Waiting is hard

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MakeLemonade
MakeLemonade Member Posts: 153
edited June 2014 in Just Diagnosed

so glad to have found this site! I think I just need to vent to people who understand.

I found a lump in my left breast on Feb 23.  I don't know what prompted me to do a self exam but so glad that I did.  I had a clear mammogram in Dec along with a breast exam by my GYN! 

My friends and people at work said, don't worry, it is a cyst.  Had another mammogram on Feb 27, also clear. That was followed up with an ultrasound where I found out it was not a cyst. 

Had an ultrasound guided biopsy on March 5.  Everyone kept telling me it will be fine, it will be benign.

Results on March 10 were positive for IDC.  

Met with the BS March 13 and he had the additional pathology results ... Tumor is 1.4cmx2.3cm, grade 2.  Am slightly positive for estrogen and progesterone, however highly positive for HER2/neu.  He did not feel any additional lumps or swollen lymph nodes.   Probably Stage II. 

I have to have all of the pre op testing plus a breast MRI on Wed.  My breast tissue is dense, so nothing shows up on the mammogram.  My family doctor called me the other day just to touch base.  She said that she even called the radiologist who read the mammograms in Dec and March to look at them again, but they are clear!  Just nuts!!

Assuming MRI doesn't come up with other areas, am scheduled for a lumpectomy with SNB on March 24.

So much waiting and wondering ....  Have to get through the MRI. Then the surgery to see if it has spread.  And to determine subsequent treatment. 

I have been riding a roller coaster of emotions as I know you all have done!  Shock, rage, upset, crying, gnashing of teeth, denial.  I don't want this to define me.  I don't want this to be the only thing anyone ever talks about.  I want to talk about it.  I do NOT want to talk about it.

People keep telling me I am handling this well ... But I have periods where I just want to cry and cry.  I have pity parties in my head.  Asking why when there is no BC history in my family on either side? I breast fed for a total of 4 years ... Wasn't that supposed to reduce the chances of getting BC? 

I have never really had major health problems for most of my life.  However, I am 56 and only JUST starting menopause!  Have had some back issues with sciatica.  That got really bad in December and I finally got diagnosed with grade 1 spondylolisthesis L4 on L5.  The beginning of January. Have been going to physical therapy to strengthen my core since mid January and it has helped so much.  Instead of being in pain all of the time, I am now NOT in pain most of the time.  

The lumbar MRI in January showed that I had a growth on my left ovary.  A subsequent MRI showed it was just a cyst and had already reduced in size.

And now this .... 

The waiting is hard .... I just want to get started!  I like to plan ahead but I have no idea what is even in store as it all depends on the MRI and the surgery.  Had so many things I wanted to do this spring and now don't know if I will be able to do them.  When I was pregnant with my second child, I had 5 or 6 plans of operation for when I went into labor - if I was at work or not, if my hubby was out of town or now, if my older son was in pre school or not :-)  Didn't plan on the older son being up all night with 102 degree fever and me being exhausted when I went into labor :-). This has too many variables, can not do any if/then scenarios.  

I compete in dog agility and have now cancelled the next few trials I was to attend.  But how far out?  Haven't been able to walk my dogs for months.  Either my back was so out of commission or we have had this blasted winter to deal with this year.  Then my older dog started having seizures in January  ... 9 grand mal seizures in 27 hours.  Finally have that under control but our schedule revolves around her med schedule :-)

Stupid things go through my mind, when it isn't trying to wrap itself around the "I have cancer" thing that is.  I had a hair appointment this week ... Would I be making the next appointment? 

I am trying to focus on the positives ... Hopefully caught it early enough.  Am triple positive, so there are drugs that can target that. We have good health insurance.  My husband is being strong and supportive.  I have to focus on the positives, but also have to be aware of the other possibilities.  Everyone had convinced me that the mammogram/ultrasound would show that it was just cyst, that I believed them.  When the doctor came into the room after the ultrasound and told me that it was NOT a cyst, I felt like my knees had been cut out from under me.  So, need to be aware of other possibilities as well.  

Thank you for letting me vent. I know was rambling. I know I have questions as well, but will post separately as I formulate them.  

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  • Ukkate
    Ukkate Member Posts: 292
    edited March 2014

    deep breathes. I was in your shoes a year ago. Found a lump, had mammogram, went back for diagnostic and was told it was nothing and to come back in 6 months. My doc pushed me to get a 2 bad opinion but I was so convinced it was nothing. Finally in march- 3 months after finding the lump, had an US and a core biopsy and was told the next day that it was IDC. Two MRIs later and I ended up with a mastectomy. I had just turned 42, no family history 

    I am a DJ and had gigs booked for the year and I was able to do them all except for one. So take it one step at a time ....

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  • Grace3Boys
    Grace3Boys Member Posts: 28
    edited March 2014

    Sending good thoughts your way. I am about three weeks ahead of you, and yes the waiting is awful. I completely empathize with your range of emotions...it's very consistent with my experience and how a couple of my friends have felt.  Reading threads on this board about what other women have experienced was helpful to me in terms of understanding the process, and helping me prepare for discussions with the doctors. I obviously want to have all the information I can before surgery, but waiting for results from the first biopsy, the bilateral MRI, then three more biopsies has been painful. Now at a point where I have to wait until next week for another meeting with my breast surgeon to figure out if new findings (more DCIS in another area of the same breast) are going to prevent me from being able to have the lumpectomy next Friday as we originally hoped. Not to mention the decision I have to make after a 4-5cm area finding of LCIS and ADH in the "good" breast. I thought I had all the if/then scenarios worked out in my head, but I don't. What I think I might want to do changes minute to minute. I am trying to stay focused on the good things - early diagnosis, having the "good" kind of breast cancer, wonderful and supportive husband, otherwise good health, having health insurance etc. etc.

    I will say one thing that has helped me stay sane has been to call and/or email follow up questions after receiving results. Everyone who I have spoken to, has been very responsive and extremely kind and patient. I feel like they truly understand what women go through from an emotional standpoint after any kind of breast cancer diagnosis. I'm sure it helps that I am being treated at a breast cancer center. 

    I hope you can get through this phase quickly -- another friend who is about three months ahead of me said this period of time was the worst part for her. She is now recovering beautifully from her surgery (and having her as a good friend has really helped me stay sane!).

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited March 2014

    Ukkate - thank you for your reply ... Glad you are getting through this.  And also glad to hear that you kept on working.  That is one of the big unknowns for me ... Not being sure if I can still do the work required in one part of my life.  I plan to be strong, but who knows how this is going to affect me!

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited March 2014

    grace3boys - so far everyone has been very patient.  I was even assigned a nurse liaison and my family doctor called me on Thursday just to touch base.  

    So many questions run through my head at night or on the weekend when I can't get any answers :-)

    I did forget to get a copy of the biopsy pathology, but plan to call my dr. Office tomorrow to get one. 

    Hang in there and hope the waiting goes quickly!  

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited March 2014

    bosumblues - glad I could help :-). I have one friend that is now planning to make self exams part of her routine every month.  Another gal in my office has now made an appointment to get the mammogram that she had been putting off for the last few years.  

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  • Okiemomof4
    Okiemomof4 Member Posts: 54
    edited March 2014

    lemonade,

    We have all been there! I, too, have no family history, and I breastfed all 4 of my children, for 10 -15 months each. There is no rhyme or reason to this disease for so many. Most women who are diagnosed do not have a family history. I believe many women, myself included, get a false sense of security from that. You could have knocked me over with a feather when I was diagnosed.

    You will get through this. Don't hesitate to ask your doctor for anxiety meds or sleeping pills. They can really help. I promise you'll feel better when you get a plan in place.

    Hugs!

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  • Debzjourney14
    Debzjourney14 Member Posts: 67
    edited March 2014

    I understand! I was just diagnosed a couple of weeks ago.  I will be having preop 3/28 and 4/1.  I am having a lumpectomy and lympnode disection 4/9  Followed by 6 weeks radiation.  Mine showed up on a routine mamogram. It is stage1 grade2.  Don't remember the exact measurement but it is about pea sized.  It was a shock.  No breast cancer in family, but knew I was at slightly higher risk because I am overweight and have never had a child.  I have 4 adopted children. I am widowed for 18 years, so am facing this alone. My two daughters have Down syndrome and depend on me.  My son and daughter in law are expecting their first baby next month. (my other son lives out of state.) I am overwhelmed and have very little support.  I am 60 years old.

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited March 2014

    debzjourney14 .... My thoughts are with you! We will get through this!  The shock was hard and now the waiting to get this started. 

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  • NanaBonnie6
    NanaBonnie6 Member Posts: 1
    edited March 2014

    MakeLemonade, Your story sounds so very much like mine that it's unbelievable, as well as all your emotions.  I have first chemo tomorrow and I'm scared to death.  This all has happened so quick, that I'm not coping well at all.  But I'm relying on Dr's and putting this in God's hands. Yearly mammo in Jan 2013 showed lumps were nothing to worrying about nothing I had to keep an eye on.  Started knowing something was not right in Dec 2013 when lumps grew very fast, mammo ultrasound Feb 14, 2014, lumps highly suspicious, core biopsy Feb 26, 2014, and alas the phone call at 8:30 the night after and my world fell apart, intraductal, triple positive.  TCHP chemo starts tomorrow and really have no idea what to expect.  Anyway you are in my prayers and I TOTALLY get where you're coming from!!!!

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited March 2014

    NanaBonnie6 - all the best with the start of your chemo! 

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  • Footballnut
    Footballnut Member Posts: 742
    edited March 2014

    hi makelemonade and all!

    Ure not alone!!  I was born with one breast  - left. In June I felt a lump. After a mammo and ultrasound I was told it's nothing and that it would be checked again on 3 months. 3 months later no change. Then in jan I felt a lump under my arm. Few weeks later I had an ultrasound biopsy and guess what?  Cancer cells in my lymph nodes. Had a mastectomy on March 17 plus all lymph nodes removed and here I sit waiting for my follow up appt on April 2. Wow!!  I've been up down happy sad! Paranoid. I've read too much and scared myself to death. I've self diagnosed myself and fear a horrid death. But then I say f*ck it and come to this site to chat and get strong again. You can chat with me anytime!!!  All the women here are great!!!  I wish you the best!!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    makelemonade - I would suggest taking a look at the Triple Positive thread - it is very active and has a bunch of great ladies:

    http://community.breastcancer.org/forum/80/topic/764183?page=757#idx_22710

    The beginning phase it indeed hard - you are waiting for information so that you can make a plan.  Once you have a way forward it does get easier, even when facing surgery and systemic treatment.  One thing I will caution is not to get too fixed to whatever plan is set in place early - often things change, or there are new challenges.  Stay on your toes so that you can balance when a curve ball comes your way.  If you have any specific questions regarding treatment for Triple Positive BC ask away.

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