karla2011 - I also was diagnosed with DCIS, ER-/PR-. However, my area was very small (confirmed by MRI) and was successfully removed with one lumpectomy with clear margins.  My surgeon told me I 'hit a home run', in regards to the successful surgery and the fact that, being ER-/PR-, I would not need hormonal treatment. I just completed 33 rads treatments yesterday, excited to be DONE. 

I was grade 3 which I know increases risk of recurrence, but I had not heard from anyone that ER-/PR- was worse than +. 

BetsyR

Now I've become curious on the ER-/PR- issue.  My surgeon did not tell me if I was her- so I'll have ask in my next followup. Seems the issue here is that fewer options are available for treating the cancer if it becomes invasive. Either way for me, I consider myself fortunate for discovering this at an easily treatable stage, will choose not to worry about this, be vigilant about my follow-ups and get on with my life.

julianna51

Stepping into this conversation late but....you bet DCIS is cancer.   Mine already had some microinvasions, luckily very small.   And...I'm going through 35 radiation treatments - they don't treat non-cancer that way!    Everyone have a beautiful day because we are fortunate that DCIS is the cancer we had and we are all blessed that no matter what kind of BC we have they have more and more weapons to fight it successfully.

lbarbados

Okay, piano13, BetsyR, and all other ER-/ PR- gals,

I had my appointment with an oncologist today.  She said I don't really have to worry about the ER-/ PR- status of my DCIS because I had no sign of invasive cancer in my final pathology.  She said ER-/PR- is the more aggressive form of cancer( compared to ER+/ PR+) , however, because I had pure DCIS --which, by the way, she called "Pre-Cancer" (her words, not mine)-- that the hormone status really didn't apply.

Also, no chemo( due to pure DCIS), no rads( due to clear margins) for me.  She said Tamoxifen might be indicated to prevent occurrence of a completely NEW cancer in my left breast--of course it would not prevent a recurrence of the DCIS( as it's ER-/ PR-).  We agreed Tamoxifen isn't the best idea for me as I have endometriosis, which already has an increased risk of uterine cancer.

I feel a little nervous not doing ANYTHING...but I guess I should just be grateful ( and vigilant)!

Best to all,

Lisa 

mom2one

I am ER/PR- and HER2+ grade 3.  My DCIS was stage 1 due to two small areas of microinvasion (together they do not equal 1 mm).  I was seen locally and at Duke University and had John Hopkins review my records.  All the oncologists agree that no further treatment is necessary after my BMX.  I had a lumpectomy in the cancerous breast but did not get clear margins.  I then went through another lumpectomy but did not get clear margins.  It was then I decided to have the BMX with immediate reconstruction.  After everything I can definitely say DCIS is cancer.  It is just a very early form.  While I am very lucky to need no further treatment I feel that I definitely lost my breasts to cancer. 

lbarbados

Mom2one--  Thank you for sharing your info.  Yes, I'm am not about to tell anyone that I lost a breast to "pre cancer" or "almost cancer!"  I was just lucky, like you, that the cancer was caught early.

Best wishes... 

DeeLJ

I don't know if you've seen the thread that I started "some thoughts about DCIS" but we discussed this very issue here...is it 'real', are we 'survivors' etc...its a wonderful thread and I encourage you to look at it.

I struggled with the same questions/answers. All my docs told me that DCIS is cancer, true it was small -- but it was there. I opted for the most aggressive treatment I could do, which was a bmx. They found tons of hyperplasia that was not present in my digital mammo in April when this whole thing started. God only knows what that would have turned into later, so I know I did the right thing.

We have early cancer, non-invasive cancer, ductal carcinoma in situ...I think sometimes docs may try to downplay the c-word, maybe in a misguided attempt to offer comfort or support (it's nurses who learn the technique of therapeutic communication, not doctors) but the truth is that it is what it is. 

RetiredLibby

I am getting ready to have a BMX with immediate DIEP recon next Tuesday to treat my recurrent DCIS.  I was first dx 4 years ago.  I was having a conversation with the breast cancer nurse navigator at the hospital the other day, and she called DCIS "pre-cancer" (she is a cancer survivor herself0.  I corrected her to say, "pre-invasive cancer" and she said, "Well, I tell people it is pre-cancer but we treat it like cancer."  I said, "It is cancer.  Period.  It is in the name -- ductal carcinoma in situ -- and in the cell formation.  It is cancer.  It is pre-invasive, but it is pretty clear that if left alone, some DCIS will evolve into invasive cancer."  I was pretty ticked off, and I am sure it showed in my voice.  I didn't have a lumpectomy, a re-excision, 28 regular rads and 8 boosts, 3-1/2 years of tamoxifent and now a BMX because of "pre"cancer.  Grrrr.

L

tacichon

I can't blame you HappyLibby..I would have felt the same way. My Dr did not sugar coat anything she told me it was cancer, I was just lucky they caught it early before it got worse.. 

Terri

mom3band1g

happylibby - I think I would have told her I was going to cancel my  surgery then....why would one want to lose their breast to "pre-cancer".  Sheesh.  I hate it when people say it isn't cancer.

louishenry

I have been reading this thread with interest.  I was dx 4 years ago and my oncologist called my pathology "pre-cancer". He said that even though I had DCIS, my cells looked similar to ADH which is a pre-cancer.  I then asked him why some call it early cancer. He said  that not all DCIS is created equal. Some very large, grade 3 DCIS looks very similar to invasive cancer.  He calls that pathology "pre-invasive cancer."  That made sense to me. I don't talk about my DCIS much anymore, but when I do, I generally call it pre-cancer.

cinnamonsmiles

Hi HappLibby, I too had a medical professional, a new ob/gyn, who told me I had pre-cancer. She sat up in her chair with attitude when she said it too. I told her the info on it and she said NO, you had PRECANCER. I was so pissed. I stood up, told her if that was her few on DCIS, I could not have her as a dr and she was fired. It still makes me want to take a xanax when I think about. It has been a couple months since I had seen her and I got the name of her boss to report her behavior with me. She was totally in the wrong to diagnose me like that.  And so was your nurse. It is like sucha blow to hear that after all we've gone through. I was sitting there with a BMX with node dissection and in tremendous amounts of pain from nerve damage and and scar tissue adhesions from the Jan. 2011 surgery and that was june!!

cycle-path

Louishenry -- I think that's actually a pretty good point. Although I come down on the side of calling DCIS cancer, I can see that, say, a 5 mm grade 1 DCIS tumor is not the same as a 2 cm grade 3 tumor. And that calling the former "pre-cancer" is not unreasonable, particularly when compared to the latter.

However, I think we have the right to refer to what happened to us in any way we please. If you want to call it pre-cancer, that's your right. The one thing that bothers me is when others think they can tell us what to call it. It's mine, and I'm naming it, dammit. 

3girls4me

I still hear the words in my head...word for word...from my doctor calling me on June 12, 2007.   "We actually found a very low grade CANCER".   My doctor said CANCER.  He did not say PRE-CANCER.  So if I went through all that I did for DCIS (bilateral mastectomies, reconstruction, staph infection from the hospital. C.Diff from the medicine for the staph infection) not to mention the psychological trauma I'm living with from not having "real breasts" anymore for a "pre cancer"... then so be it.   Whatever it is pre-cancer or real cancer.  There is still the word "cancer" in both those phrases....and I wouldn't take chances on that.    Would you get in a plane that "might crash"???  

jbennett38

I'm new to this site and discussion.  I was diagnosed with DCIS in April and had a BMX on July 14, 2011.  My BS was very clear with me that what I had was CANCER.  She will not even recommend web sites or reading material that refers to DCIS as pre-cancer.  This diagnosis has turned my life upside down but I am thankful that it was non-invasive.  No chemo or radiation is necessary after the MX.  None the less, I am a cancer survivor!!

satisfied_survivor

Pre cancer is only a euphemism for early cancer....if left untreated it will become  invasive cancer....it is just a question of when and no mortal can predict that.  Does anyone really want to wait for that to happen????  Certainly not I.  I was diagnosed with 0 stage Paget's of the nipple and areloa and DCIS.  I opted for double mastectomy with immediate reconstruction.  That will be 2 years ago in Oct.  I am grateful that my doctors didn't sugar coat it.  Yes, I could have opted for lumpectomy, but I decided on BMX.  I reccently consulted a new oncologist and her remarks to me were "You chose the best possible treatment for your cancer."  Luckily since it was triple negative I have not had to do any post MX treatment.  However, I now know that current therapies  are often not an  effective way to attack triple negative  invasive cancers which makes me very glad I made the choice I did.  DCIS is cancer.....don't let anyone tell you otherwise.  It may not have spread,,,,but it would only be a matter of time. 

echosg

As a DCIS gal, I can tell you that I was ignored by all my doctors.  Both my onc and gyn told me repeatedly that, technically, I didn't really have cancer.  Yet, I still had to go through cancer treatment.

It took me a long time to understand this.

I think it all depends on how your doctor defines cancer. Cancer has the ability to invade other organs and spread. DCIS does not. This is where the confusion comes in.

Before DCIS can break through the ducts, it has to have a DNA change.  Not all DCIS will be able to create this change in DNA.  Because we lack the ability to distinguish which DCIS has the potential to change, we treat all of it the same.

By the way, not all invasive cancers have the ability to become metastatic.  Even if it is in the lymph nodes, that still doesn't mean it can create the DNA change needed to invade other organs.

Cancer is a tricky beast. 

MimiDPL

This makes me furious!  I survived Hodgkins disease in 1981 with mega doses of Cobalt radiation.  When I had nipple symptoms in the summer of 2006, I was told not to worry, no cancer.  I finally insisted on a biopsy that yielded the result of Paget's cells.  Subsequentlly had 2 lumpectomies with no clear margins, so had a mastectomy for minimally invasive DCIS.  No follow up but blood and exams.  Fall of 2008, radiologist detected atypical lobular hyperplasia in the left breast and recomended prophylactic mastectomy.  Surgeon told me I absolutely did not need the surgery, and that what I had in '06 was barely cancer anyway.  I had the second mastectomy.  Now I have found a hard spot near the scars from the first mastectomy and node biopsy.... guess what - cancer.  I am having surgery on Friday to remove the tumor and any affected nodes, and then a year of chemo/drug therapy.  And to think, I "barely had cancer".  When will health care professionals learn to listen to and be respectful of their patients.  The double mastectomy was certainly real to me!  I feel for you with the insensitivity of the doc.

dreaming

In situ means in place, contained. I do not like when doctors are cavalier about any cancer, for the person that is diagnosed at the moment it is enough that is cancer.

I think that before they did not take seriesly  DCIS but now with some recurrences, have changed the way is treated or expectations.

I would tell the doctor how I feel. When in January I was diagnosed with basal cell carcinoma, the oncologist told me "It is a good cancer"I was furious," OK I told  him , it might not kill me but I do not live in a cave, my scar is on my face and is ugly and large, I work and it might not be the last one I get."

To me  it is another cancer and that is not good news. I would never dream making a caste system for cancer patients with any type of cancer.