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Parentof1
Parentof1 Member Posts: 43
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

      I am not sure I am on the correct forum.  If not forgive me.  I was diagnosed last July and had bilateral Masectomy.

    I was in for my 6 month check with my Oncologist last Monday.  She said my WBC count was high, HCT and Hemoglobion were high.

   I have not run your "normal range" or what doctors consider normal range WBC for year's.  Mine has always run between 12-18, for whatever reason.

    I was into my family doctor 2 weeks ago.  We recently changed family doctors.  He also was concerned about my WBC and Hemoglobin, so he ordered a Peripheal Smear done. I told him, at my initial appoinment with him my WBC has run high for year's.  He said, "Yes, but why is this so high.  You may be right but, I would like to do a Peripheal blood smear and see what this says. "

   So he did this and the results came back from Pathologist they sent this out to saying: "WBC: Leukocytosis, absolute neutrophilia and monocytosis type. Reactivity noted. Blasts not seen.  Comments/Recommendations: Macrocytosis without anemia.  The differential diagnoses include drug effect, liver disease. alcohol use, and hypothyroidism or complex etiology."  (Not sure what all the pathology results mean't that came back.)  This concerned me.  And by the way, I have not drank in over 20+ year's and use no drugs other than Tylenol 3 as needed! 

   My family doctor said all the Pathology reports mean't were:  "Like you said you just run a high WBC count.  I looked back 5 year's on your records and this has always been high."

   I went to my 6 month Oncologist appointment this past Monday and, my WBC Count was 18 still, Hemoglobin 16.0, and HCT 48.7.  I told my Oncologist my doctor did a Peripheal Blood Smear, and that he said I was just one who runs higher WBC than is the norm. 

   Well now I am terrified because she wants to do a Bone Marrow Biopsy.  She said, I have something called. "Leucocytosis and Erythrocytosis.  I said, "What is Leucocytosis?"  She said, "It's an over production of white cells and Erthrocytosis is a small part of the white blood cell."  I then asked her quite blank, "Do you think this is Cancer or re-occurance?"  She said, no.    She said, "But I am also a blood doctor, a Hematologist. And you could have issues going on where your blood is too thick, and this can cause a stroke.

   Well I came home more confused, stressed out and scared than I walked in there.  So I called back my Oncologists office.  The nurse said, My Oncologist is looking for "Myelophystic Process."  I said again, "What is this?"  She said it's basically Bone Marrow Suppression or Mutation in them."

   I still don't understand and, I don't understand why a Bone Marrow Biopsy for this?  A neighbor of ours said, "A bone biopsy is never done unless they suspect Cancer."

   I am sorry to be so long and taking up so much time but, I am scared and really don't understand.  Has anyone out there experienced this?  Thanks so much for listening!

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  • PJB
    PJB Member Posts: 2,615
    edited March 2010

    Hi, I'm sorry, I don't have any answers for what seems to be a very complex situation. Just wanted to send hugs as you work through this and hopefully the docs figure out what's going on quickly.

    Paula 

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  • carcharm
    carcharm Member Posts: 486
    edited March 2010

    Did you have chemotherapy? One of the know side effects of chemo is myelodysplastic syndrome. Chemo kills bad cells but it also kills good cells. Especially immature cells that "grow" in your bone marrow. Chemo kills cells with active mitosis and the wbc, rbc, platelets that are forming in your bone marrow are in rapid mitosis and can get killed off (myelosuppression) and can be slow to grow back. Sometimes just the opposite can happen and you get an overproduction of the cells. When they are in abundance they can clog your vessels because they tend to stick together since there are more than there are suppose to be. This is why it can lead to stroke. Sometimes they put patients on blood thinners to prevent this from happening.I think the cells surface becomes more viscous and this also causes them to stick together.

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  • Parentof1
    Parentof1 Member Posts: 43
    edited January 2011

    Hi Carcharm and all others!  Thank you so much for youre repsonse's which are so appreciated!  No, I did not have chemo or radiation.  My BC was:  IDC; 1CM; Stage 1; Grade2; 0/2 node involvement; ER & PR+; HER2-

      I had bilateral mastectomy as stated above. Had a Oncotype DX test, which came back with a score of 8.  According to my Oncologist those with low Oncotype DX scores, studies have shown Chemo is not beneficial to patients with some Stgae 1 and 2 BC, low Oncotype DX scores, and PR and ER +.  Don't quote me on this last statement but, I do believe this is what my Oncologist said.

       So I have been on Femara 2.5 mg daily; do the reclast/Zometa infusions 1 x per year due to Osteoporosis stage 3 that I was diagnosed with well before I was diagnosed with BC.  I also had a Vitamin D level of 6 at my dx with BC so, been taking 5000 IU Vitamin D 1 x per day, and Oscal 2x per day for Calcium.  My vitamin D level is finally coming up.  It was 36 last time I had this checked at family doctor about 2-3 weeks ago. So this is a good thing.

       I did have Bone Marrow Biopsy done, two weeks ago Thursday it will be.  I had Sinus Infection so went to family doctor for this 2 days after Bone Marrow Biopsy.  When I got there "part" of Bone Marrow Biopsy report was in my file.  But reading this one page report with conclusion of: "Polytypic B-cells; No aberrant immunophenotype on T-cells; No increase in blasts" mean't nothing to me because, I just didn't understand the "medical lingo" which is quite common for me! 

       My family doctor looked at this one page report and said, "This looks okay to me, there were no Cancer cells found."  However my experience has been:  MY WBC can run between 12-18 (18 if I am coming down with a bug of some sort.) I recently changed family doctors.  I told him at my first appointment that for year's I had not run what is considered a  higher than normal/average WBC count.  I can run 12-18.  Eighteen if I am coming down with a bug/Sinus infection ect.  He did a Peripheal Blood smear to rule out other things.  This came back and he read this and said, "You are right, you just run a higher WBC than what is considered the average/normal.  The pathologist that did this Peripheal smear said: "WBC Leukpocytosis, absolute neitrophilia and monocytosis type. Reactivity noted. Blasts not seen.  RBC-Slioght macrocytosis; PLTS-adequate.  Commnets/recommnedations:  Macrocytosis without anemia.  The differential doagnosis include drug effect, liver disease, alcohol use, and hypothyroidism or complex etiology."  And no I have not drank liquor of any kind for over 20+ years, and do not take any drug that is not perscribed to me.  Anyhow what happens/experience has shown me my family doc thinks blood counts are okay for me and, Oncologist office says something to the effect of:  "No, these are not okay, we need to do a Bone Marrow Biopsy."

       So I have family doctor saying these WBC's/labs are okay and Oncologist saying the opposite "No, they are not okay." 

      So after getting a copy of this one page Bone Marrow Biopsy report that family doc had in my file two days after Bone Marrow Biopsy was done, I called Oncologist office.  Oncologist's nurse said, "What does your report say at top of page?  I told her, and then started saying names/medical terms that were listed like:  "Polytypic B cells."  Then she said, " You only have 1 page of this report.   There are three pages to this report!" 

       I told this nurse, I need these medical terms explained to me and, why did my Oncologist tell me this test would take 2 weeks before it is back but yet, I went to family doc 2 days after Bone Marrow Biopsy was done and 1 page of this report was in my medical file there then? And why do we only have one page of this report when in fact there are 3 pages to this?"  She said, she would have my doctor call me back.

      Three days later my Oncologist did call me back. She said, "We got part of the Bone Marrow Biopsy back and, everything so far is looking okay. But we are waiting for the third part of this puzzle which can take up to two weeks, to get back.  We are waiting for the piece called, Cytogenics to come back where I study and look at your genes, and chromosomes."  (My Oncologist is also a Hematologist/Blood doctor.)

       Well nobody at the Oncologist office told me a part of this test takes two weeks to come back.  They only said, "The test would take 2 weeks to come back."  So when family doctor had part of this report in my file two days after Bone Marrow Biopsy, I thought it was already back.  I didn't know there were 3 parts to this Bone Marrow Biopsy report."

       So I have no idea why they are looking at Cytogenics now/studying my genes/ chromosomes.  I am not sure how all of this may tie into a possible stroke or blood thickening.

       My Oncologist at March 1st appointment told me to take 1 chewable baby aspirn per day, for now.  Which I am doing.

       So right now I know "part" of this Bone Marrow Biopsy came back okay.  And we are waiting on the third/final piece of this called, Cytogenics.  However I am not sure how this ties into anything medcially.  Like I said above, "mecical lingo/terms" I just don't understand and, this is quite common for me!  But these medical terms and  lingo, can be scarry words when one has never seen them, much less heard of them before.

       Thank you so much for posting.  Have a good week! 

      

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