Has anyone had this diagnosis?
Hello everyone,
I just joined this forum, and in reading your posts am so impressed with what an amazing group of wonderful people you all are, so generous and compassionate. A couple of people have suggested I ask Bessie from this forum my question so I hope she's here, but I'd also like to ask if any of you have ever had the diagnosis that I was given recently.
My pathology report stated that no malignancy was found from my lumpectomy specimens yet the diagnosis was DCIS. The pathologist noted that DCIS was selected due to the architecture of the cells. When I asked my surgeon if this could have turned into cancer he said that in 5 or 10 years it "could" have. Then offered me four follow up therapies which surprised me given that technically I didn't have a malignancy.
Has anyone encountered this sort of diagnosis? Mine was: lumpectomy August 2011, Grade 1-2, 4 cm, with clear margins, no malignancy.
Thank you all so much!
Comments
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It sounds to me like you've got one of those doctors who considers DCIS to be a pre-cancer rather than a cancer. There's definitely some controversy over that, though the majority of doctors seem to consider it to be cancer.
I think I would first find out if the doctor considers DCIS to be cancer or not. If not, then you need to decide for yourself what *you* think.
What were the suggested follow up therapies?
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I'm going to be uncharacteristically short and sweet here: girlfriend, go get yourself a new doctor.
Either he doesn't understand the issue or you don't understand what he is saying -- either one is unacceptable.
I'm bumping Beesie's explanation for you.
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Wish I had a "like" button for you LadyGrey!!!!
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Thank you all for taking the time to reply to my question. I actually have a copy of my pathology report and it clearly states more than once no malignancy found. Yes my surgeon does consider DCIS to be cancer but he was very clear to tell me that they found no cancer cells in my pathology. The surgeon and the pathologist are considering it DCIS because of certain conditions present even though no malignancy was found. The four post op therapies he explained along with the percentage of recurrence were: Mastectomy 0%, Tomoxifin 10%, Radiation 10% (tamoxifin and radiation 5%) and frequent screenings and exams only, 20%. I am going to discuss this with my doctor and get referrals to another breast specialist and oncologist/radiologist for their opinions, but just wondered if anyone else had received such a result on their path report as I didn't see it mentioned in any of the threads.
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I'm on the other side of the fence. I believe that DCIS is often overtreated.
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baywatcher, I agree with you. I think that DCIS is often overtreated. But sometimes it's undertreated. It all depends on the pathology and on the person.
A diagnosis of DCIS can range from 1mm of grade 1 DCIS to 10 cm of grade 3 DCIS with comedonecrosis. The medically required treatment for each of those diagnoses is completely different, just as the risk associated with each diagnosis is completely different (risk of recurrence, risk of invasion).
Separate from what is considered medically necessary, we each have our own personal reaction to DCIS. This can range from "I'm doing watchful waiting rather than any surgery or treatment because DCIS is a pre-cancer" to "I'm having a bilateral mastectomy because I can't live with the fear of ever having to deal with breast cancer again". The first reaction might be quite reasonable for someone with a diagnosis of 1mm of grade 1 DCIS but most would consider it to be undertreatment if the diagnosis was any amount of grade 3 DCIS with comedonecrosis. Similarly, the second reaction might be considered reasonable for someone with a diagnosis of 10 cm of grade 3 DCIS with comedonecrosis but most would consider it to be overtreatment if the diagnosis is 1mm of grade I DCIS.
I feel sad when I see over-reaction, irrationale fear and overtreatment. And I probably see that quite a bit more often than I see undertreatment. But it's the undertreatment that worries me more because in close to 6 years on this board, I've seen too many cases of undertreatment come have back to bite someone in the butt.
olivia, DCIS cells look a certain way. There can be a fine line between how ADH looks and how DCIS looks but in the end the diagnosis is either DCIS - and it's malignant - or it's ADH and it's not malignant. There is no such thing as non-malignant DCIS, at least not unless you are dealing with a doctor who doesn't consider DCIS to be cancer. The diagrams on this page http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp might help explain this.
As for what you were told about your options, the only thing that seems off is the 0% risk of recurrence if you have a mastectomy. There can never be 0% risk of recurrence. There will always be some small amount of breast tissue left after a mastectomy and with that breast tissue, you will have a risk of recurrence or the development of a new breast cancer. Most studies have shown that the recurrence rate after a mastectomy for DCIS is 1% - 2%.
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I think you should absolutely find out more about your diagnosis and seek second opinions. I saw 6 doctors before I settled on my "team." However, the fact that a medical oncologist calls DCIS pre-cancer rather than cancer doesn't, in my view, automatically make him a bad doctor. My medical oncologist is in a very serious oncology practice, he is affiliated faculty at the med schoolm, he does research. He calls DCIS pre-cancer; he also tells me I am one of his least sick patients. (I actually like hearing that). However, he treats my DCIS diagnosis as aggressively as DCIS can be. (I also like that.) I had an MRI, lumpectomy, radiation, and am now on tamoxifen. I see him every six months. He insists I have a medical breast exam every three months (because I just can't self-exam), but agreed my PCP could do that in the between visits to the med onc. He made me change the anti-depressant I was on for one that doesn't interfere with tamoxifen. My point is that if someone should see a doctor who uses the term "pre-cancer" for DCIS, that doesn't necessarily mean that doctor's treatment is different from a doctor who calls it cancer. What's important is how seriously they take it.
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I had almost the same diagnosis - Multifocal DCIS. I have young children and family history (no BRCA) and could not live with waiting for it to get invasive before treating. I had a BMX 4 weeks ago,and am 100% thrilled to be done, no further treatment. I was more scared of wht radiation, chemo and long term meds would do to me than recovering from getting my boobs removed ;-) good luck!!!
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"Yes my surgeon does consider DCIS to be cancer but he was very clear to tell me that they found no cancer cells in my pathology. The surgeon and the pathologist are considering it DCIS because of certain conditions present even though no malignancy was found."
Ok, so what were those "certain conditions" that were present?
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Thanks again, everyone, for your comments. I am off to set up some appointments. I agree with you all that whether pathology indicates malignancy or ADH, patient and doctor should treat it seriously. As you said Bessie, being mindful of over and under treatment when staring down the barrel of the breast cancer beast, is an important consideration.
One of my first requests is going to be for an MRI because if anything else is brewing in either breast that was not picked up by the mammogram, I want this information before making a final post op therapy decision. Radiation really scares me because it's a one-shot deal and it does not provide 100% protection against recurrence, in my case reducing my rate to 10% from 20%. Not to mention it can compromise the lung and surrounding area. Someone said that it is very important to get your individual risk rate and I am going to check with my surgeon to see if he calculated mine for me or gave me the general guidelines. Wishing everyone here well thanking you again for your input!
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Cycle: from my path report:
" While the differential diagnosis is between atypical ductal hyperplasia versus ductal carinoma in situ, the focal atypical ductal epithelial proliferation is consistent with ductal carcinoma in situ when placed in the context of the findings of part 1."
Part 1 states: Max dimension 4.0 cm; nuclear grade 1-2; cribriform, micropapillary, and papillary architecture with focal comedonecrosis; calcification present; no malignancy identified.
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Olivia, I deleted my question because I thought you had already posted this info and that I had missed it previously. Long story, hard to explain, but thanks for answering me.
Now that I read what the pathologist said, your doc's recommendation makes more sense to me. My sense is that what they're seeing is what's considered very high grade ADH bordering on DCIS. So there's no actual DCIS but it's so close to DCIS that they want to treat it that way.
You say "Radiation really scares me because it's a one-shot deal and it does not provide 100% protection against recurrence." Well, nothing provides 100% protection against recurrence, as Beesie points out, though I guess a double MX comes close.
Have you looked into IORT? In addition to having other benefits, I believe someone who's had IORT is still eligible for other less invasive treatments (such as another lumpectomy) if there's a recurrance, but I'm not 100% sure of this.
I believe you can get IORT at Princess Margaret Hospital in Toronto. http://www.itnonline.com/article/one-step-breast-cancer-treatment-combines-radiation-surgery
My BC was similar to yours. While mine was classified as DCIS, it was very small. To me, a full course of radiation seemed like using a cannon to kill a flea. But that was me, and others will have different comfort levels.
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Cycle, yes I did post that info but on the radiation thread before I started this thread. Cannon...flea.... exactly my thought. Agree - I think at 4 cm well established ADH in my case, and the size + comedonecrosis led to the conclusion of DCIS as well.
I've just booked my oncology radiology consultation appointment which will be followed by an appointment with my breast surgeon who is actually head of the breast clinic at the hospital you mention, so I'm in the best of hands here. I'll be asking him about MRI and ER/PR + or - as that is not on my path report. Also his nurse expects he quoted me general percentages re recurrence and I need specific even though that is only one part of the puzzle.
I can't remember Cycle, did you say you did a small series of radiation instead of the full course, or none or did the Tomox?
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Cycle - sorry see you did the IORT. The article you attached quotes my doctor!
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Olivia, like cycle-path, now that you have included that extra information from your pathology report, I too understand what your diagnosis is and why you are getting the recommendations and treatment that you are getting. And if you have Dr. McCready as your BS, you really are in the best possible hands. I had him too and when I compare the information that he provided me with to what others here say that they hear from their surgeons, I am always grateful that I lucked into requesting him.
Good luck with your next set of appointments and let us know how it goes.
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Thanks Bessie. Yes, we are very lucky to have Dr. McCready. Some people have mentioned medical oncologists and I have not met with one, nor was it suggested as I crossed Tomoxifin off the list immediately. After I meet with RO and Dr. M and my GP in Dec, I'll see if there's reason to consult an MO. Even for me, this seems like I'm obsessing beyond reason but health decisions we make like this affect the rest of our lives so I'm not rushing into anything I feel uncomfortable with.
I'll be back to let you all know what's what and meantime I look forward to reading of all your progress. Thanking you all so much and good luck to all of us.
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Olivia, I'm glad to see that Dr. McCready is your doc as well. I don't know him (I'm in the US) but from his web page he seems extremely well qualified.
If you're interested in IORT, you might want to read what's on this web site: http://www.breastcanceriort.org/
This refers to a study in which Dr. McCready apparently participated.
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Update: I had a great meeting with a Dr. Fyler at PMH in Toronto this morning. After discussion in which I asked questions that targeted my particular recurrence position and his assessment, he said he was glad I had done my research and he agreed with me that I do not need to pursue radiation therapy at this time. Apparently radiation therapy is the standard post op response for DCIS, without taking into consideration your specific history, grade, size, etc, so it's important to look into it further. In my case with fair skin that burns easily, they said I would almost definitely be raw and blistered from 16 sessions (the normal dose apparently). I asked about the 5 day course that I've heard about and that is apparently what they call a boost. I was also interested in just how much radiation the breast receives and was gold 42 greys which is the measurement the use. To put that in perspective, a chest x-ray is 1-2 greys. A mammo less than that.
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For some reason, some very fair women don't burn a lot during radiation and some darker skinned women DO.
The 5 day treatment you've heard about is not the boost. The 5 day treatment, called Partial Breast Irradiation (PBI) is sometimes referred to as Mammosite or Savi or Contura, which are the names of the device manufacturers. The Mammosite et al are balloon-like catheters that are inserted in the lumpectomy cavity, sometimes right at the end of the lumpectomy surgery, and radiation is delivered through the catheter for 5 days.
In nearly all cases, this 5 day radiation treatment is in lieu of the several week course, which is referred to as Whole Breast Irradiation (WBI).
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just fyi: I am very fair and did not burn with rads! I had 28 days and I really planned on being burnt but I didn't! I was pleasantly surprised.
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I'm glad that you had a good discussion with the Radiation Oncologist at PMH. PMH tend to be very balanced in their approach to treatment - they will recommend throwing everything at something when that's necessary, but they also are careful to not overtreat.
It appears that with your diagnosis, which is right on the edge between ADH and DCIS, they have determined that complete removal of the area of concern, with clear margins, is sufficient. That seems reasonable, since for ADH alone usually surgical removal isn't considered necessary - ADH normally is removed only so that it can be ensured that no DCIS (or anything more serious) is present.
I would recommend that you still see a Medical Oncologist. He/she can review and confirm (or disagree) with the recommendation of the RO and also discuss the benefits of Tamoxifen, as a preventative. That's not to say that Tamox will be recommended or that you will decide to take it, but the MO will be able to review the pros and cons relative to your risk level. When I saw the MO at PMH, we had a really good discussion about this. He actually recommended against Tamox for me but he gave me all the data about my risk levels and the risk of side effects from Tamox, and let me decide. I went home, did my research and came to the conclusion that I agree with the recommendation.
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Thank you all for your comments - so appreciated!
Cycle, interesting the resident said the 5-day treatment was a boost. I guess the surgeon and RO would know ahead of time that rads would be necessary in order to set up the therapy you describe.
Mom3, that is interesting about fair skin not burning. I've lived a life in sunhats and shade to avoid sunburns, and the only allergies I have are skin related ones - hives are well known to me. My mom was really raw when she had her rads but that was many years ago. They doctors did think that I probably had a high risk of experiencing burn in this case, but nice to know that possibly if I ever need rads, I may not burn.
Bessie indeed, I'm actually waiting for an MO referral, and have asked for an MRI as well. I was told by Dr. McCready's office that they don't normally test for ER/PR with DCIS. Yet everyone on this forum seems to have their values so I suppose you have all asked for them. I have asked them to run mine so I know them. For Tomox you need to be ER+ and in my case I went through menopause young, did HRT but was off it by the age of 50, had 3 kids by 30, etc. RO and I discussed that our adrenal glands and body fat store estrogen so the body can be absorbing it that way but I doubt that my body is actually producing much. That old demon, exercise, has been discussed with me - I need to do more to decrease body fat and protect my heart health. I'm more a yoga gal than runner but was out when the weather was nice doing long walks.
I was surprised to learn from the RO yesterday that my family history isn't considered that important even though my mom had bc. Hers was very aggressive and pre-menopause, and I'll always believe that the reason she died from from it was because she left it go so far before going for treatment. Since there is no other bc in my family I don't qualify for the BRAC testing. That said, we all know that 80% of women diagnosed with bc have no family history.
Good health to us all......
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"I was told by Dr. McCready's office that they don't normally test for ER/PR with DCIS"
I was told that about my initial pathology results. However, my final pathology (after surgery) contained ER/PR results. I'm guessing that might be the same with you - you'll get your details after surgery.
"Since there is no other bc in my family I don't qualify for the BRAC testing."
I had only my mother as well (post-menopause diagnosis for her), but I qualified. I think my young age at diagnosis factored in. However, I was negative. It's possible there are genetic factors that have yet to be discovered.
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xtine I had my lumpectomy in August so I was referring to the path report after that.
I think, yes, because you were pre-menopause family history is considered more critically. I was told in my early 30s that I would begin my baseline mammogram and that I'd be examined on a regular basis for any breast changes because my mother's bc was pre-menopause. They said if I developed the form of bc my mom had, it would likely show up earlier than hers did. The important lesson I learned from my mom's case was that doing everything you can to catch a cancer early is key.
What I have found weird are the cases of women who have regular check ups and mammograms and out of the blue, maybe six months after an all-clear, there is a lump that is found to be invasive bc. A friend of mine who rigorously self exams suddenly discovered a lump - it turned out to be invasive bc. This all makes me wonder just how fast aggressive breast cancers grow.
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"I was told by Dr. McCready's office that they don't normally test for ER/PR with DCIS. Yet everyone on this forum seems to have their values so I suppose you have all asked for them. I have asked them to run mine so I know them."
No. They're provided as a matter of course. Not testing for ER/PR might be a Canadian thing, but it sounds to me like it's a McCready thing. I've never ever heard of not testing for ER/PR status, even from the other Canadians here.
"For Tomox you need to be ER+ and in my case I went through menopause young, did HRT but was off it by the age of 50, had 3 kids by 30, etc. RO and I discussed that our adrenal glands and body fat store estrogen so the body can be absorbing it that way but I doubt that my body is actually producing much."
None of that apparently matters as to prescribing Tamoxifen or an AI. Even women who've had their ovaries removed are often put on an anti-estrogen. I can't say I completely understand the logic of it, but it seems to be the way of BC treatment at the present time.
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