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

Posted by jeremy17 @jeremy17, May 30, 2020

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

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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🙏🙏🙏🙏🙏🙏🙏

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@jeremy17

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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Hello @jeremy17,

I am once again impressed with all of the research you are doing. That's just great! Keep on advocating for yourself, you are doing a great job!

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@fourof5zs

@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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@fourof5zs , jeremy17, I feel what @fourof5zs is right on the button, if you know what I mean. She knew just what to say and I felt it was good advice. Stay in there Jeremy. There's a God up there watching over you. Keep on researching. Also, let the spirit into your heart, I know that's hard when you feel so bad and anxious. Take care my man and my thoughts and prayers will be with you.

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@jeremy17

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

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@jeremy17 sounds like you’re getting everything together! One thing to also know is that oncologists are also hematologists, they study and treat blood. Please let us know what you learn. Will you do that?

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Went to the oncologist yesterday. My Valley Fever result came back right before my appointment, which was negative. After seeing how serious he looked during the appointment, I asked the ortho oncolgist, from his experience, what the odds were that it was cancer. To my surprise, he said 65 percent! 🙁 However, I'm still trying to remain hopeful that it's benign. I have my biopsy tomorrow (talk about quick scheduling!), so I should have tests back by next week.

This is an emotional rollercoaster!

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@jeremy17 – Good luck tomorrow with the biopsy! Hope for the best. If it’s cancerous it can be treated very well nowadays. I had breast cancer 28 years ago, aggressively treated and I’m still fine. Just older! Are you bringing someone with you? We will be thinking of you

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I hope that the pathologist also considers the possibility of Langerhans Cell Histiocytosis in examining the biopsy tissue. It is very rare,especially in adults, and consequently can take a long time to be diagnosed. It is slightly more common in children. I have skin only, but it more commonly causes bone lesions. It is a blood disease, but only can be diagnosed with biopsy of lesions. Skin and bones are most common, but lungs, spleen,bone marrow And other systems can be affected.

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@jeremy17

Went to the oncologist yesterday. My Valley Fever result came back right before my appointment, which was negative. After seeing how serious he looked during the appointment, I asked the ortho oncolgist, from his experience, what the odds were that it was cancer. To my surprise, he said 65 percent! 🙁 However, I'm still trying to remain hopeful that it's benign. I have my biopsy tomorrow (talk about quick scheduling!), so I should have tests back by next week.

This is an emotional rollercoaster!

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@jeremy17 I hope it well. Let us know the results. We are here a anytime you need to talk.

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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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Good afternoon @jeremy17, I just stopped by this discussion to see how things were going for you. I notice that you had a meeting with your oncologist. How did that go? What did you learn? Was it helpful to have your wife with you to take notes. and what kind of a reception did your list of questions get from the clinician?

In your reply, you asked me some questions. I wanted to make sure and get back to you after my appointment. Also, I wanted to clarify my sentence about having the same words on both your report and mine. I was referring to standard terms like malignant, benign, tissue, cell, carcinoma, etc. My symptoms are not the same as yours.

So here is mine.
Diagnosis: Invasive well-differentiated squamous cell carcinoma.

Essentially, this means that the tumor that connects with my sternum is malignant. The first step is another surgical procedure next week to make sure everything is removed. Then there will be more tests after healing and some thought about continued prevention if required. So I will probably be doing some treatment research.

Where are you in your journey? I am very interested in your progress emotionally as well as physically. Staying calm and controlled is very healthy. Having a "buddy" to be with you is a major plus when it comes to managing health issues. I am very lucky in that department. I hope you are also working together as partners with your team of clinicians and your wife/family.

May you have happiness and the causes of happiness.
Chris

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@artscaping

Good afternoon @jeremy17, I just stopped by this discussion to see how things were going for you. I notice that you had a meeting with your oncologist. How did that go? What did you learn? Was it helpful to have your wife with you to take notes. and what kind of a reception did your list of questions get from the clinician?

In your reply, you asked me some questions. I wanted to make sure and get back to you after my appointment. Also, I wanted to clarify my sentence about having the same words on both your report and mine. I was referring to standard terms like malignant, benign, tissue, cell, carcinoma, etc. My symptoms are not the same as yours.

So here is mine.
Diagnosis: Invasive well-differentiated squamous cell carcinoma.

Essentially, this means that the tumor that connects with my sternum is malignant. The first step is another surgical procedure next week to make sure everything is removed. Then there will be more tests after healing and some thought about continued prevention if required. So I will probably be doing some treatment research.

Where are you in your journey? I am very interested in your progress emotionally as well as physically. Staying calm and controlled is very healthy. Having a "buddy" to be with you is a major plus when it comes to managing health issues. I am very lucky in that department. I hope you are also working together as partners with your team of clinicians and your wife/family.

May you have happiness and the causes of happiness.
Chris

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Hello @artscaping

I am sorry to hear that surgery will be needed. Has a surgery date been set yet?

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