Newbee with IDC

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tideknott
tideknott Member Posts: 54

This is my first post so I hope I do this right!  I have always has fibrocystic dense breasts, so when I found a new lump several months ago, My first thought was here we go again, ultrasounds, MRIs and they always are nothing.  So I decided I would just watch this one and not run to the doctor. The time came for my routine physical and I had the Dr. feel the lump. he ordered a comprehensive mammo and it came back, 1cm spiculated mass bi-rads 5 and highly suspicious. I was recommended to a surgeon and on my first visit he suggested going ahead with a lumpectomy.  On Tuesday, Oct 19th I had the surgery done and on the 20th he called and told me it was IDC.  I will see him for post op on Monday to discuss the next step.  He said he wants to check my lymph nodes.  I feel like I'm all out of step for the normal person.  They don't have the receptors back yet.  I'm confused and have to wait until Monday. He did say he got good wide clean margins. It just seems confusing to me because everything I have read says, mammo, biopsy, surgery with checking lymph. I am all out of wack.  Any suggestions for the questions I need to ask him Monday would be greatly appreciated.

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  • tideknott
    tideknott Member Posts: 54
    edited October 2010
    This is my first post so I hope I do this right!  I have always has fibrocystic dense breasts, so when I found a new lump several months ago, My first thought was here we go again, ultrasounds, MRIs and they always are nothing.  So I decided I would just watch this one and not run to the doctor. The time came for my routine physical and I had the Dr. feel the lump. he ordered a comprehensive mammo and it came back, 1cm spiculated mass bi-rads 5 and highly suspicious. I was recommended to a surgeon and on my first visit he suggested going ahead with a lumpectomy.  On Tuesday, Oct 19th I had the surgery done and on the 20th he called and told me it was IDC.  I will see him for post op on Monday to discuss the next step.  He said he wants to check my lymph nodes.  I feel like I'm all out of step for the normal person.  They don't have the receptors back yet.  I'm confused and have to wait until Monday. He did say he got good wide clean margins. It just seems confusing to me because everything I have read says, mammo, biopsy, surgery with checking lymph. I am all out of wack.  Any suggestions for the questions I need to ask him Monday would be greatly appreciated.
  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited October 2010

    I start with this website -- look at the links on the home page (like "understanding breast cancer" and "treatments and side effects") -- that will probably generate some questions of your own.

    Clean margins are good, you're on the right path.  I'm not sure why they chose the steps they chose but getting the lump out with clean margins is a good start. When I had my lumpectomy they took some lymph nodes... did they not do that for you, or are they just waiting on results?  Sorry, I just wasn't sure from what you posted. 

    My first questions were very basic:  what type (you know that already), what stage, what grade, the HR/PR/HER stuff.  

    There are tons of questions and I'm sure others will have more suggestions but part of it will stem from the details of your diagnosis.  Chemo may not be needed for you but if it is, there will be lots to ask about that (port?  what kind of chemo, how often, what are the SE's and how will they help you manage them?, and on and on). 

    One thing that helped me a lot was to take a notebook with my questions and write down the answers.  Also, if you have someone you feel comfortable with going with you, sometimes it's good to have a second set of ears alone.  Everything for me was so sudden, happened so fast, and was so overwhelming. 

    If they aren't answering your questions in a way that you understand, keep asking.  Remember, too, you can go for a second opinion if that would make you more comfortable.  It really helps to have a bs and oncologist that you trust and that are supportive.  The nursing and other staff is important, too, because you may see them more than your drs.

    I know this isn't much help but I'm sure others will have some good thoughts for you.  Best of luck and a big hug.

  • tideknott
    tideknott Member Posts: 54
    edited October 2010

    Thanks for reponding Carol, when the BS called me yesterday with the results being IDC I asked about the HR/PR/HER and he told me he hadn't gotten the receptors back yet.  Just wondering how long that takes? I am 2 days post op, so I hope to hear that soon.  Originally he decided to do the lumpectomy instead of bioposy because there was much doubt with the bi-rads being 5.  I wonder why he didn't do the lymp at the same time, except the lump was on my inner breast.  The mass was only 1 CM but he took a lot of my breast.  I am a D cup and would guess I am now a C on that side.  I see him Monday and he wants to do the lymph next week. They did the lump in an outpatient facility and he said the lymph need to be done in the hospital???  I just feel that I am not on the normal path for diagnosis.  I assume he will send me to an onocoligist.  At least I do know that it was positive.  Thanks again for your well wishes and hugs I need them

  • lago
    lago Member Posts: 17,186
    edited October 2010

    Usually they do both at the same time mainly so they don't put you under twice. But I do understand that maybe because you didn't have a biopsy first they didn't know what they were dealing with. No need to remove lymph nodes if it's not needed.

    It takes at least 1 week to get the path report if I remember correctly depending if they do it on site or have to send it out… HER2 status can take longer because they have to send it out to a special lab.

  • Morgan513
    Morgan513 Member Posts: 664
    edited October 2010

    I had the sentinal node surgery after the lump was removed.  

    I had a core needle biopsy which came back negative for cancer but decided to have the lump removed anyway.  

    After the pathology was done found out it was cancer and I had to have a re-excision or mastectomy (my choice) and the sentinal node biopsy.  Not knowing where I stood with the lymph nodes played a role in my decision between a lumpectomy and a mastectomy.  So I decided to do a lumectomy with radiation just in case some of the nodes were positive (which they weren't luckily).  I felt that if something came back in the future, I could still have a mastectomy.  Yes, convoluted reasoning but it worked for me!

    Good luck!

    Lorrie 

  • M360
    M360 Member Posts: 356
    edited August 2013

    Tideknott,

    I had mammogram, then ultrasound, spoke with four doctors (I have other medical problems that I could not have radiation.), they with two weeks had a fine needle biopsy, that came back IDC, 1cm but grade 3 and ER+,PR+, were 100%, then I had one lab say HER2 positive, I had may results in four days.  Then I was told that surgery and mastectomy would be my best bet given my other medical problems.  So they did the mastectomy, and sentinel node biopsy, and Onc test all at the same time.  Then I got an infection immediately, because doctors didn't listen to me and my Immunologist and felt it would be okay, it wasn't I had to spend a whole 7 days in the hospital.  While in the hospital they told me nodes(5) were positive, and the HER2 was questionable it was 2.5, Onc was 20.  So they said while I was in the hospital anyway they had to do another surgery for auxiliary nodes, under arm and side.  So five days after iv antibiotics they did the surgery and wah lah more cancerous nodes.  In the short time from discovery of mass and actual surgery it grew to 3.9cm.  After three weeks I did chemo ATC from June through September.  But I had complications with health so they stopped in September.  Now they say I need more tests etc.  It was so different than most women with the same cancer and the steps they took with them.  What I find it should be what is best for each woman, it's sometimes similar steps, and medication but with others it's a whole different ball game.  Don't worry.  Search your own heart and mind and do whatever it takes to rid yourself of this cancer.   You must do the steps and treatment in your time frame and what you feel will work best.  A lot of women have chemo first then surgery and some vise versa like my self.  It's really up to the way the doctors and cancer center work where you are getting treatment in.  Dr. Oz said last week that if you can drive to a larger city with labs and doctors who do at least 5 a day and treat thousands a year will be the most up to date with how to treat and what will work with your diagnosis.  I hope this helps at all.  Keep knowing that this too will pass and you can always speak with women on this site and friends and family, I will make it through this a stronger woman.  I learned more from women who had come before me than from any doctor or nurse.  Sisters in the Same Time Frame if you read that site for IDC you will see all the different ways people are being treated for the same diagnosis.  It might give you some deeper insights to which way you want to go with treatment.

    Take Care!

       M 

    Take Care and Good Luck 

  • 2Hands4me
    2Hands4me Member Posts: 484
    edited October 2010

    Big hugs coming your way!

    Just as no two cancers are exactly alike, no two pathways are exactly alike. Yes, you will often see surgery and lymph nodes checked at the same time. But with a birads 5, it's nice to know the cancer is OUT. I wouldn't have wanted it in me any longer, or to wait while they scheduled everything for the hospital. So, one step at a time. Once the lymph nodes are checked, you'll know more about further treatment. Please ask about arm exercises after surgery. Different doctors have different plans for how much, and how soon, they want you moving your arm. But you don't want to let your shoulder get too stiff!

  • tideknott
    tideknott Member Posts: 54
    edited October 2010

    Thanks for the replies. I am feeling a lot more in control and appreciate all of your help.  I am 4 days post op on the lumpectomy and must say I feel little pain.  The bruising is already yellowing and fading.  I should give you some background about myself.  I am 55 years old, still working as a hairstylist after 37 years, I have been married to my DH for 30 years, I have 2 children.  Carl is 24 and a civil engineer, we lost our daughter, Laura 4 years ago to recreational drugs.  Not addicted but experimenting.  I lost my best friend of 25 years to IBC 2 years ago and spent 9 months with her for every appt, chemo and radiation treatment. I had to be the one to tell her she was going to lose the battle.  I have decided I am not going to let the l surgeon here do my lymph.  I am going to try and get into Moffit Cancer in Tampa. That is only 1 hour from me and they see this stuff every day.   Sarasota does not have a BS only GS.  I loved the dr. and the incision looks great, but it's my boob and I want to go to a specialist. Thanks everyone you've helped more than you know.. Beckie

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    tideknott,

    I'm not far from you. I'm in punta gorda. I also decided to go to moffit, and am very glad I did. We don't have andy BS in this area either. It's almost 2 hours for me. I'm close in age as well, 57 married for 34 years.

    I'm glad you're recovering well from the lumpectomy. Are they doing a SNB? It is done in the hospital.  You do want a specialist to do that.

    Karen

  • tideknott
    tideknott Member Posts: 54
    edited October 2010

    Karen, the GS here wants to do the SNB but I am going to ask him at my appointment Monday to refer me to Moffitt so I am assuming they will do that there.  I really would like to have a PET scan  to see if it is anywhere else in my body before I have the SNB.  As big as Sarasota is you would think we would have a BS but we don't.  

    By the way I graduated from Charlotte High in 1973 and my sister in 1972.  Have you lived in PG long?  I have 2 sisters still there.

    Beckie

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    Beckie,

    I have lived here 10 years. Came from Chicago area, so as you can guess it was quite a change fro me. Love it here.

    I am suprised no BS in our area as well. If you want the name of a good surgeon PM me. My Dr. didn't have any suggestions, I did my own research. I was lucky a friend of mine I work with had just gone throught breast cancer the year before, and she has been a great help.

    Karen

  • tideknott
    tideknott Member Posts: 54
    edited October 2010

    I finally got my receptors back and I guess it's good news ER+PR+/HER2-. The tumor was only 1.1 CM and the margins were clean with the closest being 1.2 CM.  I called Moffitt Cancer Center today and the Dr. I requested had no openings for several weeks.  His assistant emailed him several times and he agreed to take me as an add on at the end of the day tomorrow, Oct 27th! She was so nice and called me several times to make sure it would all work out.  Her name was Debbie and that was the name of my best friend who died from IBC 2 years ago.  I think she was looking out for me. Next SNB, hope and pray for clear nodes.  But the fight is on!  Radiation will just be a bump in the road.  thanks everyone, for your support.  Will write more tomorrow after my visit to Moffitt.  

  • paintedlady
    paintedlady Member Posts: 252
    edited October 2010

    Hi Tide

    Glad you had an appointment with a doctor a Moffitt. I just visited a BS from Moffitt. He is going to operate on me on Nov. 3 rd. I am very impressed with this doctor (Dr. Kiluk). He is very knowledgable and has a wonderful, caring personality.

    Best of luck to you.

  • tideknott
    tideknott Member Posts: 54
    edited October 2010

    Best of luck to you also, that's my Dr. too!  Isn't he great.  My SNB is scheduled November 15th . Keeping my fingers crossed, praying or what ever it takes that they are negative and the Gate STAYS CLOSED! Beckie

  • tideknott
    tideknott Member Posts: 54
    edited November 2010
  • tallydiver
    tallydiver Member Posts: 36
    edited June 2013

    A. Right Breast, core biopsy:
    - Invasive Ductal Carcinoma of Breast. See Note
    - Nottingham Histologic Score: 4 (Grade 1/III)
    (Tubule Formation: 1; Nuclear Pleomorphism: 2; Mitosis: 1)
    - Tumor Size: 10.5 mm in greatest linear dimension on one core.
    - Lymphovascular Involvement: Not Identified
    - Perineural Invasion: Present
    - Focal Ductal Carcinoma in-situ (DCIS) of breast (<1mm), cribiform type, low nuclear grade, without necrosis.
    - Rare microcalcifications are associated with invasive carcinoma.

    Note: Immunohistochemistry for SMMHC demonstrates loss of a SMMHC(+) myoepithelial cell layer in the invasive component, supporting the diagnosis. Additional studies for ER, PR, and Her2/Neu are pending, and will be reported as an addendum.

    UPDATE:
    ER: Pos
    PR: Pos
    HER2: Neg

    Thanks so much Renee and Cuetang for your posts and concern. We were at Shands all day yesterday and met with Dr. Spiguel from Shands and found that she thought that it is a nice littel slow grower and that as long as no sentinel node involvement was observed during the lumpectomy, then the Intrabeam administration of high dose radiation on the site of the excised tumor, should be all that is necessary. She uses a 5cm orbit shaped device to zap with radiation during surgery. Of course, all of this is great news, so far. Rad performed a MRI with some contrast for the nodes to identify any other unforeseen hotspots. Waiting this morning for results...It seems that she is a conservationist and I am very hopeful that this will be our eventual course of action. Here is a link regarding her past experience....

    On the way to the appointment, I called the Moffit Center in Tampa. Dr. Cox is no longer practicing (Doing mostly research) but I had read that Dr. Kiluk was a good one down there.
    Paintedlady and Tideknott both seem to like him and I had read other good reviews. The only thing that is a little bothersome is that he cannot see her until next Thursday. So another almost 10 days before he can take a look. I am having Shands send the slides, films and all results down to Moffit and asking them to fax a copy for our folder as well. (Per the “just diagnosed - get prepared” post. (great stuff) Now we just have to wait on the MRI and to meet with Kiluk. Do you think 10 days more is a problem? I know she would like to get this thing out of her.

  • tallydiver
    tallydiver Member Posts: 36
    edited June 2013

    Update:  There were problems with the MRI yesterday (Technical Difficulty) and she has to go back tomorrow morning for a repeat MRI Bi-Lat with contrast media to light up the nodes.  Getting all folders together and permissions for record release from Shands.  Images and slides...

    Here is a little video from Dr. Kiluk.  He seems like a competent sounding doc.

  • tallydiver
    tallydiver Member Posts: 36
    edited June 2013

    Still waiting on results.  MRI's Wed and Thursday.  Doc was to call last night after surgery, still no call this morning...waiting on the call sometime this morning, hopefully.  She has dense breasts and expecting some false (hopefully) positives.  You all were right..the waiting is the worst part.  She is nervous this morning.

  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited June 2013

    I am new. I had my lumpectomy and SN biopsy on June 13th. I am still uncomfortable at the two incision points. I am still waiting for my margin report from the BS. Is the pain normal at this stage? I thought I had an infection due to redness on breast. Nurse stated it was a dye reaction, but I still have concerns. Any thoughts?

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