Rob Read, neuroblastoma and thyroid cancer survivor

"It seemed that doctors put more focus on healing the body, there was not be adequate emphasis on what to do after the cancer is gone."

As a one year old I nearly stopped breathing one day.  I was rushed to the hospital where doctors found a small grapefruit size tumor in my back, which caused my lung to collapse.  Shortly thereafter I was diagnosed with stage two neuroblastoma.  I had surgery to remove the tumor, received radiation treatment and my mother administered chemotherapy pills to me orally.  Doctors reassured my mother that there would be no side effects of the radiation.  Up until the age of 18 I had regular checkups to asses my overall health.  At 18 I was fortunately told that I had a clean bill of health.

While in college in 2004 doctors found a colloid nodule attached to my thyroid gland.  During spring break of senior year doctors removed this nodule.  Also apparent were multiple tumors attached to my thyroid gland.  Later I was told that my thyroid cancer could have resulted from the radiation treatment I received as a child.  Six months after my total thyroidectomy I underwent radioactive iodine treatment, which forced me to be in complete isolation for three days due to the radioactivity.  Once again I was not told by my doctors about potential side effects of this treatment. 

At the time of my second diagnoses I did not know the right questions to ask.  Doctors were minimally helpful in providing me information on his disease and on follow-up recommendations for coping.  It seemed that doctors put more focus on healing the body, there was not be adequate emphasis on what to do after the cancer is gone.  I believe that oncology doctors also need training on what programs and services are available to their patients after treatment to address post-cancer issues.  

I am currently giving back to cancer community and hope to start a cancer research related non-profit one day. I am the volunteer coordinator for The Leukemia and Lymphoma Society's Light the Night event, and chair the Sonoma County ACS leadership committee.  I believe that my volunteer and advocating efforts are just the tip of the ice berg.  I can never pay back all those people who sacrificed time, money and much more to enable me to be alive and cancer-free today.  However, I can join their efforts to help more people lead happy and productive cancer-free lives.

 

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Submitted by: Nancy J Thompson
August 18, 2010

I lived 5 miles downstream from Three Mile Island when the 1979 incident occurred. In 1993, my doctor found a nodule on my left thyroid. It was removed and I was told that taking synthroid daily would shut down the right side of my thyroid and prevent any possible cancer cells from spreading. In 2000, the rest of my thyroid was removed and I then received the largest dose of radioactive iodine ever administered at Naval Hospital Pensacola, FL. I was told that there were no side effects; however, my salivary glands shut down. All my endocrinologist told me was that should not have happened. My saliva level is finally back to normal after 10 years. The lack of saliva has ruined my teeth. I was 23 when TMI occurred and the government has since declared no relation exists between TMI and any type of cancer. Now I find out that large doses of radioactive iodine increase my chance of another cancer.

 

Submitted by: Rita Bubb
July 31, 2010

I am a lung cancer survivor of 10 years. My tumor was found by accident. I had broken my ankle and the surgeonordered a chest x-ray before the operation to set the bone. I was shocked when I learned that there was something abnormal on the chest film. But then the lung specialist said it didn't look like a cancer to him as it was a very small mass. He suggested watching it for 2 years, with CT Scans every 3 months. If anything changed on those scans, then we would have to get further testing, ie. biopsy. Due to the position of the mass, it just wasn't easy to biopsy (under my left shoulder blade.) At the 2nd CT Scan, the "thing" had grown. Then a guided needle biopsy was possible. That yielded up malignant results. Then there was the surgery. Not an easy surgery I was advised by my surgeon, as if I had a choice about this. The surgery was actually a nasty, nasty thing. And I was left with nerve pain afterward. One very fortnate thing is that there was no cancer in my lymph nodes. That meant that I didn't need chemo nor radiation. There was no place to find support after my cancer was removed. I did call one hospital that ALCASE had listed as having a support group where the nurse told me that the group had stopped meeting because of lack of attendance. She started it up the next month. The attendance varied from month to month, but they did keep it up for some time. It has again disbanded for lack of attendance. The problem with lung cancer support groups is that too many of the lung cancers are found at stage 4 and the prognosis is not very good at that point. I do belong to some on line groups and we see the problem of lung cancer receiving so little research money when more people die each year of lung cancer than breast, prostate and colon combined. I don't have the room to discuss the times I was put down due to my cancer.

 

Submitted by: dharma
December 29, 2009

HI everyone thank you my sister's only one son lost month thanksging day we found out he got high risk neuroblastoma (tumor) i heard prayers help so anyone please pray for him his name is Harman Jodh

 

Submitted by: Ashley
June 18, 2009

My screen keeps going away! Anyway, I was saying, my after the cancer experience has been a wild ride. I had I great doctor once, he did a lot of research. Too bad he moved to New York. He was great. Nothing really happens now at my 6 month and annual, it's really like going to my family doctor. It would be great if they would pay attention to our needs and how we have been affected by our past treatments wouldn't it? I know I face problems everyday, and I was only a child when I was effected. Given the source of your information I don't see that it would hurt to give you my email if you wanted to talk more, or not, whatever you decide, its anminick@sbcglobal.net

 

Submitted by: Lou Jones
May 27, 2009

I have survived breast cancer twice since 2000. In both instances, I felt THE CANCER was addressed, but the my needs as a person. I was very pro-active, however, I was not provided with referrals for support services, what to expect next, or health issues that might arise after treatment, including the side effects of radiation. I did ask lots of questions to try and formulate the best plan for me. As a single mom, I continued to work, drive about 100 miles everyday, and take care of my children. I believe assessing the needs of each individual with cancer and available community services should be a part all treatment plans, at a minimum. Daily stress should be minimized so that cancer patients can focus on the healing process. I know from my experience how important a positive attitude is in moving from patient to survivor. Rob, I hope you get that non-profit. It sounds like it will be successful and very helpful in filling the service gaps. Thanks for your dedication and the inspiration it gives to others.

 

Submitted by: jolene
March 22, 2009

I'm my mothers care giver. She has had cancer for six months. I feel sometimes the doctor gives us mixed messages about her prognosis. When she was first diagnosed, and after the surgery, in the beginning my sisters and I were told the kind of cancer she had, had a high success rate. He also had to give mom an iliostomy and put it right in the fold of her stomache. Which makes it very hard to keep a bag on without leaking for any signifigant amount of time! The chemo gets her so sick,and depleats her magneazium, potassium, and calcium. Almost within 12hrs of her treatment. I dont understand why her doctor doesnt seem to care about her as a patient as much as he's concerned about the cancer. I mean he's more concerned about the status of the cancer than the condition of his patient. I feel if he could see what I see my mom going through. The chemo is going to kill her before the cancer does. Also the financial stain on my mom is also a big factor. The ileostomy bags cost 40$ per bag, and because we cant keep one on very long she goes through alot of bags. We need help! I am so frustrated, angry, and at a loss of where to go for help. Peace, Jolene

 

Submitted by: Angela
February 20, 2009

My son was diagnoised with cancer at age 17. He will be done with his chemo in June 2009. He has Medicaid now, but we don't know what's going to happen as far as insurance and pre-existing issues. How will we be able to do his follow ups for the next 5 yrs? He want to get a job as soon as his chemo is over, but what if that insurance won't cover because everything is pre-existing? This is so stressful and over whelming. Do you have any suggestions or could you point us in the right directions? You can Email me at stevenandstacysmom@yahoo.com Thank you so much.

 

Submitted by: Sarah Doran
February 17, 2009

You're awesome Rob, Shauna forwarded me this site. You are an inspiration!!

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