Astrocytoma and reoccurring Osteosarcoma

Posted by mmccarter62 @mmccarter62, Sat, May 18 7:52pm

My 21 yr old son was diagnosed with 2 astrocytoms in Feb. He immediately had surgery to remove one and the other is in the center of his head and in operable. He is currently doing chemo and Proton therapy radiation at Emory University in Atlanta. We just found another tumor at at the base of his knee, same site as his Osteosarcoma from 2004. We see orthopedic surgeon on Monday. How rare is it to have both cancers at o e time? And should we seek advice from Mayo or can they also consult with Emory University? He is 21 and his whole life ahead of him. I need help!

Liked by Dee

Hello @mmccarter62 and welcome to Mayo Connect.

I can understand your concern for your son. He certainly has a lot to deal with as he begins adulthood. If you are interested in a consult with Mayo Clinic, here is where you can call for more information, Mayo Clinic in Florida; phone number: 904-953-7000; 904-953-7329 (Fax).

How is your son dealing with all of these health challenges?

Liked by Dee, bookysue

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Hi @mmccarter62 and welcome to Connect. That must be so scary to have your son be going through this.

I wanted to introduce you to @carol55 @jkenser and @aworriedmom as they have experience with astrocytomas and may be able to offer you support.

Also these forums may be helpful:
– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-a-polycystic-astrocytoma-as-an-adult-our/
– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? https://connect.mayoclinic.org/discussion/can-anyone-recommend-a-great-neurosurgeon-for-my-34-year-old-daughter/

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

Back to you @mmccarter62 How is your son feeling during treatment?

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@hopeful33250

Hello @mmccarter62 and welcome to Mayo Connect.

I can understand your concern for your son. He certainly has a lot to deal with as he begins adulthood. If you are interested in a consult with Mayo Clinic, here is where you can call for more information, Mayo Clinic in Florida; phone number: 904-953-7000; 904-953-7329 (Fax).

How is your son dealing with all of these health challenges?

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Well he seemed to be dealing rather well with brain tumors. Eating well and exercising. Chemo and radiation don't seem to be affecting him too bad. Just a little less of appetite. Now the possible reoccurrence of the osteosarcoma is another beast. Preparing for possible full amputation of his left leg. He list his femur and hip back in 2004 and had a prosthetic in plant to take it's place. Not sure if it's possible to keep his leg since it's already mostly metal. He is Young and strong and hopefully will push thru all of this. He is a fighter so I look for him to continue doing what it takes to get better. Thanks for all the info. I will start digging in.

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@mmccarter62

Well he seemed to be dealing rather well with brain tumors. Eating well and exercising. Chemo and radiation don't seem to be affecting him too bad. Just a little less of appetite. Now the possible reoccurrence of the osteosarcoma is another beast. Preparing for possible full amputation of his left leg. He list his femur and hip back in 2004 and had a prosthetic in plant to take it's place. Not sure if it's possible to keep his leg since it's already mostly metal. He is Young and strong and hopefully will push thru all of this. He is a fighter so I look for him to continue doing what it takes to get better. Thanks for all the info. I will start digging in.

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@mmccarter62 Wishing you and your son all of the best. Will you keep in touch and provide updates?

Liked by Dee

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@mmccarter62 — I can only imagine how your son's new diagnoses are affecting you both. You both are probably going through all sorts of emotions at this moment — It is so scary to know that something may be or is terribly wrong with our children (or grandchildren, as in my case). I know I felt the orthopedist had just punched me square in the chest, when he started with the words "I don't want to alarm you, but … " and the word "Oncologist" was the next punch. I felt as if I couldn't breath!

You are on the "right track" in seeking advice from other centers such as the Mayo Clinic. I would certainly encourage you to get information on how to reach them by phone and e-mail. Others have already given you information about Mayo. However, if you are interested in other Medical Centers, go on each of their websites; you will find they have a "coordinator" for care and consults. That's where I would begin.

Also, inquire about on-going or future Clinical Trials and see if your son is eligible for such programs. How to Search:

Learn how to use ClinicalTrials.gov search features to find studies:
https://clinicaltrials.gov/ct2/help/how-find/index

"Cancer
The National Cancer Institute (NCI) is the U.S. Government's principal agency for cancer research and training. Most other U.S. Government agencies that conduct cancer research, such as the U.S. Department of Defense and the U.S. Department of Veterans Affairs, do so in partnership with NCI. https://www.cancer.gov/

Visit NCI's Clinical Trials page: https://www.cancer.gov/about-cancer/treatment/clinical-trials?redirect=true
to find information on cancer studies, read about noteworthy clinical studies, find resources for researchers, and browse the results of clinical studies by type of cancer."

"NIH Clinical Center

The NIH Clinical Center in Bethesda, MD, is the research hospital of NIH. https://www.cc.nih.gov/
The NIH Clinical Center website provides information for potential participants, their families, and doctors about participating in clinical studies at the center."

I hope above information may help you to focus your efforts. If you need help, let me know and I will be happy to help you, if I can.
Keep strong! –Dee

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Thank you for your comments and advice. Very helpful. Trying to get in front of if possible!

Liked by Dee

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@mmccarter62

Thank you for your comments and advice. Very helpful. Trying to get in front of if possible!

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@mmccarter62. I understand. Remember there is a "nework" of support available AND willing to help … Stay strong! — Dee

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