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

Interested in more discussions like this? Go to the Cancer Support Group.

Excellent! I feel relieved for you,don’t you? A diagnosis by a recognized doctor is the first step,to recovery. That doctor will stay with you,advise you, and help to,lead you toward recovery. I have recovered from two cancers because of regular and sustained care and encouragement. If you have questions ask them. If you are not satisfied with the answers ask other doctors recommended to you. There is some excellent work going on to defeat cancer. Stay positive.

REPLY

Hello everyone. Just an update. I actually still haven't received treatment, as my liver shows some lesions as well. The liver MRI is indeterminate, with a 1.5 cm lesion and a few other lesions less than 5mm. No signs of cirrhosis, steatosis or iron deposition. Praying these are all benign, as I understand 20 percent of the population has benign liver lesions. But if they are cancerous, hopefully it's Lymphoma, as I understand it's still treatable.

I recently had a second opinion and to my surprise, the doctor called it Stage IV, even though all of my lymphoma seems to be dedicated in/next to my tibia bone. I thought it had to have spread to another organ, or pop up in the bone marrow (e.g. from hip) to be considered Stage IV. But the doc also said with my Lymphoma, the stage doesn't affect the treatment, so it's really no big deal.

Due to the chance that I may have a higher grade, since my KI-67 (proliferation) is approx. 50%, they recommend a second tibia bone biopsy to try to determine if it is, in fact, a higher grade. Then they would recommend RCHOP, as opposed to BR chemo, both possibly followed by radiation. I was hoping to have radiation only, but they say that with my NHL follicular lymphoma, it's likely it's elsewhere in my body. 🙁

I may even decide to acquire a third opinion. But I want to start treatment ASAP.

REPLY

@jeremy17 Oh it must be so scary for you. My thoughts and prayers will be with you. Let us know what comes up. Take care of yourself. I know that can be hard, because I had a 9 hour fusion back surgery in June and I can't bend, twist, or lift anything more than 10 pounds. My bones are soft so I have to be careful that I don't pull out a screw or break a rod in my back. I do wear a brace. The surgery went from T10 to my pelvis. I'm sorry I should not be telling you my problems. It's just I don't have patience to wait to heal, which is probably a whole year. But my situation is not nearly as bad as yours. Remember there are people out here that cares about you and I hope you have some support.

REPLY
@lilypaws

@jeremy17 Oh it must be so scary for you. My thoughts and prayers will be with you. Let us know what comes up. Take care of yourself. I know that can be hard, because I had a 9 hour fusion back surgery in June and I can't bend, twist, or lift anything more than 10 pounds. My bones are soft so I have to be careful that I don't pull out a screw or break a rod in my back. I do wear a brace. The surgery went from T10 to my pelvis. I'm sorry I should not be telling you my problems. It's just I don't have patience to wait to heal, which is probably a whole year. But my situation is not nearly as bad as yours. Remember there are people out here that cares about you and I hope you have some support.

Jump to this post

Jeremy, my thoughts and prayers are with you.
Nancy

REPLY

Take one day at a time. If you are a believer, ask God to help you deal with whatever the results of your tests. Then, know that you are not alone in your journey.

REPLY

Hello Jeremy. I am another mentor here on Connect, have been interested in your journey and must say you impress the heck out of me. You have climbed on board the self advocacy train and done a remarkable job for yourself. I cannot improve on any help my fellow Mentors have done for you but I would like to offer you some hope. Sixteen years ago this coming October I was given a cancer diagnosis. At that time, with available treatment, there was an expected 3-5 year life expectancy. I signed on for all that was available. As years progressed, there was enormous research progress for blood cancers. Today I am in full remission. I know there is a good chance my particular cancer will return as there is no cure, but I also know that already there is a list of new treatments that will be available to me with more coming out the pipeline. Next year I will be 80 years old with no plan to slow down more than age has asked for. So continue to keep informed, do what is needed, then live life as you want and can while that is happening. If you see a turn in the road, put on your signal, check the map, and plan the next stretch of road. Then kick back again and enjoy the ride. This cancer can't take anything from you that you don't give it, and certainly doesn't have to define you. Carry on and continue to lean on the friends you have found here on Connect. They won't walk away.
Peace, Nancy

REPLY
@jeremy17

Hello everyone. Just an update. I actually still haven't received treatment, as my liver shows some lesions as well. The liver MRI is indeterminate, with a 1.5 cm lesion and a few other lesions less than 5mm. No signs of cirrhosis, steatosis or iron deposition. Praying these are all benign, as I understand 20 percent of the population has benign liver lesions. But if they are cancerous, hopefully it's Lymphoma, as I understand it's still treatable.

I recently had a second opinion and to my surprise, the doctor called it Stage IV, even though all of my lymphoma seems to be dedicated in/next to my tibia bone. I thought it had to have spread to another organ, or pop up in the bone marrow (e.g. from hip) to be considered Stage IV. But the doc also said with my Lymphoma, the stage doesn't affect the treatment, so it's really no big deal.

Due to the chance that I may have a higher grade, since my KI-67 (proliferation) is approx. 50%, they recommend a second tibia bone biopsy to try to determine if it is, in fact, a higher grade. Then they would recommend RCHOP, as opposed to BR chemo, both possibly followed by radiation. I was hoping to have radiation only, but they say that with my NHL follicular lymphoma, it's likely it's elsewhere in my body. 🙁

I may even decide to acquire a third opinion. But I want to start treatment ASAP.

Jump to this post

Hello @jeremy17
I so appreciate your update. You are approaching this in a very wise fashion. Getting multiple opinions is so very important. I'm glad to know that you are looking for the best treatment plan and diagnosis.

How are you feeling these days?

REPLY
@jeremy17

Hello everyone. Just an update. I actually still haven't received treatment, as my liver shows some lesions as well. The liver MRI is indeterminate, with a 1.5 cm lesion and a few other lesions less than 5mm. No signs of cirrhosis, steatosis or iron deposition. Praying these are all benign, as I understand 20 percent of the population has benign liver lesions. But if they are cancerous, hopefully it's Lymphoma, as I understand it's still treatable.

I recently had a second opinion and to my surprise, the doctor called it Stage IV, even though all of my lymphoma seems to be dedicated in/next to my tibia bone. I thought it had to have spread to another organ, or pop up in the bone marrow (e.g. from hip) to be considered Stage IV. But the doc also said with my Lymphoma, the stage doesn't affect the treatment, so it's really no big deal.

Due to the chance that I may have a higher grade, since my KI-67 (proliferation) is approx. 50%, they recommend a second tibia bone biopsy to try to determine if it is, in fact, a higher grade. Then they would recommend RCHOP, as opposed to BR chemo, both possibly followed by radiation. I was hoping to have radiation only, but they say that with my NHL follicular lymphoma, it's likely it's elsewhere in my body. 🙁

I may even decide to acquire a third opinion. But I want to start treatment ASAP.

Jump to this post

@jeremy17 - Being a cancer survivor myself I know how important it is to get enough opinions to make you comfortable with the decisions you make. I don't know where you live or the experience of your oncologist, but look for cancer centers near you that seem to have specialists in that field and get another opinion.

REPLY
@1nan

Hello Jeremy. I am another mentor here on Connect, have been interested in your journey and must say you impress the heck out of me. You have climbed on board the self advocacy train and done a remarkable job for yourself. I cannot improve on any help my fellow Mentors have done for you but I would like to offer you some hope. Sixteen years ago this coming October I was given a cancer diagnosis. At that time, with available treatment, there was an expected 3-5 year life expectancy. I signed on for all that was available. As years progressed, there was enormous research progress for blood cancers. Today I am in full remission. I know there is a good chance my particular cancer will return as there is no cure, but I also know that already there is a list of new treatments that will be available to me with more coming out the pipeline. Next year I will be 80 years old with no plan to slow down more than age has asked for. So continue to keep informed, do what is needed, then live life as you want and can while that is happening. If you see a turn in the road, put on your signal, check the map, and plan the next stretch of road. Then kick back again and enjoy the ride. This cancer can't take anything from you that you don't give it, and certainly doesn't have to define you. Carry on and continue to lean on the friends you have found here on Connect. They won't walk away.
Peace, Nancy

Jump to this post

I like your attitude.

REPLY

Hello everybody, and Happy New Year! I'm so sorry I haven't updated in such a long time, but it took a while for me to finally make a treatment decision and get the actual treatment. Thank you so much for all of the kind words from the various mentors and people that have a genuine interest in my disease. I appreciated the uplifting comments during this very difficult time in my life.

My doctor recommended Bendustamine (chemo) and Rituxan (immunotherapy), followed by radiation as a first-line treatment for my low-grade lymphoma of the tibia bone. Even though my doctor doubted it, he couldn't rule out the liver lesion or a tiny inguinal nodule being lymphoma, so I believe that's the main reason why he recommended that route. After careful consideration, I ended up forgoing the chemo, and chose to begin with radiation (15 sessions), followed by four Rituxan infusions. The main reason for this choice was because I was concerned about the toxicity and possible long-term side effects of chemo, despite Bendastamine not known to be as harsh as some of the other chemos. I just felt like trying the radiation and Rituxan first, and if my lymphoma didn't respond, then electing for the chemo.

I found out a little over a month ago that my lymphoma significantly responded to the treatment! In fact, my doctor says I'm currently in remission! I was told that my type of lymphoma, B-cell follicular lymphoma, is not curable, and is known to follow a remission and relapsing cycle for many years. However, I was told also that if it's only in one area of my body (which the scans currently show), then it is possible for it to be cured! I believe that anything is possible with God!

I'm very grateful to God for this wonderful news! I truly believe that the many prayers that were prayed helped make a difference! Thank you, again!

REPLY
Please sign in or register to post a reply.