I'm a parent of an adult child, recently diagnosed with astrocytoma

Posted by aworriedmom @aworriedmom, Fri, Jan 4 7:55am

Due to privacy concerns, I will keep this as anonymous as possible. I have a child in early thirties who was recently diagnosed with a grade 2 astrocytoma. There is reluctance to seek a second opinion from Mayo (or any other world-renowned facility). I am a nurse and feel that it’s very important. I don’t know that current doctor is not good; I just feel like with something this serious, there needs to be more than one set of eyes and one brain. If I can talk my child into it, what is the cost of a second opinion –based on medical records — at Mayo? I have done some internet research and some of it seems very hopeless. I don’t want to take a chance of alienating my child if a second opinion wouldn’t even do any good. Advice, please? I will fight as hard as I have to (and risk him getting mad at me) as long as I know it’s not futile. Genetics show that the tumor is IDH mutant positive but missing the 1p19q chromosome co-deletion which, as I understand it, worsens the prognosis.

Liked by mrector

What has his Dr. recommended?

@carol55

What has his Dr. recommended?

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Hi there. Thank you for replying. He has had two surgeries so far and the tumor has been debunked by about 90%. He is in the midst of a 6-week cycle of combined Temador and radiation and is currently in week 4. The doctor has only given him the options of surgery, chemo and radiation. I don't know that there is anything better but I just want him to have all of the information in order to make the most informed decisions that he can. I had a victory at lunch time today with him. He has agreed to seek a second opinion from a doctor at Mayo as soon as this treatment cycle is completed! He said that way if it comes back, they will already be prepared to make recommendations for treatment. This was a major victory because up until now, he was staunchly against a second opinion. I felt very good about the conversation because it wasn't highly dramatic and I didn't put him on a guilt trip. 🙂 It was just a very calm discussion, full of mutual respect.

My husband has a grade 3 astrocytoma diagnosed at Mayo Rochester after having an MRI done by his GP in our city. Sounds like your son has had the similar protocol, except my husband could not have surgery because of location of tumor. He has done most of his treatment at Mayo and we have been pleased with his Mayo doctors. Has been wearing Optune cap for 7 months. Wish I could communicate with you by email or personal message and give you more details.

@carol55

My husband has a grade 3 astrocytoma diagnosed at Mayo Rochester after having an MRI done by his GP in our city. Sounds like your son has had the similar protocol, except my husband could not have surgery because of location of tumor. He has done most of his treatment at Mayo and we have been pleased with his Mayo doctors. Has been wearing Optune cap for 7 months. Wish I could communicate with you by email or personal message and give you more details.

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Hi Carol. I'm sorry to hear that your husband (and you) are on this journey as well. Now that my son has finally agreed to a second opinion, I'm curious how to seek the best (most experienced) doctor for this particular type of tumor. I thought Optune was only for glioblastoma? (I don't know much about it at all.). I was attempting to send you my email address but the server wouldn't let me, saying that since I am a newly registered member, I'm not allowed to. Can you send me yours? (I don't yet know how to send private messages.)

@aworriedmom

Hi Carol. I'm sorry to hear that your husband (and you) are on this journey as well. Now that my son has finally agreed to a second opinion, I'm curious how to seek the best (most experienced) doctor for this particular type of tumor. I thought Optune was only for glioblastoma? (I don't know much about it at all.). I was attempting to send you my email address but the server wouldn't let me, saying that since I am a newly registered member, I'm not allowed to. Can you send me yours? (I don't yet know how to send private messages.)

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Hello @carol55 and @aworriedmom. I can help provide tips on how to send personal messages if you wish to exchange personal details, but we do encourage you to share your experiences with everyone because your experiences may be helpful to other members. The information you share may encourage others to seek additional opinions or give them additional questions to ask their providers when they seek more help. Here is how you can send private messages, although as @aworriedmom pointed out, some features are not available when first joining Connect as this is a way to protect members from getting spam messages from solicitors. This function will be available to you after a few days, or a few more posts:

Here's how to send private message.
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Justin,
I understand the need to share with everyone. I just wanted to give her some specific names at Mayo and wasn't sure if Mayo wanted me to do that. I will share more for everyone. There are very few of us out there dealing with the anapestic astrocytoma.

Hi @carol55 and @aworriedmom, I really appreciate that you are both conscientious about privacy concerns and naming specific clinicians at Mayo. You can see more about sharing safely on Connect in the Community Guidelines: https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/

Carol, yes you can share the names of clinicians, especially recommendations.
AWorriedMom, I can sense your relief that your son is considering a second opinion. Have you seen this article? "Mayo Clinic researchers demonstrate value of second opinions" https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

You both may be interested in these discussions on Connect as well:
– 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/

I second Justin's suggestion that sharing on the forum has a greater benefit to more people. In fact, it is because members before you chose to share openly that I am able to provide links to past discussion that contain nuggets of experience and wisdom.

Carol, I bet @bjh369 would appreciate hearing about your husband's experience with the Optune cap as s/he will be having this treatment in a few weeks. is it a tolerable treatment?

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