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bmcarter

SCLC and Whole Brain Radiation

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I posted this in the meet-and-greet forum and I apologize for the redundancy, but I wanted to follow up with those more closely related to our situation...

 

First, let me say that I am beyond thankful and grateful for forums like this and people like you are willing to share your stories and provide feedback on your experiences! So, thank you for your openness.

My father quit a 30-year-smoking streak about a year ago. Beyond this tragic bad habit, he is an otherwise incredibly healthy 60-year-old who has never been admitted to a hospital or had a surgery.  In December and January, he began to experience some peripheral vision loss in his left eye and cognitive impairments that left him temporarily confused about where he was or what he was doing on multiple occasions. After a few scans, a major brain surgery, and a pathology report, we have come to learn that he has stage IV, small cell, metastatic, high grade Neuroendocrine Carcinoma. While clearly this is a lung cancer diagnosis, he had 0 symptoms that would be associated with detection of lung problems. He only had one very large tumor in the brain, which was mostly cystic, and they were able to remove about 98% of the tumor. There is also a large mass in his lung, with metastasis to some surrounding lymph nodes(LN). We have just finished the first round of appointments to set up treatment with the radiation oncologist, medical oncologist, neurosurgeon, and the various other players involved in his treatment and care. The entire medical team is at Emory in Atlanta and we feel very fortunate to have some of the best medical professionals in the country working on his case. He is set to go through 10 treatments of whole brain radiation starting next week (2/29), then following with 4-6 rounds of chemo to address the tumor in his lung and LN.

The question I would like to pose is this: What are your experiences with the side effects of whole brain radiation therapy (WBRT)?

My dad is a business analyst. He is very good at what he does and is highly respected by those in his field. He really enjoys working and it is a motivator for him to fight through this yucky diagnosis, but the cognitive deficits, like short term memory loss, that have been posed as potential side effects of the WBRT have him trying to push for SRS. He is super concerned with what life on the other side of WBRT looks like for him, which is totally understandable. My siblings and I (along with his doctors) feel like small cell cancer is too aggressive to mildly treat with SRS….but our dad is a ‘numbers’ guys and he is looking for quantitative data on the cognitive deficits experienced by those with a similar diagnosis who have had WBRT. We have done tons of research, but most studies are based on non-small cell and/or the combination of SRS and WBRT. In addition, his doctors have told him that it would be difficult to quantify his cognitive outcome as he is, on-average, younger and healthier than most who undergo this treatment for this diagnosis.  If anyone out there can speak to the effects they have experienced from this treatment or can provide any insight to their experience with any type of brain radiation, my family and I would be very grateful for your input!!! And if there is anything that you think we could provide to any of you with a similar situation please don’t hesitate to reach out!

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My husband had the ten doses of wbr.  Side effects of the treatments for him were mainly fatigue.   Some short term memory issues but have not been bad until our recurrence.   Everyone is different as some have difficult time with the treatment.   There are a couple of closed support communities for small cell on face book that are much more active than this board.   Just sent a request and they will add you.  I would suggest  joining there too.  Best of luck to your dad.  Remember it is a marathon not a sprint.  Love and prayers to you and yours 

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