New here

[JerseyRose]

Hello everyone. My name is Rose and I just found this website. Five months ago, I was having A gripping  pain in the right side of my chest once or twice, every other day. I went to my PCP and she sent me for an ex ray of my ribs. Turns out That no ribs were broken but a nodule showed up on my upper right lung.. After seeing the report  my PCP wanted to send me for a CAT Scan. The problem was I don’t have a car and depend on a Fare Free bus service for transportation. During the early days of the Coronavirus Pandemic this bus stopped scheduling rides and I didn’t go for the CAT Scan until just last week. Well my PCP called me after she got my results and told me she wanted me to see a Pulmonologist and an Oncologist but she didn’t tell me how big the nodule was or anything else. I was so shocked by what I heard that I didn’t ask any questions. Today, after waiting a few days and doing some research online, I called my Nurse Practitioner again to ask her a list of questions. She wasn’t in the office today so I left a message to have her call me back. I also live across the street from her office so I’m going to ask for a copy of the Radiologist’s report tomorrow so I have an idea what I’m dealing with. I was wondering if there is a list of questions I can find anywhere online to ask my Pulmonologist and Oncologist at my first office visits? Thanks in advance for your help.By the way, I’m 63 years old and a former 50 year smoker. I quit smoking for 11 months last year, went back to it and just quit again on April 17th.

[Tom Galli]

Jersey Rose,

Welcome here.

Here is a comprehensive list of recommended questions. Here are also some suggestions for the recently diagnosed.

You have yet to have a diagnosis so there is a lot of new vocabulary to learn. Lung Cancer 101 found here is a good way to read into our disease. With a CT complete, your next diagnostic step is a biopsy to determine the type of lung cancer. Then after your biopsy, you will likely have a PET scan to determine the stage of your lung cancer

Of course you are worried. We completely understand and have been there. I had a surprise diagnose in February 2004 and I'm still here. These are my suggestions for how to survive this disease.

You'll soon meet a lot of people on this forum and all of us are here to support and assist you as you undertake your battle. Take some time to read into my suggested links and if you have questions, this is the place.

Stay the course.

Tom

[LexieCat]

Wow, all these Jersey shore people--we just got another new member in Ocean County. I'm in Camden County, right across the river from Philly.

I'm the same age as you are and I had a lobectomy, for what WAS a Stage Ib cancer, three years ago. I had no followup treatment, just regular scans every six months but I just found out it's back, with a vengeance apparently. I'm waiting to have a biopsy, but it's looking kinda scary right now.

I totally get feeling overwhelmed--you are in the right place, though, to get answers to your questions and great support. These folks here were a lifeline for me when I had my surgery and I plan to lean on them a whole lot going forward, once I find out what exactly it is I'm dealing with now.

If your experience is anything like most of us here, you will feel calmer and more in control as you learn more and get a treatment plan in place. 

I'll be rooting for you!

 

[JerseyRose]

Thank you for your kind words and the information you both provided. I just picked up a copy of the Radiologist’s notes from my CT scan and what I thought was going to be a single, small, nodule in my right lung turned out to be a 2.4 cm solid mass ,with spiculation in the right middle lobe. I also have a 2 cm ground glass opacity in my left upper lobe and two smaller nodules in the left lower lobe. The radiologist recommended a PET scan and biopsy so I guess that’s coming next. I see my Pulmonologist on Thursday and the Oncologist next week. I’m not the least bit nervous about getting a PET scan or having a biopsy, my only concern right now is how I’ll ever be able to pay for all the doctor visits and procedures I may need. I’m live alone on a small SSDI income and  only have original Medicare. I don’t qualify for Medicaid and I can’t buy a Medigap policy until I’m 65 , where I’ll be accepted with a pre-existing condition.That won’t be until December of 2021. How do people pay for these things if they don’t have savings or any assets?  Any info on this would be greatly appreciated.

[LexieCat]

Talk to a social worker at the hospital where you're being treated. I was in relationships with two different people who faced serious health problems (testicular cancer, heart attack and ensuing bypass, and liver failure), both of whom received "charity care"--a fund that most hospitals have for people who lack adequate insurance. They also can help with referrals to other sources of help.

I'm sure others here will have other suggestions as well, but that's what I have personal experience with. Incidentally, these were in NJ--Cooper Hospital and Our Lady of Lourdes, both in Camden.

[Mamma Om]

Hi Rose. I'm sorry to hear of your diagnosis, but I'm another survivor of lung cancer, as well as 2x breast cancer, and thyroid cancer, so don't give up hope. I want to say that I hope you never again have to delay a diagnosis test, a procedure, or a doctor visit due to lack of transportation. I know that before coronavirus the American Cancer Society offered free rides to any cancer patient for all of the above, and also treatment appointments. Call them and find out.  You can also check with your local senior centers, state or County senior help programs, and some church groups and religious organizations. Most of these resources offer some form of ride for elderly medical patients. Make some calls, as you must not neglect yourself and your health for lack of a ride. I wish you the best through this journey. 

[Judy M2]

JerseyRose, Medicare pays for a lot. I've had many procedures prior to chemo and radiation, as well as emergency surgery afterwards (due to a complication from chemo) and several weeks in a rehab facility. Medicare has covered just about everything. I do have a Medigap plan (I'm 67) for the 20% not covered by Medicare, and my Medicare Part D (RX) plan has also covered my many prescriptions with only a nominal copay.

If you end up being prescribed a targeted therapy, the drug manufacturer should offer financial assistance, so be sure to look into that. Your oncologist should help you navigate that process.

Confirm with your healthcare providers that they will accept the Medicare reimbursements with no additional payments from you. 

I'm sorry you have to be on this journey but please know this site is a great source of information and support. Best wishes to you. 

[Rower Michelle]

Hi Rose,

Just wanted to offer a warm welcome to another Jersey Girl- I’m from up North, Exit 150. I live in KC now, was diagnosed with LC at the age of 51.  Initially the prognosis was poor but biomarker testing (also called tumor testing, next generation sequencing, genomic make up- all means the same thing) found a gene mutation which has responded to targeted therapy.  It’s very expensive, fortunately the pharma company offered assistance.   
 

When we’re through this pandemic, you’ll find there are quite a number of free resources for cancer survivors, ie Cleaning for a Reason as an example.  Sometimes the social workers are aware but in my experience most are not.  You’ll find inner strength you didn’t know you had to gear up for what lays ahead and just made a whole lot of new friends to help you along the way.   We’ll be here for you. 
Michelle

[LouT]

JerseyRose,

I just wanted to welcome you to the forum.  You have so many people here that will offer support and can help answer all your questions.  You're getting some good advice, please use the many services that are available so you can properly be treated and get to and from appointments and all the other elements of treatments.  You deserve to get well and we'll all be pulling for you.

Lou

[Lisa Haines]

On 7/28/2020 at 4:06 PM, JerseyRose said:

 How do people pay for these things if they don’t have savings or any assets?  Any info on this would be greatly appreciated.

Dear JerseyRose,

     I worked as a Patient Accounts Manager for many years at a public hospital in Massachusetts and there were (and still are) always programs and assistance available for patients who did not have full medical coverage and even those without any coverage.   ALL of these programs tend to be income based and if you already have limited income and assets, that will help you more easily quality for other programs.     We always tried very hard to do whatever we could to tell patient's not to worry about medical bills and instead focus on getting the care and treatment that you need.  All hospitals have financial counselors and social service staff that can help you find any potential assistance, the hardest part is finding the right people to talk to.  I would start by either contacting the hospital where you are having your tests/care and also ask the staff in your Primary Care MD's office for their assistance.       I honestly would not try to be concerned about anything that Medicare is not going to cover, at this point, but I would start of process of looking into whatever assistance programs might be available to help you.    Most drug manufacturers also offer assistance programs for people with limited income and assets.   We had patients every day that were not fully insured and they were always treated and we did whatever we could to find them helps.  There are "Free Care" programs in almost all "public hospitals".   

     It's also possible that having a change in your medical status may mean you may now be eligible for Medicaid.  It will depend on why you were denied and if you do end up with a cancer diagnosis that also expedite you in re-applying for benefits.     

     Right now, I would try to focus on getting through the scans and getting the biopsy done.   Believe me, these folks work every day with people who do not have full coverage and they are not gong to deny you care.   

    I wish you the very best as you go through the diagnostic process and hope you'll quickly be set up for your biopsy and Pet Scan.   When you can and set up an appt with the Pulmoanry MD, you can start by asking them if they can recommend the best resources in your area.   

    Best wishes...

      Lisa