I have posted a few times with ?'s in regards to my wife's treatment plan. A little background: she was diagnosed in June 26th of 2020 with HER2+ MBC to her lungs. She started out first 4 months of treatment on taxotere/herceptin and perjeta. This initial treatment eliminated everything but a small spot underneath her arm pit. During the 4 months on taxotere she took a leave from work(short term disability), but went back after herceptin and perjeta only started. Her latest scan showed progression in lymph node under arm pit and lung nodule. Her oncologist is advising going on taxotere (assuming 4 months again).
We discussed all options at the beginning and she decided to go back to work. She is in social work, and it's her passion, but it's very stressful. Now with reoccurrence, we are discussing options of her not working again.
Finally to my point, I apologize for being drawn out. Please provide any feedback on the process of securing SSDI, any feedback will be greatly appreciated.
Thanks for your time, everybody in this community will always be in our prayers!
Josh
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Jdavis19
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I applied for SSDI in Dec. 2018 because I was hospitalized for Guillan-Barre’ Syndrome, which involved 7 1/2 months in the hospital and 5 1/2 months in a rehab facility to learn how to do EVERYTHING again. It was just before I was to leave the nursing home that I was diagnosed with breast cancer.
That was MY long story! So, she should call the social security administration and speak with someone there. They will tell her how to apply. I was completely “out of it,” so a friend called for me. It takes 4 or 5 months before it “kicks in,” but when it does it includes back pay to the date that you applied.
Hi, Josh, I'm a social worker, too. I have a couple of suggestions to run past your wife! As a sw I've found volunteer MBC advocacy to be as meaningful as my sw career was. A great way to start is that every year (well, maybe not since the pandemic) the National Breast Cancer Coalition offers patient advocacy training in a program called ProjectLEAD. When I attended it was a week long and was an excellent opportunity to learn alot more about bc and what patient advocacy has done. They also spend a day af the end of their annual conference lobbying Congress for funding, esp of bc research. Also, the group Share offers opportunities for those of us who have become knowledgable about bc to volunteer for their national telephone helpline.
I went thru the SSDI process in 2004, about 7 or 8 months after I was diagnosed with mbc, with bone mets only. I was 58 and exhausted all the time. I started by asking my onc what she thought of my "retiring" early and she was very supportive. Then I phoned the closest
SS office and spoke with a woman there about the process. I learned that we can't apply for SSDI until we have actually quit working. Can't even schedule the appt with them until then. (on line app is available now, but the advantage of applying in person is that you can take copies of scans, blood work, onc's notes with diagnosis to that appt. It's the "evidence" we need to show that we do indeed have MBC. SS developed a protocol of approving SSDI for those of us with "terminal" conditions, and it goes much faster than for others. So I always made sure I mentioned stage IV metastatic terminal bc. I was taking no chances that whoever I was speaking with might miss that!
So, I quit work with a last day on a Friday and called SS again on the following Monday and was given an appt for 8 or 8:30 the next morning. (Oh, we do have to have worked and paid into Social Security enough quarters--in 2004 that was equal to 10 years.) When I got to the SS office, there were quite a few people waiting in the parking lot and right in front of the doors into that office. I heard people complaining about long they had had to wait for appts. Weeks and months! I kept my mouth shut about having to wait less than 24 hours! One of the rare perks of having MBC! Once we get that far, the process is pretty simple and SS staff and forms guide the way. There is a 5 month wait between the time we leave our jobs and the time we start receiving payments of SSDI, often called SSI. It really becomes six months because we get payment a month following the month it is for. (example; March's payment arrives in April.) Then, if our birthdays are near the end of them month, it's almost 7 months as payment arrives on the fourth Wed of the month. It is sent by direct deposit to our bank or credit union account. (In the time I've been receiving this, the money has always arrived on schedule!) We become medicare eligible once we've been on SSDI awhile, I forget whether it is 6 or 12 months.
I was able to start receiving early retirement benefits through my past employment as soon as I stopped working and that plus my husband's income was enough for us to live on. (we are cheap skates and know how to squeeze every penny)
I have always found both SS and Medicare people to be very helpful over the phone. I hope your wife will have the same experience. I hope she will do as well as I have with treatment and that you both will have many more years!
The wait for Medicare is two years from the time you start receiving SSDI.
I found the SSDI process straightforward. MBC is an automatic qualifier under Compassionate Care Allowance.
I went online to submit my application. I uploaded a copy of a hospital record confirming my diagnosis. I did not need a doctor note. I simply uploaded a page from my provider’s patient portal.
The approval process is accelerated and quick. I can’t recall if I received the approval via email, snail mail, or both.
It takes about 5 months to start receiving the check. I started collecting in 2020 and occasionally receive a COLA increase. I get the check via direct deposit.
FYI, SSDI allows you to collect the full amount as if you waited until your full eligibility age. There is no “discount” for applying early.
Here is a link to begin the online application. Good luck.
I'm on SSDI. Here is the link to apply or you can simply call your local Social Security number in your state. ssa.gov/benefits/disability/ I simply called and they bumped me through the process quite quickly. You have to not be working, there is a 5 month waiting period and they pay out as if you're 67 (I'm only 57). If your wife has Stage 4, its an automatic approval. After being a year on SSDI, you will start receiving information that your wife can work provided her income doesn't exceed a certain percentage of her previous wages. So that's a bonus. Also after 2 years on SSDI, you're eligible for Medicare. Woo Hoo ! I filed for SSDI in Nov of 2020, started getting my checks in May and I have to say it was the best decision of my life. Best to you and your wife ! P.S. There is no back pay from the date you applied.
I applied online for SSD in May 2017 when I stopped working. MBC diagnosed 2/16 with significant back pain and fatigue. The process was expedited due to diagnosis, and I was pleasantly surprised to find out that minor children also can get some benefits!I also had a long term disability policy for work. The money they give me is after deducting the SSD amount. This private insurance company would do anything not to pay!
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Friday first scan since MBC treatment...
Verzenio and Letrozole 3rd line
Frightened CA 15-3 increased sharply
