Newbie with Bone Mets and Alone

I'm sorry to hear about your stage 4 diagnosis and your husband's death. I am not stage 4, but I visited CTCA when I was diagnosed and went through the whole 3 day intake process with them. If you are planning to quit working you can just cross them off your list because they do not accept Medicare. If you have unlimited funds you can pay out of pocket, but my 3 days of tests and consults, which mind you included ZERO actual treatment, cost about $30,000. I only know this because they accidentally put me in their system as self-pay and sent me a bill instead of sending it to my insurance company. I believe my insurance company cut that amount down to a few thousand dollars, so they are severely marking up the self-pay folks. If they accept your insurance, you can start treatment with them but as soon as you go on Medicare they drop you as a patient. They are very up front about this, in fact the very first person you talk to when you get there is the finance person, and the first thing you do is sign a bunch of paperwork agreeing to pay for anything that your insurance refuses to cover. They also tried to give me a form to take home for my spouse to sign saying he accepted responsibility for any of my unpaid bills as well. They also don't do hospice care. When I asked about hospice services the nurse navigator told me I was getting ahead of myself and I didn't need to worry about that yet (I was stage 2 or 3), but when I refused to drop the issue she admitted they have nothing in the way of hospice care, all they could do is refer me to a local hospice company. I did not get any kind of personalized medicine; their recommendation for treatment was boilerplate based on my receptor testing and tumor size/lymph node involvement; I could have looked it up online. It might be different for stage 4 patients though. I thought the doctors there seemed competent enough, but I preferred to do my care elsewhere because if I ever do reach stage 4 and have to go on disability and enroll in medicare, that is not good time to be dropped by my cancer center! People bag on this place a lot because of their for-profit business model, but I think they're no worse than your average local private practice, most of which are also for-profit, except that their doctors are more specialized, meaning if you go here for breast cancer, your doctors would most likely only see breast cancer patients.

I would recommend going to an NCI designated center if your insurance covers it. These places have the best outcomes, and I believe they are required to accept Medicare patients. Emory will be the closest NCI center near you. Next best would be any teaching hospital. I personally prefer treatment at a large medical center because they will have specialists and care for all your problems; if anything crops up during your cancer treatment they will be able to refer you in house and that person will have access to all of your test results and treatment records.

I have been treating at Mayo Clinic and MD Anderson, both of which are NCI centers. I feel like they also take a holistic approach, but they call it "integrative medicine", but they don't push the integrative medicine as hard as CTCA - its there if you ask for it but I felt like CTCA was pushing it on anyone whose insurance would pay for it; they just scheduled consults with the naturopath and nutritionist without even asking if I wanted to see one. I have been getting acupuncture at MD Anderson for my neuropathy, and both Mayo and MDA have nutritionists (I found my nutrition consult at CTCA to be useless btw) but they don't use naturopaths. I have not signed a single finance-related document at either place. I supplied my insurance info during the intake process and once I met my out of pocket max I've had no further bills. There was no talk of getting my husband on the hook for my unpaid bills. They have lots of financial aid programs if you have trouble paying your bills. Best of luck to you.

Oh, one more thing that bothered me about CTCA; while I was there, I heard a code blue called over the PA system. A few minutes later, an ambulance showed up and carted a patient out, presumably to a hospital. And I was like "um, I thought this was a hospital??" So yeah, you never know what else is going to hit the fan while you're in treatment which is part of the reason why I prefer large medical centers for my health care.

I can't talk about the cancer treatment because I too am newly diagnosed. However, I can emphasize with you about being a widow living alone. I luckily do have many friends, but they are not going to be here at my house. I would just feel better to have someone living with me. As far a medicare goes --- if it was me (and you're already used to paying a premium) I think I would buy a good old fashioned medicare supplement instead of one of the new advantage plans where you give up your medicare and everything is through the HMO. I was at a large medical group a month ago and saw a sign that they will no longer accept Humana effective 2019. That's scary. No regular doctors office is going to not take medicare Just do a lot of research before you decide --- and don't get pulled into the 'free exercise groups the HMO's offer. . Blue Cross has a medicare suppliment and there are many more. The medicare website will list them.

Meg, I think you may be lumping all of your problems into one great big bag, which was already stuffed full with each problem on its own. And therefore, its just overwhelming and panic-inducing. Try to sort them into different groups and tackle each one in its time and best way, ie grieving your husband, worrying about your son, making your doctor appointments and decisions, retire or not, move or not, etc, etc. No promises, but it is not crazy at all to think you will still be here in ten years, and possibly for many more years beyond that as the treatments are changing fast. As you sift through your problems, also build in extra free time for yourself, obviously the stronger and happier you are, the better it will be for everyone.

So far as I can tell, CTCA takes a lot of money from early and late-stage cancer patients who are willing to pay extra for treatment that might not be any different (or even as good) as the advice and treatment you will get from a major teaching university hospital- just takes some research to find the group near you that handles regional clinical trials and is familiar with new therapies. You will have to get a biopsy done, and re-done every time you have progression (because the cancer will have mutated and changed in order to escape the drugs) and always get a second opinion for what next treatment is best, but beyond that you can treat this as you would for any other chronic condition. Things will get a lot better, after the shock and awe wears off..

Meg, I am so sorry that you are having such a terrible time. You certainly have a lot to deal with, and I wish you all the best as you go forward. I'm sure you will find a lot of support here.

I hope that I can help you a little with your Medicare questions since I retired this year and signed up for Medicare Parts B and D (I already had A) as well as a Medicare supplement plan. I did all this after the age of 65, and as you have already noticed, signing up after 65 complicates things.

Basically, Medicare expects you to enroll at age 65, and you will face financial penalties if you enroll after your initial enrollment period ends. You can avoid those penalties if you can show that you qualify for a special enrollment period, and if you enroll during that period. However, the rules that govern who qualifies for a special enrollment period can be very complicated and confusing. For example, if you delayed enrolling in Medicare because you were working and had health insurance through an employer, and if the employer employs more than 20 people, your employer-provided insurance is your primary insurance for as long as you have it, Medicare is secondary, and when you lose your primary insurance because of retirement or some other event, you qualify for a special enrollment period for Part B and another for Part D. (I think there is also a special enrollment period for Part A in this situation, but since I had enough work credits to qualify for premium-free Part A, I just signed up for it at 65 and didn't have to worry about it.) What if your employer employs fewer than 20 people? That's a different situation entirely. Because this can be complicated, I suggest that your first step, once you have had a chance to catch your breath, should be to educate yourself on the subject of special enrollment periods. If you aren't sure how the rules will apply in your specific situation, the Medicare website has a list of the agencies in each state that can provide "personalized health insurance counseling."

Assuming that you will qualify for special enrollment periods for the various parts of Medicare, you don't need to do anything until the special enrollment periods begin. At that point, or shortly before, I suggest that you begin gathering the documentation that you will need to show that you are entitled to a special enrollment period and should not be charged a penalty for late enrollment. Don't delay too long in getting started, because someone, somewhere, will mess you up. True story: to get penalty-free Part D coverage, I had to show that I had creditable drug coverage during the five years between the time when I became eligible for Medicare and the time when I retired. But, instead of sending out annual letters certifying creditable drug coverage, my employer had fallen into the habit of sending out a generic "Dear Employee" email every year that directed employees to see a special section of the employer's website for copies of policies that applied to us and other important documents. The annual certificate of creditable drug coverage was buried in there. It took me almost a month to convince the personnel office that a series of generic emails which did not contain my name, and which directed me to a series of certificates of creditable drug coverage which also did not contain my name, would not be accepted as proof that I had creditable drug coverage during the five years for which I needed to show coverage. I was ready to tear my hair out.

As for Medicare supplement policies, the good news is that you can apply any time. However, there is a huge advantage to applying within six months after you get Part B, because if you do it then, insurers can't deny you coverage or charge you higher premiums because of a pre-existing health problem. If you apply outside of that period, in most states they can (and most likely will) either deny coverage or charge higher premiums for health problems. A few states don't allow such scummy practices, but you would have to check to see if your state is among them.

I hope this makes Medicare enrollment a little less confusing. If I have unintentionally made it MORE confusing, I humbly apologize.

Hi Meg8000,

I am so sorry for your loss and your reoccurance. I also leave in the Atlanta Metro area. I have always chosen Emory for major health problems. However, with my diagnosis in August 2018 with stage IIb ER positive, lymph node positive breast cancer things changed. At the age of 35, the first step in my process was fertility preservation and this was handled at Emory(didn't work btw). The weekly appts at midtown or main campus and paying for parking were a bit much for me at the time. This immediately let me know that despite the excellent medical treatment available, my quality of life would diminish based on the sheer amount of stress from downtown traffic and parking alone. My next choice was Piedmont Fayette, which seemed logical as it was closer and no traffic worries. However they sent me to a MO at Georgia Cancer in Fayetteville. I did not like the idea of having a surgeon one office and a MO in another office and appts were being scheduled to far in the future.for my liking. So, I went to CTCA Newnan for a consult. I feel in love with the one stop shopping approach. I have been receiving treatment there since August. My oncologist is great. Every department works together and everyone is very accomadating. I received 4 dose dense biweekly rounds of AC and weekly taxol(recently ended last week due to neuropathy). I would typically receive my schedule via email.and.portal. for my.next.appt.before i completed treatment for the day. Yes, I had some very long days. Labs usually at 8 or.9 followed by provider appts.and ending with chemo in the afternoons. But never once did we have to leave the facility once we arrived as our meals were provided. I was never asked for a copay or deductible as the clinics do not ask anyone for this information. You are allowed to.focus solely on.your treatment. There is a finance department who will.contact you via phone or mail as needed and assistance is available. I am not sure about Medicare. I do know they can't provide food, hotel, or travel discounts if you have Medicare. All your medical information is a available to you through your portal. Labs are typically available 30mins after draw and imaging about 1 hour. This was very important to.me.as I.hate waiting on test.results. of course it's read at your own risk bc your.dr may or may not have reviewed it yet. As I prepare for my left mastectomy at the end of this month, I am very thankful that I.chose CTCA. It was the best choice for me and my family. You have probably made a decision but I wanted you to have some insight to their service . Take Care

It appears that 36andcounting does not have metastatic disease. She is describing the typical patient that the for profit CTCA chain loves to accept - early stage with private insurance. Her treatment will soon be over, unlike those of us with mets who only stop when we enter hospice. Any major medical center with up to date technology can provide routine lab results in 30 minutes and imaging reports within an hour plus put them up on a patient portal so that is not a unique service. With her young age, I trust they offered genetic counseling.

For meg, our original poster, have you been told that you would see an orthopedic oncologist? Presumably, you don't have primary bone cancer. You have BC cells present in your skeleton. Since your diagnosis was over two months ago, I would hope the biopsy and rads are behind you by now and the CDK 4/6 inhibitor/hormonal/Xgeva or bisphosphonate therapies have begun.