Diagnosed with DCIS: How do I decide on treatment?

windyshores - Hi again. Just wanted you to know that I scheduled the appointment for new oncologist for Dec 20th. When I was asked if I would like to cancel the follow-up appointment with the other oncologist I said, “YES” !

Thank you windyshores! I saw an oncologist last week and was not comfortable with how he acted or what he said. I got another recommendation from a friend (she’s a nurse) for another oncologist at the same facility but was hesitant to call. But now after reading your post saying you got 4 opinions, I have all the courage I need to make that appointment for a second opinion!
Thank you so much!

Dear @tctredwell1 and @callalloo Thanks for keep in touch.
My beloved familiar refuse profilactic treatment: no RT, no Tamoxifen (because of osteoporosis-bones status aromatasa was not an option). After having a second conversation with the same oncologist knowing that my familiar refused RT...she explained us that for "cdis of low risk type" like this, the ussual "combo"(lumpectomy+RT/Tamoxifen) is not 100% the specific treatment... "You can face the low risk of having or not a future episode or try to minimize the probability of future episode with preventive combo or a part of it but having in consideration secondaries effects of the preventive treatment".
Food 4thought...
In this point we were in silence but she said OK I think we've all clear and we keep just under observation x 2 years which is OK, no problem. Some studies support the combo but in this case has a good pronostic by itself and with lumpectomy only. She said there was no illness and tumor 0 phase was removed completely.

By the way, they didn't look for her2 and centynel so they explained that was unnecessary in this step 0.

We keep calm and comfortable with the decision and continue with regular life.
On my side I spent many time studying statistics from hospitals and pubmed looking for [lumpectomy-only] and I think I'd take the same decision.
It was hard decisions so the external pressure to take preventive anyway.

If you have some point to comment feel free. Sorry for my english.
All the very best for u both.

Hi all. About a week after the surgery, my very swollen right breast started bleeding and has been bleeding ever since. I saw the surgeon last week and he thought it was great (of course the boob didn’t bleed much at all during the exam with me lying on my back). He told me to keep doing what I was doing (changing the dressings and wrapping my breast in a sanitary napkins). He said it was good the old brown blood was draining out.

Of course that night (or the next night) when I went to change the dressing, it was like a flood. There was a puddle of blood on the floor! I talked myself out of fainting and kept applying pressure until the flow slowed down enough for me to pile on the gauze and sanitary napkins. Since then, the amount of blood is much less but it’s not done.
Dealing with these bleeding incisions is one thing but having to mop up the mess and continually hand wash bloody bras and tops is exhausting (and I want to send the surgeon a bill for my time!)

Anyway, I saw the oncologist last week, as well, and immediately he starts talking about radiation and Aromasin.
My head started spinning. He said that my Estrogen Receptor was a strong positive and that he was going to do genetic testing.

*The paperwork I received said, “Estrogen Receptor - Positive - 99%” and “Progesterone Receptor - Low Positive - 7%”

*Then today I received a test result that said, “Cancer Antigen 27.29 Details:
Your Value is 28.1”

Sorry, I’m new at this. Can someone please translate?

@windyshores reading your post an OP, made me think, with the several/many AIs or estrogen inhibitors, do you think that one works better than others. Femara vs Anastrozole vs Letrazole etc? I took Anastrozole. I’ve not thought of this before 🤷‍♀️ The oncologist recommended Anastrozole snd I started it. Just curious.

I had the same issue with my care team. I no longer felt comfortable with the conflicting misinformation so I’m going to a different cancer center for my DCIS. Have you had an Oncotype DX DCIS genomics test done? This test will give you the percentage of reoccurrence odds with or without radiation. I used this to help decide to get radiation or not. Radiation is the standard treatment after lumpectomy. My test came back with a 3% difference. I’ve made the decision to roll the dice & to not get radiation. My pathology report after the lumpectomy was completely clean. It was all removed with the biopsy. My reasons…Radiation continues in your body the rest of your life unlike the meds. It can cause medical issues (heart & lung) during treatment & later in life. If you get a reoccurrence in the same breast then radiation won’t be an option & mastectomy is the only choice. Rarely can you get radiation in the same breast twice. Since I had BC once the odds are higher for me now on getting it again. I’m saving the radiation option/choice in case of a reoccurrence where another lumpectomy could be done. I am considering the hormone meds since mine was also ER/PR +. I’m seeing the new Oncologist on the 16th to see what’s suggested. Before taking meds I’m seeing a cardiologist beforehand to be sure my heart is healthy enough to take the meds which some can effect heart health. Some plaque showed up on some of my scans. I don’t want to cause another problem that would effect my quality of life. It’s a personal choice that everyone needs to make for themselves. I’ve done a lot of “uneducated” research, lol & I'm comfortable with my decisions so far. Trying to find a balance is frustrating but confidence in your care team is crucial! Best wishes on your journey!

@marcia115 many of us took these medications with few side effects. Companies are legally required to list all possible side effects for any and all meds, and forums tend to have more posts by those who do suffer from side effects. Try different ones if you have issues, and also try different manufacturers. I was determined to take an AI and ended up taking brand name Femara.

Thank you windyshores! I saw an oncologist last week and was not comfortable with how he acted or what he said. I got another recommendation from a friend (she’s a nurse) for another oncologist at the same facility but was hesitant to call. But now after reading your post saying you got 4 opinions, I have all the courage I need to make that appointment for a second opinion!
Thank you so much!

@marcia115 many of us took these medications with few side effects. Companies are legally required to list all possible side effects for any and all meds, and forums tend to have more posts by those who do suffer from side effects. Try different ones if you have issues, and also try different manufacturers. I was determined to take an AI and ended up taking brand name Femara.

marcia115 - I saw a post where the woman said she had 5 sessions of radiation as a form of “clean up”. That sounds good to me.

I’m also going to make an appointment with a new oncologist for a second opinion before I make any decisions.

As far as the estrogen inhibitor, I want to know about the choices - there’s more than one and I will probably agree to try the inhibitor and see how I tolerate it. I’ll let you know.