Just diagnosed with DCIS - hoping for non-surgical options

Hi!

There is an approach to DCIS called "watchful waiting." Instead of doing surgery, the doctor just watches your DCIS carefully. It's a bit controversial, and many breast surgeons don't advise it. Still, more surgeons have advocated it recently as DCIS doesn't always become invasive.

You write that you have high grade DCIS. That may be more problematic than low grade DCIS, and may be more likely to become invasive. One issue with DCIS is that you might not know -- for sure -- whether you just have DCIS until surgery. A small but significant subset of patients with DCIS find out that they have microinvasions or small invasive components. Presumably, you would want those out.

My BS was at a hospital; my MO is at a separate clinic. They have had no problems with coordinating care. Good luck!

Is your DCIS ER+? If so, you could take Tamoxifen or an aromatase inhibitor (AI -- for postmenopausal women). These medications are designed to starve cancer cells of the estrogen they need to grow. You might be able to get radiation, though many women with DCIS don't.

Are you sure your biopsy doesn't say anything about your DCIS testing positive for estrogen or progesterone receptors? You should ask your oncologist and surgeon, provided they have access to your records. My biopsy report did state that I had ER+/PR+ cancer, but my sample had to be tested twice to see whether it was HER2+. They often don't test DCIS for HER2+, but you could ask about it. (HER2+ cancer is more aggressive than HER2-.)

Kelly, there is a really good and comprehensive thread that helps folks who are debating lx vs mx think through their priorities and clarify them with their team. It is here: https://community.breastcancer.org/forum/68/topics...

As much as you dislike the surgical and/or radiation recommendations, I'd talk to your team about their recommendations, the options (given your specific risk profile) and the pros and cons of each. Making decisions before you've gotten that information seems a bit hasty. It is overwhelming and the learning curve is steep, but getting a good team in place is a really good first step. ((hugs))

DCIS2018,

You might find the following article to be helpful: Finding the balance between over- and under-treatment of ductal carcinoma in situ (DCIS)

Additionally, if you have not already done so, you might want to read my opening post in this thread: Topic: A layperson's guide to DCIS

Lastly, in the thread that MTWoman referenced and linked above, entitled "Topic: lumpectomy vs mastectomy - why did you choose your route?", I'd suggest you read my post of Jun 13, 2013 04:22PM on the first page. In that post, I provide a lengthy list of considerations for women making the lumpectomy vs mastectomy vs. bilateral mastectomy decision. I developed the list with input from a lot of others here; between this DCIS version of the list, an invasive cancer version (there are different considerations for those with DCIS vs. invasive cancer) and an earlier version, this 'list of considerations' has been reposted on this site many times for many years, and I'm glad to say that it has helped a lot of women decide which surgical option is the right choice for them. I hope you find it helpful.

I'm so sorry you are struggling with this. Attempting to learn every thing you need to make a decision and move forward can be so overwhelming. I feel like I've been in a fog since my screening mammogram came back with questions in mid December.

I had my lumpectomy on Tuesday and just spent a long time talking over the pathology results with my BS on Friday. I really love my surgeon and feel that he is up to the minute on the latest research and doesn't over treat. He did talk to me about clinical trials underway for low grade DCIS, but that with my diagnosis (grade 3 on biopsy, grade 2 after lumpectomy) I didn't qualify. He emphasized that because there is so little that is understood about what causes cells to make the final cellular change to invasive cancer, at this point the standard of care for most everyone is surgery. This is why the watch and wait protocols are tied to clinical trials. Remember that you don't have your final, official diagnosis until after surgery and your pathology comes back. What treatment options happen after that is determined by what is found and what you and your trusted experts decide together. I'll be meeting with a radiation and medical oncologist in the next few weeks but I've not heard of anyone meeting with a medical oncologist first as they can't really weigh in until you have your official diagnosis. That layperson's guide to DCIS linked above was the best thing I read about this diagnosis and really helped inform my decision making so far. I think it may help you a lot too.

My ER/PR status wasn't available when I was first called with my DCIS diagnosis post biopsy, but my BS had it by the time we consulted with him several days later. HER+ status is generally not checked in true DCIS since the cancer is by definition not invasive and it doesn't have any bearing on treatment. If you have surgery and they find small micro invasions they will check your HER status to help guide treatment. This is another reason why meeting with a medical oncologist before you have official pathology may not be helpful.

Just to help provide more info on surgery - six days out from my lumpectomy I can say that while it wasn't the easy surgery I was led to believe by many of the posts here, it has certainly been manageable. I've had a lot of swelling and bruising. Vey little actual pain, but a lot of soreness. Also just very tired and sleeping a lot. I haven't taken much pain medicine and prior to the swelling and bruising was shocked to see how normal my breast looked. The surgeon hid the incision next to my breast almost under my armpit and when the scar heals I don't think it will be noticeable at all. It was outpatient - i got to the hospital at 8 AM and was back home on my couch by 2. We all know how terrifying it is. In my case, even with the bruising and swelling (which I'm told is not typical) I'm amazed at how OK this has all been.

Good luck navigating your next steps and whatever decision you make will be the right one for you.

Hi DCIS2018 - from what you wrote I can't tell if your initial biopsy was a core biopsy or something larger. If a core, then yes, you need at least a lumpectomy. You really can't make any further decision until you have that. The core biopsy only takes a tiny sample, a lumpectomy takes a larger area and this will look at margins and more.

Hopefully nothing else will be found and you can easily proceed to the next step. Two mm is very tiny and it is not unreasonable to have no further treatment with that. High grade though might change things a little, but if nothing else is found and you have good margins you may be okay with the lumpectomy only. Check out he Van Nuys Prognostic Index.

My ER and PR receptors didn't come in until a couple weeks after my first biopsy report.

DCIS2018,

I was surprised to find that my lumpectomy incision was made along the outer edge of the areola, so I think the scarring will be minimal. The CN biopsy was more painful. That may not be the norm everywhere, but it's worth inquiring.

I sometimes jokingly refer to life before.diagnosis and life after. A lot changes on that date.

DCIS2018,

If you are concerned about a hole or dent in your breast after a LX and think the appearance will be better with a MX, I’d advise you to look at pictures of reconstructed breasts.

https://www.mdanderson.org/content/dam/mdanderson/documents/patients-and-family/diagnosis-and-treatment/treatment-options/breast-reconstruction/reconstruction-gallery.pptx

https://www.qvh.nhs.uk/wp-content/uploads/2015/09/Breast_reconstruction_photographs.pdf

http://www.breastcancer.org/treatment/surgery/reconstruction/pictures

I haven't gone back to work yet. I work for a women's health organization and they have been fantastic in encouraging me to take the time I need. I took two weeks off. I think I could go back starting tomorrow if I needed to, but since I'm still sore, tired and not in regular bras am very happy to be home resting.

I had an area about the size of an egg in the 1o'clock position removed and there is no hole or divot. Despite the bruising and swelling, its shocking how normal it looks so far and how much feeling I still have post LX.

Since you're in NYC, you presumably have a lot of choices in surgeons. At any rate, you might want to read about oncoplastic surgeons "here."

Just another thing to think about...

LisaAlissa

DCIS2018

At Roswell Park, I had a radioactive seed implanted instead of the guide wires and I understand that MSK also uses this method. It was similar to the CN biopsy. I opted for local anesthesia for my lumpectomy, but I was not conscious (i believe they call it twilight anesthesia).