What helped you make treatment decisions following DCIS lumpectomy?

I had prone radiation after my lumpectomy, my nurse at the doctors told me about it she said that her mother had breast cancer and had radiation in the prone position prior to that she didn’t know about it either.
No one in my cancer group knew about it either, it must be a secret. The radiation focuses more on the area against laying on your back which is known to spread to other areas. Hope this info helps.
By the way I didn’t take any other medication after.

Are you going to do the reconstruction? Heal quickly and watch happy movie. Let me know how things are going for you

Yes, I am. I have an expander and my surgeon filled it with saline to make it look better. I think maybe three or four months from now he will finish if healed enough. It looks way better than I thought it would. My breast surgeon was able to save my nipple. I feel better than I expected but I still have meds in my system. Hoping to continue this way. Thank you for listening. I hope you do well.

I’m 62 years old & a “newbie” & just starting my journey with DCIS. I was recently diagnosed with DCIS stage ll & it’s positive for both estrogen & progesterone reactive. I just had the MRI & thankfully nothing additional showed up. I have an appointment in a few days with my surgeon to discuss treatment. I know I’ll need a lumpectomy & I’ve been researching the cancer sites for additional information on radiation & hormone therapy’s. I don’t know a lot but from the statistics I’ve seen it appears that I now have a 40-50% chance of getting a future breast cancer after this. Since my type is hormone reactive I think the hormone therapy will be a definite for me even though it can cause some scary side effects. I’m questioning the radiation IF it’s suggested by my surgeon/oncology team. From what I’ve deduced from research you can only have radiation 1x in your life. So I’m not sure I want to use the radiation “card” for this in the event I would get a more aggressive breast cancer at a later date which radiation might have been a choice IF I hadn’t already had it for my DCIS. I realize that a lot will depend on the pathology report after the lumpectomy & there are a lot of variables in each cancer diagnosis & personal experience. I know that the Oconotype genetic test will also help with my treatment options. I’m just trying to stay ahead of all this since it’s a lot. From the statistics I’ve seen there is a very small difference in the percentage of reoccurrence with those that had both radiation & hormone therapy vs those that just had hormone therapy. My question is does anyone have a similar experience with my type of DCIS that did NOT get radiation but did go on the hormone replacement & if so, how did it work out for you long run? TYIA

Welcome, Rene, @dposie asked almost the exact question a while back. For this reason, I moved your post about DCIS treatment decision making to this discussion:

- What helped you make treatment decisions following DCIS lumpectomy?: https://connect.mayoclinic.org/discussion/treatment-decision-following-dcis-lumpectomy/

I did this so you can read the previous posts and easily connect with others like @auntieoakley @sequoia @debra145 @texasduchess @anniemae2 @jeanadair123 who have shared their experiences. You might also be interested in this related discussion:

- Diagnosed with DCIS: How do I decide on treatment?: https://connect.mayoclinic.org/discussion/dcis/

The one common theme is the everyone is different. It looks like you've done quit a bit of research. And you're quite right that you'll have more information to inform your decision after surgery. Are you currently getting care at a cancer center or closer to home?

Thank you for moving the message into a better discussion & providing links. I’m currently being treated locally in Missouri with a surgeon affiliated with a breast center at a local hospital. I’ve done a lot of research & my head is spinning. I’m trying to gather enough information to be able to make the best choices. It’s almost like the aftercare treatments of radiation & hormone meds are worse than the odds of the cancer returning. I realize both are “standards” of care but I’m also finding that they may not be exactly necessary for some DCIS cases using current clinical trail information. 97% of women are still alive 20 years after diagnosis. I’m starting to lean towards a watch, wait & see attitude unless my doctor can provide a compelling reason to do otherwise. I’m wondering if anyone else has done the same & what were their long term results, realizing that everyone’s case is different with all of the variables involved in DCIS.

@rene1636
It is a very scary time when trying to make these decisions. I did not see any reference to chemo in your discussion, have they mentioned that?

I was in early 60s when I was diagnoses with stage II, lump in one breast and 2 lymph nodes.

In simplest terms, each treatment reduces the chance of reoccurrence. I had lumpectomy, chemo, radiation and then AIs. I tolerated all treatment except AIs. I tried multiple types of AIs and then decided against after lengthy discussion with oncologist.

Every treatment is worth a try and should not be excluded based on others experience.

I suggest checking into local support groups, or the following virtual group. It meets via Zoom every Monday evening and it is not just for Mayo patients. (Not meeting today due to Labor Day) People from all over the US call in. Some just starting treatment and others who were treated many years ago. A wealth of experience. There is a contact email in post to get on distribution list.

Laurie

Just curious if there are any recommendations from Mayo on a good Oncologist/surgeon/facility in the St Louis MO area? I feel kind of helpless just picking a doctor off a list & I don’t know anyone with a similar experience for a referral.
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Hi Rene,
I was diagnosed with DCIS last month and will be having a lumpectomy on the 15th. This is what my doctor (oncology surgeon) said:

OK, the decision RT results were reported August 22, from the right breast corneal biopsy material. This is excellent news. Your decision RT score results show a low risk profile, and I mean very low risk, at 0.8 where less than three is considered low risk. The decision RT score is on a range of 0 to 10 and corresponds to 10 year prognosis for ipsilateral invasive breast cancer and any ipsilateral breast event, that is, the total risk, of having either DCIS RT invasive cancer recurrence. Your score is 0.8, which, as I said, it’s very low risk. According to this assessment, your 10 year total risk of developing DCIS RT invasive cancer recurrent, is 7% with surgery alone or 7% with breast conserving surgery and radiation. The only thing that would render a lower risk would be if you chose mastectomy. It would be my best recommendation that you undergo lump ectomy and sentinel lymph node biopsy

So the best way to proceed would be to het that oncotype DCIS diagnostic test done which would show the likelihood of your recurrence after lumpectomy ( I assume)
Hope this helps.

Also DCIS RT is:
DCISionRT assesses a patient's individual biology along with other risk factors to provide a personalized assessment that predicts the risk of your DCIS coming back (recurring) over the next 10 years. The test calculates a personalized recurrence score and identifies your risk as low or elevated.