IDC and I'm so lost
Hi --- I'm so glad I found this forum. I've read several of your posts and I feel less alone......but still very scared.
May 2013 I had my 1st "routine" mammogram & sonogram done. It came back with benign findings but they wanted a follow-up mammogram in 6 months. I asked my doctor and she said not to worry.
11/22/13 I had the follow-up mammogram & sonogram done. Next, they want me to have a biopsy. Doctor still says "don't worry".
12/23/13 I had a Stereotactic vacuum assisted breast biopsy of the left breast. Due to the holidays and my doctor being on vacation, things have been chaotic. I called my doctor's office to ask about the results. I felt something was wrong when I the office girl said she would call me back. I had a feeling......so, I wen to the place where I had my biopsy and picked up a copy. I got the same feeling as when I was told my brother had died in a car accident ---- completely overwhelmed!
Anyways, I feel very lost. My doctor is on vacation until Monday. The girls at her office have started the paperwork to get approval for a breast surgeont and referred me to an oncologist. I called the oncologiest to make an appointment but they could not until the pathology report is ready. I think I've driven everyone crazy so I have an appointment scheduled for Tuesday morning (1/7).
I'm very scared, worried and lost. I'm also upset because I feel that the biopsy should have been done back in May after my 1st mammogram. I feel like the cancer grew in those 6 months. I just don't know....................
Here are my lab reports (not pathology report). Please help me decipher them. I want to ask the right questions on Tuesday and/or know how serious it is.
Gross Description: Multiple cores of soft than-yellow fibrofatty tissue measuring from 1.0 x 0.3 to 2.0 x 0.3 cm
Material submitted: Left Breast
Diagnosis: Left Breast - Invasive Ductal Carcinoma
Size cannot be determined on core biopsies, but largest extent on a single core measures 0.9cm.
Tumor is present in multiple tissue cores and occupies 60% of specimen volume.
Histologic grade: Tubule formation 2/3, nuclear grade 3/3, mitotic rate 2/3 = 7/9; overall grade II/III (moderately differentiated).
Multifocal Cribriform Ductal Carcinoma in-stu, intermediate grade, component identified.
No lymphovascular invasion identified.
No necrosis or calcifications identified.
P63 and CK5/6 stains show loss of myoepithelial layer in invasive component and retention in in-stu component.
ER, PR, and HER2NEU will be performed and reported as an addendum.
SORRY for the long post. In addition to feeling scared/worried, I feel so dumb. I don't understand all of this.
Comments
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Wow, glsgls! What a way to find out you have breast cancer. That's so frustrating. I remember well how overwhelming and scared I was on that day that I found out. I will tell you that this is the hardest time, what you're going through right now. Once you have your team of doctors in place (oncologist and breast surgeon at a minimum) and have a treatment plan in place, you will begin to feel back in control. Once they are able to tell the ER, PR, and HER2 status, the treatment plan will become clear. I can only wish you the best as you navigate through the beginning. You were right to press on about getting an oncologist appointment. It doesn't matter if your primary care is out until Monday. He will not be an active part of your breast cancer treatment, but will, of course, be kept in the loop with your treatment. Try not to google much. You really don't have enough information right now and that can do more harm than good. There are a lot of scary statistics to be found out there, but I will tell you there are just as many positive statistics. It's just hard to weed through the information at the begining. What matters is you and your treatment plan. Make sure you're comfortable with your team of docs. They will be your new best friends for a little while. Just keep putting one foot in front of the other, and try not to let your mind wander too much. Easier said then done, I know. Please know we're all here for you and want to know how you're doing, so please keep us posted. In the meantime, please feel a big cyber hug from me!
Kathy
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And cyber hug from us as well.
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glsgls - welcome to these boards a lifeline, but oh so sorry that you are part of our 'club' ugh:(
Breathe, the waiting is the hardest...our minds just go on overload...so don't rehearse something you may never have to do. Stay focus on today.
Use your wait to your advantage. Find out what services your BC center offers and avail yourself of them...support group helped me select my team and reinforce that this is all doable. I did drop in on the RN at the center to discuss and received great info and links. Stay at this site...don't visit Mr Goggle...ohmyivegotcancerimgoingtodie. It's not easy but you can and will make it. We will be in your pocket (((squeeze)))
Now breathe, blow some bubbles, wiggles your toes in the grass, make a snow angel, soak in all the family, friends, and things that make your heart and spirit soar!
Join us in the 2013 IDC sister warriors or start a 2014 IDC sister warrior thread...you are not alone. PS my bs said that it took 3-5 years for my IDC at 0.8 cm to be seen so you've got time and your team is on it!
(((Hugs)))
Cindy
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glsgls - I'm so sorry that you have this & what a way to find out. Everybody is scared and worried when they are diagnosed - moreso in most cases than once you have a plan in place. Do not, however, feel dumb because you don't understand this stuff - of course you don't. One thing you can do is call you PCP and ask for some anti-anxiety meds if you feel like you need them. It's great that you found this board - I wish I had before treatment began. The women her can answer so many questions and really make things a lot easier all around. Treat yourself well while you're waiting to see the docs - you just got hit with a very hard diagnosis for anybody to hear, you deserve to do whatever you need to do to distract yourself (within some reasonable boundaries : )
((hugs))
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Thank you ALL for your words of encouragement. I've been reading your
posts but every time I tried to replied and started crying. SorryToo
many things happening fast & slow! I wish it was all over.I still don't know how spread it is or stage, etc. I feel like I'm the
one pointing out results to the doctor's office. I called the lab
directly to find out if my pathology report was completed with ER, PR and HER2
data. He said he could not tell me anything. After talking with him
a little (he probably felt sorry for me), he said "results are
pending" ......something about wanting them to be correct and not rushing
them. I had by biopsy done 12/23. Is this odd? Why am I
getting the reports in "parts" instead as a whole pathology
report. Is this normal?To complicate and frustrate matters more, I called my doctor's office just
to inquire if they had the pathology report. The conversation with the
lab guy left me suspicious. The office girl said "yes....had it for a few
days". I asked if I could get a copy. I went over to the doctor's
office to get a copy. It's the same lab report I have that
states more results will be reported as an addendum. Where is this addendum?Then, I noticed addendum letter from the Radiologist dated 12/23/13 which I
had not seen before. This is what it says:Pathologic - Radiologic Correlation
Pathology Diagnosis: Invasive ductal carcinoma (moderately
differentiated); Multifocal DCIS (intermediate grade)Pre-Biopsy Assessment:BIRADS 4.
Concordance of Pathology with Radiologic Images:Concordant.
Recommendation:
1. Advice MRI
Breasts to more accurately assess extent of disease (unilateral vs bilateral,
multifocal, multicentric, regional spread) PRIOR to definitive treatment.2. As indicated from MRI additional second-look US with
potential biopsy site(s).This addendum does not have the ER, PR or HER2 data.
Is this normal? Why is the
radiologist requesting more biopsies? Do they suspect the cancer is more widespread than originally reported---which I have no idea what is "originally reported". Has anyone had this before?Thank you for caring
Gloria
ps: I finally told my boss and a couple of co-workers (only my sister knew prior). They were shocked. They don't want me to go to doctors here in town. They suggested I tried to push for other facilities even though it will require some driving. Apparently, the surgeon my doctor's office wants me to see is a general surgeon and my co-workers don't have any faith on the oncologist facility either. These referals have been done by my doctor's staff since my doctor is on vacation---have not seen her yet. Do you think I should push for a better facility?
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Hi Gloria -
I think that it is pretty common to have a second biopsy done of another site - given that you have positive results in one place, they want to be very careful to look more closely at other areas that they might not have otherwise found concerning. It also helps to guide treatment. It is good that they want to assess everything carefully (check off all the boxes so to speak before determining a treatment plan). I had an RI guided biopsy done of the 'good' breast after the original finding & it turned out to be B9. I think it's also common for the hormone receptor tests to take longer - they first want to make a determination about whether it is or is not invasive etc. before moving on to more in depth tests).
Your choice of surgeon and oncologist are important. You want to know that you are getting the best treatment possible - generally speaking most people would suggest a breast surgeon over a general surgeon. In larger facilities you tend to have a 'team' and they consult with each other to coordinate & best manage your care - your team might include a medical oncologist, a radiation oncologist, a breast surgeon and a plastic surgeon (for instance).
It is both fast and slow at first. There will likely be a number of different tests, this is good because the tests are to make sure you get the best treatment. Right now, you have to remember to stop and take some deep breaths and take things one step at a time. And be good to yourself. And stay off of Dr Google. ((((hugs)))) -
I am so sorry you find yourself here! Hugs! I also was told I had a benign lump and to come back in 6 months. When I got back they immediately did 5 core biopsies on it and it was cancer. I was so angry they told me to wait 6 months. Nice to know I had cancer growing in me for 6 months because they missed it.
As far as doctors, you need to find doctors you are confident in and comfortable with. I personally went with a surgeon that only dealt with breast cancer and I also chose a plastic surgeon that only dealt with breast cancer/reconstruction. I would see what options you have. I drove 1 hour plus to see my surgical oncologist and my plastic surgeon. My oncologist was closer to home.
Good luck! Hang in there..the beginning is the hardest part.
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glsgls I had a scare 4 years prior to diagnosis. All said it was nothing. I did continue to get mammograms but it was never followed up with an ultra sound. 4 years later I had this 6.5cm very fast growing, aggressive tumor. It's been 3.5 years since diagnosis and I'm doing just fine. Most of the time breast cancer doesn't grow as fast as you would think. Your fingernails grow faster.
Hang in there. It's a lot of hurry up and wait. Once you have your plan then things start to move quicker than you would think. I had to wait 6 weeks post biopsy to get surgery but they wanted to start chemo pretty quickly after that.
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Hey Gloria, 'bout to go to bed & I wanted to stop back in and send you some extra hugs. Hope you have some sweet dreams tonight.
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Gloria ...this is truly the hardest time. My only advice at the start would be to seek opinions at a NCI facility. You will find a team of doctors who specialize in breast cancer treatment . I drove 4 hours to the closest NCI hospital (after reading the same advice on these boards) and I was seen by a breast cancer surgeon, a oncologist and a plastic surgeon in the same appointment. . They worked together during my surgery and treatment. They offered resources for everything, even discounted hotel rooms for cancer patients. I still travel 4 hours for my 3 month check ups.
I'm not saying there aren't excellent doctors in other places but it never hurts to seek 2 or even 3 opinions. You're going to be overwhelmed with information. Please try to have a second set of ears at your appointments. I missed half of what was said at every appointment in the beginning.
Ask questions on these boards ....you will find valuable information and much support from all of us. Take a deep breath and know we are here for you. Sending a big hug your way......
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