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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

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jeremy17 | @jeremy17 | Jun 1, 2020
In reply to @becsbuddy "@jeremy17 That's a very difficult radiology report to be given. Too many big words that only..." + (show)
@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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1 reply
jeremy17 | @jeremy17 | Jun 1, 2020
In reply to @hopeful33250 "Hello @jeremy17 I found a bit of information about Brodie's abscess on the NIH website and..." + (show)
@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?

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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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1 reply
jeremy17 | @jeremy17 | Jun 1, 2020

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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ZeeGee | @fourof5zs | Jun 1, 2020

@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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 2, 2020
In reply to @jeremy17 "Hello. Original symptoms were mainly pain and swelling in my right knee, which was weird, because..." + (show)
@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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lilypaws | @lilypaws | Jun 2, 2020
In reply to @fourof5zs "@jeremy17 Just because you are referred to an oncologist does not mean you have cancer. It..." + (show)
@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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 2, 2020
In reply to @jeremy17 "Yes, I will be having my wife come with tomorrow and we'll have a whole bunch..." + (show)
@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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jeremy17 | @jeremy17 | Jun 3, 2020

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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1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jun 3, 2020

@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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