DCIS Recurrence or another cancer or not

SheryS21

Please share with me.

Six months ago I was diagnosed with grade 3 DCIS and I had a lumpectomy followed by radiation. The size of the DCIS was not small. It was around 4cm.

Can you please share with me if you had a grade 3 (big tumor) DCIS and had a recurrence.

And if so after how long was the recurrence? And was it invasive or another DCIS?

Or did you get another cancer in another place.

Or if you Never had a recurrence or another cancer.

I read that usually grade 3 DCIS especially with a big tumor recur in the first five years and the first diagnosis. I know everybody is different but please share with me your experiences.

Thank you

MinusTwo

SS21 - I'm hesitant to share w/o knowing more of your statistics. Can you go to My Profile and fill in your stats? If you're ER/PR positive or HER2 negative, we are definitely not on the same page.

Sitti

I'm interested in this answer also. I was recently diagnosed with grade 3 DCIS and had a lumpectomy 1 1/2 weeks ago. One of the margins was close so they need to go back in and re-excise. What was originally thought to be 2.5 cm ended up 4.4 cm and after reading more information I am wondering if lumpectomy w/radiation is enough. Given the size and grade and other variables, on the Van Nuys Prognostic Index, I scored 10, which suggest a mx may be the option. I don't want to go through radiation, have a reoccurence and then have a mx. Thoughts?

I don't have all the other information from pathology yet, still waiting on that.

MinusTwo

Unlike both of you, I had a BMX for DCIS. The BS got good, clean margins. The sentinel nodes were negative. I was ER/PR negative. So, no further treatment. I was elated to skip rads, one of the reasons I chose mastectomy in the first place.

Unfortunately some micro mets must have escaped because i had a recurrence to a lymph node by my collar bone in two years. None of my excellent docs could believe it. Or maybe it was there before & hiding - who knows. This time they ran it for HER2, which they don't usually do with DCIS. I was still ER/PR negative but it came back as IDC and HER2+. Needless to say I had chemo, then surgery, then more chemo, then rads.

CAD - are you hormone positive? That might make a difference in your treatment options down the road. Can you push to get them to test for HER2? Did they do any genetic testing on either of you? I agree, it's a hard decision. I'll keep you in my thoughts.

Sitti

MinusTwo, I was not hormone positive on the original biopsy. I am waiting on the remainder of the pathology from the lumpectomy. I see a special studies was requested, says: Pending (ER) to be reported. Would the pending (ER) study be what you are asking if they tested for? I did have the genetic testing, which was negative. I'm sorry to hear you had a reccurence, hope you are doing well.

MinusTwo

CAD - yes it will make a difference to the treatment if you are ER positive or negative and PR pos or neg. The same for HER2 - if you are + or neg, but like I mentioned, they don't usually test for this with DCIS. I wonder if you could push for it? Sometimes the HER2 comes back 'equivocal' and they'll send it back for another test.

SheryS21

I too had genetic testing and came out negative.

My problem now is that my doctor wants to put me on Tamoxifen and so my psychiatrist is switching my antidepressants to other safer meds that can work with tamoxifen. And even though I'm doing that I'm still very hesitant to take it (even after they control my depression with the new meds).

CAD I'm so sorry that you had to go through allthis. And I didn't know that they can test HER2 with DCIS. I wish they had it tested on my tumor.

Bluebirdgirl

Hi, I had pure dcis and it was ER and PR positive, but they did not test for HER2. What would be the significance if it were HER2 positive? I am wondering if I should ask to have it retested for that. Thanks

Bluebirdgirl

I found this article from 2013. Not sure I fully understand it though.

https://www.ncbi.nlm.nih.gov/pubmed/24202240

SheryS21

I found this website. It says that

"According to the results of a study published in Cancer Epidemiology, Biomarkers & Prevention, women with ductal carcinoma in situ (DCIS) that has high levels of the HER2 protein are several times more likely than other women with DCIS to have invasive breast cancer".

http://news.cancerconnect.com/her2-overexpression-...

Hope this helps.

MTwoman

bluebirdgirl,

the citation you included is from a study of over 1,400 women with HER2+ DCIS. They randomized adding Herceptin to the standard care of lumpectomy and radiation to see if it performed better. This article doesn't provide findings, just clarifies how they defined HER2 positivity and how they tested for it.

Although HER2 overexpression does seem to drive aggression, it also now means there is a targeted treatment option (Herceptin) that is being explored (and I believe some women on these boards with DCIS have used it).

The following link is for an article which offers an index based on breast conserving surgery (bcs) vs lx (lumpectomy) and several other criteria: "A prognostic index for locoregional recurrence after neoadjuvant chemotherapy"

https://www.ncbi.nlm.nih.gov/pubmed/27433280

Beesie

If I am reading it correctly, the study noted above from SS21 is saying that those who have HER2+ DCIS are more likely to be found, upon final surgery and pathology, to also have some invasive cancer. This isn't overly surprising, since HER2+ DCIS tends to be grade 3, which is also associated with higher rates of invasion. But this says nothing about what it means to have Stage 0 DCIS that is HER2+ (i.e. pure DCIS).

The research on that question is very muddled, with some studies suggesting a worse long term prognosis for those who have HER2+ DCIS, some studies suggesting a better prognosis, and most studies finding no difference in prognosis. This article summarizes this well, although it was published in 2011 and therefore does not include the most recent research: Biological markers in DCIS and Risk of Breast Recurrence. http://www.jcancer.org/v02p0232.htm

And here is a more recent study which had long term follow-up and found that those with HER2+ DCIS may be less likely over the long term to develop invasive cancer:

The prognostic role of HER2 expression in ductal breast carcinoma in situ (DCIS). https://bmccancer.biomedcentral.com/articles/10.11...

Another study done since the 2011 report, this one inconclusive since none of the HER2+ DCIS patients had a recurrence over the course of the study:

http://www.medscape.com/viewarticle/734028

All that to say, be careful to not draw conclusions from a single study.

Edited to add: MTwoman, Herceptin is not approved for DCIS. It has only been used by a handful of women as part of a clinical trial.

BarredOwl

I also write regarding HER2 testing in patients who are known to have pure DCIS following surgical treatment.

Pure DCIS can be either HER2-positive or HER2-negative.

However, pure DCIS, which is non-invasive, is not treated with chemotherapy or HER2-targeted therapy in current clinical practice, even when it is known to be HER2-positive.

The use of HER2-targeted therapies in pure DCIS is investigational. As noted by MTWoman, the link posted by Bluebirdgirl concerns some interim findings from the NSABP B-43 trial. According to clinicaltrials.gov, the NSABP B-43 trial, regarding the use in trastuzumab (Herceptin), a HER2-targeted agent, is on-going, but not recruiting participants (https://clinicaltrials.gov/show/NCT00769379).

I agree with Beesie's take on the 2009 study (Roses et al.) referenced in the post from SS21, which relates to a small study in 106 patients which found that "HER2 overexpression" [as assessed in biopsy tissue from] DCIS lesions had some predictive value re the presence of invasive foci on definitive surgical pathology, a finding the authors noted must be validated through additional study. In any case, this particular finding appears to be of no import to those in this thread who have been diagnosed with pure DCIS (and no invasive disease) based on surgical pathology.

Regarding current HER2 testing practices in pure DCIS, in general, the National Comprehensive Cancer Network (NCCN) guidelines for Breast Cancer (Version 2.2016) do not recommend routine assessment of HER2 status for pure DCIS. This appears to reflect the current level of evidence regarding its value as a prognostic marker in pure DCIS, and that HER2-targeted treatments are not used in the pure DCIS setting (emphasis added):

"Although HER2 status is of prognostic significance in invasive cancer, its importance in DCIS has not been elucidated. To date, studies have either found unclear or weak evidence of HER2 status as a prognostic indicator in DCIS.[42-45] The NCCN Panel concluded that knowing the HER2 status of DCIS does not alter the management strategy and routinely should not be determined."

In accordance with current treatment guidelines, many patients with pure DCIS do not receive HER2 testing.

This may or may not change in the future, since it is an on-going area of research, and we may learn more from on-going or new studies about the prognostic implications of HER2 status in pure DCIS.

BarredOwl

MTwoman

thanks for clarifying! I thought it was still just being explored as an option, but thought I had seen some talk about it from women here.

Bluebirdgirl

Thank you, BarredOwl, Beesie, and MTwoman,for that great information. I always learn so much on this site, that's why I continue to visit it regularly. I think that in years to come, probably when I'm an old woman, lol, they will know more about pure DCIS and who is at greater risk of recurrence, etc. How wonderful that would be!!

danix5

I had DCIS GRADE3 multiple areas 2008 bilateral mx, opp/hyster 2008. Fast forward Jan 2017 IDC AND ILC HER2 positive ER+ PR-

Had two areas removed yesterday,and two sentinel nodes,one known cancer other we are waiting for path

Breast surgeon stated that there was quite a bit of residual tissue ! My heart had powerful cardiac arrhythmia which put me in distress during first mx. I almost died on the table spent four days in the heart ward than two months had cardiac ablation. Heart is fine now

This appears to be possibly a reason so much was left behind, I clearly am very angry they should've ablated my heart area and then take me back to finish the mx to clear tissue properly but I guess they felt they had done a good job. Which clearly they did not.

I have a call into surgeon this morning to ask whether possibly opening both breasts and making sure all the tissue is removed properly this time or do I just wait do the radiation anti-estrogen and Herceptin?

Has anyone else had this type of complication?

Still waiting on final path

Thank you

Daniella

Rschillig

I was dx with DCIS high grade, had nipple sparing bilateral mastectomy with expanders was told I did not need an oncologist because I had the mastectomy no radiation needed there was no breast tissue to treat. I got a call from my PCP was told I did need to see an oncologist because it was HER2 positive. At the time of my visit with the oncology there was no path showing HER2 test. Requested test from surgeon it revealed it was HER2 positive. Spoke with Oncology regarding taking medications was told there was a lot of side affects recommended not to take it. Developed an infection had expanders removed for a few months. Had the expanders replaced then had the implants put in. Eleven months after my last surgery diagnosed with pagets.Had excision of both nipples with biopsy of lymph nodes. Waiting for results of pathology.

MinusTwo

Rschillig: My original BMX for DCIS did not test for HER2+. I too had no further treatment. Recurrence in a lymph node requiring chemo, ALND surgery, rads.

If you are even equivocal for HER2+, it is my opinion that getting Herceptin is a life saver. Sometimes the tests are conflicting, but you should force the issue if necessary. I don't believe it is given alone, so it will probably require chemo. You may want to get a second opinion from docs in a different group. Be sure you get copies of all your tests.

proudtospin

well i had dcis in 08, did the lumpie, rads and aromasin for 5 years. Was feeling quite smug at my 8.5 point when bingo, got tummy pains, did a ct scan of abdomen and lo and behold, bc found in my liver

Nasty and certainly not expected, now on a really nasty med but hey, aint gonna give up now

MinusTwo

Oh Proud - I'm so sorry to hear this. I don't follow the Crazy thread since I can't keep up, but I've "known" you here and there. Surely did not know this had happened. What a disgusting turn of events. My thoughts will be with you as you start new treatment regimes.

BebeZF

proudtospin,

So sorry, fight it, you will be fine. When you said BC found in your liver, what do you mean by BC?

Is it possibly from side effects of your meds for DCIS in 08?

Hugs,

Bebe

proudtospin

it is not from side effects of my med but considered a reoccurance i guess of my breast cancer. No idea why it picked my liver . I do plan on fighting it, taking something called affitor and also aromasin which i took before. The affinitor has nasty effect of causing mouth sores so using special mouthwash.

Looking at my bucket list of vacations and that is fun

MTwoman

Oh Proud, I'm so sorry to hear that! I've felt a bit smug (or maybe safe is a better description?) at times being 14 years NED, but your post reminds me to be thankful each day. ((hugs))

edited to add: I am still only 52, so have not even reached my peak risk window for my remaining boob

proudtospin

well we all wor with best docs we can and fight for best result

Annette47

Proudtospin -

So very sorry to hear of your recurrence! Will be sending good thoughts your way that the treatments are both effective and tolerable.

Freya244117

Sorry to hear your news Proud. I was recently dxd with liver mets too. Take those holidays while you can. Good luck.

Jelson

Proudtospin- yours is a familiar name here so when I saw your news on another thread, I wanted to track you down to say how sorry I am at your news. I was diagnosed with DCIS in 2009, so not that far behind you, had to stop tamoxifen at 4.5 years due to endometrial cancer. Just had my annual exam with my BC MO and asked him why he was still seeing me, he confirmed that most DCIS recurrences occur further out 10, 15 20 years but he wants to keep me as an active patient - in the event...... So yes, reality check -not to put off those exciting travel plans, delicious treats, get-togethers with old friends etc.. Spring is coming - I hope your treatments are tolerable and that you kick this to the curb again.

Julie

proudtospin

thanks julie and everyone else for your good wishes

I am still a bit dazed but that is interesting what your mo said. I think my mo was as surprised as meling with it

Treatment, well back on aromasin as i had stopped at 5 years, of course now i question that decision. Second med is called afinitor, wildly expensive but insurance got me a grant which is covering it for now. Afinitor is not nice but dealing with it, dang but it makes me very tired

Beesie

proudtospin, I don't sign on very much these days, and I'm just seeing that you have a liver mets recurrence. Crap. So sorry to hear that news.

I wanted to find out a bit more about your recurrence so I went back to check some of your recent posts. I notice that you mentioned that you had a microinvasion. I was really surprised to read that because my recollection from your original diagnosis was that you had pure DCIS - which would make a diagnosis of liver mets really shocking. Was the microinvasion found at the time of your original diagnosis, or is this more recent? In addition to the liver mets diagnosis, have you also had a local recurrence that includes this small amount of invasive cancer?

Sorry that you are dealing with side effects from the Afinitor; hopefully your body adjusts and the side effects lessen, and hopefully the Afinitor does what it's supposed to do.

Sending ((hugs))!!

proudtospin

hi bessie, yeah i did have micro invasion that affected one lymph gland. It was found late by my ro just as i was starting rads. I guess i just put that detail out of my mind although i do not think it would have changed my treatment plan.

I had neen having pain my abdomen which lead to a ct scan and that is when it was found and my gastro said get thee to your onco..

I think i am adjusting to the afinitor but it sure makes me tired.

Beesie

Wow, I had no idea that your diagnosis had changed! That must have been a shock. In my case, I suppose I was lucky because my microinvasion was found at the time of my excisional biopsy, so I knew right from the start that I didn't have pure DCIS and had a small risk of mets. I was worried that my MX pathology might upstage me further, but fortunately all that was found was a lot more high grade DCIS. So I ended up with a diagnosis of DCIS-MI, Stage IA.

How in the world did an RO discover a microinvasion? Was it in the pathology report and nobody caught it? And when you say that it affected on lymph gland, do you mean that you had a positive node as well as having the microinvasion? Or did you just have micromets to a node, but no microinvasion within the breast tissue? Sorry for the questions, I'm just so surprised because I always thought you had pure DCIS. Based on what we know today vs what was known at the time of your diagnosis, the one difference today might be that your invasive component would have been HER2 tested. These days, if you have a microinvasion that is HER2+ positive and if you are node positive, then in all likelihood both chemo and Herceptin would be recommended. But that certainly wasn't the case back in 2009, so you are right that at the time you were diagnosed, this change in diagnosis probably wouldn't have changed your treatment plan.

Good luck adjusting to the Afinitor