Diagnosis with IDC

marijen

Go to profile then diagnosis and go through the steps. You only have to answer what you know from your reports. Then if you have questions come here and ask. You can list them. Don't forget to save you can change or fix later

Englishmummy

Marijen - Have you already started hormonal treatment? That can shrink a lesion......as chemo will/can; whether you did or not, I would mention it to either the BS or the Oncologist, perhaps both just to be sure - they are only human and although we don't like to think about it, they can miss things. I don't believe mammogram is very accurate as far a measurements (or much else if I am honest) but someone step in and correct me if I am wrong? I don't know much about the new digital mammograms, as I had my first and last one done in May on a regular machine - although, my BS says they are way more accurate. I have read some lesions regress by themselves but that is rare....

I will follow this thread so I'll get notification when you ladies post. I'd hate to think that you feel lost and lonely.

Grem - good and bad days will follow. It is rough at the start but I am now 4 months out and things ARE better. Tears and fears are all part of the process, don't deny yourself either -but to quote a lovely BC.org lady, TallnTerrific, "don't be afraid, be in charge." Be your best advocate or invite someone to do it for you if you feel unable to speak up (it is perfectly understandable), your hubby, a son or daughter, a good friend, someone you trust to get the very best for you. I had no CT, Pet or MRI scans as my BS did not feel it warranted with the stage and type of BC I had....others may beg to differ but all Surgeons/oncologists/RO's have their own way of doing things and they are all within the guidelines. Stage 1 has a great prognosis; you may be like me and not even need chemo - I had no chemo, no rads but I did opt for a BMX as I am only 41 and had it in both sides, I have no regrets - there is no point wondering what they'll find in surgery, as until after the surgery, you just won't know - it is likely that your BS will order an oncotype dx test which will allow you the confidence in your chemo decision. Did you have a digital mammogram or just a regular radiographic one? The digital are far more accurate so my BS says .....

Could your Dr prescribe something for you? I am not a fan of blocking things out, but just something to help you cope with the coming weeks if that's what you need. I promise you, you will find a peaceful spot where you can function but perhaps a little help in the meantime may be good???

BarredOwl

Hi Marijen and EnglishMummy:

InTshire's case, she had no treatment prior to surgery. The difference observed was between the predicted size from imaging and the actual size determined from the lumpectomy. It turned out that the pathology report from the lumpectomy contained an error regarding dimensions. After review of the pathology slides and correction of the pathology report, the imaging and surgical sizes were indeed congruent, and the imaging had indeed provided an accurate estimate.

Marijen - Am I correct that you have not had any surgical procedure yet? (Neither lumpectomy or surgical biopsy (under anesthesia)? You have been treated with endocrine therapy for six months prior to surgery, which is scheduled for next week. This is what you said before about the diagnosis elsewhere:

"It says on my original report - no invasive component identified on specimen. But I also have a turmor in my armpit, so it is metastatic. Six months ago she called it DCIS and Metastatic Breast Cancer. Stage IIIA because it's matted."

It is very difficult to figure out what is going on in a complex case like yours, because we are just fellow patients, and we cannot have a clear/full understanding of all testing, relevant reports, and the expert advice you have received. In another thread, members are guessing that your diagnosis is IDC with DCIS, which is very common. What is less common, is that there is some indication of regional disease in the lymph nodes (matted nodes, possible sampling), meaning that invasive disease is present somewhere or was present at one time, even though no IDC has been identified in the breast yet. They may find an area of IDC when they do a lumpectomy, or if not, then it would be a case of an occult IDC ("T0").

The upcoming surgery seems to be intended to remove any remaining DCIS and IDC (if present) in the breast. Imaging taken prior to treatment with Femara may be less informative than more recent imaging in this regard. Please ask the surgeon to explain to you what imaging he will be relying on to guide him during the breast surgery, and why that imaging is the most relevant for guiding surgery (e.g., versus prior imaging).

BarredOwl

marijen

Femara shrunk it but either the original size is wrong or the new size is wrong.... I just want to make sure the BS knows that there might be an error. I guess I should send a note but I hate to sound like an anxiety ridden patient : ) He is a very good surgeon - Leading Expert in Breast Cancer/Neoplasms.

BarredOwl

Hi Marijen:

Don't hesitate to contact him, and raise the question. I am not really sure what is going on, but possibilities include that there actually is some inconsistency (in which case it should be noted and accounted for in the strategy), or perhaps he will be able to reconcile the information for you, or provide an explanation of why certain information is more relevant or controlling for the purposes of surgery. You should not be seen as an anxiety-ridden patient just because you want to understand your diagnosis and surgical strategy. You are engaged and seeking understanding or clarification.

BarredOwl

marijen

Good Morning Bared Owl - I also posted at DCIS with high grade.

Sounds to me like you've got it down what's going on in my case. Why do I have to always be so complicated (complex). ; )

So I will send a short note to the BS nurse I guess. But before I do - prior to surgery/same day I will have a MA PREOP PLC LOC WIRE BRST and RT W/Wire, NDL PLCMT & MAMM. Maybe that will cover it? Also pre-op tests on Monday where I can comment as well.

Sorry I see I called you Barreled Owl yesterday - oops! Eyes blurry is my excuse.

BarredOwl

Hi Marijen:

That sounds like it might be a mammography-guided needle-wire localization procedure? However, do be sure to include that in your question list to be certain, and so you are prepared and understand what will be happening.

On the day of my surgical biopsy (which was essentially a lumpectomy), before the surgery, they used seated mammography to visualize the area of concern (calcifications in my case), inserted a needle into each area of interest, and threaded a wire through the hollow center of the needle (under local anesthetic). Then, the outer needle was removed, leaving the wire in place to mark the area to be removed later by the surgeon ("wire-guided localization"). They placed two wires. Accurate localization is important to achieving clean margins, and hopefully avoiding the need for a further procedure(s) ("re-excision" or "resection") to obtain clean margins.

http://www.ucsfhealth.org/education/biopsy_for_bre...

Again, please confirm what is planned in your case.

I wish you and Marie good luck in your upcoming surgeries!

BarredOwl

keepthefaith

Marie, sorry you are having such a rough time with your DX. I remember that I felt so much better once the tumor was out of my body and I knew what my treatment plan was. Remember, each imaging technique has it's faults and none of them are perfect. Some work better for certain types of masses than others. You will get through this. Take some walks, try to stay busy. If you need meds, ask your Dr. I hope your surgery on Monday is uneventful and you have a speedy recovery! I would recommend wearing an open-front sports type bra for a few days and get a small pillow to use between your set belt if you need to. The waiting is hard, but you know someone is always here for support. Feel free to vent, cry , scream, whatever! ((HUGS))

Englishmummy

(waving at) BarredOwl.

Marijen - Always ask any questions of your medical team - they are supposed to be working for you, who cares if you seem like an anxiety ridden patient?Perhaps you are, perhaps you aren't - More important is that you are satisfied with the answers to your questions. That is good news if Femura shrunk the lesion, right?

Good Luck with your surgeries - wishing you speedy, uneventful recoveries. Keep us posted.

marijen

Hi Barred Owl, It's not clear to me what I should confirm and to who?

BarredOwl

Hi Marijen:

You could send a short note to the BS's nurse to ask for the full names of all procedures that are scheduled for you. Ask if she can provide any written materials explaining these procedures to you in layman's terms. Also ask if any written information will be provided to you regarding preparing for surgery (when to stop eating, limits on liquids, what not to take, etc.)

You should contact the surgeon if you have questions about how the imaging relates to the upcoming surgery, and what imaging information will guide the surgery for localization purposes. If the surgeon responds to written inquiries, that is one approach. My surgeon only dealt with me by phone, so I would leave a message requesting a call back. If by phone, write down your questions in advance, and take notes during the call. At the end of the call, recap your understanding of the take-home message. This gives them an opportunity to correct any possible misunderstanding.

I will be going off-line for a while.

BarredOwl

marijen

Ok, I sent an email to BS nurse who is helping me on the imaging sizes. I have all the pre surgery and post surgery paperwork. Will let you know! Thx.

marijen

I called the surgeon's office today because I never got an answer.

marijen

Well I guess I'll just call tomorrow and try to get one of the radiologists. I hope they're not all on vacation! Gee whiz. Cancer is out of control.

Englishmummy

Maijen, just wanted to let you know Barred Owl is off line for a few days. I think calling the RO is a great idea. Will be thinking of you Monday.

marijen

Thanks! This is so frustrating. It would have been nice if they made sure someone was assigned to each patient. In a perfect world

marijen

I found this:
http://www.biomedcentral.com/1471-2407/13/328

Measurement of tumor size in IDC - sonography underestimates, MRI most accurate..

marijen

Finally got an answer why imaging measurement didn't match up.

Radiologist uses the same plane (angle) for each of the images on ultrasound so that they are more accurate. Being that ultrasound allows you to get multidimensional measurements, it can be difficult when we are trying to measure a comparison. When Dr. completed your ultrasound report, she went back and measured the breast mass images from May in the same plane as she measured it on October. She did this to provide the most accurate results for surgical planning.

(seems that I'm the only one posting at IDC - oh well.)

Case closed : )

Englishmummy

Good News, Marijen, at least someone got back to you and you have an answer.

Just so you know, it is quiet because gremx started this thread within the IDC Forum - here is the link to the actual forum and you can pick a topic under it to post or read. https://community.breastcancer.org/forum/96 - you can also start your own thread there too if you need?

I just don't want you to feel deserted or that no one is listening. Hugs, L x

marijen

Hi Englishmummy, thanks for your reply. I don't see much going on anywhere for days.

So they claim my IDC "area" is only 4mm that's the good news.

Waterstreet

You will get used to waiting to talk to people.

Well the surgery is behnd me now. Not keeping anyhing down yet and there is a large incision on the breast and a large one under the arm. I am waiting for 11/3 fo post op to find out what all was done. They moved it up from 11/9 so the wait is shorter. He is telling me I have to keep things down or he will have to put me on IV. I am trying all crackers, breakfast drinks, etc. I have to keep my meds down to control my BP which is usually high but since the surgery its running low with a fast heart rate. I will check in again soon.

Englishmummy

Shirley - Sorry you are still feeling crook -have you tried coconut water? It tastes a little weird but I give it to my children when they have upset stomach/vomiting and it works for them really well. Just an idea. Hope things are on the up (or staying down if you prefer:) soon.

Marijen - how did you fair?

marijen

Englishmummy, now sure what you are asking? Surgery tomorrow. Or you mean IDC people. Still not much activity. Read my post at DCIS with high grade - I'm aggravated.....

Englishmummy

Oh, I got confused on the date - good luck tomorrow. Sorry you're aggravated, nothing worse than that...I'll pop over and read your post now. Update us here when you can after your surgery.

Brutersmom

Gremx003, It is really hard when you are going through the whole diagnosis process. I cried a lot to. This diagnosis came at the totally wrong time for me. In reality the stress of the diagnosis was worse than any of the treatments. I was told originally I had a 1.7 cm amorphous area by the radiologist. He was not able to confirm anything with a ultra sound. No lump could be felt. The surgeon said it was really larger more like 2.1. He had me totally scared. After the lumpectomy, which I had done twice because the surgeon did not get clear margins, I learned that the tumor was not as large as suggested by the mammogram because part of it was a benign fatty necrosis. Hang in it will get better do you have anyone who is there for you right now.

gremx003

Surgery is behind me, it was yesterday.  triple lumpectomy, removal of 4 Lymphnodes and will get results from pathology next Tuesday.

Doing pretty good...dizzy but eating...on pain killer.  Still all wrap so no idea what it looks like.

marijen

Hi gremx003, wow you went from not knowing anything and being to lost to being done with it already. I'm impressed. Missed you. Let us know the results. How big are your incisions? Sounds like you're going to make a good recovery.

gremx003

Marijen, thank you.  I was thinking about all of you guys yesterday.

I have no idea about my incisions, I am so wrapped up in bandages for 48 hours.  Will let you know the results next week.  They were supposed to remove only the sentinel lymphnodes so not sure why 4 but will find out I guess.  Yes everything happen very fast, now waiting for final diagnosis.

Thank you for all the encouragement.

I am trying to find your post at DCIS with high grade but can't see it ??

Waterstreet

I found out after my grandson got sick that I can keep down crackers so I am taking meds with crackers for now. My DIL had some coconuts and we were going to try your fix but I had to come back home to get away from two sick grandchildren who have strep throat. I cared for the oldest all day yesterday. We didn't know it was strep throat till today when they sent my other grandson home and we took both of them to the doctor. Yesterday the oldest had fever 102. DIL is not going to school till kids are well, so I just hope I don't get it.

Take care I am keeping all of you in my prayers.

BarredOwl

Hi all:

I've been away for a few weeks. I have seen Marijen and Waterstreet in other threads, and moving towards next steps in treatment. Gremx003, hope you are healing well. Good luck to all of you.

BarredOwl