Newly diagnosed with DCIS and so scared

Yes, under current clinical consensus guidelines from the National Comprehensive Cancer Network (NCCN)(Version 2.2017) for the treatment of breast cancer, those whose final pathologic diagnosis (after definitive surgical treatment) is pure DCIS (Stage 0) are never treated with either chemotherapy or HER2-targeted therapies (e.g., trastuzumab (Herceptin)). However, those who have ER+ and/or PR+ disease may be offered "endocrine therapy" (also referred to as anti-hormonal therapy; e.g., usually Tamoxifen, although some post-menopausal women may be offered the option of an Aromatase Inhibitor).

BarredOwl

They had mentioned chemo because of my age and the potential for this to have moved to my nodes.....I guess in that case it's now invasive? I was told because of the comedo attributes and the grade 3 it's highly aggressive and it likes to move. Surgery on Monday.....lumpectomy and sentinel lymph node biopsy......ER+ PR- HER2 positive. I might 42, I feel like what is left with left of my youth is being stripped away. As of now we're talking radiation and tamoxifen and port insertion for Herceptin. Chemo if nodes arent clear

Renee, I will second what MTwoman said. If Herceptin is part of your treatment plan, then your diagnosis most likely is not Stage 0 DCIS. Herceptin is not even approved for use with patients who have pure DCIS; it is only given to women who have HER2+ invasive cancer.

Because most cases of invasive cancer develop from DCIS, it is very common for women who have invasive cancer (IDC) to also have a component of DCIS - IDC and DCIS are very often found together. When that happens, the staging and treatment plan is always based on the invasive cancer. The DCIS needs to be surgically removed, but other than that it is pretty much ignored, because any treatment given to address the invasive cancer will be more than sufficient to address the DCIS.

The fact that your doctors are concerned about the possibility of nodal involvement and are talking about Herceptin and chemo suggests that your diagnosis is not pure DCIS but more likely includes an invasive cancer component as well. As MTwoman suggested, please talk to your doctor about this. I'd also recommend that you get a copy of your pathology report from your biopsy, if you don't already have a copy. That should provide the full information about your diagnosis, at least what's known so far, before your lumpectomy and SNB.

Good luck with your surgery.

Thank you all for sharing. After surgery 5/8, nothing invasive. Still stage 0, DCIS, high grade. I am so grateful for that. But at the same time, the emotional roller coaster is unreal! I start radiation next week and I am angry about it. Just angry about side effects and not being in control. I know I need to find a way to let go of that. I keep saying surgery was the easy part, what's ahead is the hard part. I just don't want the side effects not to mention long term effects. And I'm sorry.....I hate the thought of being a cancer patient. I've done everything right in my life to take care of myself, as I'm sure most of us have, it just pains me to be vulnerable, weak or have my body broken by treatment. I know so many go through so much worse, but I guessing we're all entitled to our own pain. Anyway, if anybody could share their radiation experience with me, Id appreciate it.

Renee -

My radiation experience was relatively positive. I never had any skin problems at all, just a slight reddening like a mild sunburn during the last week of boosts. My breast did get somewhat swollen, and I had some fatigue, but nothing unmanageable at all. The worst part was simply having to schlep there every day, and bare my breasts to the world while I got on and off the machine. Treatments themselves lasted less time than it took to change in and out of my shirt! I kept with my normal routine the entire time. 4 years out, I haven’t had any lingering problems - the only thing I’ve noticed is that the fascia over my pecs tends to get tight, but some gentle stretching takes care of that quickly. The swelling took a long time to completely resolve, but eventually there was even some shrinkage in that breast. The cancer breast used to be slightly bigger than the other and they are now about the same size.

For what it’s worth, I applied aloe vera gel 3 times a day (in the morning, after treatment, and at night) during the time I was being treated and I think it did make a difference in how my skin reacted.

MinusTwo,

Some women have local recurrences after a diagnosis of DCIS - it happens whether the DCIS is HER2+ or HER2-. In about 50% of cases, the recurrence will not be detected until the cancer has already evolved to become invasive. Again, this happens whether the DCIS is HER2+ or HER2-.

You had DCIS and then had a subsequent invasive recurrence that was HER2+. You have concluded that your recurrence happened because your DCIS was HER2+. Most of the research studies done on HER2+ DCIS would dispute that and in fact would suggest that HER2 status does not make DCIS any more likely to recur or to develop into invasive cancer. That's precisely the reason why HER2 testing is not usually done on DCIS and why Herceptin is not approved for DCIS. There is a lot of research behind these decisions. In fact, the most recent study on HER2 impact on DCIS found that HER2+ DCIS is less likely to develop into invasive cancer:

https://bmccancer.biomedcentral.com/articles/10.11...

Approximately 40% of all cases of DCIS are HER2+. Most IDC develops from DCIS; if HER2+ DCIS was more prone to invasive recurrence, one would therefore expect an even higher percentage of invasive cancer to be HER2+. But in fact only approx. 20% of invasive breast cancers are HER2+.

HER2+ invasive cancer is very aggressive - no question about it. But DCIS is different from invasive cancer, and the research to-date does not suggest the same concerns with HER2+ DCIS. I understand your concerns about your situation and your desire to warn others, but what happened to you is a single example. There are similar examples of women who had HER2- negative DCIS who had invasive recurrences. No one's individual case is indicative of anything more than what happened to that one person, and individual examples don't over-ride all the research and current treatment protocol that's been established based on this research.

HER2+ testing is not required, nor is it usually done, when the diagnosis is pure DCIS. Herceptin is not approved for patients diagnosed with DCIS.

Thanks Beesie & Barred Owl.

I, too, was diagnosed with high grade DCIS in my right breast in January. Because I had a large spatter pattern of it, my BS wasn't convinced she could get everything with just a lumpectomy so I opted for a UMX with immediate reconstruction. I also had lift and implant on the left for symmetry. I personally leaned toward a BMX, but my BS and my physician husband didn't think it was necessary. Unfortunately, I am one of the unlucky ones who didn't get nipple sensation back on the "good" boob after surgery. So, I am really wishing I had just gone ahead and had the BMX to begin with.

Hello,

I was diagnosed with DCIS last Thursday- (right breast 5mm). (Hormone positive/stage 0) I had genetic testing Tuesday (waiting for results), already met with surgeon. I have appointment with plastic surgeon on 8/14. I am leaning toward BMX due to the fact my mother had great cancer and then died from ovarian cancer. I feel as though I have been thinking this way for a while and have had fear- and this was my call to do something about it. This has been a tornado of things happening and I am just trying to figure everything out. It is also bringing back a lot of memories.

Hello - I was diagnosed with left side DCIS measuring 8cm from nipple almost to the chest wall with comeo necrosis, grade 3, and questionable small microinvasion, ER-/PR-.  My right side has 1.7cm fibroadenoma.  I'm almost 47 years old and I missed last year's mammogram and 2015's mammo was normal.  Up to this point, it appears as though my lymph nodes are clear.  I'm scheduled for bilateral mastectomy with sentinel node biopsy on both sides on August 14th, it got moved up a day from August 15th.  My fear seems to go in stages.  Initially I thought for sure I was going to die immediately, then once I got the DCIS diagnosis I was relieved, then I realized given the size, high grade nature, fast growth, and hormone receptors being negative - it was likely hiding microinvasion or other invasive form, then I was afraid that I wouldn't get the surgery scheduled until September, then relieved that the surgery is in few weeks, and now I'm fearing what the surgery will find.  It is a perpetuating cycle of worries and anxiety.  Again the posting by those who lived though breast cancer, living with breast cancer, and those with metastasis - it keeps me from dipping into despair for too long. 

It looks like Beesie had a large DCIS, is there anyone else who was initially found with a large DCIS and if so, what was eventually found post surgery?

Thank you very much MTwoman, yesterday was a gloomy day for me but I am feeling better today.  I will just have to shake off the fear as best as I can and make the most of each day! 

I'm curious about one thing, how did you get the HER2 testing done for DCIS?  I wanted that testing done but since it is not done for DCIS, I was told no.  Part of me feels like for high grade DCIS, they should test for it.  But maybe after the mastectomy, even if DCIS they test for it? 

HeartdesiresLife, I'm sorry you are here but glad you found the forum as there's alot of help and encouragement here. I also had same DX as you with high grade, w/comedo necrosis although the size was smaller. I had no MRI prior to surgery, and the mammo showed 2.5 cm but after surgery ended up being 4.4cm. My breast are not large so for me that was a large area. I was not tested for the HER2 status either. My nurse navigator said they don't test for that if it is pure DCIS. I assume if it had been invasive then they would have tested at that point. Thankfully it remained pure DCIS. You are in the hardest time I think, which is waiting. Just try to take one day at a time, although I know that's easier said than done. If you have any questions you feel free to PM me. Keep us updated.

Dear Sitti, thank you very much for your encouraging and kind words. I will have to take few lessons from Nurse143 and just go forth and ride out the waves with much joy as I can.

In terms of monitoring Sitti, what is being recommended for you now given the bilateral mastectomy?

Thank you!

Heartesireslife - My initial diagnosis was 6cm of DCIS and I had an MRI which showed the same. After the surgery, it showed the same results. I felt a lot of the same feelings as you. "Certainly somewhere in the 6cm there is some invasive component" But, there wasn't. That was probably THE best phone call I have received. You will make it through this and there are better days on the other side.

Hi JDK, I'm sorry that you've recently had this diagnosis and am reaching out to lend you some support, as someone who had a double mastectomy nine months ago. My diagnosis is very different from yours, however. There had been no evidence of cancer in any of my regular mammograms and no family history. I had a 10cm tumour in the right breast, with 29 lymph nodes involved with cancer, and a 2cm primary tumour in the left breast, with no lymph node involvement. I have extensive bone mets and am graded III/IV, hormone receptor positive. Because my cancer was so extensive there was no question about having a double mastectomy but....this is my message to you for you to process as you wish..... even if my cancer had not been so advanced, I would have had a double mastectomy rather than a single for two reasons: breast cancer is such an insidious disease I wanted to remove as much fear of recurrence as possible and because I had decided not to have reconstruction as i'm a small person and rather delicate physically. Others may well give you different advice and that's fine. We're all different, with different lifestyles and different age groups. I'm 66 so, really, my body image is less important to me than my health. It is a big operation but I'm in a good place now. I did grieve on and off for about six months but, as my cancer is so advanced, my grief has been tempered by the wish to defeat the disease. I hope this has been of some use to you despite our different situations. Sending you a big hug and wishing you well in all your decisions. xxx