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MyWifeSCLC

Prophylactic Cranial Radiation

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Would love to hear from members having experience with PCI. My interests are memory issues, how soon (days) after first-line treatment, how long (months) was the first-line treatment and whether brain metastasis was there or not.

My wife's oncologist has already indicated PCI will occur some time after her chemoradiation and after either 4 cycles or 6 cycles.

Steve

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Steve. As I indicated in my response to your other posts this topic was extensively discussed in the SCLC forum back around 2005. Numerous and informative long strings are worth you trying to find. At that time there were several medical doctors (and cancer patients) on the forum.

KatieB was there. She may be helpful finding some. I think it would be worth some of your time to try to find them. As far as I can tell nothing dramatic has changed with the practice since then...it was just new(er) at the time....though it has been a treatment option since the 70s.

I wish you the best of luck and I'm confident you and your wife will make an informed decision.

Peace

Tom

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Had a fairly frank discussion with my wife on prophylactic cranial irradiation (PCI). Additional memory loss scares her, as it does me. She has had memory issues well prior to chemo and radiation and were are just now thinking about getting her tested ... me too for that matter. I brought up hippocampus avoidance with PCI to her and explained what I had read in the literature. The hippocampus seems to be very sensitive to radiation and memory loss is very real with radiation. The risk of brain metastasis (BM) in the hippocampus seems low BUT is a risk. Reading about hippocampus avoidance with PCI (HA-PCI) is something I seriously think about for my wife. Unfortunately, my thoughts are predisposed to this because my mother is in a nursing home with dementia. I brought this up to my wife to make sure she understood where I was coming from. I suspect that she is trusting my judgement.

In passing, I brought up HA-PCI to my wife's radiation doc and didnt get a good feeling from her. It felt like the doc didnt really think about what I said. Soon we will be having a more serious conversation about HA-PCI with both her onc and radiologist. I'm already dreading this because of the radiologist initial reaction and some other reactions by her onc when, in passing, I asked about secondary treatments for SCLC. Perhaps I hit them up cold too early in her current treatment.

Does anyone know of someone or some organization that I can talk to about radiation to the brain and specifically about HA-PCI?

Steve

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Another member posted to me that she was set up to have hippocampus-avoidance PCI but decided against it because insurance wouldn't pay. She chose not to have standard PCI but monitor with regular brain MRIs. This happened last year so HA-PCI is being done outside clinical trials.

My gut feel is that peer to peer reviews between patient radiologist and insurance company will fail unless there is a diagnoses of dementia already. Even then it may fail since MRI monitoring is common.

My hope is to find a radiologist that is an advocate for HA-PCI. Perhaps more and more peer to peer reviews will push insurance companies into paying for it. May not help my wife but perhaps others in the future.

Steve

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Found an advocate for HA-PCI at Vanderbilt-Ingram Cancer Center in Nashville, TN. They just recently abandoned a trial for lack of participation. He or another radiologist would most likely do the treatment but warned that it would be highly unlikely that insurance would pay for it. He didnt know the cost but guesstimates it would be tens of thousands of dollars. I asked if it might be $100,000 and he said probably not that much but maybe $50 to $75,000. That's a crap load of money!

Does anyone know the full cost of standard PCI?

He went on to say that insurance was key to patient decision to forego HA-PCI and patients are opting for monitoring with MRI vs standard PCI. Folks are scared of memory issues.  Sounds like PCI is falling by the wayside even though it is considered standard treatment for LS-SCLC. I asked what his thoughts were for patients with a few brain mets (BM); he was still in favor of HA-PCI vs "zapping" them with SRT. However, folks are opting for SRT. His reasoning for HA-PCI with a few BM was that experience indicated once BM occurred, it was highly likely that it would return. PCI would prolong the time frame for return of BM.

This was the type of conversation that I expected from my wife's radiologist and did not get. I thanked him for talking to me very frankly and said I would be in touch one way or another. He gave his 2 cents worth without getting paid ... that's saying something!

Steve

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