Diagnosed with DCIS: How do I decide on treatment?

Call your insurer if your doctor isn't addressing home help. Most insurers cover benefits for extra post-surgery home care as it reduces the rehospitalization statistics. Also ask the hospital social/case worker or patient onbudsperson for any and all eligible services that apply. I'm sorry that you're going through this with scant in-person help and hope your doctor(s) become be more helpful but maybe they need to be made aware of the exact circumstances.

I live alone, after moving out of a long relationship, and have had to start building a new ' support team' from scratch in a new state and worry about needing medical help so spent time checking resources 'just on case' I ever need them. I hope that the Mayo Connect Community are helping you feel connected and cared about, as I'm sure you are.

Thank you callalloo very much. I kept calling my doctor’s office for visiting nurse care until I finally started receiving calls from visiting nurse services - a lot of calls. There seemed to be a mix up. As it turns out I did request Visiting Nurse services before the surgery (a suggestion from a support group member) but the request was never sent through. I finally received a call from one very honest nurse who said, “I’m calling to aggravate you.” I laughed and asked Why? That’s when I found out about my request not going through. She said she had to start from scratch. That was Wednesday - 2 days after the surgery and then Friday I saw a visiting nurse! She was lovely, got all the information she needed, I signed consent forms and then she carefully examined my breasts.

Good news - I don’t have a fever and there’s no infection. Also my racing heart rate (almost 100 bpm) is considered normal after surgery - something like a “normal tachycardia”.

The not-so-great news is that I still have a huge, hard right breast and a huge not-hard left breast and the tugs at the incision sites are creating a weird nauseating, stinging pain.

The nurse said that what I was doing was okay and proceeded to do the same - carefully remove the blood stained white Bounty napkins (they don’t stick) from under and around my breasts, replace them with fresh napkins and carefully reposition me back into an old bra that has a big enough cup size to hold everything and still offer some compression.

I sure wish the doctor or someone would have told me of this possibility so I could be more prepared. No one told me about the possibility of a huge hard breast or what to do in the event of that happening. If it wasn’t for rene1636 and others from this site, I would have gone mad!

I got another call last night telling me to expect a visiting nurse again on Monday. I think 6 visits have been approved. 🤞

Hopefully, hopefully, the swelling will go down, the horrible bruising will fade and the nauseating weakness will subside.

Thank you again for your reply. 🥰

Thank you callalloo very much. I kept calling my doctor’s office for visiting nurse care until I finally started receiving calls from visiting nurse services - a lot of calls. There seemed to be a mix up. As it turns out I did request Visiting Nurse services before the surgery (a suggestion from a support group member) but the request was never sent through. I finally received a call from one very honest nurse who said, “I’m calling to aggravate you.” I laughed and asked Why? That’s when I found out about my request not going through. She said she had to start from scratch. That was Wednesday - 2 days after the surgery and then Friday I saw a visiting nurse! She was lovely, got all the information she needed, I signed consent forms and then she carefully examined my breasts.

Good news - I don’t have a fever and there’s no infection. Also my racing heart rate (almost 100 bpm) is considered normal after surgery - something like a “normal tachycardia”.

The not-so-great news is that I still have a huge, hard right breast and a huge not-hard left breast and the tugs at the incision sites are creating a weird nauseating, stinging pain.

The nurse said that what I was doing was okay and proceeded to do the same - carefully remove the blood stained white Bounty napkins (they don’t stick) from under and around my breasts, replace them with fresh napkins and carefully reposition me back into an old bra that has a big enough cup size to hold everything and still offer some compression.

I sure wish the doctor or someone would have told me of this possibility so I could be more prepared. No one told me about the possibility of a huge hard breast or what to do in the event of that happening. If it wasn’t for rene1636 and others from this site, I would have gone mad!

I got another call last night telling me to expect a visiting nurse again on Monday. I think 6 visits have been approved. 🤞

Hopefully, hopefully, the swelling will go down, the horrible bruising will fade and the nauseating weakness will subside.

Thank you again for your reply. 🥰

Hello @nayade ,

It sounds like good news for your friend, a cancer likely caught early (8mm is very small). [I'd wish that the surgeon had done a sentinel lymph node biopsy but maybe the doctors determined clean lymph nodes some other way.] And you didn't mention the HER2 status so what I note below is if the cancer was E+, P+ and HER2 negative. I'm not a doctor so the following is just from what I learned from my post-lumpectomy journey.

Lumpectomies came about when women demanded that doctors review the usual 'automatic mastectomy' decision for breast cancer. The resulting lumpectomies were a compromise so the 'rule of thumb' developed that "radiation-plus-lumpectomy" was an alternative to complete mastectomies for selected cases of breast cancer. According to my oncologist, they have still have equivalent statistics for success. So the rule of thumb remains that patients having lumpectomies have (or at least consider) post-surgical radiation.

There are differences in the kind and frequency of radiation though. The oncology radiologist I saw offered a series of 5 sessions, every other day, with the whole cycle complete in 9 days. Not every facility has the technology to provide that it though. And some doctors do not routinely recommend radiation for older patients.

If you friend can get a second treatment opinion, she can ask that doctor about radiation choices and the tamoxifen. If she is postmenopausal, she can also ask about aromatase inhibitors which are the drugs most commonly prescribed in the United States (but not always, again) for E+, P+, HER2- small tumors caught early. But there are a lot of other factors that an oncologist considers when making recommendations as well and maybe tamoxifen is the best idea.

There is no clear "universal protocol" that I know of just the usual 'standard recommendations' which people frequently get a second opinion to confirm or question. Doctors can have different opinions which are, both, valid but just based on differing perspectives. That's why a second opinion, if possible, can be very reassuring.

Good news! I'm happy to read that you have some nursing help and congrats for getting that done. I'm sure it was stressful to have to keep calling and trying at an already dicey post-surgical time but we all learn from these shared experiences and are better-prepared if we face similar glitches.

I think doctors have a difficult time of trying to decide how much to tell us (to inform us) and which less-likely consequences they can fairly omit. As long as you're keeping your doctor informed at every step, which the nurses can help with too, the healing process will do what it needs to do. If you can't see the doctor yet for a followup appointment, make sure he knows what's going on so he can reassure you along the way or attend to anything unusual. But I'm really glad that you have some nursing help in the interim. 🙂

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.

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.

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.

I’m doing the same! DCIS but there was nothing present in the lumpectomy (removed with biopsy) so I’m passing on radiation. Not only for the side effects & residual effects but also so I have a possible option of another lumpectomy in case of reoccurrence. I am considering the AI’s since my type was ER/PR+ depending on what’s recommended with my other health issues. My Oncotype DX DCIS score came back as a 28 (in the low category) with a 6% risk with radiation & an 8% risk with just the lumpectomy. I’m willing to “roll the dice” for a 2% difference by not getting radiation.