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Tumor board


LexieCat

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Oncologist called. Tumor board met this morning, including him, my surgeon, my pulmonologist, and a radiation oncologist. They decided they need a closer look at that spot on my tailbone (which showed up on the PET but not on the CT). So onc is ordering an MRI of that area of bone to see if they can tell what appears to be going on there. Waiting for insurance authorization for that, now. 

Guess this is a preview of the new normal--tests and treatments every time I turn around. Still waiting to hear about scheduling the biopsy. If I don't hear by mid-afternoon, I'll call and see what's going on.

I did a bit of figuring, and it looks to me as if I can probably afford to retire (which is starting to look pretty appealing). I already collect a decent pension, and I'm really only working to build up my cash reserves (403(b) and IRAs) and  to get a larger SSI benefit, but realistically, even if I knock the hell out of this cancer, it seems likely I won't have to fund QUITE as long a retirement as I thought I might. I'm by no means planning on checking out anytime soon, but everything involves a weighing of probabilities. I don't want to spend my last however long trying to work and cope with treatment. 

I don't even know yet exactly what I'm dealing with, but it gives me a bit more sense of control if I can figure out my options a bit in advance. I've got a financial planner who's crunching some numbers for me.

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Sounds like you have a pretty good grasp of your possibilities.  You can certainly wait until you know fully what you’re dealing with

We are all pulling for you

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You’re taking a similar path that we did.  I was very surprised when our financial planners told us I could consider myself retired.  I started paying into Social Security when I was 16.  My SSD application was approved in a few weeks.  
 

You might want to also run the numbers of STD and LTD if it’s available.  
 

I’ve met many survivors who stopped working to fight this disease and no one has regretted that decision.  
 

I’ve had the spinal MRI- it’s a long one- wear something cool because for some reason the procedure generates a lot of heat.  
 

Hang in there. 

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Teri,

Michelle suggests a good point. From your description of mets (not including coccyx bone), you'll like Stage at IV.  Social Security Disability (SSD) at Stage IV, is an easy determination.

The only complication is Medicare eligibility. If you are already eligible, fine. If not, SSD requires a 24 month delay before Medicare eligibility is obtained. 

I was declared disabled by Social Security during my year's worth of surgical mayhem in 2004. My company's long term disability insurance required I apply for SSD as a condition to continue receipt of disability payments, and that application was accepted by the administration. I didn't want to be disabled and sent the check back along with a letter saying I was returning to work. I stayed full time employed for eight years and for three of those I slugged through chemotherapy fighting recurrences. Side effects, mixed with chronic pain and job stress (director of research and development) made my life miserable. Ironically, when I felt I could no longer tolerate work related stress with treatment induced pain, I applied for SSD and was denied! I had to find a law practice that specialized in SSD appeals once denied, and it took about 6 months of paper shuffling and administration physical examinations and legal interventions to gain SSD. Thankfully, you'll be in a position to understand the legal complexity.

Stay the course.

Tom

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I  have good health insurance from my previous employer (the County). I pay only 20 percent of the premium--about $200/mo. I can afford that easily. I do have LTD (as well as STD) through current employer and I'm only a year from Medicare eligibility. Financially, I should be fine. If a miracle happens and this all "goes away" (to quote someone who shall not be named), I can always go back to work  if I want to.

In other news, biopsy is scheduled for 8/10--if they have an opening sooner they'll call me. I have to go for COVID test the Friday before.

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 If a miracle happens and this all "goes away".  Better yet :   When a miracle happens and this all "goes away"  

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I'm keeping my fingers crossed for you! Waiting for results is the worst and I think in our minds we always paint a bleaker picture. When I was waiting for the results when my mum was first diagnosed I was so terrified and I immediately thought that worst but when we saw the consultant it was nowhere near as bad as the scenario that I had painted in my mind. It was still a shock as being diagnosed with cancer is a shock to the system no matter what stage you are.

Whatever happens there are so many different options and treatments available. Cancer is no longer a death sentence, even with stage 4! The cancer landscape is changing, like with AIDS. Initially it was a death sentence, but so many advances in treatment mean that people can now live long and normal lives and in some cases even be cured of it completely. Think of the possibilities, not the limitations.

Monica

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Lexie,

Pulling for you Lexie...so glad that you've taken care of a lot of details already so now you can focus on your treatment and getting better.

Lou

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3 hours ago, catlady91 said:

Whatever happens there are so many different options and treatments available. Cancer is no longer a death sentence, even with stage 4! The cancer landscape is changing, like with AIDS. Initially it was a death sentence, but so many advances in treatment mean that people can now live long and normal lives and in some cases even be cured of it completely. Think of the possibilities, not the limitations.

Oh, I'm well aware of (and grateful for) the many treatment options and new discoveries out there. I think part of the secret to long-term survival these days is just to keep hanging in long enough for the Next Big Thing. I'm by no means resigning myself. But what works for me is to be as realistic as I can, while remaining hopeful. It would be foolish for me to assume I'm gonna breeze through this and get "fixed" quickly. Anything is possible, and I won't count it out, but I've been around these forums long enough to know the difference between possible and likely. I'm in decent health otherwise, and rarely get sick, so I think those factors are in my favor. I also know that at the stage I appear to be, it won't be a walk in the park and could be a much more aggressive disease (considering progression since 6 months ago) than it appeared to be when I had my lobectomy. 

I'm just still working through the shock of the unexpected scan results and the frustration of too few details at this point. 

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Hang in there. So many unknowns. Hope for the least aggressive treatment. I also consider myself a realist and maybe that looks negative to others. I just don’t want to be wiped out by bad news- always prepared!

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Hi Teri,

It's good to know that you can retire and have plenty to live on.I retired at age 57 without enough to live on, because I was beginning to be burnt out and also I wanted to travel. I knew I'd have to work some after retirement, which I've done off and on. Had to leave my last job due to COVID risk. I took my Social Security Retirement at age 63,  shortly before my breast cancer diagnosis.

I've really enjoyed being retired. Not only did it allow me to travel (when I could afford it!), but it also let me do some different kinds of work without worrying about the low pay, including working in Poland for about a year.

I highly recommend retirement!  

I'm glad you're well informed about treatments and that you've got a great team. I'm rooting for you; we all are.

Bridget O

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In other news, biopsy is scheduled for 8/10--if they have an opening sooner they'll call me. I have to go for COVID test the Friday before.
 

I also have my biopsy (Bronchoscopy) on 8-10 and a COVID test on Friday 8-7.  I turned 62 this last April and retired last February with 31 years at my job.  I figured it was time to enjoy/do some things other than that for the next chapter of this thing called life.   I wasn’t completely sure financially we could cut it and to be honest still am not.  At some point you have to take a leap of faith!!  
 

Good luck on the 10th!!  Sending positive thoughts your way .......

Babs

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Sorry, my previous reply was meant for LexieCat.  Thought I was a tad more “techno savvy” than I am.  😎

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Rooting like he** for you, Lexie.  I get the wanting to be in control of what you can and being realistic but hopeful at the same time... That is what keep us going.  I've marked my calendar for August 10th. You are going to have a lot of us sending positive thoughts your way.

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10 hours ago, Babs said:

I also have my biopsy (Bronchoscopy) on 8-10 and a COVID test on Friday 8-7.  I turned 62 this last April and retired last February with 31 years at my job.  I figured it was time to enjoy/do some things other than that for the next chapter of this thing called life.   I wasn’t completely sure financially we could cut it and to be honest still am not.  At some point you have to take a leap of faith!!  

Well, we are in this together, aren't we? Hoping for easy procedure and good results for both of us! 

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