Recurrence far worse after DCIS

BarredOwl

Regarding the side discussion of SNB:

I agree that with apparently pure DCIS diagnosed by minimally invasive biopsy, sentinel node biopsy (SNB) is typically recommended to patients undergoing mastectomy. In contrast, in accordance with guidelines from both NCCN and ASCO, SNB is not typically recommended to such patients if they are undergoing breast conserving treatment (lumpectomy).

Unfortunately, some hospitals and doctors have been slower than others to update their practices regarding sentinel node biopsy (SNB) for apparently pure DCIS (any grade, with no evidence of invasion) when treated by breast conserving surgery (lumpectomy). For more, see my discussion with JACTsMom here (under the heading "Additional Information") which is still current:

https://community.breastcancer.org/forum/68/topics/841082?page=1#post_4634605

BarredOwl

leftduetostupidmods

Yes, that is pretty much what they do. Myself I'd rather have it done. It's not like it's going to hurt any extra, or increase more than 0.5% the lymphedema risk, and it would give me the peace of mind knowing that it doesn't show invasion.

Think about how many members on this site were diagnosed with DCIS, no SNB, and a few months/years later they were found to have stage IV. Remember this horrible disease doesn't give you any guarantees. DCIS diagnosis is not 100% it will not come back or it did not travel. If one single cell traveled that is it.

I personally would want to be better safe than sorry when it comes to my own life span, especially with a procedure that is so minimal.

hsant

once again, DCIS = non invasive cancer. Any other diagnosis, such as micro invasion or a borderline micro invasion is completely different, because that takes you from a stage 0 to a stage 1.

Beesie

"Think about how many members on this site were diagnosed with DCIS, no SNB, and a few months/years later, they were found to have Stage IV."

That would be virtually none.

I've been on this board for 11 years, and I've spent most of my time in the DCIS forum and following women who've been diagnosed with DCIS. I can't think of a single one who was diagnosed Stage IV within months of a DCIS (pathological stage) diagnosis. And I can only think of a few who were diagnosed Stage IV within years of a DCIS diagnosis - usually many years, and almost always after an invasive recurrence.

I have however seen dozens of women who have posted that they had "DCIS" when in fact they had a combination of DCIS and invasive cancer. Maybe the preliminary biopsy diagnosis was DCIS but then invasive cancer was found during surgery, or maybe the patient picked up on the term "DCIS" and missed the reference to the invasive cancer. It happens more than you'd think. Some of these women unfortunately have moved on to become Stage IV, but they never really started with a diagnosis of DCIS.

As hsant said, DCIS is a non-invasive cancer. This means that DCIS cells are confined to the milk ducts of the breast and cannot travel to the nodes or enter the bloodstream. As BarredOwl pointed out, NCCN and ASCO guidelines are clear in saying that a sentinel node biopsy is not required or advised for those who have a lumpectomy for DCIS.

tiff, I am so sorry that you had a recurrence after your BMX.

BarredOwl

As explained in my post above and link provided therein, new patients should understand that clinical guidelines from ASCO and NCCN do not generally recommend SNB for apparently pure DCIS diagnosed by minimally-invasive biopsy, when treated with breast conserving therapy (lumpectomy).

I would add the following:

Re: "It's not like it's going to hurt any extra, or increase more than 0.5% the lymphedema risk . . "

Sentinel node biopsy is not without harms (e.g., paresthesias, risk of lymphedema), as noted in this abstract:

http://meetinglibrary.asco.org/content/100421-114

"SLNB can be performed as a second procedure for those treated with BCS [breast-conserving surgery] and identified with invasive cancer, thereby avoiding unnecessary risk of significant morbidity. Breast programs should review their practices to curtail the use of unnecessary surgery for women with DCIS."

The 2014 ASCO guideline also acknowledges the risk of long-term complications:

http://jco.ascopubs.org/content/32/13/1365.full.pdf

"For women with a minimally invasive biopsy showing [pure] DCIS who are being treated with BCS [lumpectomy], there is no evidence to support performing SNB (see Recommendation 4.3). Performing SNB places patients at risk for long-term complications including permanent lymphedema. SNB may be performed as a separate second procedure in the women in whom invasive cancer is found (reported in 10% to 20% of cases overall, approximately half of which are limited to microinvasive cancer)."

Estimates of the incidence of lymphedema following sentinal node biopsy ("SNB") vary between studies, depending on a variety of factors, such as the length of follow-up. See for example, References 7-12 cited in this paper which are said to report incidences of lymphedema ranging from 3.5% to as high as 11% for SNB.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4011490/pdf/nihms563666.pdf

Re: ". . . and it would give me the peace of mind knowing that it doesn't show invasion."

Many small invasive cancers do not spread to the lymph nodes. Thus, having a sentinel node biopsy is not a reliable method of excluding the possibility of undetected invasive disease.

BarredOwl

leftduetostupidmods

Beesie,

That is exactly the point. DCIS diagnosed from biopsy. The talk is about having SNB when having DCIS tumor removed or not. How many had DCIS initial diagnosis at biopsy and then - well, it wasn't just that?

As for how many, it's simple. Head over to the Stage IV board to one of the longer threads, and start looking at signatures. I'm sure you'll find quite a few.

Beesie

"How many had DCIS initial diagnosis at biopsy and then - well, it wasn't just that?"

About 20% of women initially diagnosed with DCIS based on a biopsy end up with a diagnosis of invasive cancer. In about 80% of those cases, the final diagnosis is a microinvasion (as I had) or a very small invasive cancer, with no nodal involvement - Stage IA.

If 100 women are having a lumpectomy after a preliminary (needle biopsy) diagnosis of DCIS, there is absolutely no value in having all 100 of these women undergo an SNB at the time of their surgery. For the 20 women who turn out to be part of that 20% group, there is no problem in having the SNB as a quick second surgery once the final pathology is in and it's been confirmed that they do in fact have some invasive cancer in with the DCIS. This is the medically recommended approach, as per the links that BarredOwl has provided. For the other 80 women, the 80% who end up with a final diagnosis of Stage 0 DCIS, an SNB would have been a completely unnecessary surgical procedure that exposes them to a more painful surgery, a longer recovery time, and an increased risk of lymphedema for the rest of their lives.

To your point, however, since an SNB is more difficult to do after a mastectomy, generally it's recommended that an SNB be done at the time of the mastectomy surgery for anyone with a preliminary DCIS diagnosis who is undergoing a MX. But even this is changing, thanks to the new method developed by Pink Lotus, which allows the sentinel node(s) to be identified during surgery, but not removed until later, should the pathology show the presence of invasive cancer.

As for the signature lines in the Stage IV forum, as I mentioned earlier, you have to be careful about that. Many of the women who say that they had an initial diagnosis of DCIS in fact actually had invasive cancer (clear give-aways on this are if they were anything but Stage 0 or if they had chemo or Herceptin) or had a subsequent invasive recurrence.

hsant

Thank you Beesie and Barred Owl for your well informed explanation with respect to DCIS and a SNB.

I didn't know that a SNB is difficult after one has a mastectomy. Interesting. I opted for a BMX, because of strong family history. I don't know if my BS would've recommended a SNB if I were diagnosed with pure DCIS.

IDC was found in pathology in the form of. 1.5 cm tumor, so I did require a second surgery to clear the margins. My question is for women who opt for lumpectomy, is it standard to get an ultra sound or MRI before surgery?

leftduetostupidmods

By my knowledge once you get a BiRads 5 it's pretty standard to get that before surgery no matter the surgery. The problem is that the MRI gives a lot of false positives.

SusanaQ

Tiff,

I'm late to read this thread....what an ordeal for you. Quick about me: 2002 found lump, DCIS, left mastectomy, no further treatment. June 2016: mammogram lead to biopsy to right mastectomy, 1.3 cm with macrometasis (2.1mm) in sentinel node. Sidebar: misdiagnosed demoid cyst in 2007 with left oophrectomy. July 2016 BRCA 2 positive, so I'm scheduled for right oophrectomy after I heal from chemo and radiation. I'm now 53.

Have you had BRCA test? For me, this made the decision for oophrectomy an easy decision. Wish I would've had BRCA test after DCIS in 2002 and would've had prophylactic mastectomy and oophrectomy 10 years earlier. Oh well, 20/20 hindsight.

You sound like a tough lady and I'm impressed with how well informed you are. Keep up the strong work.

clarrn

Hi Tiff. I am on the 10 year tamoxifen train BUT it isn't as bad as I had imagined. Aches and pains in the morning and hot flashes but not anything like my chemopause. Also, my doctor is letting me take a break (2 years in) to try to make a baby which is now I will resume tamoxifen for the 8 remaining years after baby (if we are that kucky to conceive). I think you have nothing to lose by trying the tamoxifen first. You can always go off it if you hate it. Good luck with a very hard decision!

I2y20102015

Thank you SusanaQ and Clarrn. I have decided to try the Tamoxifen to see how it goes. Barring any reactions or horrible side effects I will do my very best to stay on a schedule and take them. The cyst that was found will be monitored and we will make a decision as far as a course of action on the next follow-up. I've been trying to be more objective and lass rebellious and angry as of late! Ha! We'll see how that goes.

Fearless59

Hi, girls,

I had DCIS, huge lump, and SNB with my mastectomy and was very grateful for that, because 5mm of IDC was found in one of 4 sentinal nodes, totally out of the blue!

I know this discussion petered out last fall, but cannot help noticing how much recurrence is happening to so many of you. I am very sorry to hear about this heartbreak. I am a first timer trying to make decisions about whether chemo and radiation are needed for me. I am being told these will "make sure we get all of it," but it appears that they are both unreliable.

I heard from a friend of a friend, about some special water with high oxygen content, in hungary, that you bathe in and drink as a 6-week treatment after chemo and radiation tx, and it supposely knocks out the recurrence. I might look into it, the idc was so small I hate to mess with healthy tissues with such rigorous treatments.

Alisoncarol

Hi,

New to panel as of yesterday after having pain in my armpit for a few days and feeling a lump yesterday afternoon. I had dmx in 2015 because of widespread high grade dcis. I also felt a small teeny tiny lump on my breast,but for some reason I am convincing myself that is scar tissue. I am planning on calling breast surgeon Monday after touching the lump in my armpit about 40,000 more times hoping it will be gone on Monday! I guess I am just shocked reading about all of the recurrences after BMX. I feel like I am being overly ridiculous about calling but I guess not after reading the posts....

Mimi68

Hello ladies and thank you for this thread. I am an RN of 23 Years, mostly trauma so I am NOT an Oncology nurse. I am just so frustrated at the lack of attention given to those of us with the most risky DCIS-high grade, comedo necrosis ER-/PR-. I did the bilateral MX, genetics are negative but was told no Tamoxifen since negative ER/PR. I'm 49 and peri menopausal. They did an US after my MX. I don't see a Gyn or a MO. I'm wondering if they would reccomend an oopheretomy and perhaps other estrogen suppressing drug since ER/PR- DCIS can come back as ER+. Who would you see first in consult consult and what your thoughts?

Mimi

sbelizabeth

Without a compelling family history or personal genetic mutations, I would doubt if the risk of preventive tamoxifen or an aromatase inhibitor would be worth any potential benefits. I do understand the desire to do whatever it takes, though, to kill the beast or keep it locked up forever.