Terminal Brain Cancer When You're Down and Out
September 23, 2016 10:28 PM Subscribe
My roommate's partner, who is a close friend of mine, has stage III terminal brain cancer. He has been symptom free for almost a year but he has recently been showing signs of the cancer advancing, including seizures. He is terrified of dealing with the system of getting treatment, and has been turned down for disability even though he is unable to work because of the cancer. How can we help?
He is in his mid 20s, and was diagnosed with inoperable brain cancer two years ago. After they removed as much of the tumor as they could, he married a family friend to get on their insurance policy. He has been out of work since then, and is relying on that insurance for treatment as symptoms arise. He and his "spouse" are not close, but they have in the past maintained the relationship for the sake of his having the insurance. However, he had a seizure last night (along with other signs that indicate that the tumor is growing again), and this morning while looking into treatment options, my roommate and I discovered his insurance is no longer active. He does not like the oncologist at our local hospital, who has been dismissive and unhelpful in the past. We are in the process of contacting the spouse, but he needs treatment ASAP. He is, understandably, resistant to getting a full work-up to verify that the cancer is in fact spreading.
He was told that he has only a few years left to live, and we want to make these remaining years as comfortable as we can. He has been (incredibly) turned down for disability payments, even though his condition has left him unable to work. What are the best processes for getting immediate treatment other than going to our local ER, and what resources are there in Oakland, CA or the Bay Area in general that could help us help him to get the disability payments he needs to live on, and the medication he requires? He needs anti-seizure medication as a priority, an MRI or CAT scan to determine how much more the cancer has spread, and an oncologist to see him through his remaining time.
It pains me even to type this, but he has expressed to me that he is not willing to undergo any further radiation or chemotherapy -- he just wants to treat the symptoms and allow the disease to take its course.
Any helpful advice, resources, referrals to support groups etc. are much appreciated. As I'm sure you all understand, we are all in a state of shock and grief.
Thank you.
He is in his mid 20s, and was diagnosed with inoperable brain cancer two years ago. After they removed as much of the tumor as they could, he married a family friend to get on their insurance policy. He has been out of work since then, and is relying on that insurance for treatment as symptoms arise. He and his "spouse" are not close, but they have in the past maintained the relationship for the sake of his having the insurance. However, he had a seizure last night (along with other signs that indicate that the tumor is growing again), and this morning while looking into treatment options, my roommate and I discovered his insurance is no longer active. He does not like the oncologist at our local hospital, who has been dismissive and unhelpful in the past. We are in the process of contacting the spouse, but he needs treatment ASAP. He is, understandably, resistant to getting a full work-up to verify that the cancer is in fact spreading.
He was told that he has only a few years left to live, and we want to make these remaining years as comfortable as we can. He has been (incredibly) turned down for disability payments, even though his condition has left him unable to work. What are the best processes for getting immediate treatment other than going to our local ER, and what resources are there in Oakland, CA or the Bay Area in general that could help us help him to get the disability payments he needs to live on, and the medication he requires? He needs anti-seizure medication as a priority, an MRI or CAT scan to determine how much more the cancer has spread, and an oncologist to see him through his remaining time.
It pains me even to type this, but he has expressed to me that he is not willing to undergo any further radiation or chemotherapy -- he just wants to treat the symptoms and allow the disease to take its course.
Any helpful advice, resources, referrals to support groups etc. are much appreciated. As I'm sure you all understand, we are all in a state of shock and grief.
Thank you.
if s/he has tried to yank the insurance with no warning, my sympathies are not high.)
From the information given, it's possible the spouse lost their own insurance (left a job, etc). No need to jump to the assumption of malice.
posted by the agents of KAOS at 1:01 AM on September 24, 2016
From the information given, it's possible the spouse lost their own insurance (left a job, etc). No need to jump to the assumption of malice.
posted by the agents of KAOS at 1:01 AM on September 24, 2016
If you are in Oakland, you need to go to Highland ASAP. They have eligibility specialists who can get your friend enrolled into Medi-Cal, as well as social workers who can plug him into disability, etc. If your friend is having seizures and knows he has brain cancer, it is okay to use the ER. (There may be a long wait, as Highland is a trauma center). The least busy time tends to be very early or late morning (avoid rush hour, as traffic accidents are often taken there). Another option would be to set up a go fund me or similar website to try to get some money to help with basic necessities while waiting for disability, etc. An alternative would be to go to SF General, but if your friend is in Oakland, it is probably easier to start with Highland.
Please, DO NOT do as kmennie suggested above and take anti-epileptics that are not prescribed for the patient. They are seriously heavy drugs and there is a reason that doctors who prescribe them go to school for many, many years and are intimately familiar with their mechanism of action, risk, benefits, side effects, and alternatives. Please, do not do that.
Also, a note on disability: when a close friend was diagnosed with ovarian cancer, her oncologist was able to fill out the appropriate paperwork to get her on disability. Once your friend is enrolled in care again, he should be able to get disability.
Sorry to hear about what you and your friend are going through.
posted by stillmoving at 2:29 AM on September 24, 2016 [12 favorites]
Please, DO NOT do as kmennie suggested above and take anti-epileptics that are not prescribed for the patient. They are seriously heavy drugs and there is a reason that doctors who prescribe them go to school for many, many years and are intimately familiar with their mechanism of action, risk, benefits, side effects, and alternatives. Please, do not do that.
Also, a note on disability: when a close friend was diagnosed with ovarian cancer, her oncologist was able to fill out the appropriate paperwork to get her on disability. Once your friend is enrolled in care again, he should be able to get disability.
Sorry to hear about what you and your friend are going through.
posted by stillmoving at 2:29 AM on September 24, 2016 [12 favorites]
> He has been (incredibly) turned down for disability payments, even though his condition has left him unable to work.
Assuming that you mean social security disability, most brain cancers would qualify for the compassionate allowances program, which allows qualified workers to be approved quickly for SSDI. It may be that he does not have enough quarters of work on his record to qualify for SSDI.
Another resource to contact is a local hospice provider.
posted by megatherium at 5:12 AM on September 24, 2016 [3 favorites]
Assuming that you mean social security disability, most brain cancers would qualify for the compassionate allowances program, which allows qualified workers to be approved quickly for SSDI. It may be that he does not have enough quarters of work on his record to qualify for SSDI.
Another resource to contact is a local hospice provider.
posted by megatherium at 5:12 AM on September 24, 2016 [3 favorites]
Best answer: I am a lawyer (not yours or his) and worked with people applying for Social Security Disability for the last seven years. He needs to get an attorney and appeal his denial immediately. He will also need to see a doctor to get evaluated for this - he likely got turned down because of a lack of medical evidence. Please feel free to memail me if you have questions.
posted by bile and syntax at 5:37 AM on September 24, 2016 [3 favorites]
posted by bile and syntax at 5:37 AM on September 24, 2016 [3 favorites]
If he has another seizure you should call 911 and have him taken in to the best hospital in Oakland, or drive him to UCSF. Try not to have a big discussion about it. He sounds very depressed and hopeless, and who wouldn't be.
He might be more receptive to getting care if thought he could get some.
I just went through a similar thing with someone who has great insurance but lives in rural CA with visiting oncologists. Her care turned into nightmare, she went into denial about her health and did not ask for the help she needed. She is terminal but now she is the final stages of dying much faster than if she had been followed better. Not Dr's fault either, they can only do what they can do on their two month rotation thru the area.
It's all very hard when it's your friend and are not on as a person his Dr's can talk to. After he gets in the ER have him put you down as someone they can talk to about his care. That will be a huge help for him and you. We ended up with 10 people on my friend list so we had plenty of covered if a caregiver fell to the wayside.
Take care. You are good friend.
posted by cairnoflore at 8:31 AM on September 24, 2016
He might be more receptive to getting care if thought he could get some.
I just went through a similar thing with someone who has great insurance but lives in rural CA with visiting oncologists. Her care turned into nightmare, she went into denial about her health and did not ask for the help she needed. She is terminal but now she is the final stages of dying much faster than if she had been followed better. Not Dr's fault either, they can only do what they can do on their two month rotation thru the area.
It's all very hard when it's your friend and are not on as a person his Dr's can talk to. After he gets in the ER have him put you down as someone they can talk to about his care. That will be a huge help for him and you. We ended up with 10 people on my friend list so we had plenty of covered if a caregiver fell to the wayside.
Take care. You are good friend.
posted by cairnoflore at 8:31 AM on September 24, 2016
1. SSI/SSDI: He should probably have gotten presumptive or expedited disability. He needs a legal advocate to help with this immediately. East Bay Community Law Center is probably your best bet - call first thing Monday. They can have him sign a release so they can investigate what already happened, and help to re-apply or appeal. This is urgent.
2. Go to Highland Hospital, not necessarily to the ER, but on the 6th floor of the K building (same building ER is in) you will find the Highland Health Advocates. They are volunteers, mostly pre-med/pre-social work students, who can assess the situation and refer you to other resources in the community. They are there Monday-Fri, open to anyone (you do not need to have a doctor at Highland) but Thursdays, East Bay Community Law Center is actually on site and can advise you right there. The Advocates can also get you signed up for MediCal and advise you on any other entitlements you may be due.
3. In terms of where to seek ongoing medical care, I'm not sure Highland is the best bet. Just getting into their oncology department can be a hassle. I don't have that much experience with UCSF but it's not a bad idea to try showing up in their ER and see what happens. I would prioritize doing this soon. It is OK to walk into an ER and say you have been having seizures and have brain cancer and no health care. That is a valid reason to use the ER.
4. If he is not seeking curative treatment, he should be clear and verbal about that with the providers, once he is assigned to an oncologist for ongoing care. Use the words Palliative Care (not curative, aimed at managing symptoms). Hospice may be an option but may not be yet - hospice care is initiated once the person is believed to have approx 6 months to live. It is very mature of this person to have thought about what kinds of treatments he does and doesn't want. Most people are afraid to even think about this stuff.
5. Does he have other family that can/should be involved? Parents? Siblings? This person is going to need a support plan. SO is your roommate. I agree with the Go Fund Me idea - our friend had one and it made it possible for her to support her dying friend. CaringBridge is also a good resource. My other friend with brain cancer uses this site to update her community and ask for help (like food deliveries, rides, etc)
posted by latkes at 8:59 AM on September 24, 2016 [7 favorites]
2. Go to Highland Hospital, not necessarily to the ER, but on the 6th floor of the K building (same building ER is in) you will find the Highland Health Advocates. They are volunteers, mostly pre-med/pre-social work students, who can assess the situation and refer you to other resources in the community. They are there Monday-Fri, open to anyone (you do not need to have a doctor at Highland) but Thursdays, East Bay Community Law Center is actually on site and can advise you right there. The Advocates can also get you signed up for MediCal and advise you on any other entitlements you may be due.
3. In terms of where to seek ongoing medical care, I'm not sure Highland is the best bet. Just getting into their oncology department can be a hassle. I don't have that much experience with UCSF but it's not a bad idea to try showing up in their ER and see what happens. I would prioritize doing this soon. It is OK to walk into an ER and say you have been having seizures and have brain cancer and no health care. That is a valid reason to use the ER.
4. If he is not seeking curative treatment, he should be clear and verbal about that with the providers, once he is assigned to an oncologist for ongoing care. Use the words Palliative Care (not curative, aimed at managing symptoms). Hospice may be an option but may not be yet - hospice care is initiated once the person is believed to have approx 6 months to live. It is very mature of this person to have thought about what kinds of treatments he does and doesn't want. Most people are afraid to even think about this stuff.
5. Does he have other family that can/should be involved? Parents? Siblings? This person is going to need a support plan. SO is your roommate. I agree with the Go Fund Me idea - our friend had one and it made it possible for her to support her dying friend. CaringBridge is also a good resource. My other friend with brain cancer uses this site to update her community and ask for help (like food deliveries, rides, etc)
posted by latkes at 8:59 AM on September 24, 2016 [7 favorites]
Cannot stress enough the importance of appealing the disability denial. He may not have enough work for SSDI but that's not relevant for SSI, and most brain cancers will fast-track you for approval. In California, being approved for SSI will also qualify him automatically for Medi-Cal.
posted by praemunire at 12:32 PM on September 24, 2016
posted by praemunire at 12:32 PM on September 24, 2016
Yes, you need to get him to UCSF. The ER there will be able to get a CT and probably an MRI. The social workers in the UCSF Neuro-Oncology dept are awesome and will totally sort out the disability issue. I don't know for sure if a stage III will get you into the fast track/compassionate exemption but stage IV definitely will - but it needs the right documentation.
My husband was a patient at UCSF (he had a stage IV glioblastoma) and it is the best neuro-oncology program in the Bay Area. A couple of times we had to resort to an ER visit to get an urgent scan done and thought sometimes they'll balk at doing the MRI from the ER immediately, it can be ordered.
My husband took Keppra for seizures but you'll really need the evaluation to know which med is the right one.
posted by otherwordlyglow at 4:31 PM on September 24, 2016 [1 favorite]
My husband was a patient at UCSF (he had a stage IV glioblastoma) and it is the best neuro-oncology program in the Bay Area. A couple of times we had to resort to an ER visit to get an urgent scan done and thought sometimes they'll balk at doing the MRI from the ER immediately, it can be ordered.
My husband took Keppra for seizures but you'll really need the evaluation to know which med is the right one.
posted by otherwordlyglow at 4:31 PM on September 24, 2016 [1 favorite]
Came back to add that Highland will refer you, if needed, to UCSF for treatment. I would start at Highland, though, as your friend is a resident (I assume) of Alameda County, and Medi-Cal is assigned per county. The Highland eligibility folks are really the right people to talk to. Feel free to MeMail me if you like. I had a similar experience with a friend in the same system.
posted by stillmoving at 4:36 PM on September 24, 2016
posted by stillmoving at 4:36 PM on September 24, 2016
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My limited understanding of disability payments in the US says: he needs an attorney. For that and many other reasons, my go-to ASAP would be a GoFundMe. Two friends of friends dealing with breast cancer in recent years managed to make some practical hassles much less burdensome with the $ received. Somebody trustworthy and well-known in his circles should run it, and they should make regular updates -- with one, I followed the story via my friend's updates on caringbridge.org; if your friend is willing to be public about what he is dealing with, it does not hurt crowdfunding efforts to offer updates. It also means you can post links every time somebody has updated the journal there, which will remind people of the GoFundMe -- people can 'yes, seen that, very sad, next post' with a GFM link in their feed they've already seen recently, but updates are a reasonable thing to keep flooding his friend networks with.
My first call would be to the American Cancer Society for advice and referrals. Organisations specific to his cancer such as the American Brain Tumor Association and Brain Tumor Foundation may also be useful.
Calling these places can be a bit of a mixed bag -- I had a very simple question one afternoon, viz: "my friend, unemployed, denied disability, and with no benefits is dealing with horrible dental problems caused by chemotherapy. What options are there for him?" One cancer charity had a special fund for problems like that -- great! -- and, oh, oops, they'd already given out all the money there was in the fund for the year. Expect a bit of frustration and a few bad referrals; be persistent. Aggressively work his social networks if he gives you permission to do so; sometimes the solutions are "his old friend Jack's good old friend is a dentist, heard the story, and will sort him out for free."
If the disinclination to go to the ER is because the unpleasant oncologist is at that hospital and a trip to that hospital would just mean seeing the unpleasant oncologist -- I'd start looking at other hospitals, distance be damned until he can get something more local to him in place. I live 45min outside of a city with a population of about a million, with (very very unpleasant if you are unwell) very busy ERs. The little rural hospitals where I am are not set up to treat serious disease, but they certainly can, for example, prescribe anti-seizure meds. With ERs with virtually no wait time. How far outside of Oakland does one have to drive to find a small-town hospital?
I would not lose hope on the 'spouse' -- presumably there has not been a divorce? Hopefully it might be an easily remedied paperwork error. The 'spouse' has a lot more to lose if caught up in accusations of marriage fraud; I imagine s/he would be interested in doing everything possible to restore the insurance, especially if gently reminded that he has nothing to lose but s/he might be on the hook for reimbursement if the marriage fraud came to light. (Sounds very callous towards somebody who once tried to do something nice, but, if s/he has tried to yank the insurance with no warning, my sympathies are not high.)
I am looking at this PDF with a list of antiepileptic drugs for brain tumor patients. There are a number that are prescribed for a variety of uses. Odds that you know somebody who knows somebody who takes one or more are excellent. If he is for-real having difficulty accessing a good physician, cannot afford a clinic, etc, I don't think there's anything amoral about his taking drugs that were not prescribed for him here. If there's more than one available I would call a pharmacist to double-check their compatibility.
Somebody will suggest marijuana if for no other reason than as a med to tide him over until he can get things prescribed. This might not be a terrible idea. If he does not enjoy smoking grass -- I don't -- Google 'cannacaps,' and make pills; the effects are rather different, and, I found, more useful, medicinally.
Finally -- shore up your own support networks; you will need support yourself, and it can't come from him or from people closer to him. Practice good self-care; remember that if you burn out, you can't help your friend; give yourself permission to take time off from the situation when you need to.
posted by kmennie at 12:25 AM on September 24, 2016 [7 favorites]