Diagnosed with DCIS: How do I decide on treatment?

@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.

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 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.

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!

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.

Hello
Go for the mastectomy. 2012 had DCIS stage 0. Received radiation and a lumpectomy. 2021 DCIS again, had to have mastectomy. I wanted it in 2012 and they did not let me.

@heydon2023 your words are spot on for what I did 18 yrs ago. I had DCIS and had lumpectomy. Clean margins. I did take tamoxifen for 3 1/2 yrs. Actually mine ‘spot’ was so small the biopsy got all the cancer cells (unbeknownst at the time). When surgery was done the tissue had no cancer cells. I did talk to a radiation doctor (radiologist?) and he said treatment 5 days/ week for 7 weeks. When I said he was treating me like I had cancer & theoretically I did not have any cancer left, he just said “that’s the protocol “. I asked him if I was his wife would he have me do radiation. He said that wasn’t a fair question. I think it was. I researched every study and info I could. Went for a second opinion. He mentioned some studies and research I had read and said , I don’t believe you need radiation. If you were my wife (didn’t even have to ask) I wouldn’t have you do radiation. Didn’t do radiation.
No one back then had told me about not being able to radiate the same breast and you still do not hear about that very much. I just mentioned that to my oncologist and he told me that it isn’t true, they can radiate the same breast with different techniques or something. I’m going to ask again and learn more.
Blessings to you We must be Proactive in our own health. Stay strong.

Thank you for that kind response. My radiologist told me when I asked her that question that if the whole breast was radiated, the only thing they can do the next time, if the cancer returns, is a mastectomy. If the tumor was really small, they could do a 'partial' breast radiation. But if the cancer returns, they cannot do the radiation again on that same spot. I had my first after surgery visit today with my medical oncologist and told her I was having neither the radiation nor the pill as I had bad side effects from it. She was, rather surprisingly quite ok with that and told me as my cancer was so small, radiation wasn't usually recommended. In fact, she then said that doctors 'recommend' these two options, but they're not, in my case, necessary? It's up to the patient. She told me that over a 10-year period, my chance of the cancer NOT recurring was 90% but taking the Pill it would be 92%. So, taking the Pill for 5 years didn't seem to me to make much of a difference? Now, I have to have checkups every 3 months for two years and a 3D mammogram every year. So, I felt very happy leaving the hospital for the first time since my surgery. Blessing to you also.

Curious if anyone has been diagnosed with DCIS with central necrosis & microcalcifications (mine was 0.6 cm in greatest dimension ) with microinvasive carcinoma (mine was 0.25 mm) and chose lumpectomy without radiation or anti-hormone treatments. My ER/PR were both positive. Since areas are so small I am having a hard time weighing pros/cons of radiation treatment on my body.

@katemh72 I do feel for you, as decisions like this are So Difficult. I weighed the pros and cons too. Finally made my decision. Even after that I played the ‘did I make the right decision?’ ‘What If’. I think during this time there are areas to look at: am I making this decision for me or relying on someone ‘softly’ (w/good intentions) telling me what to do?
Is it fear that is driving this decision? Is my decision based on my knowledge right now.
It took me some bit of time to get past the decision I made, but after awhile I did. I second guessed my decision for awhile, but I also kept educating myself about breast cancer & still do. Mammos were always a bit nerve wreaking but the radiology department ppl were so compassionate. You will find your way and what is right decision For You. Stay strong. Blessings.