Stage IV diagnosis. Unusual situation from the beginning.

My mom presented to the ER on January 17th of this year with right sided weakness and a bit of confusion. They did a head scan and saw what they thought was a brain bleed. Rushed her by ambulance from our small hospital to the larger one in St. Louis (about an hour away). They did a comparitave CT and decided it had not grown. Surgery not recommended, admitted for monitoring and further tests. They did an MRI with the following results:

"There is a left superior frontal gyrus focal hematoma present. This measures about 1.5 x 1.5 cm in size. This has an hematocrit within it. Within the hemorrhage there is a focus of enhancement centrally suggested on coronal images. There is also noted to be a focal area of enhancement within the left lentiform nucleus. This is T2 bright. There is no surrounding edema. There is an additional enhancing lesion noted measuring 8 mm in the left inferior frontal gyrus."

Neurosurgeon graced us with her presence for all of 3 minutes to inform us that they were all in places too risky to even biopsy and they're probably cancer so 'expect a swarm of oncologists' to look for the primary. The swarm didn't come. We knew Mercy was NOT the hospital for us and we got them to release her Jan. 19th.

Her primary care from when I was a child had advanced in his career to internal medicine at the best hospital in the state. Also about an hour away from us. We went to see him, and I'll cut down all the goose chases he had us go on. PET scan showed one lung lymph node lit up a little. Biopsy, negative. One small spot on 'terminal ileum' in bowels, likely will have colonoscopy and investigate that bugger later.

MRI on March 7th:

"There are multiple lesions within the brain. There is a 1.6 x 1.4 cm enhancing T2 hyperintense T1 isointense lesion in the left frontal lobe (series 20 image 18). 6 mm T1 hyperintense enhancing lesion in the posterior left putamen (series 4 and 20 image 17). 1.3 x 1.1 cm heterogeneously T1 hyperintense enhancing lesion in the left frontal lobe (series 4 and 20 image 8) in the pre- central gyrus. No additional lesions identified."

So there we see that the 8mm frontal has now gone to 1.6 x 1.4 cm. The initial one went from 1.5 x 1.5 to 1.3 x 1.1 (margin of error perhaps) and the one deep in the putamen has finally been defined and it's 6mm. 

I finally tell my mom I think we need to give up the chase and do the brain biopsy. She agrees, and we find a neurosurgeon. He requests a 3T MRI. 

MRI on April 13th:

"The 3 previously seen rim enhancing lesions in the left frontal lobe, parietal lobe, and putamen have increased in size. For reference, the largest lesion in the frontal lobe previously measured 1.6 cm and now measures 2.8 cm. In addition, a new small frontal enhancing lesion is identified"

So that one frontal lesion started at 8mm January 17th and was at 2.8 cm April 13th. 

The neurosurgeon said he thought it best to skip right over the biopsy and go straight to crani for debulking. He said if he could get it all safely that he would, but that going in the intents were to debulk and provide tissue for pathology.

Frontotemporal crani went better than I could have ever hoped. The first neurosurgeon said she couldn't even biopsy. He excised the whole damn thing. She was in and out of the hospital in 54 hours. 

But now we have that new little bugger that popped up right by it. Pathology was available on my app (I know, helicopter daughter) on the 22nd. The meat of it reads as follows:

"Hematoxylin and eosin stained sections of the left frontal brain tumor (specimens A and B) show multiple fragments of a neoplasm and lesser amounts of brain parenchyma, joined by a broad, non-infiltrative interface. Arranged in sheets and perivascular pseudopapillae (formed by perivascular sparing in areas of necrosis), the tumor cells have variable amounts of brown cytoplasmic pigment and predominantly epithelioid/rhabdoid morphology, with variable amounts of eosinophilic cytoplasm, one or two atypical oval/reniform nuclei, and prominent nucleoli. Rare cells appear spindled. Mitotic figures, often atypical, are common. Immunohistochemical stains (single antibody procedures, B1) show the tumor cells to be diffusely and strongly positive for S100, Melan-A and HMB45. Reactivity for mutant BRAF protein (p.V600E) is equivocal; tumor cells show a faint blush which may simply reflect high background staining. 'Molecular' testing may be required to provide a more definitive determination of BRAF mutation status, if clinically indicated. These histomorphological and immunohistochemical findings support the diagnosis: Metastatic melanoma."

IF CLINICALLY INDICATED? Yes. Clinically indicated. Very much so.

I called the neurosurgeon's nurse and told her that I wanted an order put in for genetic testing for the BRAF mutation. She seemed a bit confused but assured me she'd figure it out. 

I also called Siteman (cancer center located within the massive hospital complex, the best place around) and will be getting a return call Monday or Tuesday to set up an appointment with Dr. Kaufman, the melanoma specialist I picked (we have four of them somehow). 

I feel like I'm sitting at a chess board playing the most important game of my life.

Do we go for immunotherapy? Gamma knife? Both? I have a strong feeling that chemo and WBR are useless and probably dangerous considering her age and lack of tumor burden/disease presence systemically. 

Also, there is a neurosurgeon that is a colleague of the one who performed her crani that does LITT. Apparently that's not widely available, much like the stealth guided technology they were equipped with to assist with the crani. So I'm thinking that the LITT laser ablation may be an option.

Do we tinker with gamma knife, risk more bleeding, wait to see if they shrink disappear or recur… Do we go for immunotherapy and hope that there's a clinical trial that would accept her or hope that insurance would cover the 150 THOUSAND dollars that it costs? 

Or do we go straight for the LITT?

I know we'll get more answers when we get in with the melanoma specialist but I'm trying to keep us one step ahead of everything and from what I've read on this board the experiences and input of others can be absolutely invaluable. I'm not really asking any direct questions here, mostly posed some hypotheticals… But ANY and ALL input is not only welcome but incredibly appreciated. I know there are several people here who have survived quite well with brain mets and that gives me hope.

Sorry for the lengthy post, guess it's a lot to get out there all at once. I handle all of this for my mom to relieve the burden on her. She trusts me implicitly and has told me her limits. I'm doing my best. I hope it's enough. She's my best friend and I'm quite honestly terrified by the erratic behavior of this sudden whirlwind that's been thrust upon us. 

So, hello to everyone, and thank you for reading 🙂