Demand more from Docs?

hopefloats1
hopefloats1 Member Posts: 2
in Breast Cancer #1

Hello All, in 2007 (30 yrs old - with maternal history of BC) I found a lump in my left breast and I had brown nipple discharge. After going to my OBGYN, I was sent for a mamo. I had very dense breasts and had no signs of anything in my left (?), but a possible something in my right. Bi-Rad was a 3 - most likely benign. I was given antibiotics and told to follow up in 6 months. I did, negative mamo and Bi-Rad down to a 1. Then 6 mos after that, negative BiRad 1. Then a year later, same. To years later, same. Last mamo was 2012. The whole time, I kept telling docs and mamo people that I felt lumps. Why negative mamos and ultrasounds?

Fast forward to 3 months ago. My back hurts. My arm pit hurts like a bad day on crutches - both all the time. I have sensativity in my left breast up to my neck and into my arm pit. It aches. Im BEYOND tired and have to take several naps a day. My hair is falling out and I have lost 10 lbs in last month. My left breast has gained a cup size. I feel three lumps in left and one on the right. I went to two docs. Both confirmed palpable neoplasms in both breasts. 

All sorts of tests were ordered.

Blood tests - found to be Vitamin D deficient (20 on scale of 30-100) but WBC and RBC counts both normal

Body PET Scan - Diffuse Metabolic Activity of bone marrow. No Foci - no lesions (said usually seen after chemo - I havent had any, so maybe anemia or other potential other marrow dysplasia), 2.5 cm soft mass in right breast posterior upper quadrant (non-metablic) confirmed but need mamo to diagnose, a kidney stone found (have had them before - not same area of back pain) and diverticulosis (already diagnosed).  

Mamo (3D) and Ultrasound taken- both techs "felt" and "marked" the same 3L/1R lumps during tests. BOTH test came back "normal" from radiology.

My two docs said Im normal. I am not normal and feel increasingly WORSE. 

I've scheduled an apt with breast specialist/ surgeon and have been trying to educate myself on all possiblities like soft tissue masses going undetected on mamos, dense breasts getting in the way of proper diagnoses, breast cancer metastes to the spine and marrow, what causes metabolic activity in bone marrow, etc. 

I dont understand how there is palpable lumps, one big one detected on the PET, none on the mamo or ultasound and how my blood tests could say im vitamin D deficient but not anemic. One doc said if blood tests were worse he would be worried but I read there is a direct connection to Vitamin D levels

How do I and what do I say to the specialist to demand someone take me seriously??!!!  I think something is really wrong and has been for a LONG time...

 

Thanks in advance for any thoughts or suggestions.

 

Comments

  • McMarty
    McMarty Member Posts: 212 Member
    #2
    I wish I knew! Don't give up!

    It just drives me nuts that you have to go to a different Dr for every single thing!  Then they all stand around and listen to your complaints and go 'it wasn't me'!  YEESH!  Someone take some responsibilty! 

    NOW, that vitamin D dificiency can really cause some discomfort and I too have heard there is a link and I believe it! 

    Your questions above are VERY CLEAR.  Take that note with you and your test results and just ask your questions right off of that!  And don't give up until you get answers you understand and believe! 

    I hope this next Dr is just what you need!  I'm so sorry to hear that you are suffering and the Dr's are acting all goofy!  There are answers out there!  KEEP ASKING :)

    Marty

  • hopefloats1
    hopefloats1 Member Posts: 2
    #3
    McMarty said:

    I wish I knew! Don't give up!

    It just drives me nuts that you have to go to a different Dr for every single thing!  Then they all stand around and listen to your complaints and go 'it wasn't me'!  YEESH!  Someone take some responsibilty! 

    NOW, that vitamin D dificiency can really cause some discomfort and I too have heard there is a link and I believe it! 

    Your questions above are VERY CLEAR.  Take that note with you and your test results and just ask your questions right off of that!  And don't give up until you get answers you understand and believe! 

    I hope this next Dr is just what you need!  I'm so sorry to hear that you are suffering and the Dr's are acting all goofy!  There are answers out there!  KEEP ASKING :)

    Marty

    Thanks Marty!

    I appreciate your response and support. :) 

    I wonder if there are more people out there who were later diagnosed when Mamos and other tests didn't detect? 

    I have made a list of questions and have copies of all tests and films as you suggested. The surgeon apt is tomorrow. 

    Hoping for the best. 

    Thanks again and blessings to you!

     

     

  • bonbondidit
    bonbondidit Member Posts: 116
    #4
    hopefloats1 said:

    Thanks Marty!

    I appreciate your response and support. :) 

    I wonder if there are more people out there who were later diagnosed when Mamos and other tests didn't detect? 

    I have made a list of questions and have copies of all tests and films as you suggested. The surgeon apt is tomorrow. 

    Hoping for the best. 

    Thanks again and blessings to you!

     

     

    hopefloats

    Hi hopefloats1,

     

    I had  a bi-rad of 4-  2 1/2 years ago, and dense breasts all my life.  I had a weird indent that showed up on all my nails, like a horizontal line. My endo immediately sent me to get a mammo and that's when I got the bi-rad score. They immediately sent me to the surgeon. The surgeon immediately sent me to get two areas core bispsied the next day.  They did several biospies of the area ( over a dozen. Results were ALL benign.  Everything looked great no worries yadda yadda.  I didn't go back for 2 1/2 years thinking I was clear., I didn't know things could change. I had an accident and chest planted into the steering wheel, faulty airbag saved my life.  That was in March 2014. Because of the accident I was always looking at my breasts and feeling to see of the soreness from the accident was impoving.  Two months later in May I noticed my areola was turning different textures and looked like it was swelling a little and turning reddish just under it. That's what brought me back into the doctors office thinking I may have damaged the biopsy scare tissue, I was still not educated to know better.

    He sent me of for a mammo.  I never pass mammo's again due to dense breasts. So, they sent me off again for the same area to be core biopsied again. This time I received a bi-rad score of 5.  I knew!  When I came in for my doc consult to read the results, my husband was in total denial. It was breast cancer. Invasive Ductal Carcinoma. My question, how could the exact same area now be invasive DC?  What happened??  Since my diagnoses on July3rd, 2014 I have had bi-lateral mastectomies. 4 positive nodes were positive for cancer in my axillary nodes out of the 18 they removed from my armpit. My tumor was 6.5 but of that only 2.4 was cancer, so they call it a 2.4 tumor. I have been staged at 3A.  The doctor and the hospital have pulled the benign findings from the first biopsies and had them retested three times by different teams and they all had the same conclusion, at that time it was benign. I was thankful they did that testing so I know it wasn't older than that time frame. 

    I start chemo on September 18th -

    Go with your gut instinct!

    Biggest of hugs,

    Bonbon

     

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #5
    I am so sorry that you are

    I am so sorry that you are feeling so poorly.  Not all lumps are cancer.  In fact, cancer is usually a painless lump (but not always).  A benign tumor can make you miserable.  If this is the case, I would talk with a breast surgeon about the possibility of removing it.  If nothing else, removal or biopsy may give you additional piece of mind.  My cancer presented as a painless thickening - an area with no borders and did not feel fluid-filled.

    If your PET is not showing increased FDG uptake, this is a very good sign.  Cancer cells eat more sugar than normal cells.  FDG is a glucose (sugar) that is measured on the PET.  Increased FDG uptake is always a concern. 

    Your vitamin d level is not related to anemia.  Anemia is a low red blood count.  Vitamin d is a substance that is stored in fat but also found in the blood stream (which is not just red blood cells).  Most of us today have low vitamin d levels.  This is probably related to less sun exposure and sunscreens.  The best solution is to take a vitamin d supplement - your doc can tell you your appropriate dosage (usually 1000-2000 IU/day).  More supplement is not better.  A high level is just as bad as a low one.

    Last but not least.  Have your TSH (thyroid checked).  Many, many women have trouble with this.  I have had trouble with my thyroid, off and on, for over 30 years.  You may be seeing the wrong specialist - especially with hair loss!  Many times, I think something is cancer related and it's not. 

    Good luck and keep in touch!

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