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Anyone have Prophylactic Cranial Irradiation (PCI) for SCLC NETs?

Posted by mbkcanada @mbkcanada, Apr 1 12:09pm

I have cancer f unknown primary. Tumour in neck lymph node with histology type Neuroendocrine with suspected primary SCLC based on pathology of neck tumour.
Had radiation on neck along with neck dissection, plus chemotherapy (cisplatin & etoposide).
Medical oncologist suggests PCI for prevention of brain Mets as a recommendation for limited (suspected) small cell lung cancer.
Radiation oncologist suggests 3 month brain mri scans in lieu of pci / whole brain radiation.
Anyone have this treatment of pci? Hard to sign up for it when it's still unknown primary but suspected sclc

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Colleen Young, Connect Director | @colleenyoung | Apr 9 5:08pm

@mbkcanada, I believe that @tymish17 @tvichkon and @vlpr have mentioned prophylactic brain radiation or prophylactic cranial irradiation (PCI).

I can imagine whether to have prophylactic brain radiation or not is a hard decision to make. Small cell lung cancer (SCLC) has a high risk for brain metastases, but what if you don't have metastasis? Age and other health factors also go into the decision making.

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1 reply
vlpr | @vlpr | Apr 10 9:35am
In reply to @colleenyoung "@mbkcanada, I believe that @tymish17 @tvichkon and @vlpr have mentioned prophylactic brain radiation or prophylactic cranial..." + (show)
@colleenyoung

@mbkcanada, I believe that @tymish17 @tvichkon and @vlpr have mentioned prophylactic brain radiation or prophylactic cranial irradiation (PCI).

I can imagine whether to have prophylactic brain radiation or not is a hard decision to make. Small cell lung cancer (SCLC) has a high risk for brain metastases, but what if you don't have metastasis? Age and other health factors also go into the decision making.

Jump to this post

It is a huge decision. I decided in 2022 when I was diagnosed not to have whole brain radiation. It has been a good decision. I did have brain metastases in the fall of 2023. Because I do brain MRI's every 3 months, it was caught early. I had gamma knife procedure (called surgery, but is really a very targeted type of radiation), and the spot was eradicated. I was able to go to lunch with friends right after the procedure. I've had no problems since. I'm going to continue to do what I call 'whack a mole' type treatments until it is obvious that there is no other choice. I know others that have had wbr and it definitely affects their cognitive abilities - more brain fog. My husband and I decided that I want to be me for as long as I can. Good luck with your decision. (btw: I am in a group with other SCLC patients who have shared about their experiences with wbr). Talk to your doctor, but the decision once you have the doctor's input is up to you.

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1 reply
mbkcanada | @mbkcanada | Apr 15 12:57pm
In reply to @vlpr "It is a huge decision. I decided in 2022 when I was diagnosed not to have..." + (show)
@vlpr

It is a huge decision. I decided in 2022 when I was diagnosed not to have whole brain radiation. It has been a good decision. I did have brain metastases in the fall of 2023. Because I do brain MRI's every 3 months, it was caught early. I had gamma knife procedure (called surgery, but is really a very targeted type of radiation), and the spot was eradicated. I was able to go to lunch with friends right after the procedure. I've had no problems since. I'm going to continue to do what I call 'whack a mole' type treatments until it is obvious that there is no other choice. I know others that have had wbr and it definitely affects their cognitive abilities - more brain fog. My husband and I decided that I want to be me for as long as I can. Good luck with your decision. (btw: I am in a group with other SCLC patients who have shared about their experiences with wbr). Talk to your doctor, but the decision once you have the doctor's input is up to you.

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Thank you @vlpr for your comment. It is so helpful reading this. I don't know anyone with sclc, and also the fact that it's suspected sclc, it such a head game for me.
Do you have any other frequent scans besides the 3 month brain mri? How often do you get a CT or PET scan?

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