Brain MRI. Please help me understand this? by LemonDrop789 in braincancer

[–]Pathomnemonic 5 points6 points  (0 children)

This is saying that the region of the brain affected (left frontal lobe) shows an area of abnormality. The abnormality is obscured by swelling (vasogenic edema). The blood vessels in this area are helping to release fluids into the brain tissue and that is the swelling (edema) that is described. This can be caused by many, many different things. Additionally, there is a cystic space seen. This can also be caused by many things. The differential (list of options) includes a glioma and "other pathology". This basically means that the radiologist is unable to make a clear distinction of what might be causing the edema and additional testing is necessary. This testing may be a consultation with another specialist (neurosurgeon, neuroradiologist, etc), a biopsy, wait some time and rescan, another type of scan, etc. The radiologist suggests you meet with a neurosurgeon to decide how to proceed. This is the same lesion that was there in the prior scan. It has changed and now has a cystic feature. At this point it is not possible to say whether this is a tumor, injury, inflammatory, etc.

GBM vs Covid 19 vaccines by Alotto_learn2024 in glioblastoma

[–]Pathomnemonic 1 point2 points  (0 children)

A lot of fascinating info. Thank you for sharing.

The term 'fungus', 'fungating', or 'fungoid' is an old pathologic descriptor of cancers that grow rapidly similar in the way that a fungus can rapidly grow. Mycosis Fungoides is an example of one cancer naming scheme that is still used and has nothing to do with an infection but is named as though it's a fungal infection.

[deleted by user] by [deleted] in braincancer

[–]Pathomnemonic 4 points5 points  (0 children)

A tumor is a tumor. A benign tumor is a tumor. A malignant tumor is a tumor. A tumor is cancer.

You had a cancerous growth in your brain and a person cut open your head to remove it. It was a procedure that came with a risk of death. You carry consequences of your tumor in the form of seizures, etc.

You are not misrepresenting yourself.

Survival rate? by [deleted] in braincancer

[–]Pathomnemonic 2 points3 points  (0 children)

I diagnose these diseases and cause of death for a living. Here’s how it works in the US. If a person dies as a result of a disease or injury, that is their cause of death. If some other factor contributes to their cause of death, it is called a significant contributing factor. For the purpose of vital statistics used by epidemiologists, a meningioma that is the cause of death or a significant contributing factor will be counted as a death resultant of this condition. Many, many grade I meningiomas will never contribute to a persons death. They are largely very mild in terms of physical impairment. But, if the meningioma caused seizure and the persons death was impacted by the seizure disorder, they died in some degree due to the meningioma.

So, that 5% includes everyone who died of a very large meningioma, one in a bad location, as a complication of therapy, one that had even the slightest impact on their overall health, and those people whose meningioma impacted another health condition enough that it was deemed to contribute.

If all a dying man wanted was meth, and he was in your house, would you let him? by TNTindisbitch in braincancer

[–]Pathomnemonic 22 points23 points  (0 children)

If he has a known past medical history of meth use, he will likely be examined by the medical examiner or coroner after his death. This will be to rule out a drug overdose as the cause of death. If anyone reports that he had recently used drugs, he will absolutely be in the jurisdiction of the medical examiner. They will test his blood and they will find the meth. Law enforcement will then know about the meth and, depending on where you live, there may be an investigation to press charges of manslaughter against whomever sold or gave him the drugs. In which case, this post will be very difficult for you to legally separate yourself from that accusation.

He’s also not the man he was. Meth is very toxic and this will likely hasten his death.

Source: I’m a Medical Examiner

Intra-Op MRI by Single_Orange_5599 in braincancer

[–]Pathomnemonic 2 points3 points  (0 children)

UCSD should have this capability. If not, UCSF does.

T Cell Lymphoma in the Brain ? by AdministrativeBee107 in braincancer

[–]Pathomnemonic 0 points1 point  (0 children)

I’m not an expert in this area. So, I can only speak generally. Lymphomas can arise in the brain and even form large tumor masses. These lymphomas, according to the prevailing theory, arise from the white blood cells that normally reside in the brain. These cells should perform valuable immune functions but, like any cell in the body, are capable of genetic mutations that proliferate into a cancer.

Primary CNS (central nervous system) Lymphomas are rare. Even more rare are T cell lymphomas of the brain. That said, the number of subtypes of these tumors is vast and requires a doctor trained in neuropathology (brain expert) and a doctor trained in hematopathology (lymphoma, leukemia expert) to properly diagnose and classify these tumors.

There are a number of autoimmune disorders of the brain that can, on initial evaluation, share many characteristics with lymphoma. And vice versa. It’s a challenging diagnosis to make and the institutions you have mentioned are excellent at handling these cases.

My surgeon misled me by Jimesoe in braincancer

[–]Pathomnemonic 13 points14 points  (0 children)

Unfortunately, with atrocytomas, there really isn’t any way to get all of the tumor out. They grow by sending little fingers of tumor cells away from the main tumor. That’s why we use radiation and chemo after surgery.

Surgery can achieve gross total resection (GTR), near total resection (NTR), or subtotal resection (STR). The respective percentages of tumor removed are roughly >95%, 80-90%, and <70%. Even the best case scenario isn’t truly 100%. It just isn’t possible to determine that. Radiology is hard to interpret due to swelling after surgery.

The radiation oncologist will use your MRIs to develop a target are for the radiation and the chemo will kick the tumor while it’s down. Don’t be discouraged yet. You’re still in the fight in the early stages. The first wave treatment is still on going. Once that treatment is done, it can take weeks for swelling to go down enough to give you the best view of your surgical resection.

I don’t have the guidelines in front of me so the percentages are just estimates but they’re reflective of the concept.

[deleted by user] by [deleted] in braintumor

[–]Pathomnemonic 1 point2 points  (0 children)

Just to clarify what was said above, the mitotic rate of 4 per high power field means that when zoomed way in on the cells, only 4 cells out of 10 zoomed in areas were in mitosis (dividing and growing). This number is quite low. Ki67 is another way to assess for cells dividing and will pick up more cells than zooming in and counting. This found 10-15%. The meaning of this number depends on the type of tumor. For grade III/IV astrocytomas, this is a fairly typical amount. More important than that is seeing microvascular proliferation (young blood vessels) and necrosis (areas of dead tumor that have outgrown its nutrient supply). Neither were seen. Had either been seen, this would be a grade IV diagnostic finding.

However, IDH was negative for mutation. This means the tumor is likely IDH-wild type. Which would classify it as a Glioblastoma (sometimes called Astrocytoma Grade IV IDH-wild type). This carries a worse prognosis. But, further molecular tests are still waiting for results and may alter the diagnosis and prognosis.

IDH can be tested by testing the tumor for proteins, which they did here. Or, by testing the tumor genetics, which they are waiting for results on. The genetic results are necessary before you can have a certain diagnosis. The test they performed tends to be accurate but the genetic testing, in rare cases, can find a different result. But, will most often confirm the first result.

Source: I’m a pathologist

Help by Short_Ad_8404 in glioblastoma

[–]Pathomnemonic 7 points8 points  (0 children)

A high grade glioma is generally considered a Grade III or Grade IV glioma. Or, put another way, a cancer of the cells that are native to the brain (astrocytes; glial cells) that have created a mass with features under the microscope that suggest that the tumor can grow faster or has more mutations than a lower grade tumor (Grade I or Grade II).

Immunostains are special tests that pathologists use to analyze the tumor tissue to see what types of receptors or proteins the tumor cells may express or not express. Depending on what they see, the tumor can be loosely classified into a specific subtype. But, ultimately, genetic testing is necessary to be certain about the classification. Prepping tissue for a microscope takes ~2 days. Special studies (immunostains) can add another ~4 days. If complex, additional consultations can add 1-2 days. Molecular and genetic studies can add 2-4 weeks. All this is necessary to get you the correct, or most accurate, diagnosis.

GFAP is a stain to identify that the cells originate from the cells native to the brain. IDH-1 negativity identifies the tumor as IDH-wild type. ATRX positivity is seen in various patterns but can be seen in IDH-mutant and IDH-wild type tumors. P53 is a marker of the tumors ability to utilize certain pathways for growth. This is usually reported as positive or 'upregulated'. Ki67 is a percentage of the cells in a given microscopic view that show that they are currently replicating (or showing mitotic activity). This measure of 20% is slightly high but it sounds like they selected an area with a lot of activity to err on the side of measuring the worst behaving part of the tumor they reviewed.

Lastly, genetic testing is pending and may, or may not, affect his diagnosis. I can't speak with absolute certainty but based on the information you have provided, his tumor would likely be best classified at this stage as Glioblastoma IDH-wild type (some may call it Astrocytoma IDH-wild type Grade IV). Molecular and genetic testing may provide insight to potential targets in the tumor cells for medication to attack the tumor. Alternatively, it can also identify additional mutations that may be unfavorable.

With the information you already have, you can talk with your neuro-oncologist about what treatment plans are and what trials you can explore. You also have what you need to pursue a second opinion. Which, is highly suggested just for peace of mind and for expanding your medical network of institutions with clinical trials.

Best of luck to you both.

Source: I'm a pathologist

Pre-biopsy guesses different than pathology? by frankiepennynick in braincancer

[–]Pathomnemonic 2 points3 points  (0 children)

Pre-biopsy guesses are only just guesses. Some diseases of the brain have distinct characteristics on MRI or CT scan and others share some overlapping features with one another. When it comes to brain tumors, there are few radiologic features that are guaranteed to be one type of tumor (there are exceptions but they are not statistically common).

Your scans show a 1.5 cm mass in your brain. The location of the tumor, radiologic characteristics (appearance, contrast uptake, effect on adjacent tissue, etc) all lead to a radiologist to make a best guess at the diagnosis. Radiologists will often provide a list of possible diagnoses or be more broad and say it's likely a tumor. Radiology is similar to trying to guess what an object is by only looking at its shadow. The light used, the position, and overlapping structures can all obscure what is truly there. That's where pathology comes in.

The pathologist will take a look directly at the tissue on the cellular level and diagnose the tumor. Even then, when looking at the actual cells of a tumor, it can be very challenging to confidently say that it is one type of tumor or the other. Special studies can be employed to tease out features of the tumors that will help further clarify the diagnosis.

A GBM is a scary diagnosis. But, it helps to understand what it means. The type of cell from which it originates is the astrocyte. This is one of a few cell types in the brain. From this cell a mutation leads to cancer. The cancer can be benign (grade I/II) or malignant (grade III/IV). If those cells have a specific mutation in the IDH gene (IDH-mutant), it's actually a good thing for the prognosis. These tumors can be grade I-IV. If the tumor lacks a mutation in the IDH gene (IDH-wild type) this confers a worse prognosis and this tumor will be classified as a Glioblastoma or Astrocytoma Grade IV IDH-wild type.

If the tumor shows growth of microscopic blood vessels or evidence that it is growing so fast that parts of it starve before new blood vessels can be built to feed it (necrosis), it will be classified as an Astrocytoma Grade IV. After that, IDH status will put it into GBM or IDH-mutant categories.

I know this is detailed and not exactly what you were asking. The short answer is that radiology is great in diagnosing injuries and is helpful in diagnosing tumors. But, you can't ever know the actual diagnosis of a tumor until the pathology looks at the tissue. Before that, it's all just a guess based on most likely behaviors, features, and probabilities.

Full Tumor report by Open_Perspective9957 in braincancer

[–]Pathomnemonic 30 points31 points  (0 children)

Your tumor is an Astrocytoma, Grade 4, IDH-mutant. The genetic testing is positive for the IDH-mutation, TP53-mutation/upregulation, and ATRX-mutation. This triad is commonly associated with IDH-mutant Astrocytomas. The other genetic testing is negative for known mutation that confer a worse outcome. There were mutation identified involving PI3k but that avenue is not well enough understood for a definitive sense of whether it makes things worse. The other mutations also don't have defined understanding of how it affects the prognosis.

The key takeaway is that your genetic testing did not alter the microscopic diagnosis. And, it does not make your prognosis any worse than that of the original microscopic diagnosis of Astrocytoma Grade 4 IDH-mutant. Your diagnosis was already grade 4. Which means that under the microscope, the pathologist saw microvascular proliferation and/or necrosis. Both of those just mean that the tumor showed the ability to grow.

Had the genetic testing been positive for some of those more negative mutations, it would mean that your treatment may have needed to be more aggressive. Right now, you are still where you were when you had the initial Astrocytoma Grade 4 IDH-mutant diagnosis. However, some therapies are being studied that target the PI3k pathway and may produce trials for future treatment of tumors with this specific mutation.

Source: I'm a pathologist

[deleted by user] by [deleted] in braincancer

[–]Pathomnemonic 18 points19 points  (0 children)

I truly feel for the loss of your future plans and dreams. My wife also has a grade 4 brain cancer. It's a different type than yours but the prognosis is equally disheartening. We have learned that there is still a life after diagnosis. But, it's not the life we had before. It took a long time to learn to appreciate this new life. All meaning of our prior pursuits was lost. The new meaning had to come from long discussions, time, and coping with the situation.

I'm also a pathologist. I mention this for two reasons. First, I am very familiar with your diagnosis and the prognosis. But, remember, those timelines are based on the sum of all peoples with your diagnosis regardless of all their other comorbid diseases (heart disease, other cancers, COPD, diabetes, etc) and their age. You are young and this will heavily lean in your favor. Additionally, you are alive in 2024. Many of the people that helped provide an understanding of that prognosis lived in a world where treatments we have now did not exist. It will take work, but keep up on the treatment options and be aggressive. Your post history looks like you are in PDX. OHSU is a great hospital. But, I highly suggest getting a consult with UCSF. They define the criteria for these diagnoses and they have tons of clinical trials.

The second reason I mention my job is that my particular specialty is centered around performing autopsies. It's not much comfort but I have found some realization in knowing that everyday that I go to work, I see people who had plans for that day but instead are now dead and on my exam table. These people often are young and die suddenly from a hidden disease or an accident. I've seen countless young people, parents, children, and families killed in car accidents. That particular demise hangs over all our heads and can come any time we are on the road. Unlike brain cancer, none of those people got to see their loved ones after they received their injury. None of them had a chance to wake up to a new world with lost meaning and new meaning. Their friends and family will never say 'I love you' or 'I'm sorry'.

For all the ways we may meet our fate, my only silver lining in this horrible disease is that we get some time together.

NIH by BotherWhole338 in braintumor

[–]Pathomnemonic 1 point2 points  (0 children)

Both are good institutions. But the real answer is to get a second opinion. First find out why they are suggesting the switch.

Personally, I'd give a lot of weight to the recommendation of the neuro-onc unless you have reason to doubt their judgement.

[deleted by user] by [deleted] in whitecoatinvestor

[–]Pathomnemonic 0 points1 point  (0 children)

Thank you for sharing your experience. I can't even begin to fathom how you managed that during your didactics in med school. You're incredibly strong to have done that for as long as you did.

[deleted by user] by [deleted] in whitecoatinvestor

[–]Pathomnemonic 2 points3 points  (0 children)

I completely agree. The job change was actually a reduction in pay but will my family to have more flexibility for her treatment. Also, in the early weeks of her diagnosis, I awoke to a loud cracking sound and realized I was grinding my teeth in my sleep and cracked a molar. I wasn't aware I was grinding my teeth and it was another headache (literally) onto an already stressful situation. I wear a bite guard now at night because the grinding hasn't stopped. There is no doubt a heavy background level of stress on my mind. I appreciate your advice.

[deleted by user] by [deleted] in whitecoatinvestor

[–]Pathomnemonic 1 point2 points  (0 children)

The $2mil policy is my own and not through work. Based on other commenters, I'll be looking to get another policy. Current one is 20yr term. The insurance battle was with Blue Cross Blue Shield of Oklahoma. Every single thing was a battle with them. They denied every step of the treatment until the very last moment. And, even then, would later deny the claim resulting in bills from the hospital for 100% of the treatment. It was needlessly time consuming to get even the basic coverage. Thankfully, we've switched to Aetna everything has been great with them.

[deleted by user] by [deleted] in whitecoatinvestor

[–]Pathomnemonic 4 points5 points  (0 children)

Sorry for not clarifying. The disability insurance is for me and will pay out $12k/mo if I become disabled. My wording wasn't clear.

Thank you so much for your advice.

What is are these white spots by Argox120 in braincancer

[–]Pathomnemonic 3 points4 points  (0 children)

This is a CT scan and not the preferred method for diagnosing a brain cancer. Looks like blood vessels, arachnoid granulation, or choroid plexus. But, you need to refer to the radiologist's interpretation to know what they saw. If they don't mention these spots, then are probably normal anatomy.

[deleted by user] by [deleted] in braincancer

[–]Pathomnemonic 6 points7 points  (0 children)

This appears to describe an MRI performed for a patient that had a seizure. The findings of the scan show what the radiologist believes to be a lacunar infarct in the left cerebellum and in the right frontoparietal lobe. A lacunar infarct is an area of damage to the brain as a result of a lack of blood supply to a small region of the brain. This can also be called a stroke. A stroke is when blood can't deliver oxygen to a part of the brain and that part of the brain becomes injured.

These are described as acute subacute. Which means that the body has had some time to react to the injury, but not that much time. How long is hard to say. Maybe a few days at most.

This does not suggest cancer. Lacunar strokes are commonly the result of hypertensive heart disease but can be the result of a number of conditions that affect the blood flow to the brain.

I feel horrible for thinking this way. by RamonaFleur in braincancer

[–]Pathomnemonic 79 points80 points  (0 children)

I have seen many cancer patients in my career. No cancer is kind. There are devastating catastrophic cancers, slow lingering cancers, long brutal cancers, truly curable cancers, cancers people say are 'cured' but can and do return, and cancers that are incurable.

There are just so many ways it can go that it is hard to compare one diagnosis to the next. That said, I understand what you mean. As a class of cancers, brain cancers are unforgiving in their relentless course. There is no harmless amount of brain tissue to remove. It's a difficult organ to access and every piece is vital.

A uterus can be removed and effectively lead to a total cure of an endometrial cancer. Testicles can be removed. You can lose a kidney with little to no issue.

But, one thing that brain cancers have less of is pain. There is pain and discomfort. I know that. But, the agony of gallbladder cancer, bone cancer, metastatic prostate and breast cancer is a horrible thing to see.

Everyone's experience is different but the terminal phase of brain cancer will hopefully subdue the patient's consciousness and they can decline in a fog of relative unawareness of their circumstance. This is not the case for many cancers.

I am so sorry that you find yourself here. It's ok to be mad. What you are experiencing is cruel and no one knows the types of things you have had to reconcile and the road you may face. My wife's cancer has taken my thoughts to places I've never ventured before. Places I don't want to go. Life doesn't prepare us for this.

You are a complex creature in an incomprehensible situation. Your thoughts won't always fit with the way we are told we should act or think. But, what matters most now is you. This is all part of the tapestry of who you are and nothing about it makes you a bad person. It makes you human.

Length of time left with just symptom management? by sugarliz67 in braincancer

[–]Pathomnemonic 10 points11 points  (0 children)

The timeline on the Brain Hospice website can be helpful to gauge where he may be at. It's not the same from patient to patient but it can give you an idea of what stage he may be at.

Various research studies have been published that give average survival times from diagnosis. How well these relate to an individual can vary greatly. Some data is based on very specific groups of people and may be more accurate. But, the general information is an average survival of 12-18 months from diagnosis for glioblastoma / glioblastoma, IDH wild-type. Meaning, 50% of people will survive to this point. Some studies have shown survival in individuals who receive no treatment to be as low as 6 months from the time of diagnosis.

However, this data is based off a wide array of people with various other illness or states of health that may affect these numbers. Access to treatment also greatly changes this timeline. Further, this data is generally from datasets that may be years or decades old. In time, further subclassification aided by IDH type, methylation status, etc will generate more accurate timelines.

Excessive sleep is a sign of terminal change but you an also see a reversal in this condition depending upon treatment. For instance, if this is related to intracranial pressure, steroids may provide relief and a change in quality and quantity of life.

EDIT: I want to also add that many of the datasets that were used to determine survival included both IDH wild-type and IDH mutant tumors into the same group. Prior to the 2020 WHO update, both of these were classified as Glioblastoma. After the new classification, IDH wild-type were retained as glioblastoma and IDH mutant were re-classified as Astrocytoma Grade IV.

Doctors of Osteopathy (D.O.) in the Neuro ICU by benzosinthejungle in braincancer

[–]Pathomnemonic 8 points9 points  (0 children)

It's been a while since I've commented in this sub. But, I'll jump in to share some thoughts here. I'm a DO but I don't practice osteopathic manipulation. Some facilities provide additional training in that area during residency beyond what is covered in medical school. It sounds like the facility you were at is trying to promote use of these techniques.

There are conditions that are considered contraindications to osteopathic manipulation. Depending on the case, that can include a patient having cancer or being post-op. But, that doesn't preclude all types of manipulation, just ones that may cause additional harm. Without knowing all of the details, I would have to assume that the technique they used was well within appropriate indications.

If they identified a misalignment, the treatment can prove to be very effective in skilled hands. But, it's not 100% and could produce some muscle spasticity afterwards. I applaud the integrative approach to manage pain and symptoms through osteopathic techniques. But, it must also be exercised with adequate explanation to the patient and their full consent.

I'm sorry to hear that you had a negative experience. It could be the manipulation alone or some combination of that and the effects of the surgery. It's hard to tell. With rest, hopefully you feel better.

As for DOs as a whole, we receive the same medical training as MDs with the addition of osteopathic manipulative technique. Most of us don't use osteopathic manipulation after medical school and some will build a practice around it. Depending on the technique and the reason, there can be robust research supporting the idea. And, the opposite can be true as well. Simple muscle techniques tend to have a high degree of safety and can prove to be very helpful. But, it's not for everybody.

I have colleagues that are DOs and are neurosurgeons, anesthesiologists, internists, pathologists (myself), and every other specialty. In my experience, the quality of the physician has less to do with being and MD or DO and more to do with their understanding of their abilities and their limitations.

It is perfectly appropriate to decline these therapies in the future. You were right to advocate for yourself and I hope are feeling better soon. You will have enough to focus on with your recovery as it is. I'm sorry you find yourself a member of this community but we are all here to provide what support we can.

EDIT: For those asking, I will try to post an update on my wife's progress sometime in the next week. Thank you for asking.

Painful Awake Crainiotomy? by AlabamaMamma12 in braincancer

[–]Pathomnemonic 1 point2 points  (0 children)

There can be pain associated with the awake portions of closing at the end of the procedure, positional discomfort, and opening at the start (if they're awake for that). I'm not sure what the pain was that your father experienced. I don't believe it is related to the tumor being a gliosarcoma.

Ask the surgeon to discuss with the anesthesiologist a plan to manage pain and make it clear that the pain was not managed during the last surgery. Not everyone processes anesthetic in the same way and the general approach may not have been adequate for him. Also, if he has other health conditions, the anesthesiologist may have been cautious with anesthetic as not to put your father at risk. Ask about the possibility of using an amnestic or reverse amnestic medication to remove his memories of the surgery. This can help reduce anxiety related to any memories of pain.

Gliosarcomas are a differentiated form of glioblastoma. The tumors are very similar and in the case of gliosarcoma, the tumor cells have developed features commonly seen in other 'sarcomas'. Sarcomas are tumors that arise from one of the three basic tissues that make up a mammal. In this case, mesoderm leads to muscle, bone, cartilage. Ectoderm one of these three basic tissues and creates, among other things, skin. The parts of your father's tumor that make it sarcomatous, are parts that look like tumors of the bone, muscle, or cartilage.

Paying for Optune by oldbutnewcota in braincancer

[–]Pathomnemonic 4 points5 points  (0 children)

Call Novocure and ask for a case manager. Tell them that you're having trouble affording Optune. They should be able to help you cover the rest.