Just diagnosed IDC Grade 1

Anonymous

Just diagnosed IDC Grade 1

TazMom

Hello All,

I was diagnosed last Wednesday with IDC, grade 1 in the left breast and Atypical Ductal Hyperplasia in the right (not cancerous at the moment). My doctor said if I was going to have it, this was a good one to have (always the optimist). They already scheduled my Oncologist and Surgical consult for 9/2 & 9/9. She also ordered a chest xray (did that Saturday) and a breast MRI on 9/3 to make sure there aren't any other spots in either breast that was missed on the mammogram. According to my radiology report, the mass is 3.2 cm x 3.2 cm x 2.5 cm. I haven't heard anything in terms of ER, PR, HER2 results or stage. I'm guessing I'll get that info from the Oncologist??? Spent the weekend telling family and close friends.

Aram

Hi TazMom, I am sorry you are in the group nobody wants to be part of. The ER/PR/Her2 status is part of your pathogy report. Do you have access to the report? Sometimes it takes longer for those to be reported.

I wish you luck in your treatment.

starbaby_1

Hi TazMom,

I'm sorry too that you are in this group. Please be sure to make informed decisions once you have all of the info. I too have IDC cancer in my left breast. I was not aware that there are risks to radiation on that side because of the proximity of your heart and other organs. But depending on your pathology the benefits may outweigh the risk.

It's just so hard when you are trying to wrap your arms around a cancer diagnosis....Doctors will tell you that you are "married" to radiation if you choose lumpectomy. So read all that you can and make sure you make informed decisions.

I wish you much luck and success with your path forward.

edwards750

I had IDC in my left breast too. I also had 33 radiation treatments. The medical staff were especially careful given the location of the heart. That was in 2011. Radiation was not bad at all for me although I know some women have suffered from burning and redness. I did use the cream that was prescribed which helped.

Good luck!

Diane

TazMom

I did see the pathology report, but it said the ER/PR/Her2 would be in a separate report. So far I haven't seen or heard anything. Perhaps it will be available by the time I see the oncologist on Thursday. I've heard about the possible risks of radiation when it's near your heart. Since heart issues run in my family, I'm not interested in doing anything that may cause more problems. The lump is in the 2 o'clock position on the left side, so it's near my armpit and feels closer to my chest wall. I might be ok with radiation since it's to the far left and my heart is in the center. There's still so much info to gather. All I know is I'm willing to do whatever it takes (without causing more harm to myself) to kill it and prevent spread or recurrence. If that means having a lumpectomy, mastectomy, chemo, and/or hormone therapy then I'm fine with that (still on the fence about radiation). Strangely looking forward to seeing the oncologist to find out what the plan will be.

Amy

mochaberri1971

Hi! I was newly diagnosed with Stage 1 IDC in my left breast - my dominant side - in July 2021. Not fully knowledgeable about cancer, let alone the many types of breast cancer, when I received the news, I was truly confused on what the pathologist was trying to tell me. She was not the one that performed my biopsy. It wasn't until I had finally spoken to the doctor that did my biopsy was I clear on the fact that I had cancer. This past Tuesday I had a lumpectomy and a sentinel lymph biopsy. I'm scheduled to have radiation treatments later in the month, something I'm really nervouse about and possibly will have to take Tamoxifin - not looking forward to that.

ARmom4

Just so you know, if you choose to do a double mastectomy, you may be able to skip radiation. You will definitely get to skip the yearly mammograms you have to do if you have a lumpectomy.

TazMom

I saw the surgeon yesterday. Not much to report there. Like the oncologist, she said I needed to decide what kind of surgery I wanted to have. Ugh! Since they had to reschedule my MRI to Monday 9/13, I feel like I can't make an informed decision without it. So, once the surgeon gets the report they will call me back for a follow-up appt and hopefully I'll have more questions answered. I had a 3 page list of questions for her and very few could be answered since we didn't know what type of surgery I will have. I feel like everything has been done backwards somehow. I saw the oncologist first who can't really give me a treatment plan until after surgery. I see the surgeon after the oncologist (my doc told me I would've seen the surgeon first, is that right?) and without the MRI, she can't tell me much either. I feel like I'm spinning my wheels, spending money on appointments that provide me with little to no info. The surgeon did mention that while the mortality rate is roughly the same with lumpectomy vs mastectomy, she did say that I have a much lower chance of recurrence with the mastectomy and that a lot of women my age will opt for the mastectomy. My original feeling when I was first diagnosed was to cut the girls off. Don't need them, don't want them, I'm not attached to them (figuratively speaking), and I will be more than happy to ditch the "over the shoulder boulder holders" and boob sweat (because really, yuk!). The more I thought about it, the more I thought I would do the lumpectomy after all. I was concerned about how they would continue to monitor me if I had a mastectomy. There are so many variables right now, I have no clue what to do. If the MRI shows more than the two isolated issues we know about, then I may end up with the mastectomy. They won't do the sentinel node biopsy until surgery, but if they come back positive then I'll have to go back to surgery. If the ductal hyperplasia in my right breast comes back as cancerous, then I'll have to go back for surgery. Also, not gonna lie...my biggest fear of all is that it'll come back (anywhere), so my thought right now is how can I limit that from happening. On top of that, I'm having some really vivid nightmares lately that have had me startling awake and breathing heavy. I honestly just don't know what to do.

Amy

ctmbsikia

Taz, getting the diagnosis and the whirlwind of appointments that follow is crazy. You don't have to make a decision today and it's very good of you to say let's see what the MRI says first. My MRI led to a 2nd biopsy on the right side which was found to be LCIS. Also had a 3rd excisional biopsy at my surgery (LCIS), and thankfully that breast has been behaving itself ever since! It's OK too that you have met the oncologist. I did not until after surgery. Let us know your hormone status when you get it. Wish I could help you decide, but it's a very personal decision and it does seems that the chances of recurrence are about the same with either surgery. Best wishes to you. Sorry you had to join.

TazMom

Sorry, I forgot to mention the hormone status. So, what I know is this....IDC grade 1 (stage yet to be determined), tumor is 3.2x3.2x2.6 on the left breast 2 o'clock. I am ER/PR positive, Her2 negative (IHC). According to the pathology report (if I'm reading it right), it says it's >90% ER/PR positive. They also said I had Atypical Ductal Hyperplasia a little more than 2cm wide on my right breast. When I was first given the diagnosis by my PCP, she said I would see the surgeon first, then the oncologist, and she was ordering the breast MRI and chest X-ray. DX was 8/25/21. I got the call from the referral dept on 8/26 telling me I have an appt with the oncologist 9/2, surgical consult 9/9, and the breast MRI 9/10. Seems backwards to me, but I didn't complain since they called and made all the appts for me. I go to the oncologist and he basically tells me I have to decide on the type of surgery which will determine if I do radiation or not. He's also putting me on hormone therapy for 5 years following. So far this is nothing I didn't really know or expect going into the appt. He told me that chemo would be determined after surgery when they do the genome/Oncotype testing. This test will also tell me what the likelihood of recurrence would be. Hmmm....seems like this would be handy info to have before making a decision on surgery. If it's likely to recur, I would most likely make different surgical choices. So then I get a call later that day from the imaging center telling me they won't have a radiologist available for my MRI appt on 9/10, so they need to reschedule me. The earliest appt they had at any location was 9/13 (after my surgical consult). I reached out to my PCP to let her know and asked if I should reschedule the surgical consult. She said I should keep the appt because they could at least schedule the surgery and I could always change my mind later. So I go to consult yesterday and she says I need to decide what surgery I will have. My 3 pages of questions were useless because the majority of them couldn't be answered until I knew which surgery to have. She too wants to wait until I have the MRI results. So I kind of felt like I spent a $55 copay for nothing. She wants to see me again once she has the results. Great, so I'll see her again either 9/16 or 9/21 depending on when the report is ready and sent to her. Ugh!!! So now, I'm just waiting to do the MRI and so help me if they call me to tell me they have to reschedule me again! As it stands right now, I will probably will not have surgery until October at the rate I'm going. It sounds like she isn't going to schedule until she knows what kind I choose. She said either way, it's outpatient so no hospital stay. I'm not good with patience and I feel like I'm being pulled in multiple directions. My closest friend says I should go with a mastectomy because radiation "sucks". My aunt told me I should do the lumpectomy. My mom feels a mastectomy is too severe for my situation, but will support me in whatever decision I make. I know this is supposed to be my decision, so why do I feel like I'm going to disappoint people depending on the choice I make. I was relatively positive after my DX, but in the last 2 weeks since I've become a basket case! Anywho, sorry for the rant. Can you tell I'm frustrated? Thanks for listening (reading).

Amy

Skyblanket

I too was diagnosed 8/26 with Two IDC in left breast. One at 11 & one at 3 o’clock. The 11 one has papillary features and is 2.5 x 1.4 x 2.2 cm. The other is 1.2 x .06 x 0.08 cm. Both score 1.

I started with a mammogram and sonogram then biopsy the pathology report then MRI. A stat meeting to discuss treatment plan this Thursday.

I have been comfortable with the way it has flowed although not so happy with having this challenge in life. What I would say to you is to voice your discomfort with your attending physicians around the way the testing has progressed and how it has hindered your ability to make a decision you are comfortable with. Don’t hold back.

I have had a thousand thoughts run through my mind and have read and read and made a list of questions to take to this meeting.

I have decided on no reconstruction of the breast and am comfortable with that choice. Still I don’t know fully what my options or plan will be till I have this meeting but Masectomy has been mentioned.

I know how hard this is as I’m going through the same thing. Just do what you believe is right for you. It’s your body and your life. It’s your decision and you are the one that will live with it.

Just let your surgeon know you want MRI before making a decision as to your choices. They already know it has to come out but Lumpectomy or mastectomy? Pathology and potential for reoccurrence is also a determining factor in your choices.

I know it’s terrifying. I have fleeting moments of terror myself. I try and keep calm and balanced as much as I can while having to deal with this issue. It’s hard when your are also digging for research and information. It takes a lot of your time. I’m just trying to breathe my way through as I tackle this issue.

Take care of you and keep me updated. I’m kinda of in the same scenario and timeline as you are.

AliceBastable

TazMom, the Oncotype testing is always done after surgery. Biopsies don't provide a large enough sample. If I remember correctly, I had already decided on a lumpectomy before I had the MRI. That was more to assist the surgeon in verifying the location of the tumor since I was having a lumpectomy. My sentinel node was tested after surgery, and I had a micromet. They did not have to do more surgery, but it altered the original radiation plan from a short course to a long one, with a wider area covered. Even if you have a mastectomy, if nodes are positive, you may still need radiation. I hope this information, although anecdotal, helps you.

TazMom

Thank you Skyblanket. I think I’ve decided to contact my PCP on Monday and request a second opinion for oncology. I’m not feeling 100% confident with the MO, but I’m happy with the surgeon and will see her again in the next week or so depending on when the MRI report comes in. MRI is Monday.

Alice, I was told that the MRI would also show if there were other spots in either breast that didn’t show on the mammogram. I was leaning toward the lumpectomy, but if the MRI shows more spots that may change my decision. I’ve heard mixed messages about the oncotype testing. MO says after surgery like you said. Others have said it could be done beforehand. It would be helpful to me because if there’s a high chance for recurrence then I would opt for the mastectomy. The surgeon said having a mastectomy would significantly lower my chances of recurrence. Like I’ve said before, I just want to have as much info as possible to make as informed a decision as possible for myself

Rah2464

TazMom - there is new research out showing that lumpectomy + radiation has a lower rate of local recurrence than mastectomy alone ( hopefully Moth will be along with the actual cited references). This is information that wasn't available to me when I was initially diagnosed. It may not have moved me from having a mastectomy however since my main driver was the fact that my tumor hid in my extremely dense breast tissue. Sorry you are having to go through all this I sure remember how difficult those days were trying to decide what to do.

K-Gobby

K-Gobby here. I wanted to say this site is the best. All of you are providing real info. I was so helped as i have walked this path. For me, my first visit was the PA and my new MD office. Referral to a surgeon and connection with City of Hope. She got my original mammogram appointment, breast ultrasound and biopsy. Cancer- Stage 1 found. That visit took it from a 3cm find on the 10 mammogram picture visual, to a 5.2 cm from the ultrasound. All i think came into my mind was I have Breast Cancer. Are you kidding me????? So I went online and find the doctors she provided to see if they are City of Hope connected. I did not go to the local surgeon, I went the way of the City of Hope direction. The Surgical Oncologist got the ball rolling. She ordered a Breast MRI for more info and another Breast ultrasound focused on lymph nodes. I must say, that facing down with my small breasts in that position for 30 plus minutes was really more comfortable then the nearly 50 minutes in the bone scan on my back. The results further narrowed what is of concern. Just when i thought that was it, CT scan. Remind me all, is that the test you drink the 2 bottles of really not tasty old hose tasting water? It is the only test requiring that. My 2 technicians were very thorough an explanatory. I feel like it was under 30 minutes. A discreet lower of my pants to get a pelvic scan with blanket over me for modesty. Again, more info on what is inside me in regards to other cysts or anything abnormal.

Then a visit with the gyno surgeon who covered what they plan in the future. He specifically said it is a plan based on research from patients with my diagnosis. I am free to make another plan. Really? I listen to all of you. My older sister would like me to quit chemo once it shrinks. It has shrunk, i can feel it with 5 infusions. But really sister, i have the BRCA-2 mutation. Do you think it is celebrating me quitting so it can spread farther and wider? Back to the Dr. Dr. Lee says surgery cannot start until the chemo is done. They had me do chemo because my mass was only in the left at the 6 o'clock position and shrinking it is the best option now, as all those earlier test results show it is not in lymph nodes, bones or anywhere else. Shrink and kill, then surgeries in December per my MO!! Dr Lee says BRCA 2 loves ovaries and fallopian tubes. I am 20 years out from menopause, early menopause at 41, so my girl parts are essentially out of order forever. He ordered a pelvic ultrasound last week. I had one at 41. A friend told me they would be insirtingthat device up inside me to view my vagina and all the baby making materials. My MO oncologist i saw 3 days later. There was a cyst found in the left ovary. Dr. Lee called me and said because surgery is not done during chemo infusion time, he would order another pelvic ultrasound in early December, after chemo. Did the cyst grow? In realty, he said that cyst could have been there for years, as ovulation ended so long ago and there was not activity in there. Depending on the finding, surgery would be covered after that test. To me, i have 7 more taxol/carboplatin infusions. The 4 more of another for 4 times every 2 weeks. Maybe the cyst will wither. I am just not worrying. I am taking a day at a time to address chemo side effects and making sure i drink plenty of water. Before Chemo, i needed to get an electrocardiogram. That has you lay on your side, modestly covered for about 30 minutes. Make sure your heart is healthy enough for the chemo. Thankfully mine was. I asked my MO if i will also have radiation after all chemo is done? She said lets wait and see how chemo annihilates your mass. I love her. She comes from compassion and science.

Might i just add, that out of all that has occured since I found the lump around the 20th of June, the WORST part that has taken me 3 weeks is the loss of my hair. I was born with red, naturally curly hair. I never dyed it and cut only to trim. I had a bad hair cut by a barber at 13 years old and i was done trusting. As my friends cut their hair as they aged, I wondered what age i might cut it? 60? 70? As i aged, i knew it was my choice. Ha! Ha! I went in the beautification center at COH and asked about getting my hair cut, She recommended the week after my first chemo. Ding! She cut it to above my shoulder to my neck half way. She did not take the notes down i wanted to save it, so I only got a 3rd of the length and not enough really to make a pony tail. Oh well. After my 2nd treatment, the hair started coming out in the shower and just by slightly tugging. For some, it was a head shave from the start before it came out or after like me. Instead, I had my sister go wig shopping with me and go to my house to cut it shorter. 3 inches all the way around. For the next week, I got baggies and slowly slipped my hair off my head as i worked from home. Vacuumed to remind me all the hair is not just the cats, but mine. I looked in the mirror and say my Dad and the absolute whiteness of my scalp. My hair was so thick no freckles slid onto the scalp. It is almost all gone now. For me, this allowed me to grieve the loss and let it go. I know have a ball jar with all the days of hair. Once it grows back, out goes the hair. I started getting use to the 2 caps i bought on headcovers.com. I have 2 wigs and two more to get. Honestly about that, I can not wear cute wigs, not the 100 Halloween wigs i have used for skits over the years, but wigs with styles i may sometime get to wear. Most are short to the shoulders or above.

Bottom line is we must be our own advocate. City of Hope has Doctor teams that work together. The MO, to the Surgical Oncologist to the GYNO surgeon. COH and other cancer centers have patient portals. My long tome personal friend javajana on this site told me there is a law that says our test results must be proved to us in a timely manner. Does your treatment facility have one? Does your Insurance Company? I believe my stress has remained low because every thing they tell me is posted same day or 1-2 days late on the portal as test results or visit notes and reports. New needing to be covered with me is in my MO appointments. I go on the message board and ask to get a question answered i have had after reading the report.

I ended up writing a short story, so i do not write snippets.TazMom --------use the questions people have added to ask. It is your body, and they need to get in there and see what is in your body. Your body and they need to explain what is best in your case to eliminate reoccurrence. KEEP US POSTED!!