Diagnosed with DCIS: How do I decide on treatment?

So sorry about your turmoil. It is overwhelming. I had LCIS and ADH at age 41. Boston surgeons advised “lumpectomies “ even though the areas were microscopic. Followed by Tamoxifen 5 years, then Raloxifene. While on Tamoxifen my periods became soo heavy and I developed cysts on my ovaries. This caused surgeons to recommend hysterectomy and oophorectomy. The surgery solved the bleeding and cyst issue, but at age 50, my bone density was deteriorating fast due to the hysterectomy. The Reclast infusions only helped at first . Next… my bone density deteriorated faster. I went off Raloxifene and at age 60, they found DCIS in 2 areas of one breast. Now I had the double mastectomy since my histochemistry determined that radiation would only reduce chance of recurrence by 30percent. My only advice is ask lots of questions. Do lots of research. Get several opinions. If you choose not to have a mastectomy, get yearly MRI of breasts followed 6 months later by mammogram. If you go on meds, monitor the effects on your other organs. Try to stay positive and not worry too much. Enjoy the good days when you can forget and trust in medical advancement every year. I have to say, even 4 months after the double mastectomy, I am still worried. It’s not easy when you’re reminded with every glance in the mirror.

Well, that seems a bit extreme. However, we all have our own journey to follow, and our instincts may lead us in the right direction. I had DCIS in situ which was 0 also. And a 4mm tumor, clean margins. I had sentinel lymph node surgery - tiny scar - to check for cancer there. It was clean also. Six months on everything has healed nicely and I'm not taking anything. Tried the Arimidex pill for a short time and decided against it. The radiologist wanted me to do 10 days of radiation - I decided against that too. My opinion now for what it's worth is, if the cancer comes back, I have the option of having surgery again, which wasn't too bad, and/or radiation. But, if I had the radiation now, I cannot have it again in the same breast. I would then have to have a mastectomy. Blessings to you!

@ckins105 there is an Oncotype for DCIS https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-dcis-score

I would request it if you have time to decide. It takes about two weeks. Although you are not having chemo (so maybe that is why they didn't do it) you can still get risk of recurrence and how much medication would cut that risk.

I had grade 3 but low Oncotype. The Oncotype doesn't always match pathology.

They told me they do not run the genetic testing on the DCIS - yes pre menopausal. DCIS high grade with focal necrosis-they said my lesions were so small that it was even hard to classify as DCIS - I feel like I have been given the gift to catch so very early that I need to take care of it completely before the inevitable. I will be asking for a bilateral as have some benign post biopsy sites in my other breast . Er+ and PgR + . I am awaiting a DCIS ion rt test to see how it my specific path would react to radiation. I am a nurse so I have some knowledge and background but not enough to prepare me for trying to figure out what to do .

@ckins105 did you have an Oncotype DCIS done?

I had grade 3 invasive mixed ductal and lobular, with lymphovascular invasion, but a low Oncotype.

Like you seem to, I preferred mastectomy over radiation (and had the non-cancer breast removed as well). But at stage 0 I am not sure what I would do!

Tamoxifen, according to docs and the Oncotype report, cuts risk approximately by half. I assume you are pre-menopausal? Is your ER+ high?

These are tough decisions and I hope you trust your doc and have support.

Newly diagnosed DCIS stage 0 -High grade post lumpectomy of two very small mm size areas. What a roller coaster- oncology consult radiology consult- left with news to take tamoaxfin - No radiation as it would be considered over treatment. At 46 many things to think about -a real contemplation of how you want to live your life occurs ensued with anxiety of what to do . I spoke with friends and learned of their journeys - medication , radiation - the constant emotional tool of wondering ever 6 months is it back ….. and the emotional struggle that has caused and the fragility to their mental health. I have decided to go for a consultation of mastectomy- through all the research and talking it seems that a mastectomy at this early stage gives the best option of non reoccurring- it seems that many have taken the medication and radiation only have to resort to a mastectomy further down the road anyways. I can say since deciding to go that path - my hopelessness has lifted .

I don't recall any issues with the dye or the sentinel node removal. For any anxiety before surgery or treatment, or waiting for results, there is no shame n asking for a few Ativan if Netflix isn't working!

I agree with @timely
In short…………you got this💕

Find out if they inject lidocaine and baking soda before the blue dye which cuts back on the pain.
Ask your Internist for some tablet to take before this procedure.

Learn a calming breathing method to practice to use during this procedure.
(Try breathing in to a count of 3
holding breath to count of 3, breathing out to a count of 3.
Do this 3 times in a row; and it creates calmness.)

Your feelings are a normal part of dealing with the unknown.
You will be able to get through this.

Also say "You can do it.. whenever you feel overwhelmed.

LOL, not really. I have no problem asking for a pill and I will do that. My surgeon isn't the most compassionate person so I'll just have to work on not letting her intimidate me when I contact her for a prescription. As far as the dye...it is being done the day before and again when my surgery is performed. I wish I understood better but she got pretty irritated with my questions so I didn't even ask all that I wanted to. It's too late for a second opinion unless I postpone the surgery date which is Mar.10 and I'm scared to do that also. I am realizing I have become quite a scaredy cat in my old age. 🙂