Social Security Questions and Answers
Comments
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Medi
Decisions usually come 30-60 days. Just hang in there.
I would wait for decision on starting to work. Why rock the boat when this close.
Let me know if denied.
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Steven: Thanks so much for the reply. Should be another 30 days to go if you are correct. I agree with you about not risking rocking the boat about the "work" at this point after sweating it out this long. Will pass the news on to my relative so she can prepare to wait a bit longer. Have our toes crossed that it will be approved but will let you know whatever happens. Thank your dear wife for loaning you to us for all the help!
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Hi Steven,
I disagree that because someone is ned, they wouldn't qualify. Eventhough I am Ned, I still have metastatic breast cancer that is considered terminal My dr made it clear, there is no cure. The cancer is not gone, it cannot just be seen in scans right now. I will be in treatment for the rest of my life.
Laurie -
Laurie, the criteria is that your disability prevents you from working, not just the diagnosis. If the side effects of your treatment disable you to the point that you can't work that is what you would have to demonstrate and document. However if achieving NED also means you are functioning well and capable of working then the decision could indeed go the other way. There are many Stage IV women who have continued to work despite their treatment. This disease is so random. So the diagnosis itself is not enough. As Steven also said earlier, some states are more likely to approve than others.
I should be careful, Steven might try to put me to work! -
Hi chickadee,
Steven said that there were two prongs 1) a medical condition. And 2) inability to work. And that if you were Ned that you no longer had that medical condition.
That is not true. I still have metastatic breast cancer and always will.
Laurie -
Well taken literally No Evidence of Disease does mean that. However at that point we don't stop treatment so again the important points would be how your continued treatment to keep that NED affects your ability to work. We all know NED is wonderful but not forever either. So if I was being challenged (NED doesn't want to dance with me) it would be about the SE's that are holding the little bastards at bay.
If like me your Doctor gives you a check off sheet for health issues, check 'em off everytime. Any that apply. That's part of your documentation. If you still have bone and muscle pain, problems with incontinence, shortness of breath, headaches, whatever get it on the record. -
I agree with Chickadee... I was able to get onto SSDI with at IIIA. Why? Because I was a graphic designer, and was no longer able to spend hours on the computer using my right hand due to lymphedema. The key word was "PAIN". It really comes down to convinicing your caseworker that you can not continue to work due to PAIN or MENTAL HEALTH issues.
As my caseworker said to me (I am paraphrasing) "There are so many people who come in here with a broken finger and want to get onto dissability. You are one of the people who really needs it."
Make it easy for yourself, you have earned the help, tell them that you are experiencing PAIN.
One love, Jackie
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Chickadee,
how can you say that being ned means technically, that I no longer have metastatic breast cancer. Am I cured? no, we all know that I am not cured. So the choice is to say I am either cured or I still have metastatic breast cancer.
God, I would love to be able to say that I am cured, but I am not, so that leaves only one alternative- I still have metastatic breast cancer. I know if I asked my onc what medical condition I have, he wouldn't hesitate, he would say, you have metastatic breast cancer.
I know I had to write about all my pain, se's etc on the application, and i did that, but it still bothers me that people who should know that ned does not = cure doesn't understand it.
Laurie
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I would like to say something about this "NED" issue. Years ago, I used to get so excited when my board friends posted they were "NED". I thought it meant they were cured. It wasn't until the damnable cancer returned to an NED poster that I learned the truth from another medical poster. He posted that all it takes is one cancer cell to multiply and bring it back so in his opinion no one is ever really cured once they are diagnosed with cancer. It is a fear we will have to live with for the rest of our lives no matter how much chemo, radiation, or Arimidex (in my case) we take. So I have never referred to myself as NED only a "survivor" trying to survive my life praying it will never return. I have a relation who is almost 90 years old and is still "surviving". I think of her when I get depressed and frightened of the "what ifs" in my case.
I think when it comes to SSDI, they would expect survivors to work as long as they were not in so much other pain that they couldn't. I think most survivors want to work and keep busy as long as they can. One would really have to be desperate or looney to want to go through the years of emotional torment it takes to be approved for SSDI. So to all the "survivors" who are still NED, may you always be NED but in no way do I think now it means we are "cured". The day when cancer is truly cured, we will never again have to use the term NED because the disease will no longer exist.
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Laurie, you are misinterpreting what I'm saying. I didn't use the word cure. I didn't say technically, I said literally. If one continues a treatment protocol that is harsh enough and that treatment renders them too disabled to work then they have a case to apply for or expect their benefits to continue. There are periodic reviews and we should all be prepared for that by ensuring our doctors get complete reports from us on our disabling conditions.
The diagnosis by itself does not qualify you for SSDI. The manner in which the effects of the disease prevent or are likely to prevent you from working 12 months or more is what must be documented and proven. -
Laurie
Please don't blend what or chick say about the SSA process with the medical process.
Of course the fact that one is NED from a medical point does not mean they are cured.
But from a SSA pov the test is not medical diagnoses, but diagnosis with symptoms that effect vocational ability.
Steven -
Just to add some positive mojo going in this thread, I was Re-Approved for my SSDI in October after 3.5 months waiting after my Termination Notice!!! Woohoo!!!! I signed all the paperwork within the prescribed time periods to keep getting paid since I wanted to keep my mortgage current. I agree that this process rattled me terribly and I don't wish this to happen to anyone!!! This waiting period was very stressful to my family, to say the least!!! I know we are not cured but "stable with treatment" at Stage 4 with NED status on our scans. I did do 1 additional step during this process and called and emailed my State Congressman and there was an inquiry made into my file by his office. I still don't know if this tipped the scales in my favor, but it didn't hurt either!!!
I do agree with Steven that the beaurocratic SSA Review process is only looking at our vocational abilities to return to work.
Not withstanding an employer who will rehire a worker who "may" be tired and cranky with pain and many appointments to leave work for and who needs to figure out how to make up lost time and keep her sanity during the whole time!!!
Make sure you speak up at all your md apps about all the physical and emotional side effects you are having so you have documented proof of your inability to work!!!
Best of Luck to everyone in this process!!! -
This discussion seems to be over a determination of NED or not. I have stage IV and have been told I will never be NED, though I may be stable for a long time. My scans will always show my bone mets, though there is no metabolic activity at this time.
Terri
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Ibc, I was told the same thing at MD Anderson. Always wondered how all these NED came about.
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Chickadee, I have all my scans done at MDA and they do specifically state "no evidence of metastatic disease" when appropriate. Never know how long that is going to last but ilike reading that on the scan reports. They do PET, CT, and ultrasound every 3 months and add MRI every 6 months or so. The oncologist also lists continuing chemotherapy and targeted therapy along with the side effects that I have.
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I think most of the women who are Ned don't have bone mets. I have heard that it is hard to get to Ned with bone mets because there will always be evidence of cancer in the bones. I only had 2 liver mets, so once they were gone after treatment, my scans showed no evidence of disease.
Laurie -
Right Laurie, I do not have any in my bones (yet) (... knock on wood!)
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To follow up on these last few posts and to clarify...I am speaking about a stage iv compassionate allowance and what might happen if/when SSA reviews a case. If the mets is NED does that mean you are NED overall, no.
What I have been trying to say is that if SSA grants your claim because you have BC that mets to _____ and at some point you are NED in the mets area that does not mean you are not disabled...you very well might be found disabled on other factors. But if a person is granted becasue they have a BC that has mets...no evidence of mets at some point may mean a persn might not meet the criteria of that particular part of the law. But there may exist a way to keep benefits under other portions of the SS Act.
Deak and Scut make good points....don't let your onc get lazy when you have a follow up...make sure they take good notes on side effects and complaints. Having those detailed notes can make the difference if needed. Example...SSA sends your dr. A form to describe your present condition..dr. Describes things he remembers you complain about but he did not document in notes. They may not give that opinion the weight it deserves because it is not supported by notes.
Steven -
Hi Steven,
I guess i don't agree with the last thing you posted. My understanding is, as Chickadee has said many times, that having mets is not enough to get approved. It will get you an expedited decision, but you still need to prove that your condition will prevent you from working.
So my postion is that whether you are ned or not really doesn't matter. A person who has metastatic breast cancer and has mets would go through the same process being approved or not as someone who has metastatic breast cancer and is ned.
Eventhough I am NED, my application was still processed under compassionate allowance and will be approved or not based on my abiility to work , not whether I am ned or not.
You said if someone is approved because they have mets, and then are ned "they might not meet the criteria of that particular part of the law, but there may exist a way to keep benefits under other portions of the ssa act"
I don't agree with that. Deak, for example. I believe that her reapproval was approved under the same part of the law that her original decision was. My understanding is that when she was first diagnosed, she got a quicker decision because her illness fell under the compassionate allowance, but she still had to prove she was unable to work. When her reconsideration came up, she was still evaluated if she could work or not. I don't see how whether she was ned or not had any consideration in this decision. She still had a medical condition, metastatic breast cancer and she still could not work.
I think you are making a distinction between women who are ned and those who are not, and saying it matters to ss and how you get approved, and I don't think it does.
laurie
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Sharon: Would you be able to let me know what "secret numbers" you used to get an update on your case. Is this something accessible to all of us? Thanks for any help you can provide.
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I just wanted to update that I found out I was approved for disability today.
I have been Ned for 2 years, but do have a lot of side effects from treatment.
Laurie -
Congratulations. So good to hear.
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Just wanted to add some info to Laurie' post on my situation. Compassionate Allowance only is in effect for the initial Stage 4 diagnosis getting one on SSDI for the 1st time! My 6 year CT State Reconsideration happens between 5-7 yrs in every State. I dont think the Reviews are Random either!!! The government hands it to the State level for the review and they are making as many cutbacks as possible and I got caught in the net. We all know people on State and Govt assistance programs who really don't deserve to get the help. I just wish they would leave all Stage 4 Cancer patients alone to fight their life battles without adding more stress whether NED or not.
I have been NED for my Bone Mets for a few years and had to present that my side effects are presently precluding me from working!!! Because my proof to the review was clear PET Scans, they sent me a letter terminating based that the information received shows that I can return to work. So believe me when I say to complain about every side effect, at all MD Appts or as a non-complainer like myself, I am left open to a termination and the stressful waiting period which follows for months.
I'm glad you got your approval today!!!
Pat -
One of these situations where being retiring and ladylike doesn't pay! Be the squeaky wheel!
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Laurie
I really don't want to get into a back and forth about SSA regulations, but I just want to address your points..
First I would encourage everyone new to the thread to start from the beginning and read every post. Lot of good info that if read will answer most questions. Please pay attention to the post I made on first page that discusses the 5 steps SSA uses to evaluate a claim.
Having mets does not get you an expedited decision. Having a diagnosis of 1 of the 200 conditions listed by SSA means a claim will get reviewed to see if it can be granted under the compassionate allowance program.
Now I know it may come as a shock, but even when some one has BC with mets they are not automatically chosen for a compassionate allowance and in fact have to demonstrate disability beyond step 3. That is because a person must have a BC diagnosis with a certain kind of mets as described in the regulations.
And even where someone with mets has been found disabled the regulations provide a way for SSA to terminate benefits where there is NED.
As far as NED. Yes it does matter from SSA point of view. When dealing with a government agency that processed 3.4 million new claims in the last measured year, 2011 I believe, one must throw common sense out the window. Using your example, if NED does not matter Deak would not even be re-evaluated. If NED did not matter then the review would have been routine and the prior decision would have been upheld and benefits continued. But what she describes is that She no longer met the step 3 test, and prob had to show at step 4 and 5, which means NED matters based on what she described.
The fact that you do not agree does not change the correctness of my statement. If one is approved under the compassionate allowance they are approved at step 3 which does not factor any vocational issues because when someone meets or equals the requirements it is presumed they cannot work. A compassionate allowed is always at step 3 where the person has no burden to demonstrate vocational inability, merely that the listing is satisfy which presumes lack of vocational ability. For instance one can be equal based on having BC that is inoperable or unresectable but at some point if that changes then they might not qualify at step 3 but still qualify at step 4 and 5.
all I care about is helping people to get the benefits they deserve, and I don't care how they do it be it step 3 4 or 5.
I tell my clients all the time that when it comes to SSA inverse relationships apply. When a client tells me that they have a worsening of their condition that means the SSA case just got better. And when my client tells me they have improved medically that means their SSA case just got worse.
Trust me NED means good for you and (in general) bad for your SSA claim at step 3.
As a final note as to why NED matters, there is one reason and one reason alone why stage iv BC is a condition considered to be one that is fast tracked under a compassionate allowance of the step 3 listings. SSA put it right there on the info sheet for the district office processing personal to read. And that reason is because a stage iv diagnosis that satisfies a listing means that there is a 20% survival rate at 5 years.
So if you are NED after 5 years SSA is gonna take a look at you to make sure they did not make an approval error simply for the fact that statistically a stage iv compassionate allowance should not be on the books 5 years out unless something very good has happened medically.
And I for one am very unhappy that you got approved for SSA, not because I am mean, but for the same reason I hate my wife was a stage iv approval, and that is because of the inverse relationship of the ease of getting a SSA approval to the seriousness of a medical problem.
Steven
It would be no different then if someone was approved at step 3. -
Hi Steven,
I just wanted to clarify , more for someone else who is reading this who is Ned and is contemplating filing for disability, that eventhough I have been Ned for 2 years, I was approved at step 3.
I did not have to provide any vocational / educational information, and was approved on my medical information alone. So, my application for disability was no different than someone who applied that has mets and is not ned.
Laurie -
I was out of work on sick leave for a double mastectomy 11/1-12/15. On 1/30/13 I ended up in the hospital several times with 2 letters of fluid in my pleura and 2 blood clots. I spent most of February in the hospital. I am now in a weekly infused chemo and have been on sick and donated leave since 1/30/13. Will SSDI go back to the first sick leave of 11/1/12 since it was only a month between it and the new progression?
Thanks,
Pat -
Pat - when I was approved for SSDI, they went back to my very first diagnosis of stage 1. Totally surprised me, but it was a very good thing. One thing to keep in mind, though, is that I was not working at all.
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Pat,
I believe they will go back to your "last day worked". I went back to work for four months, after chemo, rads and one surgery, but before another surgery...then I decided to apply. I couldn't handle working-felt like it was killing me quicker than the cancer! They only went back to my last day worked, after the four month return.
Hope that makes sense. -
Hello Ladies and Gents,
As with all of us with breast cancer, the time since our diagnosis to present is very stressful. The last 2 1/2 years has sent my family through the ringer financially. I have not been able to work since the middle of 2010. I was going to the bank on Monday to cash in on my retirement funds, that's how desperate I was. This morning I got the most wonderful news. My disability has been approved and not only approved but retro back to 2011. I was shocked. I applied the second week of Jan. It only took two months. I hardly ever cry, but when I saw that letter, I cried like a baby. My husband thought something was seriously wrong with me when I woke him up crying. I am only 50 years old and the funds will never be as much as I would have working a full time job but that money will surely help around my house.
God Is Good
Love and Blessings
Sharon
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