just got biopsy results for idc

Options
rodeogirl
rodeogirl Member Posts: 52

hi everyone, reading through posts to get my head around this disease.

my surgeon appointment isnt for 2 weeks so researching my options. i have 2  stellate lesions 2.4 cm and 2 cm, dont know about nodes yet but i know these results, and  surgeon said mastectomy.

ER 2/3+ POSITIVE IN MORE THAN 66% OF TUMOUR CELLS
PR 1/2+ POSITIVE IN 50% OF TUMOUR CELLS
HER-2 IHC NEGATIVE
KI-67 5%

after researching i think its a slow growing one ?

ive read about chemo and radiation and how it works on fast growing cells, but also how some of the harder cells to kill can be made stronger up to 30%. I am a sook,I  think im dying on strong atibiotics lol, even when they put the needle in for bone scan my heart rate was through the roof.  seems chemo is offered for nearly all breast cancer even when they cut it all out, so how do they know if the survival success rate is due to the chemo? the patient may have already had it all removed, and maybe its the chemo or radiation that is causing more cancer down the road due to resilliant cells.

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    Welcome to Breastcancer.org rodeogirl. We're sorry you have to be here, but glad you found us!

    Besides learning from other members here at the boards, you may also want to take a look at the Breast Cancer 101 section from our main site, which is designed to help you sort through all of the information on our site to find what is more relevant to you right now.

    Also reliable information on IDC — Invasive Ductal Carcinoma where you'll learn about symptoms,
    diagnosis, treatment, etc.

    Possibly of interest too is the Oncotype
    DX Test

    We hope
    this helps!

    The Mods

  • rodeogirl
    rodeogirl Member Posts: 52
    edited October 2014

    thanks for replying, I will take a look :) is my post deleted, cant find it

  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2014

    Not everyone is offered chemo. You might want to ask to have your tumor sent for the oncotypeDX test after surgery. It is used to help predict which tumors will respond to chemo. Several factors are looked at when considering chemo. For me , I was presented with statistics given all my tests results. The decision was left up to me, whether to do chemo or not. Your results are worded different than mine, but it does sound like you have a slow grower(as did I).  The decision making part was the worst for me.

  • rodeogirl
    rodeogirl Member Posts: 52
    edited October 2014

    Thanks coral, did you end up having radiation or chemo ? do you know if slow growers respond to those treatments? 

  • rodeogirl
    rodeogirl Member Posts: 52
    edited October 2014

    i think i somehow blocked my own post :P

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    Hi rodeogirl, Topic unblocked (easy to do by accident). Sent PM on how to check for blocked Topics, and unblock them if your choice, under "My Profile". If you have problems like that, please feel free to contact us.

    The Mods

  • PoppyK
    PoppyK Member Posts: 1,805
    edited October 2014

    Rodeo,

    It's normal to be anxious about your diagnosis; try not to be too hard on yourself. When I was first diagnosed, I was so frazzled that I couldn't concentrate or think straight. I was concerned that I wouldn't be able to make good choices regarding my treatment options. Because of this, my doctor prescribed anti-anxiety medication. If you think the medications would help you, contact your doctor. There are many, many women on the board who are taking them. BTW, I am a person who rarely would take any sort of medication.

    According to the results you posted, your cancer is slow growing. This means you will have time to think and make good decisions. ER+,PR+,HER2- is the most common and what I have, too. There are many treatment options. Are you going to a breast surgeon/surgical oncologist? I would highly recommend it. In most cases, both lumpectomy or mastectomy are offered as treatment options. In few cases is mastectomy the only option. There is a thread on the board that includes what to consider when trying to chose between Lx or Mx.

    Once you meet with your surgeon, you will likely be referred to a Radiation Oncologist and a Medical Oncologist. You will learn so much from them about what options are available to you. I was offered many different treatment options along the way. The doctors explained the risks and benefits of various treatments and explained why they recommend certain treatments. Chemo and radiation are to kill any cancer cells that may not have been removed during surgery. Not everyone needs chemo.

    I know you are in a difficult spot right now. It's all so new and there are so many unknowns. I am sorry you have to deal with this, but am glad you found the board. There are so many helpful, kind people here to help you!

    Poppy

  • Ridley
    Ridley Member Posts: 634
    edited October 2014

    rodeo - sorry you have to be here, but it's a good place to get info and to vent,

    You will know much more about your options once you meet with your surgeon.  As I learned, the disease is actually a big collection of diseases and treatment depends on so many factors,

    In my case, I ended up not having chemo because of the oncotype score primarily and didn't have radiation either, because of having nothing in the nodes, having a mastectomy, etc.  Both your pathology and your own choices can impact your treatment plan,

    Good luck!

  • zha-an
    zha-an Member Posts: 31
    edited October 2014

    rodeo girl

    I was recently Dx w IDC too. You will get thru this! Your Ki67 score is really low...that's a really good thing since low proliferation means slow growing. Curious why your Dr is only talking mastectomy...is it because you hv 2 tumors? Consider getting a 2nd opinion before making your decision. Since you were considering breast reduction I'm assuming that it's not because your breasts are too small to get a good cosmetic result!

    getting the Oncotype Dx testing done will give you much needed info. If it comes back with a really low score then breast conservation might be a good option. At any rate...you have time to get all available info before making a decision.  we are all here for you. You will get thru this! Remember, the only dumb question us the one you don't ask.

    zha-an 

    .

  • rodeogirl
    rodeogirl Member Posts: 52
    edited October 2014

    Hi everyone, thanks so much for helping me. I met the surgeon once, I have b cup size breasts and the two lesions are 7 cm apart. So I think thats why I am getting the mastectomy. I had a bone scan which showed  a suspicious mark above opposite side elbow, I still have to get that double checked. When I first found out I thought it was going to be in my sternum, because I have had pain there for years, I was very it glad it didnt show any on  the scan. My biggest worry is if it is slow growing and has spread further, maybe better off not nuking it and aggravating it.  I am 45 years and have a 5 year old son, been on the pill most of my life, ditched it as soon as I found out.  2 long weeks till the surgeon gets back :) your posts have cheered me up. I think us women get the wrong end of the stick and also we are livers, that is, we have to go through all the bullshit in life so we can learn and grow. If any good at all comes from this, It is that I have become more aware and empathetic to everyone around me. x

  • NJC63
    NJC63 Member Posts: 11
    edited October 2014

    I had a routine Mammogram last Oct. that did not show anything abnormal other than some dense breast tissue (at least that is how that radiologist read the results -there was actually a mass present in those results as the new radiologist comparing the two said it was the fact that the mass from the prior year had grown slightly that led him to order additional testing).  It was also at that time I had noticed a brown sticky discharge coming from my left breast when expressed.  I talked to my gynecologist about this condition and she said it was nothing to worry about (WRONG - I have since learned that a dark brown or bloody discharge is ALWAYS something to worry about).  I went blissfully about my life not thinking anything was wrong, cancer being the furthest thing from my mind.  Then I started to talk to other women about this sometimes embarrassing breast discharge and they were all horrified as this seemed like something that should not be.  I started doing research online and this is where I found out that this was a symptom of either ductal carcinoma or ductal papilloma.  You can bet I was on the phone with my doctor immediately - new insurance and new doctor.  This new doctor jumped and ran with a bunch of blood tests and a new Mammo.  Blood tests came back normal.  Then came the phone call I had been dreading.  We found something in your Mammo that warrants another more detailed Mammo and an Ultrasound.  3 days later I was having another Mammo and the Ultrasound (this was last Saturday) - before I even left the center I knew that there was a mass in my left breast and had a biopsy scheduled for Monday morning.  Was told the Biopsy results would be back in 3-5 business days, so when I got a call the next morning Wow...That's really all I could think when I got that phone call.  Just found out I have IDC, Grade 2 on Nottingham Scale, mass is around 1.2cm, initial diagnosis is Stage I (although I have been told all of that can change once they get you open and actually perform the pathology on the nodes and breast tissue removed).  They did not yet have back any of the information regarding the estrogen receptors, etc..  

    Have already met with a surgeon, who wanted me to have lumpectomy scheduled in less than 4 weeks.  However, his surgical calendar is booked until Dec. 3rd... so all I can do is sit here and wait, worry, and wonder.  I don't get how the doctor can feel the sense of urgency and say he wants something scheduled in under 4 weeks but his scheduling staff can just say well... he doesn't have any available appointments.  Frustrating - because what I want is the cancer out of my body.  However, I feel better after reading a number of these posts as it appears that this is a slow growing form of cancer despite the sense of urgency I have to get this out, a few more weeks will give me more time to research.  

    Things I have learned so far.  

    1. Stay positive - when found early this is one form of cancer that can be beat.  
    2. Change your diet immediately and cut out all sugar from your diet - cancer feeds on sugar.
    3. Prepare yourself for not knowing what direction things will go until after your surgery to remove your mass - they just won't know until they can see it first hand.  
    4. Learn patience - take slow deep breaths before lambasting someone on the other end of the phone for not understanding how urgent and critical this is for you.  
    5. You are not alone - there are so many people out there who are willing to listen, hold your hand, and help you get through this crisis in your life
    6. Everyone will have a different experience as we are all different and unique individuals - what works for one person will not work for another 

    I am just starting this journey myself and have so much to learn, still feels like I am in a Twilight Zone episode and am experiencing this almost as if it were another person going through it.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2014

    NJC, there is nothing evil about sugar in moderation and it does not "feed" cancer, and that is a vast oversimplification. Maintaining a healthy weight seems to lower your risk (and recurrence risk) somewhat, and some studies seem to indicate a low CARBOHYDRATE diet helps, but it is more maintaining a healthy blood glucose level & weight. You will also find here that there are plenty of healthy, thin, vegetarian runners here who got cancer anyway. Diet is not a magic bullet, so don't make yourself miserable in the middle of other unhappiness thinking being rigid is going to be the fix.

  • coffeelatte
    coffeelatte Member Posts: 209
    edited October 2014

    Melissa, I like what you said, "Diet is not a magic bullet, so don't make yourself miserable in the middle of other unhappiness thinking being rigid is going to be the fix."  I sure have been there, done that and it was not helping me to get healthy, just sad.  Everyone has to find their own personal program that makes them feel good. For me, trying to be so rigid and perfect gave me something to focus on and "control" when I could not control cancer, but it made me feel like I was sickly and not me.  Eating some cookies made me feel normal. I am trying really hard to not beat myself up over it.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2014

    Coffeelatte, when the docs misdiagnosed me as having cirrhosis (with no risk factors and normal labs) before they finally figured out I had a massive ovarian tumor, they had me on diuretics and a low salt diet, which of course wasn't helping anything, but making me very miserable. The night before I took myself to have paracentesis I ate a whole jar of olives & half a jar of Vlasic pickles. Hah! Made me feel better.

    It is really more a matter of the bread and the crackers and the potatoes and the juice, etc., etc, etc...Not sugar per se.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2014

    NJC - So sorry for the terrible news. Your diagnosis is pretty close to mine, IDC 1.1 cm, grade 2.  I know it is all really shocking right now. A month and a half wait is no fun, but I've seen it on these boards. Any chance you could call the schedulers and tell them to put you on the wait list for cancellations?  Don't be too rough on yourself. Who knows what causes this crap. If you need help with the anxiety, talk to your docs about antianxiety meds. They were made for times like these. Take things a step at a time. It helped me to join the surgery sisters thread for the month I was having surgery. Glad you found us. Someone is here 24/7 for information and support. 

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    NJC63-

    Hello, and welcome to Breastcancer.org. We're so very sorry for what you're going through, but we're glad you've found your way here; it's a place of great support and information for women such as yourself. We hope you'll find some answers and comradery in this community. Stay positive, you're in our thoughts!

    The Mods

  • Bcky
    Bcky Member Posts: 167
    edited October 2014



    DCIS/IDC Stage 1 Grade2 .Today was confusing at the hospital. They made my lumpectomy
    operation appt. for the 31st. Had me talk to the radiologist. Said my MRI showed no
    signs of the breast cancer spreading to the lymph nodes. Yet they took
    blood and told me I have to go for a PET Scan on the 21st. They found
    two spots on my ribs. The surgeon is saying it is probably nothing
    because I have no cancer in my lymph nodes. I am frightened. I am just
    taking tranquilizers and resting this weekend. I ordered Chinese
    delivery instead of grocery shopping. I don't want to go anywhere. I am
    so frightened. I live in a state where if I have a terrible terminal
    cancer I can have assisted suicide. I will do that. I will live out the
    cancer long as I can than assisted suicide. If it is just a lumpectomy
    and radiation and removal of my ovaries I can do that but if I have
    terrible cancer through and through I will not treat it. I will wait
    until it is time to die then I will with PHD help. I am trying to cheer
    people up and not tell them how bad it is because I don't want them to
    be bothered or it will weigh me down. I have a terrible feeling I am
    really really sick. More so than anyone knows right now. I thought to
    make peace with my life and maybe my possible death due to a terrible
    cancer problem this weekend alone.I think the surgeon was saying the spots on my ribs were nothing to worry about so that I would not worry before the PET scan results. I have a feeling I am in deep deep cancer trouble.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2014

    Bcky - I can tell your thoughts are all over the place. That is so normal. This diagnosis is ABSOLUTELY terrifying. The fear is what is leading you through all those scary thoughts. Stage ! grade 2 is very very treatable. As your doctor said there is NO reason to think it has spread. Try not to go to the dark places, it will only bring you down. You don't have to be strong for anyone. Just be your authentic self. On Monday maybe call your nurse navigator and see if there is a social worker you might talk to. They do an excellent job of helping us sort through the terror. I was much like you in the beginning - my counselor set me straight immediately. See if there are a couple things you could do this weekend to get your mind off cancer, like a loud action movie, or a good long walk. Getting your endorphins going will really help you find peace of mind. I'm sorry you have to go through this. There is no short cut to feeling better, but you will with time, I promise. Until then take things step by step, minute by minute if you have to. If you need someone to talk to feel free to PM me anytime. Gentle hug. 

  • PoppyK
    PoppyK Member Posts: 1,805
    edited October 2014

    Bcky, Hang in there! You are in a very frightening place right now. Do you have friends and family near for support? Use them for support. Don't try to cheer them up; let them support you! They can be a big help. I told my friends that I just needed someone to talk to, not to make everything better or solve my problems.  Also, try to keep yourself busy doing almost anything... as long as it doesn't involve cancer stuff!

    Many, many "normal" things show up on MRIs, so don't dwell on those spots. They have no reason to believe that your BC has spread to the nodes... this is fantastic news. You have time to make treatment decisions! Lumpectomy with radiation is an excellent treatment option! That's where I started. Unfortunately, my node was positive, so I am undergoing chemo. Chemo has come a long, long way... and isn't anything like they show it in the movies.

    I'm sorry you are so scared. Every test gives you more information so you can make good decisions about your treatment. Call your doctor and tell them exactly how you are feeling. Your doctor may want to give you something else... as opposed to tranquilizers.

    Farmer Lucy gave you excellent advise!

    I hope you feel less anxious and frightened soon!

    Poppy

  • rodeogirl
    rodeogirl Member Posts: 52
    edited October 2014

    I have IDC , 2 LESIONS, 2CM AND 2.5 M. They did biopsy and its in the glands.just sent my admission papers off for mastectomy and arm pit removal. im not even scared of the cancer, its the anesthetic i lose sleep over lol. It will be around a 2 1/2  months from diagnosis to operation. i have learnt to chill out about the whole thing, i realised we all have to go one day and just do the best i can for my family right now :). survival rates are good and go for many many years, be positive and stay healthy as you can with lots of raw veges and fruit. I have so much more energy now ive been taking care of me for once. xx its a wake up call to appreciate our planet and family

  • Sunflowercat
    Sunflowercat Member Posts: 177
    edited October 2014

    rodeogirl, I'm sorry to hear about your diagnosis, but now that you have answers you can focus on your treatment plan and that will help you feel somewhat in control.  Continue to take good care of yourself.  I wish you the best of luck with your surgery.  You've got lots of support here, so don't hesitate to lean on the lovely ladies here.  We understand what you're going through.  When is your surgery scheduled?

  • NJC63
    NJC63 Member Posts: 11
    edited December 2014

    It has been a rough two months since my initial diagnosis. Have had 3 surgeries in total as of today - see my doctor tomorrow for a follow up on my surgery from last week to determine if I am okay to proceed with radiation treatment or if another surgery is needed. First surgery was lumpectomy where they removed the 1.2cm mass, and consequently pathology also found a smaller .3cm mass in the tissue sent to the lab that was close to the margin (no lymph node involvement - so Woot!!). This led to me requiring a 2nd surgery to clean up the margins. Results of that pathology led to a 3rd surgery for yet another dirty margin. I have been doing quite a bit of research - helps to have a daughter and son-in-law in the medical profession - and know that multiple surgeries are sometimes needed to get all of the cancer. I will be totally honest, despite the number of surgeries I feel very fortunate to have had little to no pain during the entire process. The only really annoying and painful thing that I have found is that I have developed AWS - Axillary Web Syndrome or Cording as it is sometimes referred to since you develop these rope like cords that travel from the armpit into the arm making it painful to lift your arm. This started about 2 weeks after my surgery and I have been performing daily exercises 5 times a day to help stretch the area - definitely getting better and doctor assures me it will completely go away within next few months.

    Hoping tomorrow brings some good news and I can heal a little more before starting additional treatment - have not yet met with the oncologist so not sure what that treatment will be. One day at a time!

  • rodeogirl
    rodeogirl Member Posts: 52
    edited December 2014

    hi everyone, i had the surgery and they also removed 20 nodes 13 with cancer. got through that hurdle, my cancer is 66% Estrogen and 22% progesterone positive. my score is 6 out of 9 it has a ki67 of 5% but high grade gland formation scored a 3 and nuclear scored a 2 .

    great to understand how each cancer is different based on these scores, mine is like a sniper who slowly takes out his target very sucessfully, other cancers are stupid and multiply like crazy but have no brains lol. so we now have to go to war with grenades as ammo. scary stuff.

    i was wondering if anyone can give me their feedback on the chemo, how bad is it really and what is it likened to. Ive been told im in for the lot.because of the 13 nodes and two separate cancers around 2 cm each. But because they were joined with a single strand they now class it as an 8 cm tumour. Having no boob dosent worry me at all, its sort of cool, dont even intend on wearing a bra, maybe get some cool t shirts made with a crosss on the left side rest in peace haha.

  • PoppyK
    PoppyK Member Posts: 1,805
    edited December 2014

    Hi Rodeo, Glad to hear from you after your surgery. You really learn a lot about YOUR cancer from the path reports! Do you know what your chemo protocol will be? I just completed CT chemo. Your age and overall health make a big difference... so does your chemo protocol.

    You might consider making your diagnosis public to make it easier for those of us on the board can better answer your questions.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited December 2014

    Rodeo, many get through chemo with minimal side effects while others are miserable. So much depends on the chemo cocktail you will be receiving. Again, depending on which drug(s) you may want to consider a port. I have small difficult veins to begin with, there's no way I could have survived the drugs without my port, which I loved and hated at the same time...but it's worth it.

    There are lots and lots of threads on the various kinds of chemo which I'm sure you will find useful. I have Cytoxen and Taxotere and successfully used Cold Caps. I am in a public industry which would immediately scare my client's if they saw me without hair so I chose PCC. They were expensive and an exhaustive routine to go through but well worth it.

    Good luck and keep us posted.

    Amy

  • Bippy625
    Bippy625 Member Posts: 890
    edited December 2014

    Hi rodeo,

    I just finished chemo, it can be done. Some have no to minimal SE and others like me, have moderate to severe. It ranges everywhere inbetween. Coping is key, you can find all the tips here. Pm me anytime, I will offer any help I can. Taxotere can be rough. I wish you the very minimum of issues.


  • LizA17
    LizA17 Member Posts: 159
    edited December 2014

    robo47 gave you good advice. I am one of the 6% that has permanent hair loss after taxotere. I wish someone had warned me so I could've at least asked if there were other options. Good luck. Other than the hair loss, chemo wasn't too bad for me.

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