Astrocytoma Survivor and Caregiver Journey

[@HannahLaxson]

Hey JC! I would just like to say, my dad is also a long term survivor of a grade3 Anaplastic Astrocytoma! He was diagnosed in 2004, still to this day he suffers from seizures. My Dad has been through the mill, but he is a very strong person. He also suffered a stroke 2 years ago and while he was in the hospital for the stroke he was told he also had a brain aneurysm building. He has always wanted to be able to talk to someone like him who has beat all odds!! He is truly my hero and someone I look up to. I’m so glad you were able to get through all the things you have!

[@jumobeats9002]

Thanks for sharing, I can relate completely. I’m also fighting the same brain tumor...

[@joeysaunz]

Our eldest son (27 years of age ) has just had 85% of an Astrocytoma removed . He is having another operation this Tuesday to excise as much more of it as they can . Then chemo and radiotherapy. I’m so glad to see JC has managed to be well for so long . We are looking at our lives and thinking , we will do things better or differently for sure . Thank you for sharing !!!

[@NCIgov]

Dear Jo, We are sorry to learn of your son’s diagnosis. If you have any questions, we invite you to contact the NCI’s Cancer Information Service here: www.cancer.gov/contact. We extend our best wishes for your son’s health. Take care.

[@omidzandvakili8231]

Thank you for sharing your story JC and Luann. It must not have been easy for you to go through this path. I was recently diagnosed with this type of brain cancer. I did the surger December 2021 in BJC in st Louis and now am waiting for the oncologist to set a time for radiation therapy in MGH in Boston MA. I can't imagine what my sister and mom went through during this time. I will have to do chemotherapy and find a clinical study. it is scary, the path is not easy at all but my mom predicted that I will survive this until I am 99.5 years old and laugh this out with my sister. I hope NCI has some offer for clinical studies or new available treatments if any.

[@NCIgov]

Hi Omid, We are sorry to learn of your diagnosis with astrocytoma. We invite you to contact the NCI's Cancer Information Service (CIS) for information about clinical trials: www.cancer.gov/contact. CIS is available by calling 1-800-4-CANCER (1-800-422-6237) and pressing 2 to speak with a clinical trial specialist or through an internet chat service. Take care.

[@deflorieeflower]

Hi.. I was also diagnosed with anaplastic astrocytoma at 2010, when I was 29 ,did the surgery, full course of chemo with temozolomide for 60cycle and radiation of 30cycle It's been 12 years of surviving, lately I wondering how many years more I can have.. Sometimes it is hard to share I still easily get emotional, would like to find anyone who survive longer

[@NCIgov]

Hi defloriee flower, It sounds like you have been through a lot and we commend you on 12 years of survivorship. It’s natural to wonder what the future holds, but is important to remember that statistics on the survival rates for people with a brain tumor are only an estimate and can vary widely. It is always difficult to apply group statistics to individuals because no two people are exactly alike. Therefore, the very best source for this kind information is the doctor or member of the team that treated you because they have all of the details of your particular case. You can learn more about what factors affect prognosis at www.cancer.gov/about-cancer/diagnosis-staging/prognosis. Because it's been many years since your surgery, it's important to work with your health care team to discuss what follow-up is needed at this time and develop a plan to check that the cancer has not come back, manage any side effects you may have from the surgery (if any), and monitor your overall health. Find resources about how to adjust to physical and emotional changes, deal with common family issues, and plan for follow-up care after treatment at www.cancer.gov/about-cancer/coping/survivorship. Although we aren’t able to connect you to other patients, it may be helpful for you to speak with others who have been through a similar experience. There are several organizations that offer matching services, support groups or other types of emotional support. You can search our list of national organizations at supportorgs.cancer.gov/home.aspx?js=1. You are also welcome to contact our NCI’s Cancer Information Service to speak with an information specialist here www.cancer.gov/contact. We wish you all the best.

[@CancerResearchDemystified]

Thank you for making & sharing this! :)

[@mindfortress105]

I got it at age 31, grade 3, surgeon says the tip might be even grade 4 but he couldn't reach that deep. Best part is that i'm sentenced to spend the rest of my life doing horrible things to my body just to prolong the suffering

[@NCIgov]

We are sorry to hear about your diagnosis and the challenges of ongoing treatment. If you would like additional information about managing side effects, survivorship or emotional support resources, please contact NCI’s Cancer Information Service at www.cancer.gov/contact. Take care.

[@kathy7602]

Thank you for sharing your story. I appreciate your openness while feeling hopeful. My adult daughter was diagnosed with Anaplastic Astrocytoma in 3/2019. Her tumor was located in the left temporal region of her brain which effects speech/language. The neuro-surgeon could not remove the entire tumor without leaving her completely aphasic. She's "chatty," and would rather have the ability to communicate. Radiation and chemo afterwards during COVID. She's stable now and sometimes has trouble finding the right word. She remains in good spirits and chooses not to Google a lot of info, which is OK with me. It's her journey and I am just along for the ride. How are you doing now? Thank you again.

[@NCIgov]

Hi Kathy, we are sorry to learn of your daughter’s diagnosis with anaplastic astrocytoma and all that she has been through. We hope you will understand that due to confidentiality we are unable to provide updates on JC, and his wife Luann. We invite you to contact the NCI's Cancer Information Service (CIS) for information and support: www.cancer.gov/contact. Take care.

[@christinawilliams6627]

Thank YOU for sharing!

[@punitasharma6317]

Thank you for sharing I am also undergoing the same situation and get some time negative . When was your treatment completed

[@NCIgov]

Hi Punita, We are sorry to learn of your diagnosis. Although we are unable to say when anaplastic astrocytoma survivor JC completed treatment, you may wish to contact NCI’s Cancer Information Service for information and support: www.cancer.gov/contact. Take care.

[@Pectabyte]

Is he rare or are there many people living this long after diagnosis and treatment? Why is Google so full of dark and hopeless and optimism so quiet and buried?

[@NCIgov]

Hi Alexander, There are several different types of astrocytomas and the prognosis (likely outcome of the disease) depends on many factors. These factors include the age of the patient, if genetic alterations are present, the tumor size and ability to fully remove the tumor with surgery. If you are interested in learning more about brain tumors, we encourage you to explore our Brain Tumors Home Page at www.cancer.gov/types/brain. Take care.

[@masha-spring]

My sister-in-law also had this same Anaplastic astrocytoma grade 3 (diagnosed in 2021,june). After her normal delivery of 26th day, she had continous seizure, then finally diagnosed and tumour had been removed, chemo and radio therapy 30 cycles are completed. But her walking is little bit affected. Ongoing physiotherapy is there. Her son is now at his 1.5years.Last MRI before 2 months showed no malignant cells is there. But I wish to know the prognosis. Could anyone help me, please?

[@NCIgov]

Hi Masha, We are sorry to hear about your sister-in-law’s diagnosis and the side-effects she is experiencing, but glad to hear that her treatment went well overall. Prognosis will depend on many factors. “Remission” is the term used when there are no signs of cancer after treatment. However, because there is the chance that cancer can come back, a doctor usually monitors a patient for several years and do tests to look for signs of cancer’s return. Your sister-in-law’s doctor will be in the best position to discuss her prognosis and any necessary continued follow-up care. You can read more about prognosis at www.cancer.gov/about-cancer/diagnosis-staging/prognosis#cure-remission-difference. Take care.

[@debschaal]

Thanks for sharing , it wasn’t mention in video the grade of tumor. I was just wondering. My son has grade 4

[@NCIgov]

We are sorry to hear about your son’s diagnosis. The patient in this video had a diagnosis of anaplastic astrocytoma, which is considered a Grade 3 brain tumor. If you have questions about your son’s situation, we invite you to contact NCI’s Cancer Information Service at www.cancer.gov/contact. Take care.

[@helenakantorska7029]

My son has been diagnosed wiht high-grade pontine glioma in brainstem after being first diagnosed with Bell plays and taking medication for that for two months. It been hell for him and for for em as a mother as well. No one wants to remove it in UK so they do not give us hope only radiation and that is all. I'm looking if anyone has any info to a good neurosurgeon who is not afraid of challenges please share contacts.

[@NCIgov]

Hi Helena, We are sorry to learn of your son’s diagnosis and all you have both been through. As the United States lead cancer research agency, we have limited information about doctors in other countries. To learn about local resources, you may wish to contact cancer organizations in in the UK or nearby countries. You can search for cancer organizations near you at icisg.org/membership/membership-list/ and www.uicc.org/membership. Take care.

[@helenakantorska7029]

@@NCIgov Thank you for the info. The problem is that no one really want to help. I will use the sources to try and find something. Silly is that there is no world wide data base of doctors that are willing to take a challenging case. Because I do nto know the information I may miss a doctor who is out there and he/she may be ready to take a case liek ours.

[@aaratrikabanrjee16]

I am having same issue Can you please suggest me the diet and Any specific supplements you used???

[@NCIgov]

We are sorry to hear about your diagnosis. There are no studies that prove that any special diet, food, vitamin, mineral, dietary supplement, herb, or combination of these can slow cancer, cure it, or keep it from coming back. Eating Hints covers eating problems that may be caused by cancer and its treatment. Learn about common eating problems and ways to manage them at www.cancer.gov/publications/patient-education/eatinghints.pdf. We do know that a diet with a focus on plant-based foods along with regular exercise will help cancer patients keep a healthy body weight, maintain strength, and decrease side effects both during and after treatment. Your doctor or a dietitian may be able to address any additional questions you have. Take care.

[@saredodevil]

Por favor Dios mío, ayuda a mi tío, está luchando contra un cancer cerebral, ya tiene un ventrículo peritoneal en el cerebro, y ahora le están dando quimioterapia, por qué la telozolomida, no le hizo efecto

[@NCIgov]

Hola Chrisitan. Sentimos mucho saber sobre la situación de su tío y entendemos que busque otras formas de tratamiento para él. Aunque no ofrecemos ayuda directamente, tenemos información que le pueda ayudar a usted y a su tío. Es importante saber que existen distintos tipos de tumores cerebrales que son cancerosos y estos se tratan de acuerdo al tipo de tumor. Puede leer más sobre esto aquí: www.cancer.gov/espanol/tipos/cerebro Tenga la confianza de compartir este sumario con el equipo médico para saber cómo se compara la situación de su tío. Aunque no sabemos en dónde se encuentra su tío, el siguiente enlace tiene información general sobre servicios médicos dentro y fuera de los EE.UU. donde le puedan ofrecer información sobre ayudas que su tío pueda necesitar cerca de él: www.cancer.gov/espanol/cancer/manejo-del-cancer/servicios Le deseamos lo mejor.

[@nemiaponciano5394]

I'm nemia ponciano diagnosed brain tumor astrocytoma grade 2 I suffer sever head each sever zesure and immediately undergo operation 1 month radiation teraphy and 1 year telezonamide 2 tab a day for 5 days per month hope God will be help me to survive

[@NCIgov]

Hi Nemia, we are sorry to learn of your brain tumor diagnosis and thank you for sharing your story. If you have any cancer related questions, we invite you to contact the NCI's Cancer Information Service (CIS) for information: www.cancer.gov/contact. Take care.

[@nikkishukla1771]

Hi my husband is having left front lobe low grade glioma favouring adult diffuse astrocytoma CNS grade 1 . Docter detected his tumor when he had a 3 rd seizure . They have done a biopsy and he is on active wait and watch process .. we have done with 2 MRI in year and there is no change in size as of now . What will the survival rate

[@NCIgov]

Hello, we are sorry to learn of your husband's diagnosis. The prognosis (or likely outcome) for individuals with low-grade gliomas, such as adult low-grade diffuse astrocytoma depends on various factors, including specific genetic mutations, age, treatment options, and the overall health of the patient. Your husband's doctor is in the best position to discuss his prognosis, and you may find this link helpful in navigating the conversation www.cancer.gov/about-cancer/diagnosis-staging/prognosis. For information on adult brain tumors, please see www.cancer.gov/types/brain/patient/adult-brain-treatment-pdq. It's important to continue regular monitoring and follow-up with his healthcare team to manage and assess any changes over time. We wish you both the best.

[@AjitSingh-x5t]

My younger brtoher had astrocytoma grade 1 which is recurrence again patient on ventilator from 7 month brain stem glioma 😢😢😢

[@NCIgov]

We are so sorry to hear about what your brother and family are going through. If you have cancer questions or are looking for support resources, please contact NCI’s Cancer Information Service at www.cancer.gov/contact. Take care.

[@abhidhaverma8712]

Hello, my father has been diagnosed with grade 4 astrochytoma. He is undergoing radiation therapy. Will he be back to normal after the treatment, are there any risks?

[@NCIgov]

Hi Abhidha, We are sorry to hear about your father’s diagnosis. Every treatment has possible risks as well as benefits. Radiation therapy can have side effects. Some side effects are short term and go away after treatment ends. Others can be long term. You can read more about the common side effects of radiation therapy at www.cancer.gov/about-cancer/treatment/types/radiation-therapy/side-effects. Your father’s doctor will be in the best position to discuss the potential risks and benefits of his treatment and how to help manage side effects. Take care.

[@abhidhaverma8712]

@@NCIgov thank you for helping me out, also is there any possibility of better treatment in the USA? We are currently located in India and plan on shifting to USA soon.

[@debschaal]

So Jc did you go to this place for trials in tumor?

[@NCIgov]

The patient received surgery at the National Institutes of Health (NIH) and then participated in a clinical trial at Winship Cancer Institute in Atlanta, GA. Take care.

[@krishnakiranmishra9896]

Sir My cousin has an anaplastic astorcytoma grade 3 3 months ago.Her dr. Said it was caught early and the tumor was small sized so doctor treated her with radiotherapy and chemotherapy and lastly with some other treatment my cousin's biopsy came -ve. Now doctor saying she is fine. Sir please tell me is she cured now?? Is there any other problems for her future?or any life risk for her?? Sir please reply 🙏🏻she is only 18

[@NCIgov]

Hi Krishna, We are sorry to hear about your cousin’s diagnosis, but glad to hear that her treatment went well. “Remission” is the term used when there are no signs of cancer after treatment. However, because there is the chance that cancer can come back, a doctor usually monitors a patient for several years and do tests to look for signs of cancer’s return. Your cousin’s doctor will be in the best position to discuss her prognosis and any necessary follow up care. You can read more about prognosis at www.cancer.gov/about-cancer/diagnosis-staging/prognosis#cure-remission-difference. Take care.

[@krishnakiranmishra9896]

@@NCIgov Thank you so much sir 🙏🏻Sir is there any life risk for her?? She is only 18 sir

[@allahisknowing]

i'm also patient of grade 2 glioma but I'm under treatment plz guide me sir

[@NCIgov]

We are sorry to learn of your diagnosis. You can read more about the treatments for different types of brain tumors here: www.cancer.gov/types/brain/patient/adult-brain-treatment-pdq. We also invite you to contact the National Cancer Institute’s Cancer Information Service at www.cancer.gov/contact to speak with a Cancer Information Specialist about your specific situation. Take care.

[@ajitkadam3941]

Sir diffusse astrosytma but grade 3

[@NCIgov]

Hi again Ajit, Grade III astrocystoma, also called anaplastic astrocytoma, is more aggressive and has a lower cure rate with standard local treatment. However, the prognosis (likely outcome of the disease) still depends on many individual factors. The patient’s doctor is in the best position to answer this question. To review standard treatment options for anaplastic astrocytoma in an adult, please see www.cancer.gov/types/brain/patient/adult-brain-treatment-pdq#_251_toc. We wish you the best.

[@richardblacker7526]

You’ve got a good woman sticking by you my woman kicked me to the curve the second the doctors said I had brain cancer

[@abhinavdeepsinha3036]

Very sorry to hear that

[@ajitkadam3941]

Diffusse astrosytma what is servival sir

[@NCIgov]

Hi Ajit, A diffuse astrocytoma grows slowly, but often spreads into nearby tissues. It is also called a low-grade diffuse astrocytoma, or grade II. The prognosis (likely outcome of the disease) depends on many factors. These factors include the age of the patient, if genetic alterations are present, the tumor size and ability to fully remove the tumor with surgery. If you are interested in learning more about brain tumors, we encourage you to explore our Brain Tumors Home Page at www.cancer.gov/types/brain. Take care.