Monday, February 13, 2012

Connie's status with her investigation into tumor type growths (7 of x)

Hi fellow patients,

Hey, I have been unable to post for the last few days as I have some medical issues that have come up.  We don't know if they are related to the hip but I have been consumed by providing the appropriate journal support  to the physicians on my team.  I will be able to share this with you shortly.  Please forgive me if I slack off for a few days.

A number of tumors have appeared in my recent exams.  They are distant tumors from the hip but there is some discussion about the nature of the tumors:
(1) Where did they all come from so quickly?  All of my CT scans were clear as a bell one year ago.
(2) Why did they all appear at the same?
(3) Why are they scattered throughout the body (ovary, lymph nodes, kidney..etc.)
(4) Is there any relationship between the tumors and the hip revision?
(5)  Are these malignant or benign?

We have not run the biopsies yet as the tumors that look "nasty" would require more complex maneuvers to get to them.  I have a great team of Oncologists, surgeons and others who are examining these issues but it takes time and has consumed a great deal of my time.  I think once you have experienced things like a hip revision, as a patient, I have to be really involved in what this team is deciding.

I got my first results back today from the Pet scan.  the great news is that none of the tumors "lit up" in the radioactive scan.(Generally, malignant tumors shine in the films.)  The bad news is that the Pet scan doesn't detect all malignancies.  While I have not heard back from the medical team, it seems clear that they have to run these biopsies.

I was hoping that these were granulomas which is why I have been publishing about this over the last week or so. It is really interesting that I found about 40 journal articles on granulomas and hip revisions. Perhaps this is completely coincidental. I hope not..... Will follow up with you tomorrow.

Wish me luck.  I have a feeling I will be needing it.  BTW/please don't read into this that Tumor=Cancer.  Tumors of course can be benign or malignant right?  I want to know what caused these.  While there are thousands of articles literally on the occurance of psuedotumors and the hip, I think these growths fall more into the granuloma categories.  I  did note in the journal literature that often, the authors of the journal articles refer to granulomas in the hip space as pseudotumors, although I wonder if that language is a correct descriptive?

Here are the prior articles on this topic so far:

Seeking information.......Granulomas, histiocytosis, type IV immune response.... (part 1 of x in this series)

So what is the cause of these pseudotumors after the second revision? (part 2 of x in this series)

Granulomas, necrotic pseudotumors post revision.....what is the story on this? (part 3 of x)

Background on Type IV Immune response (part 4 of x)

Background on Type IV Immune response (part 5 of x)

Background on Type IV Immune response (part 6 of x)

connie.

6 comments:

  1. Connie, we're right here with you as all of this unfolds. Sending you lots of good energy and courage ...

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  2. Connie
    My thoughts and prayers are with you and your family. I have posted many times, and as a bilateral 16 months post op and in incredible pain daily, I look forward to my next scans as I feel like I'm sitting on cannonballs all the time and I'm getting increased pain in the pin area. I think about you often and thank you for all the work you do. May God bless you and all of us as we struggle to understand the challenges ahead of us.

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  3. Connie,

    I'm sorry to hear the news. I wish you luck.
    Can you please advise what type of tests/scans should be done in post depuy hip revision replacements?
    We have undergone a revision a few months ago and the doctors have only done the heavy metals blood checks.
    We want to do more in depth x-ray scan and so forth to ensure all is okay. But the doctor is not sure and of course we are not sure how to go about it.
    Could you please provide me with some types of tests/scans you have done?
    Thanks
    Ann

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  4. HI Ann,

    My objective is to get this list. I don;t have it yet but when I do, I will publish it.

    thanks,
    connie

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  5. Hi Connie,
    Thank you for your reply. We will see our doctor next week about unusual hair loss patches around the ear area.
    My husband noticed a small patch of baldness around his ear area when he had a hair cut before his first revision. He got another hair cut today in anticipation of the second hip revision in March and noticed that more bald patched were appearing near the ear and neck area.
    We don't think this is related to age or hereditary, but maybe the heavy metals inside the body as he also has Tinnitus in the ear.
    That's why we wanted to know if there are any other tests that can be done.
    I have been reading your blog for quite some time now and I have learned a lot more than from our doctors.
    Keep up the good work and I wish you all the best.
    Ann

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  6. Hello Ann,

    I promise you I will get to the bottom of the testing question.

    connie

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