I am looking for childhood cancer survivors

7 Posts | Page(s): 1 

I am looking for childhood cancer survivors

by Christies1977 on Fri Jun 30, 2017 09:59 PM

Quote | Reply

Hi There, I'm new to this site and I'm looking to make contact with any childhood cancer survivors who were treated in the 1970s or who were treated more than 30 years ago.

I was diagnosed and treated for Hodgkin's Lymphoma in 1977 in the UK and would like to correspond with any long term childhood cancer survivors, regardless of the type of cancer.

RE: I am looking for childhood cancer survivors

by Lacash on Wed Dec 06, 2017 04:49 AM

Quote | Reply

On Jun 30, 2017 9:59 PM Christies1977 wrote:

Hi There, I'm new to this site and I'm looking to make contact with any childhood cancer survivors who were treated in the 1970s or who were treated more than 30 years ago.

I was diagnosed and treated for Hodgkin's Lymphoma in 1977 in the UK and would like to correspond with any long term childhood cancer survivors, regardless of the type of cancer.

Hi there, I hope you are still interested in talking with other survivors as I have just discovered this site. I too had Hodgkin’s Disease in 1976, I was 18. I had stage 2a and was treated with radiation. I’m curious if yours was treated with radiation and if you have health issues from it.

RE: I am looking for childhood cancer survivors

by derenzo on Thu Oct 25, 2018 02:52 PM

Quote | Reply

I too had Hodgkins stage 2A in 1980, I was also treated with radiation (4500 rads) I have had numerous health issues from the radiation. What are the issues you are facing? AS you are 4 years ahead of me!

RE: I am looking for childhood cancer survivors

by Lacash on Thu Oct 25, 2018 04:32 PM

Quote | Reply
I developed thyroid cancer and also kidney cancer. No treatments were required but I did have to have surgery for both. My lung collapsed six times and again had to have surgery to repair it. I had a total hysterectomy which was partially due to my ovaries being moved behind my uterus so they could radiate the groin area. Over the years everything just attached together. I had 3 unsuccessful pregnancies and no children. The latest incident was a massive heart attack and I had a triple bypass. I always knew developing thyroid cancer was a possibility, as well as breast cancer, which I haven’t had, I was not aware that heart disease was probable, so that was a shock! Overall, I’m okay with everything that has happened because I know I was fortunate to survive the Hodgkin’s. I’m happy the radiation therapy has improved! Have you had any related issues?

RE: I am looking for childhood cancer survivors

by derenzo on Thu Oct 25, 2018 06:06 PM

Quote | Reply

I have been fortunate to not develop any other cancers! I have had my pericardium removed, 2 stents in my heart one in my shoulder to restore blood flow to my arm, stomach surgery to open the duodenum, I have my esophagus stretched so I can swallow solid food. Lung function is down to 57%, substantial muscular atrophy. I keep wondereing what will happen next! I do feel fortunate to have survived for 38 years though! I was told I wouldn't have children either, I have been blessed with 3! Surviving the treatments is harder then surviving the desise was!

RE: I am looking for childhood cancer survivors

by Lacash on Thu Oct 25, 2018 06:36 PM

Quote | Reply
Wow! You have been through the ringer too! I’m so sorry. I turned 60 this year so it has been 42 years for me but I’m like you and wonder what will happen next. I rebounded really well after each incident and would go 5 to 10 years between them but the heart attack has been way more difficult. After the bypass my lungs would not function, I spent 10 days in ICU and even now 1.5 years after I still have trouble breathing. You are right the cure was worse than the disease. I think the doctors should study us so they can better help other survivors. My doctor had no idea about the heart disease. She was great at watching and screening for breast cancer but even though I complained of chest pain and my numbers were bad she never thought I was a risk. One thing for sure is we have to take care of ourselves. Hope you stay well!

RE: I am looking for childhood cancer survivors

by since1972 on Fri Feb 14, 2020 11:41 PM

Quote | Reply

On Oct 25, 2018 6:36 PM Lacash wrote:

Wow! You have been through the ringer too! I’m so sorry. I turned 60 this year so it has been 42 years for me but I’m like you and wonder what will happen next. I rebounded really well after each incident and would go 5 to 10 years between them but the heart attack has been way more difficult. After the bypass my lungs would not function, I spent 10 days in ICU and even now 1.5 years after I still have trouble breathing. You are right the cure was worse than the disease. I think the doctors should study us so they can better help other survivors. My doctor had no idea about the heart disease. She was great at watching and screening for breast cancer but even though I complained of chest pain and my numbers were bad she never thought I was a risk. One thing for sure is we have to take care of ourselves. Hope you stay well!

Hi everyone! Not sure who is still checking these posts, but I wanted you all to know that our organization, "Hodgkin's International," is holding our first (ever!) gathering and conference for long-term survivors of Hodgkin's this June in Boston, MA. It's a chance for many of us to meet for the first time and also learn about the late effects of earlier cancer treatments. Our keynote speaker is Dr. Michael Stubblefield, who is well known for his work on Radiation Fibrosis. Most of us have been dealing with multiple health issues, decades after we were pronounced "cured." Hodgkin's International is also developing a Public Service Campaign about Late Effects, so that survivors know exactly what they are dealing with and what to do. I hope anyone reading this will consider joining us in June. Please let me know if I can help in any way. I've been at this for a LONG time. I have been a Hodgkin's survivor for 48 years- diagnosed in 1972.

7 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.