Thanks for lending me your listening ears.
I had non-hodgkins lymphoma at 12 years of age - treated with chemo and radiation to head and upper body.
Recently nearly died from an enormous brain tumour, atypical meningioma, 35 years after radiation exposure. Had no idea that radiation treatment could result in secondary tumours. Studies report that 20% or more of paediatric patients confront secondary tumours at 30 years from cranial irradation.
Also had skin cancers despite not being a sun seeker. Studies report a 40-fold increased risk for skin cancer for adult survivors of childhood cancer under the age of 35 years who were treated with radiation. Didn't know about this either.
Anyone else out there that suffered through lymphoma or leukemia as a child and then had to experience brain tumours and/or skin cancers in adulthood? Were you ever informed of the high risk of secondary tumours/cancers over time? Have you been offered prolonged surveillance including brain imaging and skin examination?
I hope that you have been provided the follow-up care you deserve after primary therapy. Unfortunately, I did not receive this care.
Keen to hear about your experience.
I'm so sorry you have experienced all these health problems.
I was diagnosed with Hodgkin's Lymphoma when I was 22. I underwent chemotherapy and radiotherapy. I have been in remission ever since. However, since completing treatment, I have experienced health issues including hypothyroidism, a benign pituitary tumour, a benign skin tumour and, more recently, breast cancer.
I am fortunate to have undergone treatment at Peter Mac. I am now on longterm follow up with their Late Effects Clinic. I highly recommend getting in touch with this service especially if you have undergone cancer treatment as a child or as a young adult (18-25) as this is their area of specialty. You don't need to have undergone treatment at Peter Mac to access this clinic. They can review your past treatment, identify possible late effects, formulate a follow up plan and make referrals to other health care professionals. For example, I commenced breast cancer surveillance before I turned 30. This is done through the breast clinic at Peter Mac (they provide screening for people who are high risk for developing breast cancer). Because I have been able to access breast MRIs through this clinic, my breast cancer was detected early. I underwent surgery but have not needed chemotherapy (thank goodness!).
If you are looking for further resources on late effects and follow up, I recommend Peter Mac's website (look for the Australian Cancer Survivorship Centre), Canteen and The Leukaemia Foundation.
Wishing you all the best,
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