Long-term and late effects of cancer treatment

Not a single word about neurological late effects?

How right you are - Long-term and late effects of cancer treatment really are sometimes almost impossible to find information on, and espeically so the neurological ones....

An opportunity missed....:-(

I was excited when I saw the start of this blog as it is so difficult , as you say, to find information on the late stage effects of cancer treatment. Reading this however you seem to miss the mark in how deverstating and life changing these effects can be. They are long term and usually incurable due to the damage that has been caused by the radiation and/or chemo. Patients can endure multiple surgeries to try and correct the damage done to the bowel and bladder, some suffer from on going heart failure, lymphoedema even though cared for can cause cellulitus that requires a hospital stay with IV antibiotics. Then we have the neurological damage caused by radiation. Women who had breast cancer treatment who can no longer use their arms due to damage to the Bracheal plexus or those who have had pelvic radiation whose legs become weaker and weaker till they can no longer walk.

These side efects can happen from 1 - 30years after treatment and often long after the cancer team have waved the patient goodbye thinking all is cured and the treatment is a great success.. this leaves the patient with no where to turn and little understanding of what is going wrong. Neurologiacal damage usually goes unmentioned pre treatment as is is so rare, patients often struggle with late stage side effects not knowing who to turn to for help ..

I belong to two FB groups PRDA and Radiation induced lumbar plexopathy group plus I read blogs and articles written by those treated for cancer. Many are lucky enough to have no side effects. However the ones that do have stories that would break your heart. Physical and mental pain, side efects that keep then trapped at home, ongoing surgeries and medical visits.

Personally after being treated for uterine cancer, with surgery and radiation, I have lymphoedema in my left leg that has caused cellulitus that has put me in hospital, on one occasion this spread to my heart and caused pericarditis. Fluid was drained from around my heart and I had massive antibiotics IV for a month. 10 years post treatment I started to get neurological problems. 15years post treatment I bacame paralysed, I can no longer walk or weight bear. I have a supra pubic catheter with a valve to urinate so as not to have to transfer on and off the toilet. Every morning I irrigate my bowel with an enema so as to be “safe” for the rest if the day.. this is my life now and it makes me very sad that these side effect are not mentioned. Neurological damage to the lumbar plexus and bracheal plexus are very real.. imagine no longer being able to use your arms or legs. These side efects deserve a place in the list of late stage side effects of cancer treatment. Survival rates are improving and there will be more and more people suffereing years after treatment. What we see at the moment is only the tip of the iceberg.

Well said Helensamia. 

Your point about late-effect sufferers frequently having lost all contact with their specialists and nurses is so very true. For most, neither they nor their GP have any reason to link the appearance of strange symptoms back to their cancer 'cure' and many spend years getting worse and worse before someone realises what is going on. In my case, I endured the best part of 20 years of progressively more and more issues, that started only about 20 years or so after my treatment. For me, there was no cancer specialist or nurse to talk to, and nor was there any reason why I should. In the end, it was only when my GP referred me as a possible case of Motor-Neurone Disease that all became clear.

Do you honestly believe that anyone in the cancer community (cancer industry?) has any idea just how many there are of us who suffer severe very-late consequences? Myself, I don't see how it can have, for the very simple reason that no one appears to be keeping any sort of count.

Right now I am thinking of an article that I found recently, published in 2015 in the World Journal of Gastrointestinal Surgery, and titled 'Pelvic Radiation Therapy - Between Delight and Disaster'.  In its Introduction it said "The last four decades have been a golden era for improving cancer survivorship. Three times as many people survive cancer than 30 years ago. Yet 20% to 30% of cancer survivors report a decline in quality of life secondary to the physical consequences of treatment. A sinister side to cancer research studies is the fixation on survival statistics and prevention of disese recurrence. Patient quality of life has been unacceptably neglected. Patients who receive radiotherapy form a large cohort of patients who report side effects leading to a reduced quality of life."

Just what is it going to take to make the cancer community sit up and realise the scale and impact of late and very-late onset consequences? Can someone please, please, wake up at the back there, and pay attention!

There are people out here hurting, and hurting badly.

• 1996: Radiotherapy and Oncology: Journal of the European Society for Therapeutic Radiology and Oncology published "Acute lumbosacral plexopathy during and after preoperative radiotherapy of rectal adenocarcinoma."

• 2006: International Journal of Radiation Oncology, Biology and Physics published "Cauda equina tolerance to high-dose fractionated irradiation".

• 2012: International Journal of Radiation Oncology, Biology and Physics published "Development of a standardized method for contouring the lumbosacral plexus: a preliminary dosimetric analysis of this organ at risk among 15 patients treated with intensity-modulated radiotherapy for lower gastrointestinal cancers and the incidence of radiation-induced lumbosacral plexopathy".

• 2012: American Academy of Physical Medicine and Rehabilitation, "Radiation Plexopathy"

• 2014: Onco Targets and Therapy published "Lumbosacral plexus delineation, dose distribution, and its correlation with radiation-induced lumbosacral plexopathy in cervical cancer patients".

• 2014: CONTINUUM: Lifelong Learning in Neurology, "Lumbosacral Plexopathy"

THank you Macmillan for providing this blog...it is long overdue. Since I developed neurological damage - RILP - as a result of radiotherapy treatment for cervical cancer 20+ years ago, I have been constantly disappointed by the lack of understanding and willingness to take any action from the charities which take our money and claim to be our advocates. The usual outcome to my requests for updated information to be made available to help those affected by late effects is that they will ask whether this is possible...and then their medical advisors are not willing. They say it is too ‘rare’ and not documented well enough. They do not seek any further evidence however - those suffering the consequences would be only too happy to oblige - and there are many scientific papers available if they care to look. It is as if we are not believed and is very hurtful on top of everything else we are coping with. The medical profession I have encountered are no better - they wave you goodbye and give you no way back if you develop problems further down the line. I happened to meet my original radiation oncologist and he was totally disinterested in my increasing leg paralysis - just shrugged his shoulders and could not tell me why data is not collected on late-effects. When I recently developed breast cancer and refused radiotherapy, my new oncologist said that I ‘had baggage’. The only people who seem to care are other fellow sufferers who have had to set up their own self-help groups out of utter despair at this situation.