Just diagnosed last night.

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chicago-37
chicago-37 Member Posts: 101
edited June 2014 in IDC (Invasive Ductal Carcinoma)
Just diagnosed last night.
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  • chicago-37
    chicago-37 Member Posts: 101
    edited February 2009

    I was just diagnosed last night.  Terrified!  Have had health problems (Back Pain, Shortness of Breath and other small issues) that have not been able to be identified.  I didn't even think I would have cancer.  I will be 37 next month, had breast pain and no lump.  A few weeks ago my doctor asked me to have a mammogram, went in and they took forever!  They thought I had a radial scar (I never have heard of it before) in my right breast, and calcifications in my left.  Last week had core needle biopsies of both breasts and got the results last night.

    Went to the hospital again today to find out more information, couldn't remember everything from the call last night, and have found out a little...but still very scared that this has spread and don't know how long it has been inside of me.

    The lesion itself has been measured using various imagining techniques and is probably around 3-4 cm.  The surgeon who ordered the biopsy (I have heard good things about him) didn't think (wouldn't guarantee) that this would be cancer.... 

    My left breast is fine, the calcifications are all benign.  The right that they saw the lesion in is IDC.  The information I have is:

    Non-palpable.

    The cores were 1.3cm in length, 0.5cm is the largest IDC measurement.

    Breast Markers:

     ER: positive (95%)

     PR: positive (95%)

     MIB-1: favorable (<5%)

     EGFR: negative

     HER-2/neu: positive (2+)

     FISH - has not been completed yet (should be done by the time I see the surgeon on Monday.)

     My husband is helping me research what all of this means, but I can't help but think that my back pain/breathing issues are metastatic, though my blood tests so far haven't indicated any abnormal liver/bone issues.

    I had more blood drawn this morning, will be going in for bilateral ultrasound tomorrow and then seeing the surgeon on Monday.

    Without knowing more, I am most worried about metastatic issues and the HER-2/neu positive finding.

    The only things that have given me some hope are that there is no lump and that the doctors I have spoken with whom have read my mammograms/ultrasound/MRI believe that this is treatable.

    The follow-up ultrasound is to make sure they didn't missing anything because the MRI had quite a diffusion which made it difficult to read.

    The initial mammogram that was read by my pcp seemed to show that it has not invaded the chest wall or the skin.

    The scary part is that I asked my doctor when I was attempting IVF if I should have a mammogram, and was told I was too young since there are no lumps.  And all of the hormones that I had with this being ER/PR positive...has it accelerated and put me more at risk?

    For 3 weeks now I have experienced a heaviness in both arms, the doctors are saying it isn't related, but have not had any testing on my lymphs (though there are no bumps/enlargements).

     

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  • lexislove
    lexislove Member Posts: 2,645
    edited February 2009

    chicago 37

    Did your onc mention about a bone scan and chest x ray? This is how they determin if the cancer has metastized. Or CT scan or MRI. Mention your back pains and shortness of breath to your onc. These scans / tests are usually completed at the time of diagnosis, ask about them. Don't worry about the Her2 thing, everything you read on the internet is old. Herceptin is now given and has shown remarkable out comes. 50% reduce risk of recurrence / 33% reduce in death. One thing at a time.

    I know your world is spinning. Come here for support, you will get a lot of good info here.

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  • chicago-37
    chicago-37 Member Posts: 101
    edited February 2009

    lexislove,

     Thank you.  I have not seen an ONC yet.  I had a chest x-ray in November that did not show anything and so far they don't think I need to have another one taken (I only spoke with the surgeon's nurse today because he is in procedures all day.)  The nurse also mentioned that with my clinical diagnosis they wouldn't recommend a bone scan, my husband is going to insist on it when we meet with the surgeon.  The diagnosis was delivered over the phone, so we have not had another conversation with the surgeon since he saw the original mammogram and ordered the biopsies.  We have not even talked with an Onc yet.

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  • mom_of_2
    mom_of_2 Member Posts: 347
    edited February 2009

    I am so sorry you are here. Take a deep breath and know that you are not alone. I know you are scared and you are on a roller coaster of emotions. There is so much to take in at time of diagnosis and info is coming at you from every direction. Best thing to do is ask lots of questions. There is no such thing as a dumb question and your doctors are there for you. I was diagnosed at 40 er+, pr+, her2+ I have been in treatment for 8 months and doing great. I had 20 weeks of neoadjuvant chemo before my mastectomy and now continue with herceptin (her2 drug) and tamoxifen. Over time all of your questions will be answered as far as your complete diagnosis and treatment plan. I was told in the beginning that I had cancer growing in me for at least 3 years...a few more days will be ok. Waiting is the worst part...all of the "what ifs" that flood your mind. Please consider asking the doctor for ativan or xanax to help calm you.

    Please keep us update...we will all be thinking about you!

    Love...Kris 

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  • AhwahneePrincess
    AhwahneePrincess Member Posts: 5
    edited February 2009

    Focusing on the positive ,,, I'm glad you found this forum and the wonderful people who will be by your side during this journey.  I noticed that you didn't mention the grade of the cancer.  My oncologist told me that in tumors under 5 CM, the grade is sometimes more important than the size.  Grade is based on a scale of 1-3 characterizing the cancer cells agressiveness.  Supposedly, a larger tumor with a lower grade is more desirable than a smaller tumor with a higher grade.  I would also ask the oncologist if you can have an ONCO-DX test.  It cost about $3000 but is covered by many insurance companys.  This test tells you if your cancer is more likely or less likely to reoccur.  As far as your other concerns, my heart goes out to you.  I was there 5 months ago.  Since then ... double mastectomy with immediate reconstruction and just finished 4 rounds of chemo.  Still standing and feeling great. 

    Keep us informed.

    Phyllis

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited February 2009

    Hi Chicago,

    I am so sorry you are going thru all this. Once you have all the results of your tests and have a treatment plan it will hopefully seem more in control. Let us know what you find out. Are you in Chicago? I am in Quincy, IL..Hugs, Mazy

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  • chicago-37
    chicago-37 Member Posts: 101
    edited February 2009

    Just got back from the surgeon.  Feel better, but don't know if I have false hope.  Here are new pieces of information since:

     FISH came back as no amplification, so the surgeon says the HER-2/neu positive is actually negative, he says the FISH is more accurate and what should be used.

    He says the cells are all very similar, though I don't know how he can tell from the biopsy.  My husband and I forgot to ask as we left the office.

    Size is a bit confusing.  Original ultrasound shows 2cm, but the MRI shows 3-4.  The surgeon says the cancer is probably around 2cm, but causing reacting around it which is why the MRI is showing 3-4cm.

     The surgeon says because of all of this information it is unlikely, but possible, to have moved elsewhere.  Blood tests show no problems with liver/bones.

     I have a script for a CT and Bone Scan which I will schedule next week.

    He is fairly confident that radiation will not be necessary and that if there is nothing found in the lymphs (which he is again fairly confident about) that chemo may not be necessary.

     I will wait for the removal/biopsy results and the bone scan/ct before I cross this, but if he recommends against chemo..should I insist because there is still a chance that some cells are hiding somewhere????

     Right now I am thinking to do a double mastectomy with reconstruction.  (Surgeon says he will remove the nipple and that reconstruction of it is very good.)

     I just don't want to have false hope and then find something in the bone scan/ct or lymps (once they are removed).

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  • smerf
    smerf Member Posts: 615
    edited February 2009

    Hi chicago-37.

    Sorry you have to be here, but you have come to a good place. Do you have a medical oncologist yet? They are the docs who deal with chemo, not the surgeons, so you will need to see one at some point. He or she will advise you based on the path report from your surgery.

    By the way, there are a lot of us Illinois gals on a thread called Illinois ladies facing breast cancer if you would like to join us.

    Hugs to you!

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  • smerf
    smerf Member Posts: 615
    edited February 2009

    PS...you can find us under the Help Me Get Through Treatment topic.

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  • smerf
    smerf Member Posts: 615
    edited February 2009

    Good grief, I can't get anything right! You'll find the Help Me Get Through Treatment in the forum index. Come join us, you would be very welcome, and there are many supportive women from the Chicago area there.

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  • Makratz
    Makratz Member Posts: 12,678
    edited February 2009

    Sorry you are dealing with this.  You should ask your ONC about a test called Oncotype DX.  This test will rate you on a scale of 1-100.  Based on your score, they can let you know if you need chemo and how effective it will be for you.  There are so many questions you will need to ask, write them down as you think of them or read about them on these threads.  There is NO DUMB question!  Your husband sounds very supportive, you will need him a lot in the near future.  Hang in there and come back and visit these threads often.  You can get a wealth of information here.  HUGS!

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  • navygirl
    navygirl Member Posts: 886
    edited February 2009

    hey Chicago, I'm so glad to read your last post, you sound much calmer and like you have a lot more information. You've already gotten the best advice, come here often- write your questions down as the come to you for your future visits - and PLEASE ask you doctor about the OCONO DX test...it combines about 27 or so factors and based on those and pathology will give you a good picture of your cancers likliness to reoccur. In a case where the benefits of chemo are not cut and dry, it can be a big help in deciding if it's right for you. I had high grade IDC and DCIS, +++, 1.5 cm tumor...because I had no lymph nodes they were not recommending chemo at first. When I got my OCONO score it was 50...which changed my treatment plan completely.

    Best wishes to you, I'm really glad you found these boards! Too bad every medical place doesn't include the website in the package they so readily hand out the diagnosis!

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  • Makratz
    Makratz Member Posts: 12,678
    edited February 2009

    Wow Navygirl.  Unbelievable that your score was 50!  I had IDC 1 cm ++,- and had a score of 15.  I'm glad you took the test, it could have saved your life!  Thanks for sharing.

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited February 2009

    Chicago!  i am sorry that you had to join us. If your cells all look similar then your tumor grade is probably low, which is good.  I know that this is all going round in your head and it is hard, but we just take it day by day.

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  • chicago-37
    chicago-37 Member Posts: 101
    edited February 2009

    The grade is I/III.  The thing I am most worried about is the size.  Originally the surgeon (based off of the ultrasound report) said it is 2cm.  The MRI shows 3-4cm, but the surgeon said the MRI is more sensitive and that the tumor itself is probably smaller...but the area surrounding it is showing up on the MRI because it is being bothered by the tumor.

    Does this make sense?  I am worried that the surgeon is down playing the whole issue and that the size is something to worry about.

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited February 2009

    My opinon only...if I had a tumor of that size I would want chemo. You really need to have surgery and then you and your docs can make the decisons then. They thought my tumor was quite small at first...maybe 1cm. I had surgery a week after it was found and my surgeon said that he could tell it had grown by just looking at my breast. (My tumor was visible from the outside). When it finally was removed it ended up being 3.2 cm, which shocked my surgeon. He said its often difficult to gauge an exact size and that sometimes its smaller and sometimes larger.So just wait til you know exactly what you are dealing with. Yours may be smaller than expected, I pray so. I am impressed with you, since you obviously are more concerned with killing that cancer than losing your hair and feeling bum from chemo. Putting your health first and dealing with the effects of meds later is a very wise choice in my opinion. Hugs, Mazy

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  • smerf
    smerf Member Posts: 615
    edited February 2009

    I agree with Mazy, that I would want chemo with a tumor of that size. Size is one of the criteria that your medical onc will use to determine your treatment. Chemo is very doable, and ladies here will offer much support and encouragement throughout the process. Come back often and let us know how you are doing.

    Hugs

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  • chicago-37
    chicago-37 Member Posts: 101
    edited February 2009

    Well, the size is driving me crazy...but I'll wait until the surgery.  The big decision, and what is holding up my surgery date is whether to do a double mast or just the one that has cancer.  Not an easy decision to make, but trying to sort it out.  I have a bone scan/ct coming up on Wed, so hopefully we'll find there isn't any metastasis.

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  • marshall2000
    marshall2000 Member Posts: 110
    edited February 2009

    chicago, I am new to this myself, but I want to say my thoughts and prayers are with you. This is the scariest time of my life and there have been some doozies, but this definately tops them all.My tumor is also on the large size, I am starting chemo first to reduce the size of the tumor so that a lumpectomy can be done(breast conservation surgery), 4-6 months chemo,lumpectomy and then radiation. I am hoping to keep the ta-ta's intact.    This forum is awesome, isn't it? xxxooo to all.

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  • AhwahneePrincess
    AhwahneePrincess Member Posts: 5
    edited February 2009

    Please do not wait too long on the surgery date.  I was originally diagnosed with Stage 0 Grade 1 non-invasive cancer (stereotactic biopsy) and waited seven weeks for surgery so that I could have the plastic surgeon I wanted.  After the surgery, I got a phone call informing me that I had Stage 2 Grade 3 invasive cancer.  No one knew how this happened.  The oncologist told me that I should not have waited that long with a Grade 3 cancer because it's angry cancer that can be unpredictable in its growth.  Do you know your grade?  If not, please find out.  With regard to single or double mastectomy, maybe I can shed some light.  If you have a high grade cancer or your ONCO DX score is mid range or higher, there is a chance that the cancer could return to your other breast.  I didn't want to spend my life worrying about this or have to do chemo twice.  I also based my decision on watching my next door neighbor go thru a single mastectomy.  She just finished her final reconstruction and had to have reduction surgery done on her natural breast so that it would match her reconstructed one.  Even after this, her surgeon informed her that the natural breast would continue to travel south while the rebuilt one would remian high and firm.  He said this would be problematic in the future.  I went to a seminar hosted by my HMO and viewed single and double reconstructed breasts with and without nipples.  After talking to everyone there, my decision was simple.  I chose to have a double mastectomy because I want to be even and visably the same.  It wasn't really all that painful (I had a Q-Pump) and the tissue expanders have been relatively painless.  I hope this helps.

    Please keep us informed,

    Phyllis 

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  • chicago-37
    chicago-37 Member Posts: 101
    edited February 2009

    It has been confirmed by another lab as Grade I.

    Surgery date set for next week.  Just having the bad side removed, will make decisions about the other side at a later time.

    Had a CT/Bone Scan:

     CT: No problems that I was not originally aware of.  Lymphs don't show signs of enlargement.  Size is possibly less that 2cm.

    Bone Scan: Was told it is clear for cancer, but the nurse who called with the results asked if I had bruised a rib recently.  Told her "NO," but she insists that this is not a potential sign of metastasis.  Should I be concerned, or are they down-playing something that could be a problem?!?! 

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  • Makratz
    Makratz Member Posts: 12,678
    edited February 2009

    I hope you are feeling better, Chicago-37, now that you have a plan.  Glad to hear you are a low grade too.  I know this still sucks, but at least you are on your way to get yourself healthy again.  Regarding your bonescan, I don't know but I'm sure someone else does.  They will post soon.  Best of luck with everything.  Have a glass of wine (or beer or whatever) and try to relax this weekend.

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  • sercsw
    sercsw Member Posts: 20
    edited February 2009

    Hi Chicago; You are in good company here. I've read all the posts and you have good advice. Its different for everyone; our stories might be similar but never exactly the same. I am 10 weeks post bilateral mastectomies with tram lap reconstruction for IDC IIa, PR/ER+ HER@-, sentinal node -. My Onco Type Dx was only 3! So no chemo, no rads. You might want to ask to have a PET scan to rule out any mets anywhere in you body. Luckly I've done well even though I am still healing (inwardly and outwardly.) I didn't mind losing my breasts and nipples as I chose life. Breast can be reconstructed. I was much like you in the beginnig -couldn't think of anything else, scared, trying to rsearch everything. It gets better as you go along ad as you feel more in control by making decisions you can live with and getting closer to treatment (whatever it is.) You're in the right place here. You're a warior now! Have a good fight and we'll be rooting for you!!

    Sue

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  • chicago-37
    chicago-37 Member Posts: 101
    edited March 2009

    After going back and forth...remove the bad one, or both... my husband and I finally decided to do both.  I had surgery just a few days ago (3/5/09).

     Got to the hospital at 5:45a, was finally taken into the operating room at 8a.  Was very scared.  I think I finally woke up and remember opening my eyes in my hospital room around 5:30p, where my husband and his parents were waiting.

     [From my husband: The surgery lasted from 8:30a to 2:30p.  The surgeon did not suspect any of the lymph nodes that were removed, nor the few he left in after inspection.  The removed tissue was sent to pathology and the reconstructive surgeon began doing his part around noon.  Since I have a small frame I opted for implants and had part of my latissimus muscle moved to my chest so that I did not have to go through the whole tissue expansion exercise.  The reconstructive surgeon has a method he will be publishing a paper on.  He is able to take a part of the latissimus muscle through the incision in my breast without removing skin from the back.  This reduces the need for stitches and scarring from the back.]

    My hospital stay wasn't very good because the morphine (only self administered 18 doses) made me extremely nasusish.  The anti-nasusa medicine made me even more nasusish.  Regardless to say I am very sensitive to anesthesia, so I slept most of Thursday night/Friday morning and woke up Friday late afternoon/evening.

    On Friday 3/6/2009 around 9p at night the surgeon stopped by with some news.  The pathology report had come back already (he expected it to be done early next week)  lymph nodes came back negative and the tumor was only around 1 cm (there were some feelers that made it look larger on the mri/ct but they are officially saying 1cm) staging me at stage I.  The other part of the news justified my decision on undergoing the bilateral operation; the left breast had lobular carcinoma in-situ (LCIS) found inside of it.

    I was discharged on Saturday 3/7/2009 in the afternoon, and have been home with my husband recovering.

     Today I stopped taking the pain medicine and have switched to just extra strength Tylenol.  My husband is clearing my drains and taking care of the incision, so I'm trying to relax and gain my strength back.

    We are hoping to see an oncologist in the next week or two, and have already left a message for the recommended one suggesting that we want to have the Onco Type DX test done.   I am still considering chemo since I want to eliminate as much chase of recurrence as I can.  (Still my biggest fear.)

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited March 2009

    Chicago_37 - So glad you are on the recovery road. Good luck with your Onco Type score.  Your husband sounds like a sweetie!

    Susan

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  • Makratz
    Makratz Member Posts: 12,678
    edited March 2009

    So glad to hear everything went well for you!!!  You must be thrilled.  Relax and recover. 

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited March 2009

    Chic..........I am so dag gone happy for you. No nodes is good, 1 cm is good......you have a great hubby(like mine) who cleans your drains and takes care of you. Give him a bug hug from me..And..you have us too. Hugs, Mazy

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  • chicago-37
    chicago-37 Member Posts: 101
    edited March 2009

    Finally received the full pathology report and the genetic test results.

     Right Breast : IDC with ductal and lobular characteristics, now grade II (originally biopsy was grade I).

     Left Breast : LCIS.

     Genetic results : Negative.

     Recovery is wearing on me.  Chest tightness/armpit swelling (and chaffing on garments).

    Things I am still worried about:

    1) Occasionally I cough up little spots of blood.  Occurred before the surgery, ct/chest x-ray show clear...but am still worried about lung metastasis.  People have told me this can happen with heavy coughs, but seems too frequent and happened before diagnosis ... so I'm afraid it might be in my lungs already.  (Also I feel short of breath at times...was told I have a slight case of asthma before diagnosis with BC..could it just have been hiding?)

    2) Right armpit (modified radical mastectomy) is extremely swollen and painful.  Hangs down when I raise my arm.

    3) Recurrence.  If it has not moved somewhere else yet....what is my likelihood of it coming back?  The surgeon keeps saying that this is curable...but is it ever really curable?!

    Appointment next week with the Medical Oncologist.

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  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited March 2009

    Hi Chicago,

    I am two weeks post op of a  bilateral mastectomy.  Just had my drains pulled last Friday.  You will be swollen under your arms I am now just feeling comfortable.  If you don't have any camisoles or a mastectomy gown call your hospital or a cancer support center where you can get one.  I purchases a couple of extra large sports bras with the zippers and wore those with the zippers pulled half way up.  They took quite a few nodes from you so you will be swollen it will go down.  Take your pain meds, seriously, don't just try tylenol.  I took darvaset with 600 mgs of Motrin to manage my pain and it worked very well.  Pain puts you into stress and you need to relax and sleep.  If your doctor has not prescribed an anti anxiety med ask for one or something ot help you sleep when you need to.  This is a big thing you've been through and you need to recoup.  No nodes it huge!  Don't worry about metastasis.  I was coughing up junk before and after my surgery.  If your xrays are showing clear then be calm.  Your numbers are good you are just feeling what alot of us feel after all this, what if? what if? what if?  Take care of yourself first that is the most important thing. 

    Hugging you tight

    Tina

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  • chicago-37
    chicago-37 Member Posts: 101
    edited April 2009

    Healing is going well, bruising is almost gone and swelling is greatly reduced.  I am currently doing pt/ot for ROM and hopefully soon they will attempt some scar manipulation.

    My biggest problem is still my right armpit (where nodes were removed) I do not have any swelling or seroma but the scar tissue has actually stuck the skin so that my armpit is folded a bit and I can't put my arm down without discomfort.  The plastic surgeon says that it should settle down and to keep pulling the skin to free it.  No matter how hard I or my husband pulls on this there is no movement.  I am going to ask the oncology surgeon what he thinks this week, but is this common?  Has anybody experienced this?  Again, there is no fluid / seroma / lymphedema ... just stuck skin in my armpit.

    Thanks.

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