Newly Diagnosed IDC and DCIS

crsharper

Hello! Recently diagnosed. Confirmed IDC, intermediate grade and DCIS High grade. ER+/PR+, HER2- I have two spots, one is 1.8 CM and one is 3 cm. Have had MRI and MRI didn't show any other spots. I'm opting for Lumpectomy. I have very dense breasts and my BS said she would feel comfortable doing the Mastectomy if I wanted it because of my dense breasts. She recommends lumpectomy though. i though about it for a week or so and I'm going to go with the lumpectomy. Mainly because I've never heard anyone say they regret the lumpectomy and I do know people that questioned their mastectomy after a few years. BS says I would definitely need radiation.

I don't really have any questions, I'm trying to just take everything one day at a time and stay off Dr. Google, since I still know know all of my information.

The one thing I'm struggling with the most is since they caught it early, and I probably won't have to have chemo and I'm not doing mastectomy just lumpectomy I almost feel guilty saying I have breast cancer. Like I haven't really earned it. Is that weird? Did anyone else deal with that? I guess I did have a question, lol!

I'm sure I'll have more questions as time goes on and I start radiation, hormone therapy, etc.

Thanks all! Look forward to getting to know some of you!

Beesie

Surgery, sentinel node biopsy (which gives you a life long risk of lymphedema), radiation, endocrine (anti-estrogen) therapy (with side effects) for 5 to 10 years. Yeah, you have breast cancer.

As for chemo, since your cancer is ER+, your tumor will likely be sent for an Oncotype test. This test assesses the genetic makeup of the tumor to determine how aggressive the cancer is, and based on that, provides you and your Oncologist with an estimated 9-year risk of distant recurrence, i.e. metastasis. Depending on your Oncotype score, either endocrine therapy alone (either Tamoxifen or an Aromatase Inhibitor) or chemo followed by endocrine therapy will be recommended. Most women with ER+/HER- cancers who are node negative don't end up getting chemo, but the Oncotype test does give some patients the unpleasant surprise of a chemo recommendation.

Your attitude is great, and I hope that this turns out to be a easy for you as you are anticipating, but the thing about breast cancer is that you never know what it might throw at you. So be prepared.

With regard to your diagnosis, how large is the IDC component of each area of cancer? That's what will determine your staging. The DCIS needs to be removed but can otherwise be ignored, since anything done to treat the IDC will be more than sufficient for the DCIS. And the DCIS is not counted towards staging.

MountainMia

Hi crsharper. Welcome. I'm so sorry you're here! Yes, you have cancer. I think your reaction about "guilt" is really normal, or at least I recognize it for myself. The thing is, there are people with cancer who have an "easier" time than you will have, and people with cancer who have a harder time. Sometimes I find myself comparing my situation with others. It's not helpful to me or them, so I try to quit!

I will guess the IDC is the 1.8cm mass and the DCIS is the 3cm. It's great news that the MRI didn't see anything else.

I was diagnosed in early 2019 with grade 3 IDC and DCIS, with sizes similar to yours (on the assumption I made above.) Mine was triple negative, so I did have chemo, but no follow-up hormone therapy. See? Mine sucks. And yours sucks. They BOTH suck! even though they're different.

I did have lumpectomy and was very glad I did. A few months later, I also had a minor reduction in the healthy breast so the sizes would be more symmetrical. They might not tell you that is an option, but it is. Both my surgeries healed very easily and I am super glad I didn't do a mastectomy, with or without reconstruction.

It sounds like you're doing okay. That's fantastic. You can probably find topic/threads that are specific to your month of surgery and radiation, once you're scheduled for those. Also there is a lot of info on the other issues, side effects, hormone and targeted therapy, etc. When you have a bit more info of what you're doing, you will find people will be very helpful in answering your questions.

Askmissa

very sorry to hear about your diagnosis but you've joined a wonderful community! If you go the lumpectomy route you will have to have radiation, and your skin on that side will never be the same. I preferred mastectomy to radiation. Be sure to look closely at both options and which will give you best aesthetic, health and emotional outcome.

Until your lymph nodes are tested, you won't know about chemo. It's too soon to tell if you will require it. I also recommend an Oncotype test to see what is recommended specifically for your cancer type.

Wishing you the best on your journey!

jbdayton

I am glad you are able to choose the lumpectomy.

My IDC was encroaching on the chest wall and grade 3 which indicated the need for chemo. I did 6 rounds of chemo then scheduled a lumpectomy. My post chemo ultrasound showed my tumor had shrunk to only 5mm. Upon further discussions with my breast surgeon, due to high risk, we changed to a bi-lateral mastectomy, no radiation and hormone therapy.

A note to those who may consider mastectomy. A mastectomy may not eliminate the need for radiation in all IDC/DCIS cases. The location of the tumor may dictate the need for radiation. I was not anticipating needing radiation until the final pathology of the mastectomy came back showing a 1 cm area of residual DCIS in the tumor bed near the chest wall.

Sending hugs to all.

AliceBastable

crsharper, I get you on the guilt (or at least a disconnect) of saying you have cancer when other people have more complex cases and treatment. I've had four different cancers and I still feel that way because I haven't had chemo for any of them. I usually think of them as "Cancer Lite™" except late at night when I'm trying to get to sleep, when I wonder if one of them will come back to bite me in the ass or what my next new one will be and how many body parts can I still spare. And I've turned into a bit of a closet hypochondriac when I notice anything odd going on with my body - as one doctor told me, what she'd say "no problem" with other patients, with me it's "Keep an eye on that just in case." It's kind of like living in two worlds once you've had any cancer. You can put on your smiley face to the world and tell everyone (including yourself) that you HAD cancer but you're fine and everything is hunky dory, but there's always a part of your mind that keeps whispering "cancer cancer cancer" to you. You might not feel that way until after all your treatment is over. And if you're lucky, you won't feel it very often. I probably didn't think about it as much after the first one, but there isn't any chemo or radiation or pill to eradicate the mental part. But out in the real world, I haven't talked about any of the cancers since completing treatment, because I still feel like a fraud with my Cancer Lite™ history.

Rah2464

Alice God Bless You that is well said. I feel that guilt as well sometimes as well as that little whispering voice.

Beesie

AliceBastable, great post, and you make a good point.

The world doesn't need to know anything, including that we've had breast cancer. Some people choose to tell everyone and others tell virtually no one. I told people only on a "need to know" basis, which means family members and some friends that I'm in contact with regularly who were part of my support system. No one else. Being early stage and not requiring chemo makes it easy to say nothing. I had to have a MX, so I stuck to wearing bulky sweatshirts for a while (great for hiding dangling surgical drains and general unevenness) which is entirely appropriate attire in the Fall/Winter here in Canada. I think if I had told lots of people that I had breast cancer, I probably would have tired of the questions about chemo, etc.. and yes, I might have felt a bit guilty or a bit like an impostor, because my treatment wasn't consistent with people's expectation of what's involved with cancer treatment. But around here, we know. Things are not always as they seem. An early stage diagnosis without chemo doesn't mean, to Alice's point, that your mind won't whisper "cancer cancer cancer" any time you have a new ache or pain, or when you are lying awake at 3 a.m.. And cancer treatments are the gift that keep on giving. Surgery and lymph node removal can have long term effects. Radiation can have long term effects. Pretty much no one gets a pass on some side effects from endocrine therapy - hopefully the side effects are manageable, but they become part of your life for 5 or 10 years. So others may see the outsides and think everything is completely normal, but you will know that you had cancer. We all know. Around here, definitely no guilt necessary.

MountainMia

I want to respond to the comment about radiation damage to your skin leaving that side never looking the same. I had lumpectomy and radiation. My docs have commented that my skin on the radiation side is slightly pinked, but I honestly can't see it. Everyone responds somewhat differently, so don't assume one person's effects will necessarily be yours.

MinusTwo

Hey - JB Dayton - GREAT to see you. Hope you are doing OK in this weird state of affairs.

crsharper

Hello! I'm not sure about the size of the DCIS and the IDC, it just gave me the area of the whole area from the MRI. Maybe I just don't know how to read it.

An irregular homogeneously enhancing mass with spiculated margins is seen in the upper outer quadrant of the left breast between the anterior and middle thirds. This measures approximately 1.8 x 1.6 x 1.5 cm and corresponds to biopsy-proven invasive
ductal carcinoma. Adjacent focal signal void is thought to represent a biopsy clip and/or postsurgical change.

An irregular peripherally enhancing T1 heterogeneously intense and T2 hyperintense mass with spiculated margins is seen in the outer to slightly upper aspect of the left breast between the middle and posterior thirds. This measures approximately 3.0 x
3.0 x 2.8 cm and corresponds to biopsy-proven invasive ductal carcinoma. The T1/T2 signal is thought secondary to postbiopsy hematoma. Focal signal void is seen along the medial aspect of the mass which may represent a biopsy clip and/or postsurgical
change.

crsharper

Thank you! I think the two measurements I gave are the IDC. I went back and reread the MRI report and it says both places are IDC and listed out the sizes, it didn't mention the DCIS. The pathology mentioned the DCIS. Does that make sense? Maybe I should have asked more questions. :-)

crsharper

Hi MountainMia, thank you for saying that about radiation . I"m trying to not read a lot about it and just going with it and seeing how I respond to it. I definitely know that everyone is different!!

crsharper

Thanks all for the welcome! And I appreciate hearing everyone's stories.

bcincolorado

Welcome and yes it is cancer not matter what that has to come out. I have VERY dense breasts. My breast surgeon even said if they had not marked it well when she went in there she would have had a hard time finding it because the tissues were so dense.

They do their best to take enough and get "clean margins" which I imagine they explained to you. They will let you know if it is successful. If not, you have "re-excision surgery" which I did.

Then if that is not successful you still have the option to go for mastectomy's (which I ended up with).

My breast surgeon told me ER+/ER+/Her2- is easier to treat no matter what.

I took hormonal meds only and escaped chemo myself due to onco score. They will probably run that on you as well if they have not done so yet so you will know best treatments for you if yours is high.

Best wishes to you.

crsharper

Hi bcincolorado, she did mention that if she did not get clean margins, she would have to go back in. She said there was a 20% chance that that could happen. She did not mention that having dense breasts made it more likely. I totally get what you are saying about you can always change your mind. That is my mentality. I'm still kicking around the idea of having a reduction before I start radiation. My surgeon does not want to do them at the same time. Although I have a friend whose surgeon who wanted to have them done at the same time. All persona choice I guess. That is one thing I am learning and I think someone said it earlier. Everyone is different and your diagnosis/treatment will not be like anyone else's!!

AliceBastable

My breasts are not dense at all and I had a re-excision. And I'm another one who had no problems with radiation, a little pink dryness and peeling near the nipple, and my collarbone area got a bit pink. It still itches if I forget to use lotion, but that's it.

Jerseybird51

Dr. Google lol. Keep that sense of humor. So, my diagnosis was near identical to that of your own. And, unfortunately I am one of those who opted for the mastectomy. My MRI showed “ another area of concern “ aside from the obvious IDC tumor. The area was benign. So, with the breast gone, Sentinel node clear, and a low Onco DX score I was put on Tamoxifen. No chemotherapy or radiation. I know that feeling of like “ well my situation isn’t near as bad as her’s”blah, blah, blah. Bottom line, yes it freakin is. Take care of you You.

lunasmom22

Hi. I also have been recently diagnosed with IDC. I had a lumpectomy in August. I meet with my chemo dr next week. Like you I feel almost guilty as I am blessed to have had minimal surgery and discomfort. Some of my friends and 3 of my nieces have had radical mastectomies. I feel embarrassed to even talk to them about my diagnosis. Thank you for sharing your feelings as now I know I'm not alone in feeling this way

Moderators

Welcome, lunasmom22. We're glad you found us here.

WordGirl1968

HI Everyone -- I was diagnosed with IDC in my right breast a couple of weeks ago, stage IIA or B. The area of concern is approx. 3 cm and there is likely lymph involvement, but I'm waiting for MRI results from yesterday to confirm. I'm also scheduled for a bone scan on Wednesday.

I'm very overwhelmed by the variables and vocabulary! It's as though I just can't absorb all of the information at the moment and it all seems like a terrible whirlwind. In any event, I'm meeting with the oncologist on Monday to review the MRI results and to discuss next steps. Based on what I've already discussed with the surgeon who performed the biopsy, I'm leaning toward bilateral mastectomy.

Here's a question: Have any of you who have had bilateral mastectomies or are currently considering it opted to NOT have reconstruction? I'm 52 and have absolutely no desire to have reconstruction, but when I've told a few people they reacted as though I was completely wacky. I can't really explain why I feel strongly about it; I just don't mind "going flat," I guess. Maybe I'm just a hippie minimalist. : ) Does anyone here have the same inclination?

Best wishes to all. I guess this is a club none of us want to join but I'm grateful for community insights.

Beesie

WordGirl, welcome! Yeah, it's a strange new world you've entered, isn't it? But you'll be surprised how quickly you get up-to-speed on the terminology and all things breast cancer.

I'm not answering your question for myself - I've had reconstruction - but since it's late Saturday night it's quiet around here, so I thought I'd direct you to the forum on this discussion board for those who've opted to not reconstruct:

Forum: Living Without Reconstruction After a Mastectomy https://community.breastcancer.org/forum/82

.

Many women happily choose to not have reconstruction after a MX or BMX. Do what feels right to you, and don't give a thought to what your friends or family think. It's your body and your life.

SuQu31

Alice, let me add my “like" to your comment about guilt and cancer whispering to you. When I had a colonoscopy last week, the doctor asked if the breast cancer was gone and I smiled, nodded, but couldn't help saying, “Yes, that's what we believe." Because that's as far as my cancer whisper would let me go. And I felt guilty for saying that- why couldn't I have just said, yes? But I had just explained my surgery history and lymphedema to the nurse, so cancer was whispering pretty loudly in that moment.

MountainMia

SuQu, I have had MULTIPLE doctors say similar things. (I was diagnosed and treated in 2019, Stage I tnbc.) One of the first was someone outside my regular care team, after my treatment was done. She said something like "At least it's over." I looked her square in the eyes and said, "It is NOT OVER." She had the grace to look ashamed and then apologized a bit later. This summer I had a radiology intern say something about going back to a schedule of annual mammograms. I said "AND ultrasounds. After all, the mammogram didn't find my original tumor and it didn't see THIS (a seroma.)" GEEZ, kid, look at my chart!!! smh.

Anyway, YES, the unsettled emotions, whether vague feelings of guilt or of being an imposter or of continuing risk, they don't necessarily go away, even if they do calm down after a time.

Spookiesmom

Yes, I’m flat. Had bmx 8 years ago, was a bit older than you are now. Do I miss them? No, only when I get called sir. I didn’t want anymore surgery, co pay, pain, possible risk of infection. I just wanted to be done. And I thought I was for 7 years.

But everyone is different, with their own reasons for reconstruction or not. Your body, your choice. Don’t let your medical team, or anybody else talk you into doing something you don’t want.

Some of the flat ladies who are still working wonder what to wear. I think there are threads here about that. I’m retired, in FloriDuh I live in shorts and tshirts. Don’t really give a hoot what people think.

Best wishes.

WordGirl1968

Thank you for referring me to that forum!!

WordGirl1968

thanks. yeah, I generally don't give an eff to what people think about any of my choices but these reactions really struck me as odd and outsized. I guess there's a cosmetic thing that I'm not getting, but what else is new?

cherriccioli

Hi...

I was diagnosed on Sept 23. I was not sure what type I had because it said 2 types. Didn't know I could have both. It is small. I am thinking it is no big deal it's going to be easy for me. I also did not want everyone to know. I told my family matter of factly. I have breast cancer. They think I am taking this too lightly. I will only tell people on a need jnow basis.

Reading these posts and looking up info on my own I am wondering if I am kidding myself?

The one concern I have is in my addendum where it says invasive cancers with my results are heterogenous behaviors and have gene expressions more similar to ER negative cancers which would mean I would be triple negative.

I have my first appointment with the surgeon Oct 15 th.

moth

cherriccioli- sorry to hear you've been diagnosed. So here's the thing. About 70% of early stage cancer is essentially curable. The patients go through treatment and move on with their lives. About 20-30% will have a metastatic recurrence - that is fatal. There is no cure for metastatic breast cancer, only treatments to try to prolong life. We don't have a good way of predicting who will have a recurrence and who won't, though some of the genomic testing is trying to tease that out. For some, life expectancy after a stage IV diagnosis is about 2-3 years. Some do live longer with new therapies and frankly, sheer luck of having a slow growing cancer that responds to treatment.

So, are you kidding yourself? I don't know. Breast cancer isn't a minor thing. It's a big thing. Having cancer once puts you at greater risk of getting further cancers (not just breast). The treatments can cause lifelong side effects. And yes, it can come back and kill you. Odds are on your side but in the end, it's a binary thing - it comes back or it doesn't.

I hope your appointment with your surgeon goes smoothly and you get a plan in place.

After surgery your tumor might be sent for Oncotype testing.That would help determine if chemotherapy will be recommended.

Best wishes