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Topic: Newly Diagnosed IDC and DCIS

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Sep 11, 2020 10:02PM

crsharper wrote:

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!

Dx 8/21/2020, IDC, Left, Grade 2, ER+/PR+, HER2- Hormonal Therapy Radiation Therapy Whole-breast: Breast Surgery 10/9/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 11, 2020 10:41PM Beesie wrote:

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 11, 2020 10:45PM MountainMia wrote:

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.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 11, 2020 11:46PM Askmissa wrote:

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!

Dx 6/17/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (FISH) Surgery 8/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 12, 2020 12:34AM jbdayton wrote:

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.

Jeannine. My bi-lateral DIEP turned into a single DIEP due to bad veins. Next was a Ruben's flap. Wound opened requiring a wound vac. 7 revisions using fat grafting and scar revisions; completed nipples and tattoos. Dx 2/4/2013, IDC, Left, 3cm, Stage IIB, Grade 3, 0/2 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/12/2013 TAC Dx 8/26/2013, DCIS, Left, 1cm, Stage 0, Grade 1 Surgery 8/26/2013 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/9/2013 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 11/21/2013 Arimidex (anastrozole)
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Sep 12, 2020 01:34AM AliceBastable wrote:

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.
Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Sep 12, 2020 05:32AM Rah2464 wrote:

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

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 12, 2020 08:51AM Beesie wrote:

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.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 12, 2020 09:52AM MountainMia wrote:

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.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 12, 2020 04:40PM MinusTwo wrote:

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 12, 2020 06:34PM - edited Sep 12, 2020 06:35PM by crsharper

This Post was deleted by crsharper.
Dx 8/21/2020, IDC, Left, Grade 2, ER+/PR+, HER2- Hormonal Therapy Radiation Therapy Whole-breast: Breast Surgery 10/9/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 12, 2020 06:37PM crsharper wrote:

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. :-)

Dx 8/21/2020, IDC, Left, Grade 2, ER+/PR+, HER2- Hormonal Therapy Radiation Therapy Whole-breast: Breast Surgery 10/9/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 12, 2020 06:39PM crsharper wrote:

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!!

Dx 8/21/2020, IDC, Left, Grade 2, ER+/PR+, HER2- Hormonal Therapy Radiation Therapy Whole-breast: Breast Surgery 10/9/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 12, 2020 06:40PM crsharper wrote:

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


Dx 8/21/2020, IDC, Left, Grade 2, ER+/PR+, HER2- Hormonal Therapy Radiation Therapy Whole-breast: Breast Surgery 10/9/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 12, 2020 07:12PM bcincolorado wrote:

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.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
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Sep 12, 2020 08:07PM crsharper wrote:

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!!

Dx 8/21/2020, IDC, Left, Grade 2, ER+/PR+, HER2- Hormonal Therapy Radiation Therapy Whole-breast: Breast Surgery 10/9/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 12, 2020 08:37PM AliceBastable wrote:

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Sep 12, 2020 09:31PM Jerseybird51 wrote:

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.

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Sep 19, 2020 10:09AM lunasmom22 wrote:

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

Dx 7/7/2020, IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Sep 19, 2020 12:23PM Moderators wrote:

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


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 19, 2020 10:26PM WordGirl1968 wrote:

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.


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Sep 19, 2020 11:19PM Beesie wrote:

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.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 20, 2020 11:25AM SuQu31 wrote:

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.


Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Surgery 12/20/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Sep 20, 2020 11:37AM MountainMia wrote:

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.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Sep 20, 2020 11:38AM Spookiesmom wrote:

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.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Sep 20, 2020 12:16PM WordGirl1968 wrote:

Thank you for referring me to that forum!!

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Sep 20, 2020 12:19PM WordGirl1968 wrote:

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?

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