Please help reduce my stressing...test results may indicate cancer

Posted by jeremy17 @jeremy17, May 30 12:18pm

Hello.  40 year old male.  I was just given a report by a radiologist stating that I have extensive hypointense marrow replacement in about half of my tibia, with a heterogeneous signal.  I also have a soft tissue mass of 4cm x 2cm x 1cm abutting the same upper tibia.  He states these findings are concerning for a malignancy, such as lymphoma, or a bacterial infection. 

I have an appointment with an orthopedic oncologist in four days, but I’m seriously stressing and trying to decipher as much of the report as possible in the meantime.  What I really want to know is if there are other outcomes besides cancer, especially since I found an article online stating that bone marrow lesions discovered by MRI’s are quite common?

Also, the soft tissue mass can be felt right underneath my kneecap on the outside of my leg, and is painful to the touch.  My understanding is most cancerous tumors are not painful.

Thanks.

Jeremy

I understand your anxiety, especially in this age of corona virus. I have been having pain on the inside of one knee which I have been attributing to neuropathy as My diabetes is soaring due to nervous eating. I have experienced different doctors saying different things about what to do! I think your best bet is to consult another doctor(s). Good for you for posting on this board. You will get measured,experienced, and common sense advice.

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Good afternoon, @jeremy17, Welcome to Connect. Amazingly, I am doing the same thing….trying to make sense out of the biopsy diagnosis which has some of the same words as yours. My appointment is Wednesday to take out the stitches and discuss a treatment program. I think there are options, and so instead of getting all anxious, I am going to wait and then practice what is called, Shared Decision Making with my clinician. That concept is part of patient-centered care, practiced so well at Mayo Clinic.

So your appointment is Friday. There are lots of nooks, crannies, and curves to these diagnoses. I want to make sure I have time to reflect on everything before I get too anxious. My life partner will go with me and take notes. I can also communicate directly with my clinician on the patient portal as the learning sinks in. Last week, I questioned my reaction to a medication and two of my doctors shared their opinions.

Do you know this oncologist? How was your situation identified? Did you find it and seek a biopsy? Have you had any incidences of Cancer so far, @jeremy17? That would be helpful to know. I will respond to your post and help you find some reputable information.

In the meantime, please be safe, protected and free of suffering.
Chris

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@jeremy17, Here is a link to some pretty important information that may be helpful in determining benign or malignant indicators. It looks understandable with some good graphics.

Hope it helps,
Chris
https://www.slideserve.com/ronni/mr-evaluation-of-bone-marrow-disorders

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@artscaping

Good afternoon, @jeremy17, Welcome to Connect. Amazingly, I am doing the same thing….trying to make sense out of the biopsy diagnosis which has some of the same words as yours. My appointment is Wednesday to take out the stitches and discuss a treatment program. I think there are options, and so instead of getting all anxious, I am going to wait and then practice what is called, Shared Decision Making with my clinician. That concept is part of patient-centered care, practiced so well at Mayo Clinic.

So your appointment is Friday. There are lots of nooks, crannies, and curves to these diagnoses. I want to make sure I have time to reflect on everything before I get too anxious. My life partner will go with me and take notes. I can also communicate directly with my clinician on the patient portal as the learning sinks in. Last week, I questioned my reaction to a medication and two of my doctors shared their opinions.

Do you know this oncologist? How was your situation identified? Did you find it and seek a biopsy? Have you had any incidences of Cancer so far, @jeremy17? That would be helpful to know. I will respond to your post and help you find some reputable information.

In the meantime, please be safe, protected and free of suffering.
Chris

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Thank you Sir for that info. I have an appointment with my oncologist on Tuesday. I was referred to him by my ortho doctors office, due to the report by the radiologist. I have never met him. I've never had any incidence with cancer, so as you can imagine, hearing of this report was very shocking. I understand my father had lung cancer (most likely due to being a longtime smoker, which eventually spread to brain cancer, due to him choosing to not receive proper medical care).

So if you may be willing to share, what type of cancer were you diagnosed with, after the biopsy? I understand your MRI report had some of the same wording as mine? How many cm of your bone marrow was displaced? Is that your tibia, as well? Do you have a soft tissue mass also?

Thanks.

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Reading my report again, I see my radiologist says that the T1 hypointense marrow replacement can also be due to Brodie's abscess. I'm thinking it's that, especially since I have a soft tissue component/phlegmon.

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@jeremy17

Reading my report again, I see my radiologist says that the T1 hypointense marrow replacement can also be due to Brodie's abscess. I'm thinking it's that, especially since I have a soft tissue component/phlegmon.

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@jeremy17, good for you. I hope you sat down, took 10 deep breaths, and left the anxiety behind for a few moments. Our brains can only do so much, (just teasing). I think you are now ready to entertain and explore options for treatment once the diagnosis is explained. Just remember, you have every right to learn about your condition and then become a partner in the decision making.

May you have comfort and ease.
Chris

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@jeremy17

Thank you Sir for that info. I have an appointment with my oncologist on Tuesday. I was referred to him by my ortho doctors office, due to the report by the radiologist. I have never met him. I've never had any incidence with cancer, so as you can imagine, hearing of this report was very shocking. I understand my father had lung cancer (most likely due to being a longtime smoker, which eventually spread to brain cancer, due to him choosing to not receive proper medical care).

So if you may be willing to share, what type of cancer were you diagnosed with, after the biopsy? I understand your MRI report had some of the same wording as mine? How many cm of your bone marrow was displaced? Is that your tibia, as well? Do you have a soft tissue mass also?

Thanks.

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@jeremy 17 I am so sorry. I hope you let us know what kind of Cancer. It must be hard for you hearing news like that. Let us know what the oncologist tells you and what treatment he recommends. We care about you a lot.

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@jeremy17 That's a very difficult radiology report to be given. Too many big words that only experts can interpret. Just like @artscaping says, right now you want to sit back and think good thoughts. 1. Use the report as the first page of the journal that you’re going to start on. Highlite the things on it that you want clarification on and number them. On the backside, you can write the number with the answer as your doctor speaks. You also want to write on a separate page, questions that you may have and the doctors answer. Write everything! You could even record on your phone (if the doc is OK). 2. Take someone with you—very important! You want someone who will listen, write things down, and prompt you with questions you want to ask. I did this for a friend who had pancreatic cancer. The doctors actually prefer a second pair of ears
So, your tasks for today: find a friend or family member and just sit down and write up all your questions. Be protective by wearing a mask and self-distance. Can you do that?

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@jeremy17

Reading my report again, I see my radiologist says that the T1 hypointense marrow replacement can also be due to Brodie's abscess. I'm thinking it's that, especially since I have a soft tissue component/phlegmon.

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Hello @jeremy17

I found a bit of information about Brodie's abscess on the NIH website and I thought you might find it helpful. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367194/.

If you care to share more, what were your original symptoms that led to the testing?

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@jeremy17 – I’m joining this discussion group a little late, but I just wanted to offer my opinion.
First of all, it is not done correctly for the radiologist to give you the findings on your MRI. It causes confusion and anxiety. Your oncologist should interpret the findings for you.
Let’s hope for the best outcome and good luck!

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@becsbuddy

@jeremy17 That's a very difficult radiology report to be given. Too many big words that only experts can interpret. Just like @artscaping says, right now you want to sit back and think good thoughts. 1. Use the report as the first page of the journal that you’re going to start on. Highlite the things on it that you want clarification on and number them. On the backside, you can write the number with the answer as your doctor speaks. You also want to write on a separate page, questions that you may have and the doctors answer. Write everything! You could even record on your phone (if the doc is OK). 2. Take someone with you—very important! You want someone who will listen, write things down, and prompt you with questions you want to ask. I did this for a friend who had pancreatic cancer. The doctors actually prefer a second pair of ears
So, your tasks for today: find a friend or family member and just sit down and write up all your questions. Be protective by wearing a mask and self-distance. Can you do that?

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Yes, I will be having my wife come with tomorrow and we'll have a whole bunch of questions. Thanks!

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@hopeful33250

Hello @jeremy17

I found a bit of information about Brodie's abscess on the NIH website and I thought you might find it helpful. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367194/.

If you care to share more, what were your original symptoms that led to the testing?

Jump to this post

Hello. Original symptoms were mainly pain and swelling in my right knee, which was weird, because my other knee (that I had sugery on 20 years ago) was the one that normally gives me issues. During the MRI, they discovered a mass just below my right knee, and replacement of tibial bone marrow, so they needed to get a broader image during the follow-up MRI.

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Saturday, I did some research on the other condition that the radiologist had mentioned it could be on the report – Coccidioidomycosis (Valley Fever). When I first saw this and did quick research on it, I thought to myself, "I've never had a wound on my right knee/leg, so how can the fungus get inside?". So I pretty much dismissed it. But on Saturday, I came across a huge article online about it, and as I read through most of it, it stated so many symptoms of the disease, which actually sounded like what I may have.

Even though it only happens in a small minority of affected individuals, Coccidioidomycosis can actually disseminate through the blood to other parts of the body, including bones (especially tibia and femur). Also, being African-American (although 50%) makes me up to 10x more likely to have it disseminate. And I live in Arizona, which Valley Fever is endemic. I pull weeds in my yard every month or so, which makes sense how I could've been infected.

I took myself to the ER on Saturday, as recommended by my teledoc appointment. They sent off the blood test for Valley Fever, which should come back today or tomorrow.

I really don't want to find out I'm infected with this, but I'll think I'll take this over a malignancy.

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@jeremy17
Just because you are referred to an oncologist does not mean you have cancer. It mean it is a possibility and the oncologist can help figure it out. You may need a biopsy. My husband had a spot on his lung that was of concern. He was referred to an oncologist because of the radiology report. It turns out he had organizing pneumonia also known as boop. Still not a great diagnosis, but the biopsy ruled out cancer. My husband had already had pancreatic cancer which was discovered by accident. So scary times.

Make a list of questions and if allowed have someone go with you to help you understand your conversation with the oncologist. .. bring something to write notes on. Some doctors will let you record the session, but most not. If no one allowed to go with you ask if maybe you can have someone join the session with a video call.. Skpe or Facetime, etc. . and do that ahead of time if you can. With covid19 virus around the rules vary from place to place.

I wish I had an answer for the stress. A lot of deep breaths and doing things that normally calm you.

My thoughts and prayers are with you.
ZeeGee

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