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Stage 1 , Grade 3,

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daisyhope
daisyhope Member Posts: 7

Told there is 40% chance of spread to rest of body - breast cancer Stage 1, Grade 3.  MRI schedule on Friday to look at both breasts and head.

I am crying constantly, screaming into pillows and blankets, standing under the shower sobbing and pounding on the walls.  Can't think , can barely function.  I am afraid of falling completely apart in  public.  Alone at night and not sleeping. headaches from crying so hard but can't take aspin for fear of surgery approching.  I am falling apart at every seam. Only working 4 hours a day right now and am totally worthless while I am there.  Wednesday I am seeing a new doctor, just somebody who might prescribe something for anxiety.... I hope I can last that long before just collapsing and loosing it front of someone.   Is it just me?  If it gets any worse I don't think I can take it.  Thought I was strong and now I feel so weak and stupid.  I am listening to soothing music almost 24/7, drinking wine at night.... and I feel like I am on a roller coaster just about to peak before the be drop.  Was schedule for surgery not till late October due to surgeon's heavy schedule. Then today told of an opening for Thursday surgery.  Then 3 hours later told bumped offf of Thursday because MRI's can't be completed before Thrusday... no openings untill the one I have scheudule Friday.  Told they would try to work on getting me in for surgery earlier.

 Can people work and function with both chemo and radiation?  will I glow in the dark? If the cancer dosen't kill me, will the radiation finish the job?  I am like a box of puzzel pieces just thrown in the aiir and scattered everywhere.  I can barely remember my own name.

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Comments

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited September 2008
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    daisyhope,

    How you are feeling is perfectly normal.  Being diagnosed with breast cancer is a shock to the system and it's no surprise that you are feeling the way you do.  Definitely see if you can get something for the anxiety. 

    What your oncologist said surprises me.  A 40% chance of spread to the rest of your body sounds really high for a stage 1 cancer.  Grade 3 is the most aggressive, but lots and lots of women have grade 3 cancers with no spread.  Does your pathology report give information about the hormone status of your breast cancer?  ER-/PR- ?  or HER2+++?  Stage 1 alone would not have stats like this.  And spread, even if it's happened, might only be spread to your lymph nodes.  If the cancer has moved out of your breast to your nodes, but has not yet moved beyond your nodes, this can be very manageable and is a very different situation than mets to other part of your body.  So try not to panic.  Take it one step and one day at a time.  Next step - the MRI, which hopefully will be clear.  Good luck on Friday.  Hoping for the best possible results!

  • sandilee
    sandilee Member Posts: 436
    edited September 2008
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    daisy- I agree with Bessie.  The information they gave you is very odd if they are just looking at the stage and the grade. They have no way of knowing anything like percentages  from just these two features.

    You need to know the size of the tumor, the whether the tumor is estrogen positive, negative, and HER neg or positive. You also need to know if it has spread to the lymph nodes. If they haven't done the MRI, they don't know this. In fact, if they haven't looked at the nodes under the miroscope, they don't even know if you're a stage 1 for sure. The 40% figure is something pulled out of thin air,as far as I can tell.

     I had stage 1, grade 3 cancer.  I have no cancer at this time, and had no chemo or radiation, as I chose a mastectomy on the affected breast.  I am taking Aromasin to lower the estrogen that feeds the cancer, in case some cells may have escaped into my bloodstream. That's it.  Other than eating right and exercising, I am living just as I did before my diagnosis, and expect a long and healthy life.

      Because there are so many unknowns for you, you are scared. Please know that most of the people on this board have had breast cancer and are living good lives. This is not the end!  In fact, if you are truly stage 1, it's very likely that your story will be similar to mine.  I feel better now than I did before my diagnosis, and I really take care of myself.

      If your doctor isn't supportive, and doesn't back up his statements with real statistics that he can show you, get another!  I am appalled that a doctor would say something like that at such a devastating time. And it's not true, to boot.

      You will be fine. They will take out the tumor-you will probably have the option of keeping the breast and doing radiation, or having a mastectomy and not needing radiation. (that's what I chose.)  You also will have lymph nodes removed in surgery, and they will then tell you if they feel chemotherapy would be beneficial or not, depending on whether the cancer has spread to the nodes and other factors. But please be assured, if you are a stage 1 (not sure how they can know this because it reflects knowing that your lymph nodes are NOT involved) you have many more wonderful years and will most likely not have a recurrence.

     Good luck on Friday and let us know how it goes.  We've all gone through it, and really do understand what you're feeling.

  • tiff2008
    tiff2008 Member Posts: 31
    edited September 2008
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    Hang in there Daisyhope!!!  The dx of bc is really tough I know.  The toughest thing is not knowing what you're to do next.  Beesie is right, take 1 step at a time.  I promise you, it will get better!  My thoughts and prayers go out to you.

  • jpann39
    jpann39 Member Posts: 92
    edited September 2008
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    Daisy

    You are in the hardest part of all this right now...the waiting is extremely hard and makes us wonder about our own sanity at times.....

    Im sorry that you have to be here......but you have found a wonderful place here and what the ladies before me have told you is true....

    Come here and talk to us when you feel so down and lonely...there is a live chat room on this site too and the ladies there are wonderful as well....dont try to go this alone....we are here whenever you need.

    Hugs

    Jule

  • Sassa
    Sassa Member Posts: 98
    edited September 2008
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    I was also stage 1, grade 3, at the time of diagnosis. My oncologist told me my chance of recurrence after mastectomy and chemo was 17%.  Since the chemo  reduced my chance of recurrence by a third, I figured my original chance of recurrence was 30% (mastectomy also bought the chance down 3% over lumpectomy).This was based upon the fact that my tumor was 1.75 cm, grade 3, her 2 positive, ER/PR neg and had a very high KI 67 factor,  Taking herceptin further reduced my risk to about 13%.

    So your 40% risk is probably based on what is known now and not on the final tumor characteristics and your chances after treatment.

    Also, if the 40% is your risk of the cancer being found in your lymph nodes, I know my chance was 25% possibility.  Luckily my nodes were clear.

    So, hang in there.  You probably have an excellent chance of beating this when all information is know and treatment is finished.

  • Jenniferz
    Jenniferz Member Posts: 25
    edited September 2008
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    Another Stage 1, Grade 3 chiming in!  Don't have anything to add to what these ladies have already told you, but please know that you are in my thoughts and prayers.  I had a mastectomy like Sandilee, no chemo, no rads, no Herceptin, only Femara.  And so far, am cancer free!  There's no reason to think that you will not do well.  Stage 1 is early, and for your onc. to say otherwise is simply unacceptable in my mind.

    Hang in there, and let us know how you are.

    Jennifer

  • Veryhopeful
    Veryhopeful Member Posts: 2
    edited September 2008
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    That sounds way too pessimistic!

     I think you have a great chance to do well.

     My oncologist told me that stage was more important to focus on than grade.  Most are grade 3.

     Have your treatment and kick cancer butt.  Good luck.

  • jude14
    jude14 Member Posts: 29
    edited September 2008
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    I too was a stage one grade three and I did a lumpectomy with radiation, no chemo, and on femara and so far so good.....No mets anywhere.  I was er/pr + and her 2 neu negative by fish....hang in there it will get better....

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited September 2008
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    I'm just agreeing with the rest of these good ladies! 

    I'm also Grade 1, Stage 3, lumpectomy, rads, no chemo, and will do hormones.

    I think grade 3 is common for IDC - that's what makes it break through the duct.  Otherwise, it would just hole up in there.

    It will get better, but give yourself permission to scream anytime you need to.This is the roller coaster ride from Hell, and you never know how you'll react from one minute to the next.  Sounds as though you already have some good coping skills!  And as agonizing it is to wait, you really are in no more peril than when you were first diagnosed.  These d*mn things don't do too much in a couple weeks.

    Many people work thru treatment,but we're all different, and the side effects hit us differently.  Not to mention what type of job you have makes a difference.

    Unfortunately, I don't think we glow at night, although that would be so cool for Halloween!!

    I bought lots of books on cancer, got kind of obsessed, probably, but that was my way of coping.  Would have been cheaper to buy a 12 pack!

    You are strong.  You will make it.  You have a ton of good info from women who have been there, done that.

    Come back whenever you need support!

    Susan

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited September 2008
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    Dear Daisyhope,

    I am somewhat puzzled as to how did your oncologist know so much about your cancer since you have not had your surgery yet.  I was told that I was grade 3 after the biopsy but after the surgery they regraded the tumour to grade 2 (not sure how that works out).  Only after the pathologist's report I was told the stage of the tumour (my surgeon said that the size of the tumour always changes after they get a chance to see it outside of the body) and also because they can only then be certain about lymph node involvement.  It is tough but you are in good company and just take this one day at the time.  Best wishes Nena

  • pinoideae
    pinoideae Member Posts: 55
    edited September 2008
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    daisyhope, I am so sorry, I know I mentioned in another thread when I discussed my mammograms, xrays, a bone scan, bone density test, I brought up the glow in the dark comment.  That is my sense of humor.  I should be more cautious, I don't want to scare anyone.  You are going to have some choices ahead of you re: treatment once all of the investigation into your specific type of breast cancer has been completed.  Sometimes radiation can be avoided.  It will be seven years ago in October, but I remember being given a percentage about recurrence with or without radiation.  I chose radiation.  There is no going back on my decision now, and 7 years later I am well.  Radiation can be avoided as these ladies have stated.  Alcohol can increase anxiety. Just something to think about. 

  • daisyhope
    daisyhope Member Posts: 7
    edited September 2008
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    I miss-spoke.... the doctor did not say spread through the body, he said based on the size, stage, grade, and other noddingham info on the report there was a 40% chance that it spread through the blood stream (not body).   I checked  on what he said & found confirmation to his statement.  The doctor is well respected and he is planning mri's to get more information.  I trust this doctor based on his reputation.  He went through much more detail with me then what I stated I was just quoting the highlights that I could remember.  I am much calmer tonight and attended a breast cancer support group today and got a ton of info, and resources to look into.   Thanks for the info and thoughts and ideas.  I will look into them all.

  • pinoideae
    pinoideae Member Posts: 55
    edited September 2008
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    Good you had a better day. 

  • LauraZ
    LauraZ Member Posts: 3
    edited September 2008
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    Daisyhope,  I'm glad that you are feeling much calmer.  It is possible to function at work and home while undergoing treatment, but keep in mind everyone's body and tolerance levels are different. You also need to consider what type of work you do and what type of chemotherapy drugs they may recommend.  You won't glow from radiation (and I though having radiation treatment was relatively easy), but I often thought that might be kind of fun - especially with all the people that have to examine our breast  Laughing.   Take one day at a time, ask all the questions you need, and remember that you are not alone in this journey.
  • caligal
    caligal Member Posts: 2
    edited September 2008
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    Ok so you are looking at this the wrong way.  There is a 60% chance that it wont spread to the rest of the body.  I am a stage 1 grade 3 triple positive.  Just had my one year anniversary, diagnosis date was 9/18/07, cancer was removed 2 days after my birthday, so that is another reason to celebrate.  Look at the glass as half full, not half empty, or just say the hell with it and take a drink

    Laughing

  • daisyhope
    daisyhope Member Posts: 7
    edited September 2008
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    24 hours ago caligal wrote:

     "There is a 60% chance that it wont spread to the rest of the body "-- yes, I am looking at it as half empty (the glass that is).  I am not in a space where I have faith I will survive yet.  I am hoping to get there.   I am a stage 1 grade 3 triple negative.    I  fear for my life, my job, my home, everything is laying on the table and I have to find a way to handle this alone.  I am workinjg on it.  Did you see the glass half full in the begining?

  • daisyhope
    daisyhope Member Posts: 7
    edited September 2008
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    Did anyone else experience weight loss before treament even though they were eating a lot?

  • sueps
    sueps Member Posts: 21
    edited September 2008
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    Daisy ...

    I had the same dx as you. Had mast chemo ...no rads....worked through chemo..

    I felt very rundown before dx ...didnt know it was due to b/c ...lost weight ... tired etc...

    Finished chemo in May and feel much better than this time last year.

    I felt all that you feel... xxx 

  • daisyhope
    daisyhope Member Posts: 7
    edited September 2008
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    Hello sueps,  Thanks! ((HUGS))

    Do you mind it if I ask why you chose mast with IDC./ stage 1 / grade 3 / tripple neg ?

    My doctor told me there is no greater chance either way between mast and lumpectomy including reacurrance.  What did your doctor say?  And, did your decision have anything to do with BC in your family history?  I don't have any in my family history.  I need to ask about my oncono type still.  Still waiting for my surgery... still trying to get all the facts.

  • WendyK
    WendyK Member Posts: 38
    edited September 2008
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    Hang in there. I was IDC Stage 1 Grade 3 diagnosed in December, 2004. I'm still here! I was told I had an 86% chance that it would never come back again. I did chemo, rads and am still on tamoxifen. It's so hard at first. Give yourself time to be royally mad!

    Big hugs,

    Wendy

  • daisyhope
    daisyhope Member Posts: 7
    edited September 2008
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    Hello WendyK ,

    Thanks, I sometimes I have rages of anger... but most of the time I feel small,,,,, very small.

  • ritajean
    ritajean Member Posts: 4,042
    edited September 2008
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    Daisyhope.....I think I wrote a very similar post to yours just two years ago.  I, too, was diagnosed as stage 1, grade 3 IDC and I was petrified, angry, sad, lonely, and very, very lost!  All your feelings and emotions are so normal!  It's such a roller-coaster ride!  With the help of the wonderful ladies on this site, I made it through my journey, and you can do it, too!  I had a lumpectomy, chemo, and radiation.  It will be two years since my diagnosis in November and I am finally finding a bit of the "new normal" in my daily life. I am now taking Arimidex.

    Both my breast surgeon and my oncologist also said that the lumpectomy was as effective in stage 1 patients as the mastectomy concerning recurrences so I decided to go with the lumpectomy.  A friend of mine with a similar diagnosis chose the mastectomy, so it's mainly a personal decision.  You will make the right decision for you!

    As you can see, there's several of us Stage1, Grade 3 gals still out here! 

    Hugs to you......

    Rita

  • daisyhope
    daisyhope Member Posts: 7
    edited October 2008
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    I'm going with the lumpectomy too.  I double checked and the survival rate/re-ocurrance is the same no mater if you have the mast or lumpectomy. ... I am hoping for the best.  I must ask... did you have any hr receptors?  I am triple negative.  so wondering about the Arimidex you are taking.

  • Liz08
    Liz08 Member Posts: 100
    edited October 2008
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    Daisyhope-

    it is normal to feel overwhelmed when 1st diagnosed. It's only normal.  I recall my head spinning and worrying if I will be around to see my children grow up, my children were 8 months, 5yr, 10 yr when I was diagnosed this January.  I would have daily crying spells, headaches from the stress, dizzy etc.  I barely functioned at 1st.  One of my doctor's who is a colorectal cancer survivor told me that she's been in my shoes and said either I can live a miserable life and let the cancer control my life or I can get a grip and take control of my "life" and live it to the fullest.  I decided to take control of my life and live it to the fullest and I'm glad I did. But there are stages we need to go through before we can move on.  You mentioned weight loss, I too lost weight and most of my pants were almost falling off.  Remember, stress speeds up your metabolism and burns calories.

    I too had a lumpectomy and rads since I have been told and researched that for early stage breast cancer, lumpectomy and rads = mastectomy for survival.  There are alot of studies to support this.  Both have their pros and cons, it's a matter of what you feel comfortable with. 

    Remember you are not alone in this journey, the women in this forum are wonderful with their knowledge, compassion, and support. They have been my saving grace.  I'm not sure if you are aware but there is forum specifically for those who are a triple negative, this may be a good source of information for you as well as support. 

    Wishing you the very best. 

  • caligal
    caligal Member Posts: 2
    edited October 2008
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    Hi,

    Its been a while since I have been on this site, but yes, I have always seen the glass as half full.  I just celebrated my one year survivorship last month.  You CAN get thru this.   

  • mrschilicook
    mrschilicook Member Posts: 7
    edited October 2008
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    Daisyhope....you may want to talk to your doctor again.  I could be wrong, but my understanding of Stage 1 is that it has NOT spread into your nodes which means it's hasn't spread outside of the ducts.  Grade 3 is just a type of cancer (invasive) not necessarily that it HAS invaded your body.  I  had stage 1, grade 3, triple neg. with a tumor size of .67 (very small as is yours).

    So far it's been okay as far as cancer goes I guess.  I had a needle biopsy for the pathologist.  Then I had surgery to remove the tumor.  Since it was small I had a lumpectomy (also called a partial masectomy) and still have much of my breast. I qualified for targeted radiation that lasted 5 days (2X day).  I begin chemo in two weeks.  Yes I'm scared witless, but trying not to panic.  I am on Xanax as between the death of my husband and being diagnosed with BC I had my first panic attack (a VERY scary thing).   The Xanax has helped me cope with the day to day needs of life....at least to a certain degree.

     Gather your friends around you.  Don't be afraid to ask for help....as a matter of fact you MUST ask for help.  Don't try and go thru this alone.  You need love, support, and the occasional hug. I'm having a hard time dealing with all of this without my best friend, my husband, but I have new friends, old friends, and my mom who have all gathered around if I need them even if they live states away.

    We're here for you as we all go thru this awful things, but just know you will survive and you won't glow in the dark Cool.   Hug the dog, the cat, the teddy.....feel our love and support.

  • wishiwere
    wishiwere Member Posts: 934
    edited October 2008
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    MrsChilicook, just wanted to clarify some things you mentioned, that I think you mixed up.  Stage is what says the size of the tumor is (depending also on lymph node involvement).  Grade is the type of aggressiveness (stage 1, 2 or 3) with 3 being the most aggressive type of cells.  Invasive/infiltrative (same thing) is whether it has grown outside the ducts/lobules.  If it hasn't or is NOT invasive/infiltrative, then it's considered stage 0, b/c it's still within those structures, and would be DCIS or LCIS.

    Metastsis is when it goes outside the breast area to other organs/structures such as the brain, lung, liver, bones or such.

  • stlmama
    stlmama Member Posts: 1
    edited October 2008
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    Hi daisyhope.  

     Another Stage I, Grade III, triple negative here.  I was given the choice also between a lumpectomy with radiation or mastectomy.  My maternal grandmother was diagnosed w/ bc when she was 60 (I am 32) - no other family history.  I chose to have a bilateral mastectomy and am about 1 month out of surgery, but there is no right or wrong.  For me, it was mainly based on peace of mind.  I did not want to face mammograms every year, etc.  You will know what is best for you.  If there is one thing that I learned out of all of this is that you need to be your own advocate....ask, ask, ask your docs and if something doesn't feel right, it probably isn't. 

    Hang in there ((Hugs)) 

  • diane25
    diane25 Member Posts: 1
    edited November 2008
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    A friend had a double mastectomy  for DCIS and the pathology report following the surgery showed an invasive Stage 1, Grade 3, ER positive, PR negative, HER2 higher than norm, clear margins and lymph nodes tested were clear.  What are the chances this has gone somewhere else?

  • bookerdust
    bookerdust Member Posts: 2
    edited November 2008
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    Daisy,  I was losing weight for over a year.  All my doctors knew of it, just told me to eat more.  Mammogram was fine (supposedly).  Had nauessessness.  Finally, enough was enough.  15 pounds later, went to my gastro doctor.  Had colonoscopy, endosopy, small bowel xray, lactose interolerance test, still no appetite.  Then I found the lump. Although, my oncologist says that breast cancer does not cause those systems.  I've had all the MRI"s, Muga Scan, Bone Scan, and all showed fine there too.

     Stage IIA, Grade 3, with one lymph node positive, plus supposedly in my blood system?  Pathology reports states that I have extensive DCIS 25%-30%.  Had a lumpectomy, but with that word 'extenstive', I am worried if I  made the right choice.  Are they any ER & PR+ HIGH GRADE lumpectomies out there with well over 5 years survival?