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Living with recurrent advanced endometrial cancer at 56

hsf2019
Posts: 2
Joined: Nov 2019

First visit on the forum. Diagnosed with Stage 1B uterine cancer 19 years ago at the age of 37 ( no genetic predisposition, thin, no estrogen use, no risk factors). Treated with surgery and pelvic radiation. I did well and went back to work in healthcare after recovering from surgery. Thought I was cancer free forever. 2 years ago was feeling lousy- weird abdominal pain, weight loss, fatigue. Found to have multiple liver metasis all consistent with my inititial endometrial cancer. Treated with carbo and taxol for 7 cycles untli I had to stop due to bad neuropathy. Worked during chemo or would have lost our health insurance and income as I had no short term disabily and my husband's job has no benefits. Husband changed jobs so now we have health insurance but he is not happy with his current job.  Now on progesterone and tamoxifen doing better but still with multiple liver metastasis. Trying to figure out whether to try to go back to work in a limited capacity. I would like the intellectual challange but worried I will loose my long term disability income and chance of getting medicare from social security disability next year. My oncologist considers me disabled and my prognosis is anyone's guess as I was not supposed to be here now! Just wondering if others have had similar experiences or thoughts. Thanks

LisaPizza's picture
LisaPizza
Posts: 331
Joined: Feb 2018

Oh my goodness, this cancer is so sneaky. I can't offer any info about Medicare and disability, but I do believe some others here are knowledgeable. But welcome, we're happy to have you here.

Forherself's picture
Forherself
Posts: 464
Joined: Jan 2019

This cancer IS so sneaky.  I am sorry you are having to deal with this.  I do remember somone saying they received disability from this diangsosis on Social Security.   I guess if it were me I would try and get on Medicare.  You could get mental stimulation volunteering if working complicates the situation.

I don't want to ask too persoonal a question, but did you have endometriosis.  I sometimes wonder if the endometrial cells still there can go bad.   This is such a long remission.  

There seem to be stories in the news of new immunotherapy in the works.  

Others will respond.  

hsf2019
Posts: 2
Joined: Nov 2019

Hi,

Just to clarify, I am on social security disabiliy but have not yet qualified for medicare as it takes 2 years from the time you are eligible for benefits. In response to your question- no , I did not have endometriosis .

zsazsa1
Posts: 539
Joined: Oct 2018

I'm so sorry for what you are going through.  I agree, time to consider other treatments.

Did you know that you are allowed to earn a certain amount of money without it affecting SSDI?  And if you earn more than that amount, your SSDI is simply decreased by what you earn.  If you earn enough that you wouldn't be receiving SSDI, and then have to stop working, the SSDI resumes without your having to reapply, even with a gap of 5 years of earnings.  But what I don't know, is how does it affect your eligiblity for Medicare?

 

MoeKay
Posts: 301
Joined: Feb 2004

From the Social Security Administration on Medicare: https://www.ssa.gov/disabilityresearch/wi/medicare.htm. 

There is a section on Medicare for Working Beneficiaries with Disabilities. 

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

I am sorry you find yourself here after 19 years! I can only imagine your shock.  I worked throughout radiation and then the first time I had chemotherapy, but it was very taxing and since I qualified for early retirement, I took it. I had a very difficult time, mentally, the first six months I was retired. If it hadn't been for the side effects of the treatment I would not have chosen to retire yet. I wound up working part-time for the extra income and the stimulation. So I understand why you want to work. You are young, and right now, the tamoxifen and progesterone seem to be holding your disease from progressing. 

You can work part-time while on SSDI but I do know you have to monitor how much you make. It takes SS awhile to "catch-up" and adjust your montly benefits if you earn more in a month than you are allowed while on SSDI. That adjusting up and down of monthly benefits can be problematic when you depend on a certain amount on which to live. I went through this with my son. So if you do work part-time, I would encourage you to keep it below the maximum amount you are allowed to earn while still collecting your SSDI benefits. My son was still elibible for medicare once he qualified for it, even while working part-time.

oldbeauty
Posts: 286
Joined: May 2012

Welcome hsf2019.  I, too, am a recurrent cancer warrior, and you got me beat.  Living with cancer for 19 years; I'm at 14 years and counting at two recurrences, in 2012 and 2017.  I am sorry to learn of your liver mets; mine has been to the lung.  Since I ended chemo almost 2 1/2 years ago, we are watching and scanning a slow-growing single pulmonary nodule that is currently at 7mm.  As someone who sweat bullets about health insurance from 2012 when my first recurrence happened until this year when I turned 65 and got Medicare, I would not trade guaranteed health insurance for anything.  I have not had to undergo treatment yet under Medicare (just scans and doctor visits, etc.) but from what other 65+ ladies here say, I do not expect Medicare to deny anything I might need...or want for that matter.  If you get Medicare, however, I would also do anything necessary to budget for a good Medigap policy.  Type G is the best coverage.  It will pick up the 20% that Medicare doesn't pay, and should leave you really with only a modest annual out of pocket.  I have not spent a penny this year other than the annual deductible Medicare requires, which is nominal.  But you can research that later when the benefit kicks in for you.  For me, reaching Medicare was like grabbing the gold ring on the carousel.

You don't say what kind of uterine cancer you have, the garden variety endometriod adenocarcinoma (like me) or the more aggressive type, UPSC or MMMT.  Especially if the latter, I would not risk losing health insurance.  But that's just my experience and emotional roller coaster that I would not want to experience again. Come back as often as needed; this is a wonderful support group and a tremendous resource for facts about the disease and treatments.   Best wishes to you in navigating your course.  Oldbeauty

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

I can't wait to replace the expensive private health insurance that I've had for almost 40 years with Medicare and a supplement plan when I turn 65 in a few months.

I did draw upon my personal disability policy for the time I was in treatment, but went back to work once treatment was over.

However, I was able to scale back on the amount of work I took on. I don't take out-of-town projects anymore and I'm far more selective about the projects that I do agree to do. But the main reason I didn't quit working completely was that I needed to pay for health insurance.

You're much younger than I am, so I understand that you may want to still work at least part-time. But having dealt with challenging health insurance issues for so many years, I'd be reluctant to do anything that would jeopardize qualifying for Medicare before the normal age of 65.

But since it does appear that you can continue to receive Medicare after you return to work, as long as your disabling condition still meets Medicare's rules, you could hold out resuming part-time work until you after you've started Medicare next year.

Of course your husband is still going to need his own coverage at that time. Perhaps he'll find it easier to change jobs if he's the only one to be insured by his new employer.

I hope progesterone and tamoxifen continue to keep you stable. Sometimes it's just a matter of holding on until a new treatment comes along that's more effective.

My mother struggled with her cervical cancer for 7-8 years, trying different chemotherapies and having multiple surgeries as the cancer spread. Finally she saw a different oncologist in 1987 who wanted her to try a new chemotherapy that had just been approved by the FDA. This treatment actually worked and put her in remission for the remainder of her life. When she died several years later (she was in her mid-70s at that time) she was still cancer-free.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I got Medicare last September after being on disability for 2 years and it’s been wonderful. I have the F medigap plan and everything has been covered. Even a 2 hour ambulance ride to a hospital for an emergency nephrostomy that couldn’t be done locally. The provider had to appeal but Medicare ultimately paid. 

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