PCI

[JohnandMarian Pendleton]

Hi, Im new to the forum and wanted to speak with anyone who has had whole brain radiation.  My Chemo and Radiation is finished and my Dr recommends Prophylactic Cranial Irradiation.    Its a bit daunting.  Ive read the data, but can not find anyone who has experienced it. I'm hoping someone on this forum will be able to enlighten me. 

[Rower Michelle]

Hi John

One of the members in my support group had whole brain radiation six years ago (almost seven).  He regrets not having obtained a second opinion before doing so as there was a treatment option available that passed the blood brain barrier.  The radiation was indeed successful, he does have significant memory impairment.   
 

I’m not sure where you’re treated or what type of lung cancer you’ve been diagnosed with, however you’re correct in that it is a big decision.  I would also consider obtaining a second and third opinion too.  I see you’re in NY so you are within driving distance for some of the big guns in the City & even up to Boston.  You may also want to contact the Go2Foundation & Lungevity help line to obtain physician recommendations.  
 

Let us know how we can help.  
 

Michelle

[TJM]

I would never undergo that procedure. Why is he recommending?

[JohnandMarian Pendleton]

Michelle,

Thank you so much for your response. We did get a second opinion, which we considered.  My husband, John has small cell lung cancer and completed 4 rounds of Chemo and Radiation 2x a day for 3 weeks. He had no brain lesions when completed, and no advancement of his tumor.  We are elated! However  PCI is recommended by his radiologist.  He is going to Memorial Sloan Kettering for his treatments.  He is a veteran and the nodule was an incidental finding on a CT scan at the VA. The issue with the VA is they take so long to move and this is such an aggressive cancer we decided that MSK was the best option for him.  We went to MSK before there was a diagnosis. 

The oncologist at the VA contacted us while John was almost finished his treatments.  We met with him and instantly liked him.  His treatment would have been the same initially, but he is a strong believer in immunotherapy.  He wouldn't commit to the PCI one way or the other.  He felt that John should have been on immunotherapy from the get go. MSK said there is no evidence that immunotherapy would be effective at all.  I couldn't find anything to support this either.

We are torn and don't want to wait for the cancer to spread while we decide.  

Thank you again Michelle, have a nice weekend.

Marian and John

[TJM]

I strongly advise you get a second opinion.

Peace

Tom

[LexieCat]

I don't know much about either small cell or PCI, but I do know small cell is a VERY tough cancer to treat and MSK is one of the best cancer centers in the world. I'm sure the VA doc is terrific, but MSK is the way to go with something like small cell, I think. 

You might want to get another opinion from a similarly highly-rated cancer center in the NYC area--fortunately, there are several. 

Good luck--glad to hear he's been doing so well, so far!

[Tom Galli]

Welcome here.

Small cell is indeed difficult to treat. PCI is a recommended treatment because small cell typically mutates to the brain in the form of a multitude of very tiny tumors. This radiation catches them before they cause damage.

Immunotherapy is an emerging treatment option for SCLC. Here is information on both small cell and PCI. Note the reference to   Immunotherapy as a treatment method that is now FDA approved and is showing promise.

Stay the course.

Tom

[JohnandMarian Pendleton]

Good evening

Thank your  for your response.  We were aware of the recommendations, however with Johns age and comorbidities we declined PCI treatment. DR Shaverdian was absolutely fantastic, he was honest and understanding. He made us feel that we made the absolute right decision.   We are talking to an oncologist at the VA  regarding immunotherapy tomorrow.  Thanks again for the link and the encouragement.