No good news here either

pugsnotdrugs
pugsnotdrugs Member Posts: 14
edited September 2014 in Just Diagnosed

I am so sorry for everyone that has moved to this forum.  I got my biopsy results back but they are very limited.  I will tell you what I see on my paperwork and maybe someone can help me make sense of it.  

 IDC with

Nottingham score 8

estrogen receptor  99% Positive

Progesterone Receptor 61% Positive

Her-2/neu 1+  Negative

Ki-67  53%  High

I know it isnt good.  My dr is referring me to UNC for everything else.

Thanks for all the support!!!  Hugs to all who got positive or negative results

Comments

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2014

    Pugsnotdrugs - I guess you are another dog lover!!  Hormone positivity is really GOOD news...........it gives you a lot of treatment options.  Her negative is really good news.............please don´t get hung up on the KI-67 as I had two pathologies done in different places and my KI-67 score varied by just over 50%    a heck of a difference. I can only put it down to the exact pieces of tissue that was biopsied.......after all if cancer is present then somewhere there have to be cells with a really high KI-67, if not there would be no tumour there......  can you ask for another pathology test and also for an Oncotype test?

    Did they give a size of the cells removed?  

    Take a look at my statistics!!  Definitely not good, but I am still here and have no evidence of other cancer, and I refused chemo.........

    Best advice is to take your time on decision making and never make a decision based primarily on fear......trust yourself......some  women in your shoes have taken tamoxifen or aromastase inhibitors before doing any other treatment as this can have a very positive outcome but I am just sharing the info with you not recomending it.  Its horrible waiting for treatment plans isn´t it..

    Sending you a big H U G....xx

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

    Pugs, we're so sorry to hear this news. Great advice from Lily above, and more to come for sure from your fellow members here!

    In the meantime, you may be interested in checking out the main Breastcancer.org site's section on Your Diagnosis, which helps you walk through your pathology report.

    We hope this helps! Please keep us all posted on how you're doing!

    --The Mods

  • mdg
    mdg Member Posts: 3,571
    edited September 2014


    So sorry you find yourself here and a member of the club.  The beginning is the hardest part.  Get a full copy of your pathology report so you can try to learn what everything means.  Many hospitals have them available online or you can pick it up at your doctor's office.  Once you have more information you can move forward with treatment and get through this.  Sending hugs your way!  :)

     

  • toomuch
    toomuch Member Posts: 901
    edited September 2014

    pugs - Take a deep breath and some Xanax or Ativan if you need it while you're waiting for a plan. This is definitely the hardest time! I hope that you don't have to wait too long to be seen at UNC. Do you know if your BS sent the tumor for an oncotype score? It could be beneficial to have that information when you see the oncologist at UNC. I found it really helpful to take notes during my meetings so that I could review exactly what was said several times. I'm also a big believer in getting 2nd opinions. And I have to tell you, I'm a pug lover too!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Dear Pugs - 

    So sorry - but some of it is better than it might be. Try to hang on to that. Hugs.

  • pugsnotdrugs
    pugsnotdrugs Member Posts: 14
    edited September 2014

    Hi all.  So I had my initial appointment with onc and he scheduled a PET, EKG and appt with BS.  He asked if I had doubt about chemo and I said yes.  I do not want to do it.  He wants me to do 5 months chemo, then surgery then more chemo.  I said that i would really like to wait for other test results before I decide treatment.  We still dont know anymore than the fact that i have a large aggressive cancer.  He did tell me that if i decide not to do chemo, my survival rate would be 40% or less.  It doesnt seem that he should be giving me a percentage without all the facts.  What do you guys think?

  • lynnetteb75
    lynnetteb75 Member Posts: 33
    edited September 2014

    im sure your stressed today...hugs....do u feel comfortable with your onc? I know.its a.overwhelming situation..but I think for myself I know my surgeon has a very poor bedside manner but im ok.with that as crazy as it sounds..I have an amazing team of doctors oncologist and surgeon but I my self need to hear the worse case...I have all my other drs to comfort me and my family and I needed that to the.point is what it is from my surgeon.....

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    I don't know about the 40% or less prognosis, but perhaps your onc picked up on your reluctance to do chemo and wanted you to really face what an important decision that is.  

    I remember a radiologist calling me into his office to go over a film.  He was watching me intently, so intently that finally I asked him why.  He said that he wanted to make sure that I was really absorbing this because he'd had some patients decide to go off to Europe for 3 months instead of dealing with their breast cancer.  No chance of that with me, but I understood why he was concerned.  

    When the rest of your tests come in, then you, the onc, BS and rad onc can throw around your options.  I'm sure you'll come to a good decision. 

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Hi pugs. So sorry about your diagnosis. I did my treatments at UNC and I love my Onc there and the nurse navigators. I'm not sure who you're doc is but they made everything more comfortable. Everyone is different but I was/am happy with UNC. Good luck and keep us posted. Just hang in there!

  • Obxflygirl1
    Obxflygirl1 Member Posts: 377
    edited September 2014

    Another UNC patient here. I drove 4 1/2 hours for treatment from the outer banks and would do it again in a heartbeat.  You will be in good hands.  I just got back from my 2 year check up.  Let us know if we can answer any questions for you. Take someone with you to take notes. I missed a lot of what was said that first day.  Hugs on this journey....

  • bettysgirl
    bettysgirl Member Posts: 938
    edited September 2014

    the very thought of chemo is scary- and i don't think that there is anyone here who wanted to do it. I understand your reluctance. I agree you need to talk with the onco and look at all the suggestions. I am not going to lie. Chemo is tough and there are some really bad days. But I was fortunate enough to be able to work throughout chemo with about three days off after each tx. You manage the side effects as they come, you come here and vent and find answers and then you take each day at a time. You will find out that your inner strength will rise up and you will surprise yourself as to how tough a cookie you really are. Best wishes as you move forward.

  • pugsnotdrugs
    pugsnotdrugs Member Posts: 14
    edited September 2014

    I truly appreciate all the replies and advice.  I decided not to go to UNC and am going to my local cancer center.  I understand that my onc wants to shrink my tumor before surgery but I don't.  I am not interested in saving the breast so I think chemo before surgery is not necessary.  I guess I will discuss with BS.  Any important questions I should be asking him on tuesday?  We are scheduling the sentinel node biopsy.  My onc took blood, was that for oncotype test?  I was sort of just going through the motions at that initial appointment.  I got my Cancer patient ID card on a lanyard and after that it all seemed a little too real.  

    I have learned a ton from these forums and i hope you all know how strong and awesome you are!!  You are all an inspiration to me!! 

    GROUP HUG

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    Dear Pugs,

    Having chemo before surgery is not necessarily for the purpose of saving your breast.  I had chemo before surgery and I had a mastectomy.  The purpose for my surgery was that doing a mastectomy wasn't even possible unless I got the cancer area smaller.   As my BS said, you don't have enough skin without cancer to cover your mastectomy.  

    As others have said, having chemo doesn't have to be the nightmare that some people had in the past.  There are lots of ways to mitigate side effects.  For example, I never had any nausea until they took me off Emend (long story) and as soon as they put me back on, the nausea was totally gone.  In my case, I wasn't afraid of chemo--in fact I couldn't wait to get started.  I was terrified that my cancer would spread everywhere before treatment started.  I called every day to 'get started' until I think I nearly drove the MO's office mad. 

  • pugsnotdrugs
    pugsnotdrugs Member Posts: 14
    edited September 2014

    Thanks Alex-- I guess that i really just need more information.  I am meeting with BS on Tuesday so maybe he can help answer my questions. 

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2014

    Good for you, pugs.  I'm sure you'll make a good decision. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2014

    Another 'positive' thing about doing chemo before surgery is that you can tell if the chemo regimen you are on is actually working. If the tumor is shrinking, it is. If it isn't, they can change up your treatment & not put you through something that isn't helping. Chemo is not fun, but remember, if you need it; chemo is like your own squad of Navy Seals, working FOR you to kill the terrorist cancer cells....because cancer will kill you, for sure, if it has a chance.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Hi, Pugs - Just wanted to chime in with some support and send some positive energy your way. I don't know if your center has nurse navigators and social workers available to you but if so, please get to know them. I've found them to be incredibly helpful in navigating all of this. Their job is to MAKE TIME FOR YOU, so if you have questions, doubts, need someone to bounce things off of, etc., they are there to do that. The center I'm using also has a big library of materials to borrow as well as support groups and fitting and wig specialists who also understand the ins and outs of insurance coverage, etc. 

    I spent 40 minutes on the phone with the social worker today, who, in my case,  is a great sounding board, has helped me understand how to approach issues/questions with my physicians, helps me navigate the roller coaster we're on, etc. She is not at all what I would have expected from her title. 

    Ask your center what they have to offer you in terms of support and use what you need of it. This is a tough, demanding position fo be in. You're entitled to get the tools and resources you need to grope your way through it. 

    Take care.

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