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Does DCIS ever spread?

I had DCIS breast Cancer in july 99, had a mastecomy, no treatment required because DCIS doesn't generally spread and my nodes were reported clear. I had also had implant reconstruction. A couple of months after my reconstruction I started feeling pain in my armpit then out to my scapula region. I've told all my doctors.The pain is now constant and very pronounced. They sonogramed the armpit and 3 nodes showed. Then I had a bone scan and there was abnormal uptake in sternum & clavicle & neck. Then plain film xrays which only showed probable arthritis in neck. Then a CAT scan which showed 3 spots on my lung, then a PET scan which showed abnormal uptake in sternum, clavicle, into axilla and neck and one spot on liver. The Dr.s don't know what's up because I had DCIS and they keep saying it's not supposed to spread. Meanwhile many months have gone by taking all these tests, still have pain and no answers. Now they want to do an MRI and a biopsy. Have there been known cases od DCIS to metastisize?
4 Responses
Avatar universal
Dear Debster:  By definition DCIS is not malignant.  It is a
Avatar universal

Debster,

I'm very sorry to hear of your new developments.  I learned after having 3 excissionals in 14 months that pathologists' readings are often just opinions.

I was first told that my third lump was cancerous, but that they were unable to say what kind of cancer it was without further staining... The surgeon recommended mastectomy.  The pathologist (I'm with an HMO) passed around my specimens to others he thought were more expert... who said it looked like it was maybe now benign, but maybe not... but the good news was it was not invasive yet, whatever it was.  Then they just said it was benign.    I was then advised (and the original pathologist agreed) to send the specimen to the Armed Forces institutes of Pathology.  Their report was very precise:  Atypical Intraductal Hyperplasia of the Aprocine type with aspects of DCIS but not yet fully formed...  AFIP recommended more surgery if the margins were not "clean."

After the AFIP report, the HMO doctors THEN said I needed constant monitoring (every 4 months.)  Before the AFIP report, "come back in a year."

So, the bottom line it was not malignant, BUT it was on its way... (one doctor friend said two months from full blown.)

I'm telling you my story because I learned that there are no clear cut readings.  I also learned that it is VERY usual to get second pathologies.  The readings between the two organizations:  three at the HMO and one at the AFIP were markedly different.

I also learned that they don't look at every cell.  A cross section.

Anyway, if you need to proceed with further biopsies, you may want to keep in mind the AFIP (purportedly one of the best labs in the country) for second opinions.  They only receive specimens from pathologists... and the cost is not excessive.

Also, my lumps were always painful, and they always said that's a "good sign" because normally malignant lumps generate no pain.  So I'm very suspect when medical professionals just throw you into a category of what's normal... Normal just means a statistical count.  Not ALL.  We're all individuals.  Follow your instincts -- you know your body best.

Best of luck and strength,

Christine




AFIP
Avatar universal
It was good that Christine got another opinion, and the Armed Forces (Air Force?) Path lab was a great place to get it. In my case, I had three pathologists (from different labs)examine the tissue taken from my excisional biopsy. But I joined this discussion because I read that Debster had a mastectomy for DCIS. I am concerned that other women reading this may think that a diagnosis of DCIS means mastectomy. While I am not a health professional, I have done extensive research due to my own breast disease, and want to assure women that an initial diagnosis of Ductal Carcinoma In-Situ (DCIS) does not necessarily equal mastectomy. All women who have these questions, and all women should have this information before they need it, should read Dr. Susan Love's BREAST BOOK, still the definitive medical book on breast cancer. Also, a book I use as my "bible" is Susun S. Weed's book, BREAST CANCER? BREAST HEALTH! THE WISE WOMAN WAY. While I'm not wild about everything in it (we take what we need, don't we!), I have found it enormously comforting, and helpful. Because I had known about herb use for years, I use some of the herbs discussed in the book, although I tend to buy ready-made capsules and not "brew my own". But the important thing is to investigate. Be courteous, but don't worry about being seen as "not nice", or a "bad patient", and get the information you need. Just so you have an idea how pathology reports vary, I will share mine with you. You should know that I have never had a positve mammogram, and that malignant cells were only found on the initial aspiration biopsy on a painful lump. The excisional biopsy revealed: Pathologist #1: Atypical lobular hyperplasia with duct involvement. Chronic periductal mastitis with duct ectasia. Moderate ductal hyperplasia, fibrocystic changes, apocrine metaplasia,and microcalcification. As an incidental finding,
atypical lobular hyperplasia is seen in multiple sections. No invasive carcinoma is identified.
Pathologist #2: Extensive atypical ductal hyperplasia of micropapillary pattern with involvement of large ducts just meeting minimal criteria for micropapillary ductal carincoma in-situ, largely because of extensiveness. Although any individual
space does not have fully developed criteria for ductal carcinoma in situ, we believe that the extensiveness of more than a centimeter or so in this biopsy material makes it likely that similar changes may be present in adjacent tissues. A wider excision based on segmental anatomy is suggested. This abundant
lymphocytic infiltrate and periductal stromal changes may indicate that there is limited disease in the remainder of the breast.
Pathologist #3: There is widespread involvement of both ducts and lobules by a proliferative micropapillary process. This case has been seen in consultation by Dr. #2, who reported it as micropapillary intraductal carcinoma with minimal criteria. I cannot argue with that interpretation, although I would have been personally on the markedly atypical ductal hyperplasia side of the borderline. Lobular carcinoma in-situ is also present.

The only "treatment" I had was the one excisional biopsy.
Because the excisional did not identify malignant cells, everything going on in my breast has been deemed "pre-cancer", a term I find utterly useless, since pre-cancerous cells, and even cancerous cells can and do exist in the body without ever "doing" anything serious, and, in a practical way, puts you out of the women-with-breast-cancer loop, which may be good or bad depending how you look at it. My feeling is, "Cancerous" or "Non-Cancerous". I know with all my being that anxiety and fear do as much to promote the disease process as anything else. And, one of the biggest problems for us all is finding information and medical support for anything other than definitive breast cancer. Even public health information forums seem to side-step "pre-cancer" findings. Another area which must be addressed is surgery-related aches, pains, pulls, and what-have-you which may last years, even in the case of minor surgery. When I have pain, I am torn between "Does this represent a cellular change...is it CANCER?", and, the nonchalant, "Naw, it's probably just from the surgery". Even medical practitioners may only be able to take an educated guess at the answer. So, again, Yes. Do get as many opinions as you need to. Do your research. Ask questions. Take a tape recorder with you to appointments. (This was of great help to me. I found my questions were always presented more clearly, and, no matter how high my anxiety level, I could listen clearly to the responses). I am grateful for this forum and for all those women who offer their experiences in it. This is a tough road, but, speaking for myself, I need contact with tough women who ask tough questions.
Avatar universal
A related discussion, borderline adh/dcis was started.
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