I am new to all this and thank God I have support just diagnosed

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janine007
janine007 Member Posts: 11

I was diagnosed 6 days ago with breast cancer. Had my first appt. with oncologist yesterday and wasn't told very much only that it needed to come out via lumpectomy or mastetomy, which I will be going to shorlty. Was told it started in ducts and went lobular.  Yesterday, I did blood work and made PET scan, which is causing me much anxiety.

I do have all my reports and see GRADE 3.. Doing some research I am horrified at this high grade. My tumor is the size of a mini cigar, seems to maybe 3-5 tumors connected. Oncologist confirmed that there is no way of telling what stage and did say it was larger. She didn't tell me about grade 3 and I don't know if she is being honest about she really has no idea of my future.

 I have been going thru panic attacks, etc. Until now, I have been healthy and don't show many signs of it. I have been run down, but thought it was my busy lifestyle. STill sorta believe it. I walked a few days aweek for 3-4 miles and DID kickboxing 3-4 classes a week. Also, taught women self defense.

 I just ran across this site and I am very touched by the love you all have for one another and don't feel so alone anymore. I have support of friends and relatives, but none that have or are going thru this. I am very scared inside because I have a 4 year old beautiful daughter and a 8 year old darling son. I am 38 years of age and want more than anything to raise these children..

I learned to stay out of my medical records and stop doing my own research online because it's scaring me to death after I know it's grade 3 .

I feel like my life is going to be a flip of a coin. I do understand that if it spread that is where the big battle comes in and I am prepared to do the surgery and hope for the best.

 Maybe I am jumping the gun because Doctor says she does not know if it's all CANCER ?

My worst fear is spreading and GRADE 3 doesn't sound well?? Does anyone know if I can be in stage 3 with that large of a tumor and NOT SPREAD as in localized to breast?

I am trying my best to be positive, truly and trying to give this to GOD.. My eyes see everything different now and I am utterly shocked about all this trying to hold myself together.

Thanks for listening!
Janine

Comments

  • denise1962
    denise1962 Member Posts: 193
    edited April 2009

    Janine

    Sorry you have join this club. As far a what will happen next is after the lumpectomy or mast they will send it off to pathology. Which takes about a week to get back. Up in till this time the oncologist really doesn't know what kind of treatment you should get. Now is the hardest part of this waiting.... but once you have the pathology back and a game plan in place it seems to help with the worring. I would stay away from the internet until you have a diagonises on paper. In the mean time maybe surf through this site will help. There are alot of women in all stages of this battle here.

    Please keep us posted and more ladies will be along.

    Denise

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

    Janine, I'm your example. My tumor was 8cm!!!  Grew in 7 months..Grade 3. I was misdiagnosed for 6 months untill "something" told me to go back. I had 6 lymph nodes removed and they were all clear. Pathology read....Clear for metastasis.

    There are woman out there who have big tumors and no nodes. My friend had a 2 cm tumor and 3 involved....there are no rules. I know having a large tumor is scary at first but as my onc says, size doesn't really matter..it's what is found at surgery. Ex..clear margins+ lymph nodes, ER status and Her2 status, lymph vascular invasion ect. I know a woman who's tumor was almost 10cm..no nodes and triple neg. She is 5 years out.

    You will most likey to chemo first to shrink the tumors then surgery. come here for support

  • nelia48
    nelia48 Member Posts: 539
    edited April 2009

    Hi, Janine!  So sorry you had to join us here, but you are in the best place for information and support.  From reading your post, it sounds like you don't have ALL the facts yet, so please don't panic.  I know that is easy to say, but when you have all the information, you will better understand the path that you will be taking.  The Grade 3 thing means you have fast growing cells.  That sounds bad, I know, but actually, it can be in your favor.  Faster growing cells respond better to treatment.  My tumor was about 10 cm in size, with 5/15 lymph nodes .  I had to have the chemo first to shrink the tumor, and after 6 treatments, it was down to 1 cm in size.  I went through surgery, and now finishing up radiation treatments.  I really didn't think I would live through all this, but I did.  One day at a time!  You will too.  So take a deep breath, step back, and please understand that there is lots of hope!  Please keep us updated as to what happens, OK????

    Cora

  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2009

    Hi Janine:  Just wanted to mention to you that I have a 1.2 cm Infiltrating (invasive) ductal carcinoma - the garden variety of breast cancer and it's stage 1, grade III.  My BS and Onc both told me that any type of invasive cancer that has broken out of the duct is almost always a grade III.  Remember that is the GRADE and not the STAGE.  Best of luck to you and we are all here to hold your hand - no matter what.

    Hugs,

    Linda

  • janine007
    janine007 Member Posts: 11
    edited April 2009

    Thank you for letting me know this. This time of un-certainty is not familiar to me.. I am trying my best to go with the flow..Laughing

    I feel some better knowing that. I hope to keep in touch!

    Janine

  • janine007
    janine007 Member Posts: 11
    edited April 2009

    Hi Cora,

    Ok, I will definately keep in touch! I do realize that it is the type easier to treat. Two years ago my brother endured a spinal tumor that was aggressive and I did help him thru it and he's 100% now. The oncologist told us aggressives respond better.

    I can't say enough of how kind you are to provide me with this encouragement. I am doing my best not to go negative without all the facts and stay calm.

    My pet scan is next week and I will find out about STAT surgery consult next, so you will be hearing from me soon. Have a great day and thanks again!!

    Janine

  • janine007
    janine007 Member Posts: 11
    edited April 2009

    Thank you Lexislove,

    It's truly amazing the different input each of you have stated. I feel assured to have support and I thank you from the bottom of my heart for reaching out to me like this.. Your response has definately been soothing. Please keep in touch!!

  • janine007
    janine007 Member Posts: 11
    edited April 2009

    Hi Denise,

    I learned my lesson to research my situation without all the facts on the internet. The information age has it's downs. I will wait for the facts and PRAY MY PET SCAN COMES OUT NORMAL and if not I am going to take one day at a time and enjoy the better things around me.. POSITIVE THINKING is what I am trying to stay. I do have friends and family that have been GREAT with trying to help me thru this, but none like you ladies that have been thru it.. I will keep in touch and please do the same!! Have a great day!!

    Janine

  • Denali
    Denali Member Posts: 347
    edited April 2009

    Janine, wishing you positive thoughts and virtual {{{{HUGS}}}}.

    Also, I'd like to thank each of you for taking the time to share.  What positive replies to those of us with big tumors! 

    Thank you, thank you, thank you!!!

  • janine007
    janine007 Member Posts: 11
    edited April 2009

    Hi Cora & friends,

    I am still all new to figure out how to post things and all that. I wanted you to know that I did my Pet Scan on this past Wednesday. Thursday,  I met with Surgeon who I really like. She is located in Palm Springs and has done extensive research at the Mayo Clinic in NY. Has a research Doctor in her office also. They want to do some gene testing on me. I am ok with that.

    Thank Heavens, my Pet Scan came out good. It did show 2 lymp node abnormal cells and she wants to ultrasound and then biopsy them before removing them. I am going to Chemo 4 treatments to shrink my large tumor  8 cent. by 3 cent. I will then have surgery and back to chemo for 4 more treatments. I am starting to feel better treatment is in place and I have more facts now. It's been 12 days since diagnose.

    I went to Oncologist yesterday for preparations and am ok with that. I am taking one day at a time. I was having alot of kidney pain and once I learned it wasn't on the run in my system, I went to my regular MD that thinks I have kidney infection or stone (BLOOD IN URINE). I can't tell you how relieved I am that after my antiobiotics, I will walk into chemo 100% and it's not loose in my system.

    I know I have along battle ahead and am trying to accept this and as the nurse said it's only temporary and it's the start of my new life. I decide to take it positive and ONE DAY AT A TIME.

    I am trying to figure out how I can email a few of you at once to let all of you that have reached out to me that I am ok ....You ladies are INCREDIBLE and I can't tell you enough!!!!!

    My thoughts and prayers are with you all this Easter weekend! I will be in touch throughout my new journey.

    My best,

    Janine

  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2009

    Janine - we are all here for you - anytime.  Keep us posted and try to relax and enjoy this Easter weekend as best you can.  I have about 6 weeks on you, so I am relatively new to all this and can well understand your fear. 

    Hugs,

    Linda

  • Bethie1
    Bethie1 Member Posts: 393
    edited April 2009

    Janine,  Sorry you had to join us. I'm 38, with IDC, the type that hit the milk ducts.  Was diagnosed a week before Christmas, and had attempted lumpectomy based on what surgeon saw on scans.  She saw more when she opened me.  Long story short--had a mastectomy 1 week after lumpectomy, and now heading for chemo #6.   You need to do what yo're comfortable with, but your Fabulous Furry friends/"sisters" are here for you!!!

  • aja1967
    aja1967 Member Posts: 6
    edited April 2009

    Hi Janine, I am traveling the same frightening path as you are right now and having the same feelings of shock and disbelief. I was diagnosed on April 3rd with Stage IIa IDC, 2 tumors in left breast, 2.3 cm and 1.6 cm at age 42 and feeling completely healthy.  It literally came out of nowhere without warning and the idea that I have cancer is completely surreal.  I find myself  driving in my car and saying out loud to myself, "I have cancer"  (sometimes adding colorful expletives). You never think it can happen to you but then I started thinking why not me?  I wasn't given a Grade as my doctor told me grading system is outdated and not used anymore so I wouldn't worry too much about that .  I had bone scan, MRI and genetic testing for BRCA gene yesterday as well as met with plastic surgeon for immediate reconstruction following mastectomy, that has yet to be scheduled while wait for genetic testing to come back which could take as long as 3 weeks; the longest 3 weeks of my life! If testing comes back positive, double mastectomy will be recommended.   In the meantime, I am scheduled for sentinel node surgery on 4/15.   I have two girls, 7 & 6 and after reminding myself a few days ago that, for whatever reason,  these are the cards I have been dealt and only I have control over how I am going to play them,  I started wearing mascara again and stopped crying ( for now anyway) and have been finding humor in the most unlikely places and subjects thanks to a wonderful husband, family and friends.  Wig shopping with a girlfriend ended up being hysterical!  However, this horrible journey is just starting and I fully expect to replace the laughter with tears at times and expect to have ongoing episodes of complete anger and anxiety especially once surgeries are scheduled, chemo starts, hair starts falling out and, mostly, if I cannot be there for my girls, my husband, family and work.   I am very relieved I found this site and women who are going through or have gone through the EXACT same thing as I am and find comfort reading posts from complete strangers who are expressing the same thoughts and fears I am having and the posts of those who have been there reminding us to take one day at a time.  Happy Easter!  

    Amy   

  • janine007
    janine007 Member Posts: 11
    edited April 2009

    Hi Amy,

    Just wanted you to know that I was thinking and praying alot for you today. I realize we were diagnosed 4 days apart. I read your email a few more times and I can totally relate to you. I got me a good waterproof mascara hehehe. Actually today was the first day the tears didn't come since diagnosis. I almost did, but stopped. I got a letter in the mail from my husbands best friend and it was very touching. He told me that if they had to take a breast that does not mean I am less of a woman, it means I AM A BETTER MOM. He encouraged me to be strong and what I meant to him and look what I have accomplished and how I WILL get thru this. It was very nice, especially coming from a man. He had an accident (brain trauma) himself years ago and was a celebrity and now he lives the quiet life and is happy.

    I really had a great day today and feel positive and wanted you to know that I am thinking about you and wish you the best. Make sure you get your sleep. I am starting to accept a little at a time. I am adding you to my prayer list for all my warriors out there, so you will have dozens more praying for you and your family.

    TAlk to you later!

    Janine 

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