I am a 41 year old mother of five children, my oldest is 26 and has my two grandchildren, than I have 15 and 14 year old daughter and a 9 and 5 years old sons. I have a long story of health issues that started with my last pregnancy but once I finaly got clear from that I began having a constant cough, fatigue and chest pain. I was at the doctor every other week for a month during the summer of 2013. After a chest x-ray they found a moss in the left upper lobe of my lung. Doctors said, it is nothing and that they just want to monitor it yearly. My symptoms never got better and in the fall off 2016 I began coughing up blood. It only lasted four days, so again the doctor said lets just see what happens. In the spring I had another episode of coughing up blood that lasted almost two weeks, they finally decided to do a CAT sacn and the mass had grown to 5.2 cm, when it was first found it was 3.4 cm. In May of 2017 they removed the upper left lobe. Recovery was hard and very painful but just as I had started feeling normal I got the call literally a month to the day of the surgery… Synovial sarcoma. I was sent to U of M and the specialist said that we will monitor the other very small masses in my remaining lungs and the four masses in my thyroid, with scans every three months. Needless to say we lost our health insurance and I have not been back for any testing since August. I should be able to go back in two weeks but I am scared. I have not felt well at all, pain, fatigue, shortness of breath. I really do not have anyone to talk to about it because my husband just pretends everything is okay and I am fine and my mother thinks that I just need to be stronger and move on. So, thank you all in advance for letting me talk about my health issues.
Did the specialist think your lung mass was the primary? Did he think the masses in the thyroid were related? Synovial sarcoma likes to spread to the lungs so when a patient presents with a synovial sarcoma tumor in the lungs, the first thing that is usually done is to check whether there is a tumor somewhere else that could be the primary. The lung could be the primary but that’s rare and the thyroid could be the primary too but that’s also rare. Why didn’t they biopsy the thyroid?
In your situation, it was quite risky not to do your 3-months follow-up. If you do have metastatic synovial sarcoma, you may be able to get social security benefits including health coverage. University of Michigan should have social workers who can help you figure this out.
Why do you have to wait for 2 weeks? I would go as soon as possible…
Thank you so much for responding. Yes , my specialist thinks that the lung
is the primary location but no one has done any testing on the thyroid.
They said because my thyroid level are low but okay everything is fine. I
have had throat pain for 3+ years but that does not seem to matter. Thank
you for the advice on social security I will look into that. My new
insurance started on the 1st but I have to pay down some of my bill owed to
my primary before they will let me make an appt.
You have to go through your primary physician to get an appointment with the specialist?
Here are some links that may be useful for you:
Patient Advocate Foundation (PAF) is pleased to announce the expansion of co-payment assistance funding for patients with sarcomas. Additional information about the PAF Co-Pay Relief Program can be obtained by calling 866-512-3861 or visiting:
http://www.patientadvocate.org/
https://www.copays.org/
Family Reach is a financial lifeline for families fighting cancer. For over two decades, Family Reach has been helping families with cancer manage the overwhelming financial and emotional barriers of the disease. Working in close collaboration with a network of more than 145 hospitals and cancer centers nationwide, Family Reach provides immediate financial assistance, education and outreach to qualified families in need:
Patient Access Network Foundation is dedicated to assisting patients who cannot afford the out-of-pocket costs associated with their treatment needs. With 20 disease-specific funds, PAN assists the underinsured in accessing health care treatments. Call 1-800-316-7263 for more details:
NeedyMeds provides information on the programs many drug companies have that give away free prescription medications to people who have no insurance and qualify for their programs. Allows you to access the information on the drug by searching by drug or by manufacturer:
http://www.needymeds.org/
Partnership for Prescription Assistance helps qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them:
I’m so sorry that you have to go through this. I hope you will be able to find some peace during this difficult time and will find some relief from your symptoms.