20+ Year Survivor Would Like To Hear From Other Long Term Survivors

I am a 20+ year survivor of Hodgkin’s Disease, radiation and chemo, and would like to hear from other long term survivors, radiation and chemo for any type of cancer, concerning any ongoing or new health problems. I have been told that I am a among some of the oldest survivors of treatment for cancer and that they have little data as to what to expect as far as my ongoing health and the effects my treatment will have on my future health. Perhaps we can compare notes and information. Thanks.

I just read your request to find other long term Hodgkin Survivors. I am a 19 year survivor of Hodgkins. My original cancers (together) were Hodgkins Stage IIA and thyroid. Since then, I have had basal cell skin cancer, breast cancer, lung cancer and vulvar cancer. But, all of those were caught in early stages and honestly, if you saw me, you would be surprised I have ever been sick. My 82 year old mother says I'm the healthiest looking sick person she's ever seen. There are many long term side effects including heart issues, neuropathy, asthma & GERD. You are welcome to email me directly for more information. I have found a great source for long term Hodgkin Surivors you can contact, just let me know. You are not alone!!!

I was treated for Hodgkin's in 1984 when I was 14 years old. It's been so long that I'm not sure in what stage it was diagnosed, but I'm certain that it was an early stage. They gave me eight rounds of chemo-therapy, which wasn't even enough to go totally bald, and thirty-days of radiation. Since the conclusion of the treatment, I have had no reoccurrence, and no subsequent forms of cancer. Sometime around my mid-twenties, I developed gerd and a condition called Barrett's esophagus, but it seems to be unrelated the Hodgkin’s and is kept under control with a prescription. Other than the Gerd, I have remained completely healthy. The only ill effect that I have had is occasional periods of anxiety that I may be living on borrowed time, but I try not dwell on it and just focus on taking care of myself.

I did smoke for several years when I was younger. Now, I'm worried that I may have set myself up for Lung Cancer. But there is nothing I can do about it now. I've become an avid runner and cyclist, hoping that will help heal my lungs.

Hi,

I just had my 16 year check-up today and I'm clear, thank goodness. My oncologist and I joke that I will keep coming until one of us retires! I had two occurences, the first when I was 24 (radiation) and the second when I was 27 (chemo). My doctor has told me that once I passed the 10 year mark, the likelihood of reoccurence pretty well goes back to national averages. The things they are now looking for are long-term repercussions of the treatments themselves. I was told that the biggest issue with chemo is the possibility of leukemia and that this is most likely to occur 5 - 10 years after treatment, so I'm hopefully past that. However, today I was told that my chance of breast cancer is much higher and my chance of colonic cancer is also increased, as I had two courses of radiation, incl the abdomen. Doesn't seen fair that the cure for one cancer can cause another type to develop.

Anyway, I am interested in hearing from other women who are now wondering if breast cancer is the next big health hurdle, and if so, what they are doing about it, if anything.

On a positive note, everything that I went through 2 decades ago almost feels like it was from another life altogether. I don't consider myself to be in remission - at this point I'm calling myself cured. I hope I've kept some of the wisdom that I gained from surviving the ordeal but I am once again at the point where living to a ripe old age feels like my entitlement, just like those who have not faced a life-threatening illness.

I am a 23 yr survivor of Hodkins IB. Radiation therapy no recurrences. I have scar tissue surrounding the lungs from the radiation and for many years I had bronchitis and pneumonia a couple times per year. I moved down in the hills away from the city 4 years ago and havent had an episode of bronchits or pneumonia since. I was told at the time that I may not be able to have children, they just didnt know at that time if radiation in the chest would effect the ovaries etc. Well, I was blessed with 4 beautiful children and almost healthy. Will get back to that. Five years after the laparotomy was performed (during the testing phases before therapy) scar tissue from the surgery area grew and tightened around my large intestine causing the removal of 8" of gangrenous intestine. Can't say this was directly related to the Hodkins. Nine years ago I had cervical cancer with removal of cervix no therapy. Quick and easy! I feel good, feel healthy... always tire more easily than others. The scary thing is, I felt good then, just before being diagnosed with Hodgkins.

Now, back to 'almost healthy': My 20 yr old daughter was just diagnosed with Hodgkins IIIB. Did you just hear that shotgun going off? I do, all the time... and then the deafaning silence that follows, and the childlike whisper 'Kayti has cancer'. Do you hear the sledgehammer pounding of my heart? I do, all the time. I can feel it too... it hurts.

I was diagnosed with Hodgkins in the late spring of 1984 when I was 22. So 22.5 years ago. I was determined to most likely be Stage I but location of the affected nodes in lower neck/upper chest possibly could have made it Stage II. Never had any itching. I went through the old lymphangiogram and catscan to stage. I was only given intense radiation, had no chemo. 4.5 weeks daily to the neck and chest, and then they did additional four weeks to abdominal area as a preventative measure. I have not had any additional occurances. So labeled as in remission too I guess, but I prefer to consider it cured! 

I have not had any other cancer diagnosis up to this time. I had my first colonoscopy by 40 due to family history as well, couple of polyps found. Have that now every three years. I've had annual mammograms pretty much for the past 10 years and have been clear thus far.  I haven't seen an oncologist since my 10 year anniversary, but yearly see my family doctor and have full bloodwork done and a chest x-ray every other year or three years. My thyroid is off a tad and I take a small dose of synthroid/levrothyroxin daily. I was never able to get pregnant, though things "appeared to be normal" so not sure if anything there was due to the radiation. They did use ovary blocks when they did my abdominal area. Only other health issue I have is occasional ocular migraines and struggle with 25 pounds I don't like. One thing that was recommended to me was to see a dermatologist for a baseline complete check by age 40, due to potential changes from radiation, and I haven't done that but will be seeing one in the next few weeks.  Breast cancer just seems to be my biggest concern and worry, but will continue with the exams and being as proactive as I can.  I'm thankful for these past 20+ years. Having had been born in another time, I wouldn't have had most of them. It would be nice to hear from others, compare notes and see what other studies or research has been done to date.

     I to am a 20+ survivor foloowing chemo and radiatuin treatment.   Unfortunately, I was just diagnosed with Stage IV stomach cancer due to the radiation treatment.  I went to a hematologist/oncologist every 6 months for the last 20+ years, and still nothing was found.  I developed stomach discomfort this past August and I decided to see a GI MD.  My blood was normal for all these years as well as my cat scans etc.  I was shocked.  A simple endoscopy showed what they thought to be an ulcer but turned out to be Stage IV stomach cancer.  Although it is not the standard of care for we the survivors, I STRONGLY RECOMMEND THAT you insist on taking a preventive endoscopy even if you don't have symptoms.  It's a simple test and had I known about the possibility of developing  this secondary cancer,  or had it been recommended, I would have done it a long while ago,and saved my life.

Hi,  I might just win the prize here.  I had HD 32 years ago!  At that time I had massive doses of radiation to the neck and chest area.  I have been cancer free since that time with no severe side effects.  I had my thyroid removed three years ago due to the fact that it just stopped functioning and I had several nodules.  My doctor recently suggested that I go to an ENT for a scan and possible dialation of my esophagus.   I have some swallowing problems which he thinks is due to scar tissue.  Other than that, I am about to celebrate my 51st birthday, have two beautiful daughters, a husband (of 32 years....We had just married when I was diagnosed!) and teach a class of rowdy fifth graders every day.  I live a very full, active life and expect to keep it up for the next 50 years!  Glad I found this site and look forward to talking to "all ya'll" (I'm from Louisiana) again.

 

On 11/23/2006 Tamik wrote:

I am a 23 yr survivor of Hodkins IB. Radiation therapy no recurrences. I have scar tissue surrounding the lungs from the radiation and for many years I had bronchitis and pneumonia a couple times per year. I moved down in the hills away from the city 4 years ago and havent had an episode of bronchits or pneumonia since. I was told at the time that I may not be able to have children, they just didnt know at that time if radiation in the chest would effect the ovaries etc. Well, I was blessed with 4 beautiful children and almost healthy. Will get back to that. Five years after the laparotomy was performed (during the testing phases before therapy) scar tissue from the surgery area grew and tightened around my large intestine causing the removal of 8" of gangrenous intestine. Can't say this was directly related to the Hodkins. Nine years ago I had cervical cancer with removal of cervix no therapy. Quick and easy! I feel good, feel healthy... always tire more easily than others. The scary thing is, I felt good then, just before being diagnosed with Hodgkins. Now, back to 'almost healthy': My 20 yr old daughter was just diagnosed with Hodgkins IIIB. Did you just hear that shotgun going off? I do, all the time... and then the deafaning silence that follows, and the childlike whisper 'Kayti has cancer'. Do you hear the sledgehammer pounding of my heart? I do, all the time. I can feel it too... it hurts.

Don't blame yourself for what is happening to your daughter.  I know it is always more scary to be the mother of a sick child, but remember what brought you through your times of need.  I have been a survivor of Hodgkin's disease for 10 years.  Whenever I hear my daughter is experiencing some of the same physical symptoms I had leading up to my final diagnosis of lymphoma, I panic.  But I know it is not something I did to cause it.  Also, I know that in this day and age we live in our children will be subjected to much earlier (THANK GOD!!!!!) diagnoses than we were able to obtain, therefore giving them a much better chance of survival.  Remember you have survived so long and so will your child.

 

 

On 1/5/2007 Becca12056 wrote:

Hi,  I might just win the prize here.  I had HD 32 years ago!  At that time I had massive doses of radiation to the neck and chest area.  I have been cancer free since that time with no severe side effects.  I had my thyroid removed three years ago due to the fact that it just stopped functioning and I had several nodules.  My doctor recently suggested that I go to an ENT for a scan and possible dialation of my esophagus.   I have some swallowing problems which he thinks is due to scar tissue.  Other than that, I am about to celebrate my 51st birthday, have two beautiful daughters, a husband (of 32 years....We had just married when I was diagnosed!) and teach a class of rowdy fifth graders every day.  I live a very full, active life and expect to keep it up for the next 50 years!  Glad I found this site and look forward to talking to "all ya'll" (I'm from Louisiana) again.

I am a month away from becoming an 11 year Hodgkin’s survivor. I was diagnosed at the age of 14 and I’m now about to turn 26. My treatment included Chemo and radiation. I’m writing because your story has really given me hope I just Had twin Boys (with no medical help) and I’m looking forward to enjoying many years with them. I have not had any relapses since my treatment; the only thing is that I have to take synthroid once a day. I also get a little agitated when running due to one of the chemo’s that affected my lungs a little. I don’t tend to get sick any more than the usual person and hope that continues. But recently I visited a new oncologist for my yearly check up and left a little depressed with all the side effects he told me could affect me, especially the leukemia. Anyways I hope I have also been an inspiration to someone even though I’m not in the 20 year mark yet.