Just diagnosed with IDC

Hello, and welcome to the club no one here wants to belong too.  However, you will find many who will open their hearts and comfort you, and you in turn will gain much information.

Your oncologist will have the definitive answers for you...as you know, each tumor is as individual as we are. Alot of things will determine whether or not you will need chemo or radiation. Some of those things will be what your hormone receptors show, and if you are Her2 positive or not. I had a very small tumor, had a mastectomy (my choice), and didn't have chemo or radiation.  What I have learned that if I had had my diagnosis NOW, I would have had chemo because of the Her2 status. (I am er/pr+ and Her2+). Two years ago, they didn't give Herceptin for tumors as small as mine. Things move very quickly in the cancer world!

I hope this helps a little.  More ladies will be along shortly with more information.

Jennifer

 I ALSO WAS JUST DIAGNOSED.  GOT THE PATHOLOGY REPORT TODAY AND IT IS IDC. I CANNOT UNDERSTAND VERY MUCH OF THE PATH REPORT AND THE DR I WENT TO FOR THE RESULTS IS A REGULAR GP.  I GO TO A BREAST DR TOMORROW AND WILL GET MORE INFO.  THIS WHOLE PROCESS HAS TAKEN TWO WEEKS AND I AM SO DEPRESSED AND SCARED BUT AM GLAD TO AT LEAST NOW KNOW.  I APPRECIATE SO MUCH READING ABOUT OTHERS.  WILL BE GRATEFUL FOR ANY FEEDBACK FROM ANYONE.  I HAD ANOTHER SPOT IN MY THE SAME BREAST THAT WAS NOT MALIGNANT BUT LOOKS LIKE IT COULD BE ( TO ME)  AM THINKING THAT MASTECTOMY IS THE WAY TO GO.  THANKS FOR ANY HELP...............MARTHA

I had what is called surgical biopsy with wide excision, lumpectomy, it's the same.  Trust your doctors.  The IDC was 6mm and I had to go back for re-excision to get clear margins because they found DCIS 7mm which did not show up on the mam.  My scars are very thin and I feel great.  That will be 2 years in March.

Thanks so much for the info.  I know the WAITING and not knowing is the worst part.  I do believe that I and ther rest of us can survive this and do it well but again the tx plan will certainly help. Thanks again.... Martha

Cloud,  If you go to the main part of the BC.org site, there is smoe help in understanding your path report.  It helps alot and will help you understand better what the onc is saying.

Hi Pam456,

As you are finding, this is an uncomfortable place to be in the beginning when trying to get test results and make treatment plans.  Hang in there, you will learn alot.  The biopsy report can be a little different from the final surgical report.  Depending on the mammo and sonogram results you will probably be given an option for lumpectomy or mastectomy.  Survey results show that a lumpectomy plus radiation has almost the same success rate as a mastectomy.  One thing to consider is the amount of tissue that will be removed and how much breast tissue you have to begin with - what will the breast look like when they are done and do you want to deal with radiation?  I had no choice because between the tumor and malignant microcalcifications, 3/4 of my breast would be gone including the nipple.  what would I do with 1/4 breast?  i also wasn't keen on doing rads.  So I had sentinel node biopsy plus 8 regular nodes removed and mastectomy.  The final report shows the hormone receptors and size better which will help them to decide if you need chemo, etc.  Try to get a frozen section done with the lumpectomy if you choose that.  That means that a pathologist will immediately check the margins to see if they are clear and if they need to take more they will do it then and save you having to go back to try again for clear margins.  The smaller the size of the tumor the less likely it is to spread but there's no guarantee.  After your surgery they will meet with you and explain the path report.  Get a copy for yourself so you can refer to it as you learn more.  Along with path report and baseline cat scans or pet scans they will stage your case and go from there with recommendations for chemo.  I keep a book full of all labs, path, scans, etc.  Lots of choices ahead.  Let me know if I can help more. 

I am so grateful for everyones feedback and so appreciate it.  It seems the more I talk to Drs. the lesss I know.  I know I have IDC and that I have two spots one for sure cancer.  And that I am hormore positive so will have to take an anti hormore drug.  I dont know the exact size or if it has spread or if I am her positive.  I feel like I know nothing.  I keep reading and will have an MRi nextg week which I am told will show how large more clearly and if there is anything in the other breast.  It is true that you dont know till you hae the lumpectomy or mastectomy?  Any feedback would be really helpful.  Thanks, Martha

i just tead your posting and you and I do sound really similar.  I dont understand either .  How can I decide what to do without knowing.  Although I am told  that the MRI will show more and could tell if something is in the other breast and how big the inital site is.  I also want both breasts gone as I sure dont want to ge back soon and have more surgery.  And I am also told that the hormore positive thing is good but dont know about the herceptin thing.  Do you know that yet??  The waiting is agonizing.  keep in touch..... Martha                       

Thanks for the info.  Not sure why you had the lumpectomy first and no one has told me to do so.   I have had all the tests first and then the surgery.  Why?  I am seeking another opinion and will have toi wait alltogether after diagnosis month and a half.  And that worries me....I am her negative I just found out and would even like to have some surgery as that would tell m more.  Thanks for the feedback.. Marthapw

Hello Ladies,

I cannot put into words how reassuring it is to know that someone, somewhere, is feeling like I am right now.  As someone who has never "blogged" before, I find this to be quite amazing.

Aprilgirl, you kind of cleared a few questions up for me, and I hope that you did for Martha as well. It seem we really aren't having things done "backwards" as I had originally thought.  We are having all the testing done first.  But what I continue not to understand is how they can plan for surgery when they truly don't know what they will find when they get in there?  What if one of your Sentinal Nodes is positive?  Do they know immediately?  Do you sign a "waiver" when you go in that says depending on what they find, they will ultimately make the choice?  Why do you have to wait for that final pathology report, when by then, your surgery is done?  Martha, do you feel like the time frame you are working under is sooooooooooo........long?  I won't have the results of all these tests until Feb. 20th - almost two months after I found these four horrid lumps.....

Tammy

Hi Tammy-

I too have IDC and my heart goes out to you. I (and ALL here) can so relate to the millions of questions while your mind is in a state of shock. I was fortunate (weird to say-there isn't too much good fortune in any of this, surely not in the beginning) to have been diagnosed very quickly. I was wondering if you have access to a breast center where you live? Instead of going to many offices for all the testing, it all is done and coordinated in one place. Not only that, they also treat you on that all important emotional level, with the understanding that this is a devastating diagnosis. As such, they answer many of your questions before you even think to ask. If so, perhaps you can speak to someone there?

I decided on a bilateral mastectomy for several reasons. As someone already mentioned, breast size and tumor location may factor into your decision. Mine was same as the other poster- there would be nothing left anyway. The other had "non specific" foci which was just enough for me to decide I did not want to be living with a potential timebomb.

I feel for you...deeply. It's by far the most overwhelming experience I've had when a month after my annual mammo, I was getting my breasts removed and looking at chemo since I am HER2+.

God Bless,

Ellen

Tammy, as far as planning for surgery, in my case, and I think most cases, they have a pretty good idea of what they will find.  That is why they do the ultraounds, MRI and my surgery was actually wire guided which means I had a very early mammogram the morning of surgery where they inserted wires on the outside margins to guide the surgery (that was a wierd mammogram let me tell you!).  As far as your nodes are concerned, my surgeon prepared me going into sugery that they will start with the sentinel node biopsy.  In surgery, if the node or nodes did not look clear (frozen and cut in surgery and looked at under a microscope) THEN then would procede and do the entire node dissection.  I believe I did sign a document stating that this was the plan.  

Your surgical meeting will review what they have found on the MRI, and your biopsy results which you have.  Both teams I met with recommended lumpectomy with rad - no discussion of chemo until I had my surgery done, tumor staged and oncotype score.   Chemo was always talked about but not specifically until we had more info.

Ellen is so right - my heart goes out to ALL of us thrown into this.  Like Indenial60 said, we have to live in this surreal world, in my case, care about the stupid field trip forms and girl scout cookies - meanwhile you feel like a time bomb and everything is in slow motion.

It does get better.  You will have a plan.  It does seem like Feb. 20th is far away, but I really was assured that my tumor had been undetected for a while, and a few weeks longer before surgery were fine.  Can you push for a sooner appt?  FYI - I had a MRI rescheduled due to having my period on that day - they need to wait until you are mid cycle or something as it effects breast tissue.  That was a disappointment, but they fit me in fast after that.

Ellen has another good point - do you live near a breast center or cancer center?  Has it been hard to coordinate your tests?  

 I hope that I am not giving you too much information.  Once your test are done, your surgeon will have a very good idea of how they will get rid of the tumor.

Susan

Susan, thank you for your answer,  This irritation makes it hard to go to work because I am always squinting , moaning or moving my arm up and out...doesn't look too professional when you are trying to change bandages and teach others to take care of their wounds.

The fact that after 2 months you are no longer experiencing this odd outcome gives me the incentive to work on my patience and tolerance levels.

Re: oncotype has not been mentioned and if it was I didn't hear it.  I'd call my surgeon "flash" but believe that name is already taken.

Where did you go for the pre op and surgery? When I first knew it was cancer I wanted Sloan-Kettering, but it would be tough logistically for my husband and so I went local.. Can't say I was OK because my name should be murphy..MRI injjection separated before any dye went in,  Nuclear med machine said the isotopes never traveled (a fun3 hour treat) the guide wire insertion was confusing: techs talking about babies, vacations, I in a chair with my breast in a waffle pan and a doctor I can't see because of my position says "hello, I'm Dr. Dillon" and gives  little novacaine and inserts the wire and leaves while they run 2 or 3 more digital images.  In surgery they discovered that the isotope hadtraveled to the node after they injected the blue dye so the easily spotted the lymph node.  The radiologist who put in the chip allowed the Dr. Dillon to find the spot to guide the wire.  I guess I am upset because I have never treated patients with so little comfort, care or information as I RECEIVED.  

So, bottom line :cancer is out of me (PHEW!!)  and now I wait again for the next step.

I want to get on with my life, play ith my grandkids, take care of my husband and my mother and help my daughter prepare for her wedding.  Cancer at this point is pretty low on my worry list, but I want the treatment to start so the treatment will be done.

I did say I would work on my patience, didn't I...maybe tomorrow

thanks for you help

karen 

Thank you all for all your information - it truly helps.  This "cancer thing" has been something of a mess from the very beginning - have mammogram in Oct. - find four palpable lumps at Christmas, have ultrasound and core biopsy, during which, the radiologist told me I had nothing to worry about - everything looked fine, then, three days later he calls me on my classroom phone ( I am a teacher at an alternative high school) and proceeds to tell me he was wrong, that I have cancer.  He didn't even have the common courtesy to ask if I was in a position to talk or whether I had someone around to help me emotionally after the phone call......nothing...He was the same radiologist who apparently missed something in Oct - on the other breast I might add.  That's why I need another core biopsy.   I got sent to a local breast surgeon who came with a marvelous reputation and was treated like a walking breast - nothing more - just a breast with cancer.  So I understand how awful the medical field can be until you find a competent, caring, individual who you can trust.  It is so important.  Nurses truly are the foundation of the medical community. I wouldn't dream of treating anyone as abruptly, rudely, insensitively as I was treated.  Thank goodness for Roswell Park - Buffalo's Cancer Center - they have treated me like a REAL person, not just a walking cancer.- Tammy