Dad diagnosed with small cell Neuroendocrine Carcinoma

[bmcarter]

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!

[Tom Galli]

BMcarter,

I am a 13 year survivor of NSC Squamous cell lung cancer diagnosed IIIB. I didn't have a metastasis to the brain but know many who have had successful WBRT. I am an engineer and the consummate numbers guy. It is not possible for me to under anaylize anything. Quantative analysis with results statistically expressed are my alpha and omega. 

So I've spent countless hours trying to quantify treatment probability of success, and predict outcomes. I've failed miserably. There are simply too many variables to achieve a quanatitative understanding with high confidence.  

Your dad's risk is cognitive function perhaps already esatablished as a surgical consequence or if not established, maybe caused by WBRT. To be sure, it is an interesting problem full of complexity and uncertainty but it is the wrong problem to be focused on. If he forgoes WBRT, he turns loose rapidly growing SCLC on his brain. Quantitative prediction of function loss is irrelevant compared to unconstrained growth of SCLC.

WBRT is a well established procedure that often yields remarkable results. My opinion, deal with the cancer first and worry about cognitive function later. 

Stay the course.

Tom

[MaryTD777]

BMCarter I have to agree 111% with Tom. Without the radiation, there won't be much of anything to protect.

Good luck to dad and all who love him!!



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[bmcarter]

I can not express my appreciation for your response enough! My dad puts an exceptionally high value on his ability to continue to provide for my mom. Part of his fight comes from the hope that for the next short while, at least, he will be able to work from home or locally in Atlanta. I fear that as cognitive decline ensues....which may not be for some time yet...that his will to push through will diminish. My family and I do not believe that the WB treatments will be anywhere near as bad as he has made them out to be in his mind, but when the radiation oncologist told him that some of the effects may not develop for 6-9 months after radiation we took a few steps back. I will share both of your responses with him! Tom - I look forward to reading Scanziety and sharing it with my dad! Thanks again for your time and thoughts!! 

[Tom Galli]

Tell you dad if I can live, so can he.  I can also still do differential equations!

Stay the course.

Tom

 

[babesmom]

One day at a time

My husband had brain tumor surgery, targeted radiation, more cancer, WBRT, and now tumor is back but too small for surgery and again scheduled for more targeted radiation.

Just recently they found Primary is Lung, so that will be addressed after radiation.

Each person handles it differently

Right now he cannot walk, but Doctor said alot of issues you read about is blamed on WBRT

He also has deterioring spine issues, he has HP, he has alot of other illnesses

WBRT has made him a bit confused but not to the point of dementia issues, he still gets headaches, heard many dont,

He just had his at end of Sept/first of Oct and we went on a few trips until a seizure stopped us in our tracks

Seizure is probably from most recent tumor.

He actually did well with the WBRT procedure, alot depends on health and positive attitude and taking it one day at a time.

Thatis all anyone can do.

His diagnosis before finding lung cancer was Stage IV Metastic brain cancer with Unknown primary

I dont know if that changes the Stage of diagnosis as all this is new to us too.

[bmcarter]

Thanks so much for your response. Treatments start tomorrow and we have him feeling confident and ready to head in to radiation! Best of luck to your dad and all those that care for him. This is definitely a disease that takes over the whole family. My heart goes out to those who do not have family to support them through the insanity of making decision after decision that are matters of life and death.