Adult Rhabdomyosarcoma Symptoms

Rhabdomyosarcoma typically produces a tumor along or within a muscle. It would look like a round bump was growing right out of the muscle. Each type of rhabdomyosarcoma has a different target area but so little research has been done on adults that you should expect any type to appear anywhere.

The symptoms of rhabdomyosarcoma may be nonexistent until the cancer starts spreading. If the cancer is located deep in a muscle tissue or within a muscle that is inside the head/neck or pelvis area than you would never notice the tumor. In fact some people don’t get a noticeable tumor at all. This means that you don’t realize you have cancer until it starts spreading to other locations.Rhabdomyosarcoma typically spreads to the lymph nodes but depending on its location, it may spread into other tissues that are next to the tumor. If it spreads to the lymph nodes then you will start to see symptoms. When my partner’s rhabdomyosarcoma first spread to her lymph nodes, she started feeling crappy and the lymph nodes in her neck swelled up. She went to the Urgent Care clinic many times but they just told her it was a viral infection and then gave her some medicine. The symptoms that she was having are common for viral infections, mono, and different types of cancer. As she started feeling worse, if they would have drawn blood then they would’ve noticed that something was really wrong. As it was, they just continued to call it a viral infection even though her lymph nodes were rock hard and protruding out of her neck and chin to the point of painful. It wasn’t until she got it to see her regular doctor that blood was finally taken for testing. In her case the cancer had spread to the bone marrow so it was easy for them to see that something was seriously wrong with her.

The doctor’s figured that her cancer had been growing for a year before the blood test was done. Looking back this makes complete sense. She was going to Urgent Care every couple of months that year and before that she hardly every went to Urgent Care. Typically she probably would’ve gone to see her regular doctor sooner but she had a new boss who told her that she would be fired if she went to the doctor during work hours. So she set up a doctor’s appt and scheduled a day off. It had taken her three weeks to get into see her doctor and during that time she progressive got worse. She complained of flu like symptoms, body aches and pains plus she started throwing up any time she ate. She was able to go to work and just not eat anything up until that last weekend when she just couldn’t push through it anymore. The doctor took a blood test and immediately wrote her a note saying that she couldn’t go to work because she could barely walk.

The blood test at this point indicated that the cancer had spread to her bone marrow; if it hadn’t then there wouldn’t have been any indication of something wrong. Because it had spread to the bone marrow, her red cells were really low and her platelets were critically low (at 7 when they should be around 180 or more). When the doctor got the test results, she immediately sent my partner to the emergency room. From there it was seven days of tests and biopsies while they tried to figure out what was going on. She just kept getting weaker and they had to keep giving her blood and platelet transfusions to keep her going. She had a lot of bleeding and bruising from every where they tested because her body wasn’t making any platelets. Once they started her on her chemo she slept for days while her body worked through everything. The doctor’s weren’t sure if she would ever bounce back but luckily the chemo took the cancer out of the bone marrow right away and then her bone marrow started working. She wasn’t allowed to go home until her bone marrow started working on its own again but she was only in the hospital for 21 or 23 days. It was amazing. They spent 7 days figuring out what was going on and then a couple of days deciding if they were going to try the chemo on her and explaining all the risks involved. That means in approximately 14 days, not even one full cycle of chemo, the cancer was pushed out of her bone marrow and her bone marrow started working again. I just wanted to share that bit of good news.

Back to symptoms…Unless the tumor is pushing on something else that is causing some problems, there probably won’t be any. Once your body detects something is wrong, you may feel like you have the flu because your body will build up on white blood cells to try and attack the cancer. Depending on your body, because they don’t all seem to react exactly the same, it may try to shut down some symptoms in response to the unknown invader. Unfortunately you most likely will end up just feeling crappy and that is very hard to diagnosis. Rhabdomyosarcoma is very rare in adults and would be very costly to find in someone without seeing a tumor or a swollen lymph node that they can biopsy. If they can’t visually see anything, they have to run you through PET scans looking for it. PET scans are the most effective when you don’t know where the cancer is located because they can spot cancer anywhere in the body. CT Scans are most effective when they already know where they are looking and what they are looking for. Rhabdomyosarcoma is very rare, only a couple hundred cases show up every year and most of them are show up in children. There is a slim chance that a doctor is going to jump to cancer if you keep showing up with complaints of flu like symptoms, especially if you are in your 20s or 30s. There is even a rarer chance that they will suggest rhabdomyosarcoma even when they do start talking about cancer. It takes a biopsy to truly prove rhabdomyosarcoma. Hopefully you are not reading this article because you have already been diagnosed with rhabdomyosarcoma but if you have – good luck with your treatment.

by Jennifer Schroeder


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