Social Security Questions and Answers

Hi Steven ,

as everybody else also mentionedearlier thanks for doing this ,I m 38 year old , have a 4 year old and i live with my husband , I've been diagnosed with breast cancer in Sept 2010, as i had chemo first then surgery they dont know exactly the stagr but i had positive lymph nodes before starting the treatments and even in path report after surgery , so they dont exactly know how many were positive at the time of diagnosis as i did chemo first , I dont have lots of work experience , just some occasional jobs before my diagnosis , now my question is : can i apply for any kind of assistance such as SSI or disablity ??(I am a permanent resident but not a citizen , if that makes any difference) , i will really appriciate if u can help me.

thanks

NMM,I want to ask.I,m not citizen(permanent res>),also ,I don,t have enoph credits(only 29) and my salary were so small.,I was at this time student yet.Now,I want to apply for Capy.I,m single,senior.Can I apply .My Doctor told,I,mquvalefiveStage 3c,+19 positive nodes,have osteoporosis.

Thank you for any help and God bless you!

Ealier today, I posted on the Stage IV forum with an update on recent surgery and change in treatment but also had a SSDI and Medicare question.  I just happened to come across this post. Wow, I coudn't believe someone would take the time to do what you are doing especially when dealing with your wife's own cancer.  Thank you so much.  As you know, its so hard just to be dealing with cancer and treatments let alone financial and insurance issues.  I do hope that your wife is doing okay.  I know how hard it can be when you have a young child at home. My son was 7 the first time I was diagnosed (he is now 17!)  I was 1st diagnosed with BC in 2001 then again in 2005. Both times it was Stage I and I did chemo and radiation. At that time, I went on State Disability and went back to work after treatments. The cancer came back for a 3rd time a little over 2 years ago.  This time it metastasized to my lungs and it Stage IV.  While the lungs have almost cleared, I just recently found out that I have progression in the mediastinal lymph node and in the subpectoral area on my mastectomy side (they believe that area is either recurrent or residual).  I have been on chemo non stop for the last 2+ years.  It looks like the Taxol has stopped working  (Oncologist told me it eventually would)) so now it's time to move onto another treatment. Tomorrow I will be starting Gemzar.   I was approved for SSDI with no problem at all and started receiving benefits effective 12-1-09 but they set a review for 3 years.  At the time I applied, I don't think my Onc. was 100% sure that the lesions in the lungs on the CT scan were even cancer but they still approved me.  (I had up to 10 lesions so they did not do a biopsy. They were small and scattered throughout my lungs). Once I started chemo, she knew for sure it was lung mets as it responded to the chemo).  The last CT and  PET show that there is only 1 nodule left in the lung but now I have progression in the subpectoral area and the mediastinal lymph node.  The Onc. has always said that I will be on some kind of treatment for the rest of my life (I may get a few "chemo breaks" now and then) and that I cannot be cured. The goal is to keep the cancer at bay for as long as possible. So here is my dilemma on the Disability.  I currently pay for my own medical on a private plan (my family has a separate plan).  My monthly premium is over $500 plus I have all the co-pays on top of that.  Since I have been on SSDI almost 2 years, I will be eligible for Medicare in December.  I then automatically qualify to change my personal plan to a Medicare Supplement plan.  It will save me over half of what I pay now. The co-pays are higher but the monthly premiums are lower.  My concern is when they do the review at the 3 year point (which will be in a little over a year), I'm not sure what my status will be.  If for some reason they stopped the SSDI, I would lose the Medicare and supplement. If that happens, I cannot go back to the plan I currently have as you have to go through medical review and they would of course deny me. I could go on a conversation plan since they can't deny me coverage but it would be like 3 times what I pay now.  While I miss working, I feel that there is no way I could go back to work. Believe me, I'd rather be working than sitting home or going to the hospital all the time plus I made a lot more working.  I just am so tired on top of other issues from long term side effects from having so much chemo over the past 10 years.  Plus how do you go find a job and hope that they understand that there are days you will be too tired to come to work plus the fact that you have to leave for treatments, tests, labs, etc. at least once a week if not more. Also,  I used to be so sharp and now I feel like my mind is mush half the time.  I know that some people continue to work during treatments while having Stage IV cancer.  I think that most of them were already working at job they had been on awhile and have an understanding boss that is willing to work around it all.  I do not have that and have not worked since diagnosed 2 years ago.  I am assuming the SSDI will be continued but am wondering how that works with Stage IV and metastasis.  There may be times where the cancer is responding to treatment (like my lungs have) but then it pops up somewhere else later (like I'm dealing with now). While I'd of course love to have periods of no evidence of disease or be stable, my main concern is what if at the time of the review I am NED and they deny continuation of benefits based on that and I lose my benefits plus my medical.   I'm not sure what to do.  (I am married so I do not qualify for SSI, Medi-cal or other assistance)  I just don't want to worry about this as I have enough on my plate right now plus I do not want to end up later without medical because I cannot afford it. While I understand that you cannot provide specific legal advice and every case is different,  I'd appreciate any information that you can provide regarding the SSA review process. Once again, thank you so much.

I called the social security office today and the woman said I should have an answer on or before October 4th. She said they have all the info they need right now and the decision is pending. Is this a good or bad sign? Or maybe not a sign at all! I applied end of may begining of june.

Steve, Let me chime in and thank you for your time here.  I hope your wife is doing well.

I hate to ask a question, but here goes.  It concerns work credits.  I have been simultaneously self-employed and an employee of another company for a couple of years, ONLY self-employed for a couple of years and show losses of income on ALL these years on my tax forms.  I am not sure I have paid into FICA and earned work credits.  If not, can I amend those returns to pay those taxes and thus earn credits?

 I am Stage IV now and my accountant never asked me or told me about this, so I'm trying to find out now if I indeed paid in, but am totally freaking out!  If you know the answer, I would love to hear it!

Thanks.

Steven- I am soaking up all these previous posts from you and learning a lot. Thank you! 

I am 59, single, and just completed five months of chemo in June and 36 treatments of rads almost three weeks ago, and now have shingles, mild neuropathy, and lymphedema (mild but definite). I am thinking it is time to retire if I can- I am experiencing some major mental/neurological issues: memory loss, inability to find correct words, fatigue, depression, and stress/anxiety especially when  thinking that this will be an issue when I return to work as a teacher. Teachers have to be 100% present almost 100% of the time. I have been off since Feb, when I had my lumpectomy, but I have very little sick time so it made sense to go on disability and I am still on it now, thankfully.  I wonder if anyone has advise for me in this situation- too young for SSecurity, too borderline perhaps, for permanent disability, and yet maybe there is a way.

I have taught for 27 years now. I am not sure that going back would be good for the students at this point any more than it seems it would be for me. There is a ton of stress in teaching with all the requirements and demands and after what I have been through, not sure I can go back in full. I am tired and stressed and sick. 

From what I have read here, I may be eligible for something somewhere. I also have personally paid for disability insurance. So far, I have used the short term portion of that disability which pays a percentage of what my job doesn't pay me, which is the substitute's pay.  Other than that, I receive my pay from my job for the first six months of illness (except that in summer, we don;t get paid at all so I got nothing for two months), and now I am wondering, from all that you have written here, if I should try to get SSDI or something like that?

I am seeing two therapists to try to get my depression under control. One is through my hospital and is free to me, a service for cancer patients, thank goodness, and the other is one I can only see when I can afford her, and I have seen her for many years now for family related issues. One of them (I havent asked the other) has said she would sign anything for me, as she knows what my state of mind is.

Thank you,

Elizabeth

Any suggestions?

Steve, first of all, I am so sorry to hear that your wife has had some progression. I know all too well how getting that kind of news feels.  I have taken all of the chemos that you mentioned in your post. I took Taxol for over 2 years and as I mentioned in my post, I recently had some progression so I switched to Taxol.  I handled the Taxol (and Avastin) fairly well but seem to be having more side effects with the Gemzar.  I took A/C with both the 1st and 2nd diagnosis and tolerated it fairly well. I did get a little nauseous sometimes but tried to stay on top of it with either Zofran or Compazine.  I'm hoping that your wife will tolerate it well.  Sometimes I just get so tired of chemo but I know that I cannot stop. I don't think anyone really understands how hard it is on not only the patient but also the caregiver and family.  You sound very supportive and I know that means a lot to your wife. My first husband divorced me the first time I was diagnosed after 21 years of marriage when our son was only 7 yrs. old.  I am now remarried to a very supportive man and I can tell you that does make a big difference.  I want to thank you for answering my questions about the SSDI and Medicare.  I have an appt. set up with a Rep. from Kaiser to discuss their Medicare Supplement. I found out that there may be chemo co-pays in addition to lab and Dr. visit co-pays and now think it may not save much at all so I may just stay on the individual plan I'm currently on.  I'll make the decision after I meet with her. I was sure hoping I could reduce some of my medical expenses but may not be able to after all.  Maybe eventually I can find a part time job that will work around my chemo, Dr. appt. and nap schedules!!  (Sometimes I just get so tired)  It's my understanding that you can work while on SSDI and make a certain amount without jeopardizing your benefits.  Thank you again for taking the time to help so many people on this site especially when you have so much going on yourself.  I will continue to keep you, your wife and family in my prayers.

Very sorry to hear about your wife's progression, I hope so much that her Drs are able to find a successful protocol.  It is good to see you back on here as your absence was worrisome.

When I applied for SSDI I was not in pain and feeling relatively good, so the decision was made for the money.  Boy what a difference a couple months make, I'm now starting to suffer serious complications from bone loss as I experienced a collapsed vertebra 2 weeks ago.

As much as I hoped I might sometimes be able to go back and try working, the picture looks different now.

Steven, I just want to express my sincere gratitude for what you do for us here. At this point I have no questions for you. So far everyone else has already asked & you have answered. Maybe one day when I start feeling worse. For now however, I want to tell you how lucky your wife is to have such a good husband. To help her & us. You are amazing.

I hope that your wife's treatment is easy on her and she has little side effects. I don't think any of us  get by with no side effects. So little is what we hope for. I was on the newlasta shot to boost my white blood count, and Claritin-D did help. Here's hoping she gets some relief soon. Good luck to you all.

Leisa

Dear Steven,
Here are some links, some general, some specific, about your wife's chemotherapy coming up, including a link to this website's chemo side effects.  Then I talk about my personal experience with your wife's same medicines.

http://www.breastcancer.org/treatment/chemotherapy/side_effects.jsp
http://www.chemocare.com/bio/adriamycin.asp
http://www.chemocare.com/bio/cytoxan.asp
http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you/page7#SE15

But first, I am so sorry to hear of your wife's continuing difficulties with her cancer.  When I took AC chemotherapy , those chems make a person feel like they have a very bad achy flu, and since I am 60, I wound up with my doc prescribing me some pain medicines because I was so uncomfortable.... but the younger of my support group did better than me.  The second infusion of AC is when I started crying, doubting everything, really down, so flowers husband brought me cheered me so much.  But the good thing is, that AC combination of chemotherapy is really good for getting rid of cancer growths.  I had a 5cm tumor in my breast with a couple smaller ones, and it turned them into ZERO cm.  So, there is hope, AC is one tough combination on cancer. 

I had to take my temperature sometimes, it should not go over 100.  They gave me Zofran for nausea, it worked fine and was all I needed.  If her mouth gets to bothering her, swishing ordinary Arm & Hammer baking soda with water in the mouth eases discomfort.  Eyes can get lots of sleep in them, so I carefully wiped them off with damp tissue and used eye drops in the morning.  Drinking plenty of water is key to getting rid of chems and walking really helps with discomforts.  I cut my nails short as sometimes AC can goof up the fingernails, and my skin took on a dusky appearance.  Avoid sunlight at all costs, I unexpectedly had to be in sun without sunscreen or sleeves one day when car broke down, and my arms have permanent discoloration patches as a result.  AC can cause indigestion, and my pain meds caused some constipation, so she'll need various drugstore items for those.  Some women can carry on with normal activites, but I could not do anything!  When husband would offer to fix me a meal or pick up takeout, I really appreciated it.   
GG

Dear Stephen= I am finishing my fourth AC - make sure she takes her anti-nausea meds and if you think she needs more or different - push for them.  I am finally on a patch which makes a huge difference.

Keep pushing fluids as well.... 

Steven:  Sending you and your wife much support during this tough time.  You have received good info about tolerating AC.  I would add three things... 1) The antinausea meds (emend/zofran) are very constipating and it is important to take stimulant laxatives (not just softeners or bulking agents) nightly or she will get into trouble with severe constipation 2) The drugs for supporting her white cell count can cause severe bone pain.  If she can tolerate NSAIDs (e.g advil, motrin) I found that they were more helpful than the narcotics for the bone pain but that you need to take them consistently and not wait until the pain crests.  If she is still in pain than long acting morphine MSContin can help and by avoiding the peaks/valleys she can use less and have less side effects.  3) There are many studies showing that surgical removal of liver lesions may provide significant progression free survival.  Typically one needs to have 4 or less lesions, size needs to be less than 5 cm, and they need to be in a surgically acceptable place with a patient who can tolerate surgery.  If this option wasn't discussed with you it is important to get a second opinion where they are up to date with incorporating surgical resection into chemo plans.  Also as mentioned above many times the distant met is of different character than the original breast lesion meaning breast might be ER+HER2- and liver is ER-HER2+.  If the liver mets weren't biopsied they need to be to determine appropriate chemos.  

Thank you so much for all your help here with the SS disability questions.  I also have a question.  I have radiation induced brachial plexopathy and cognitive dysfunction from my breast cancer treatment.  I have been on private own job LTD for two years and applied for SSDI for  any job.  I will need to appeal the decision and wondering if I can do this on my own or if you think a lawyer is necessary.  If you think it is too onerous or unadvisable to appeal on my own do you have any recommendations for MA?  Thank you again for your support.  I can only imagine how tapped out you must feel.