Preventative Brain Radiation for small cell carcinoma

Jules68

Hello everyone. I’m new to this site and apologize if I’m posting on the wrong message board. Here’s why I chose this board. My mother is 65 and being treated for small cell bladder cancer which is really rare. I read where prophylactic brain radiation is mostly associated with small cell lung cancer – which I’m assuming is also rare. Anyway, she’s really hesitant to have the brain radiation because she’s afraid of the possibility of memory loss and she’s afraid “I won’t be me anymore”.

Has anyone had this done around age 65 – or known anyone who has – and did you (or they) have issues with memory loss or “not being themselves” afterward?

I really appreciate all your help! Thank you!

Jules

Jayhawk6

PCI ( Prophylactic Cranial Irradiation)
I was diagnosed with small cell lung cancer in January, 2010, at age 69. After massive (I thought!!) doses of chemo and chest radiation, I was advised to have PCI. I read everything I could find online (sometimes a good idea, sometimes not) about the subject, had lengthy conversations with the oncologist and radiologist and finally decided to go ahead despite my apprehensions. I'm very glad I made that decision, as I feel that the advantages far outweigh the few minimal side-effects I experienced. There was some initial difficulty with short-term memory (why did I come into this room?, what did I just read in the newspaper this morning, etc. for example, but then that was nothing new!!). I also had some difficulty at first with typing...had to concentrate hard on that task, but that problem soon improved. I have experienced some minimal problems with balance, but that could very well be due to age alone (and my general 'klutziness!) As for any 'personality' changes, my husband assures me that I'm just as bossy as ever!! I would suggest a conversation with your mother's doctors (if you haven't had that already) before making a decision. I hope this has helped and I wish your mother (and you) all the best.

Jules68

Jayhawk6 said:

PCI ( Prophylactic Cranial Irradiation)
I was diagnosed with small cell lung cancer in January, 2010, at age 69. After massive (I thought!!) doses of chemo and chest radiation, I was advised to have PCI. I read everything I could find online (sometimes a good idea, sometimes not) about the subject, had lengthy conversations with the oncologist and radiologist and finally decided to go ahead despite my apprehensions. I'm very glad I made that decision, as I feel that the advantages far outweigh the few minimal side-effects I experienced. There was some initial difficulty with short-term memory (why did I come into this room?, what did I just read in the newspaper this morning, etc. for example, but then that was nothing new!!). I also had some difficulty at first with typing...had to concentrate hard on that task, but that problem soon improved. I have experienced some minimal problems with balance, but that could very well be due to age alone (and my general 'klutziness!) As for any 'personality' changes, my husband assures me that I'm just as bossy as ever!! I would suggest a conversation with your mother's doctors (if you haven't had that already) before making a decision. I hope this has helped and I wish your mother (and you) all the best.

Thank you!!
Thank you for your help! I told my mother what you said and it truly truly helped! Once I read your reply to her, she relaxed and said she felt better about the idea. She's been fighting this decision since November when the doctor mentioned it. What you mentioned as side effects eased her mind greatly. And you're so right. Reading about this online is sometimes not a good idea. It ends up scaring people more than helping sometimes. Your answer is invaluable to us and I thank you again! I hope you continue doing well too!

P.S. My mom has one other question if you have time. How many PCI treatments did you have? Thank you again!

Jayhawk6

Jules68 said:

Thank you!!
Thank you for your help! I told my mother what you said and it truly truly helped! Once I read your reply to her, she relaxed and said she felt better about the idea. She's been fighting this decision since November when the doctor mentioned it. What you mentioned as side effects eased her mind greatly. And you're so right. Reading about this online is sometimes not a good idea. It ends up scaring people more than helping sometimes. Your answer is invaluable to us and I thank you again! I hope you continue doing well too!

P.S. My mom has one other question if you have time. How many PCI treatments did you have? Thank you again!

PCI
I'm so glad I could be of some help. In answer to your question, I had 12 consecutive (every day) radiation treatments...I don't recall the exact duration, but they didn't last more than 5-10 minutes. These treatments involve being custom-fitted for a "mask" placed over the face and fastened down for the duration of the treatment(to prevent any head movement.) It's possible to see and certainly breathe with it on, but I've heard of some patients who experience claustrophobia at this time. (Didn't bother me...I just imagined myself as an extra in "The Mark of Zorro"!)Those who do have problems are given mild tranquillizers, I understand. Again, I wish your mother all the best. These are not easy times for anyone involved in combating this dreadful disease.

Jules68

Jayhawk6 said:

PCI
I'm so glad I could be of some help. In answer to your question, I had 12 consecutive (every day) radiation treatments...I don't recall the exact duration, but they didn't last more than 5-10 minutes. These treatments involve being custom-fitted for a "mask" placed over the face and fastened down for the duration of the treatment(to prevent any head movement.) It's possible to see and certainly breathe with it on, but I've heard of some patients who experience claustrophobia at this time. (Didn't bother me...I just imagined myself as an extra in "The Mark of Zorro"!)Those who do have problems are given mild tranquillizers, I understand. Again, I wish your mother all the best. These are not easy times for anyone involved in combating this dreadful disease.

Thank you again so much!
You're right. This disease is awful and it's hard on Mom in so many ways - that's why I am so happy she has such a positive attitude despite the cancer diagnosis and the way it changed her whole life overnight.

I do love your sense of humor! You and my mom would get along so well! She's had a good sense of humor even through these past five and a half months. I really do think that a positive attitude and humor can help - at least it can't hurt, right? I told Mom what you said about the number of treatments and how long they lasted (5 to 10 minutes) and she seemed okay with it. She will have an issue with the mask and we'll ask the doctor about a mild tranquilizer. Thank you for sharing your experience and information with us. It won't come as such a surprise to her when we talk to him in detail now. Since she's nearly at the completion of her bladder radiation treatments, I figure he'll bring up the PCI again this week. Thank you so much for taking time to help us - we appreciate it a lot! I wish you all the best and pray you get all clear reports in the future!

medi_2

Jayhawk6 said:

PCI ( Prophylactic Cranial Irradiation)
I was diagnosed with small cell lung cancer in January, 2010, at age 69. After massive (I thought!!) doses of chemo and chest radiation, I was advised to have PCI. I read everything I could find online (sometimes a good idea, sometimes not) about the subject, had lengthy conversations with the oncologist and radiologist and finally decided to go ahead despite my apprehensions. I'm very glad I made that decision, as I feel that the advantages far outweigh the few minimal side-effects I experienced. There was some initial difficulty with short-term memory (why did I come into this room?, what did I just read in the newspaper this morning, etc. for example, but then that was nothing new!!). I also had some difficulty at first with typing...had to concentrate hard on that task, but that problem soon improved. I have experienced some minimal problems with balance, but that could very well be due to age alone (and my general 'klutziness!) As for any 'personality' changes, my husband assures me that I'm just as bossy as ever!! I would suggest a conversation with your mother's doctors (if you haven't had that already) before making a decision. I hope this has helped and I wish your mother (and you) all the best.

I had it three years ago and am happy to report that I am as crazy as ever
Just remember the older you get, the more you have to forget,,,
Cheers!
Medi
ps, check out my mask art on my page.