July 2020
Hi Sue6 Im sorry to hear of your battle with your side effects of your radiation. The calcification of your ureter is so damaging and your surgery sounds like a mess. The pain your are enduring must be so challenging for you. All this damage is caused by the effects of the radiation you received.. I do feel for you and hope you begin to improve as time goes on. Its debatable about the radiation treatment and if it is worth it in the end.? As I said in earlier post I am on waiting list for surgery to repair my fractured pelvis caused by the radiation treatment I had two years ago. The COVID-19 has delayed the elective surgery list. Well things have changed in my world since than. Firstly, I have noticed my pain level reducing in past few months. I can walk my little dog now without lots of pain. I have been off pain relief for most of that time as didn't need it much. Recently I had PET scan for three monthly cancer screen. The good news from that scan is my fractures in sacrum/pelvis are showing signs of healing. The bad news is I have lung cancer. They did a lung biopsy and identified primary adenocarcinoma in right lung. I have been referred to thoracic surgeon as they say it is operable and curable as it is early stage lung cancer, they think? The lung lesion is very small, I am having no symptoms. How do I feel? Initially I felt very angry and upset with the oncologist and than with my body. I don't know what my future is, AGAIN? I should know more after I see Lung Specialist on 3rd Aug. Take care Sue6 I am sending lots of positive vibes your way. Cheers Maggiemoo
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June 2020
Hi Eddymu Thanks for your reply. I am going ok, still in pain while weight bearing. Waiting on surgery. Found out today it will be in mid July. I will keep you posted. Thanks for your concerns. Maggiemoo
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June 2020
Hi sch Thank you for your reply. The pelvic fractures I have are a direct result of the radiation I received. The radiation treatment has caused my bones to become brittle and fracture. The orthopedic specialist describes the radiation effects as rotting my bones, my bones are decaying from the effects of the radiation , he told me.. I wish I didn't have the radiation now I know what damage it can do but its too late. the damage is done.. I was not informed about this effect of radiation before I had it. I am having the pelvic stabilization surgery in July.. Thanks for your concerns, I will keep you posted how I go. Maggiemoo.
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June 2020
Hi Jenny GI Thank you for your reply. I am interested in trying a Naturopath now you say you have received help from. I live in Canberra, there may be one here? I will check it out. Thanks. Maggiemoo
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June 2020
2 Kudos
Hi shc Thank you for your kind words. I have decided to have surgery after I got a second opinion from another Orthopedic specialist who had a good look at my scans and identified the severity of my pelvic fractures. He knows the Specialist who is doing my pelvic stabilization surgery and holds him in very high regard professionally. I am on the waiting list for elective surgery but that could change once my Specialist receives the titanium rods he is having made to drill into my pelvis. It could be as early as July or sooner. In hindsight I wish I didn't have the Radiation treatment or maybe had less treatments. My Oncologist said after the fractures were found in my sacrum that I did have large amounts of Radiation , 28 treatments, the maximum rounds as I was tolerating it so well at the time.. My life has changed dramatically since the cancer treatment. I have less energy, have sleep issues, and now am in constant pain in my pelvis which further disturbs my sleep at night , and the worst is my mobility is affected. I can only walk short distances now and in constant pain its worse when I walk or weight bear longer The surgery has a long recovery period , 6 - 8 weeks on my back in bed. And than I hope to be able to walk again. But they cant guarantee I will be free of pain..??? I will keep you posted of my surgery date when I get it. bye for now Maggiemoo
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April 2020
HI Lindsay Thanks for your reply. This Lutate Radiotherapy treatment is new to me. It sounds like it is very severe on the body knocking your blood count and bone marrow so quickly. Good the 2nd round is postpones for while may give you time to repair your body from the 1st round. I agree, the treatment can be more damaging than the disease.. Take care.
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April 2020
1 Kudo
Hi Katekat Thanks for your reply. I am still here waiting for surgery and may have to wait a few months possibly six months due to the COVID-19, they stopped elective surgery. The pain in my hip and right leg is manageable with regular pain relief. I cant walk very far so am living a very sedentary life .. but so is everyone else these days advised to stay at home to reduce the spread of the coronavisus. cheers Maggiemoo
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March 2020
Hi Rhonda Gee you have had a doing with Radiotherapy , burns after 2 weeks, and than continued for 6 weeks must have been horrendous for you.. the sensory neuropathy of your legs must have been frightening as well as very painful , and than battling ongoing bowel issues.. You certainly have a lot to deal with.. the damage to your nerves is shocking and I hope will improve in time. I was screened for peripheral neuropathy , tingling to my hands and feet during treatment , it did appear at one stage and they reduced the dose . My bone weakness didn't show until 15 months after treatment but now is ongoing pain. Radiation is very ruthless in its targeting of cancer cells and in the process destroys good cells, I guess we are the minority whom have gross adverse effects.. Yah, I agree I too would not have Radiotherapy again if my cancer comes back.. It has debilitated me enough.. take care. may I say give cannabis oil a go as it is proven to reduce nerve pain. It did work for me during my chemotherapy treatment when I had ongoing nerve pain, once I started on the oils the pain settled down and I could sleep. Hope you can get some relief soon.
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March 2020
Hi Lyana Thank you for your message of hope and encouragement.. I am on the waiting list for elective surgery but I guess now that will be delayed due to our World pandemic which does take first preference.. I have done little research on this surgery as can't find anyone who has had this procedure to stabilize the pelvis. My Specialist is a Professor and informs me I wont find any research as he is the only one who is performing this surgery, he has done a few .. They have been a success, recovery with less pain and good mobility..
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March 2020
1 Kudo
Hi Rhonda Sorry to hear you are still battling with your mobility and pain control. I do feel your nerve pain is possible related to what I am experiencing now "insufficient fractures" of your pelvis from the radiation you received.. I received 28 sessions of radiation to whole of my pelvis over period of 6 weeks. It was 4 sessions per week. The Oncologist said I received the maximum dose.. This plan was in place to to treat lymph glands in my leg groins as well as the pelvic area cause I had no lymph glands removed during my total hysterectomy surgery. It is good your cancer has not come back. Do you still need regular checks? I do.
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