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SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?...

SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by DorisElizabeth on Dec 10, 2018 1:36 pm

PLEASE SKIP TO "SUBJECT" FOR QUICK READ
When I joined this great web site I was concerned that my negativity would shine through rather than the fact that I was treated for Stage 2 Cancer of the Cervix in 1985 and am still here to tell the tale.   There is enough worry, concern and down right fear about the disease and the treatment that I did not want to add any more.   I wont go into my story at length buy briefly at age 42 I was diagnosed Cancer of Cervix Stage 2.   Unfortunately, my GP at the time, when I had told him of my symptoms including a watery odourous discharge said, and I shall never forget:  he looked at me and said "That's hygiene, hygiene, hygiene."   Later I mentioned I had blood spotting between periods which I had NEVER had - I told him it keeps starting and stopping and he replied:  It's when it doesn't stop you have to worry.   So no checkup.  Months went by - a new Dr. located near where I worked - she checked my cervix and said, exactly:  "I don't see anything!"   The bleeding continued as I worked,  and in fact when I had a bowel movement, blood came from my vagina.  I waited for months to see a relatively new Gyno. here and upon examination he said: I need to give you a D&C and check you "as soon as possible."   The appointment was made for two month's time!!  I even wrote a note to him but never got word back.  (I should have just gone and sat in Emergency and refused to leave)     So into the hospital 2 months later, and after exam - yes Cancer, and was sent to Toronto General Hospital within the week, stayed for a week and then went to Princess Margaret.
In those days Cancer was still a mystery and so was treatment..   I was told because of my age and the size of the tumour (always compared to fruit - was the size of an apple or small orange) surgery would not be done but radiation and possibly chemo.   I never questioned this.   We never questioned the doctors/oncologists and I think in my case because I was scared out of my mind!  I almost didn't want to know!   One lady who was staying at the Lodge, a teacher, got copies of all her reports etc. but I didn't.   Unfortunately I had a drug reaction from a medication that was given to me to settle my nerves, but that is a whole chapter in itself but did in fact worsen the whole experience ten times.
So the radiation was external, one minute on each of my four sides, for five weeks.  Then the internal radiation inserted into vagina and affixed there with a huge amount of bandage material and I had to lie flat for, I think, it was two to four days.   What I want to mention is that the radiation did not "hurt" and although the insert was extremely uncomfortable, it did not "hurt."   It was all overshadowed by the fact I had the other drug reaction, depression and my husband could not travel the four hours to see me - only twice - due to low income and having to look after other daughter at home.
I was off work a total of five months, mostly due to the emotional problems, but I made it back and life continued not as it was but almost - because I had become anorexic during the experience (nothing to do with the cancer) it took a while and I attended therapy.   The chemo was not given because of my deteriorating mental health.  
So things chugged along I would say for about ten years before I started having bowel pain:  and this is really what I would like to talk about - but thought some background information necessary.  So in 1995 a bowel check and the surgeon (we had no gastroenterologist here at the time) said it was one of the worst cases of radiation (irritation?) he had seen for a long time.   Subsequently, over the years, the bowel pain did not go away and I began to make mad dashes to the bathroom for bowel movements - was working still at the time.   Drs. did not tie the two together - and it seemed it happen when I had eaten, say, raw veggies etc.   To cut a long story short, subsequent years it got worse and I had a colonoscopy and the gastro at that time and my GP said nothing wrong... must be IBS.  So I was put in the IBS-D bucket which basically says it was all in my head.   Many years later when I changed GPs I asked for a copy of my file and read........"she had been told she had significant radiation colitis.... Video endoscope was unable to be manipulated beyond 30 cm because of discomfort but there was a lot of inflammatory disease in the rectum and sigmoid colon in keeping with probably radiation enteritis."   No one told me and I continued to feel I was not being taken seriously. and started questioning myself !   End result:  take Imodium, up to eight a day - forever I guess.
The diagnosis of IBS-D stuck and taking Imodium was recommended time after time, along with mental health therapy! .
SUBJECT
Recently while searching Dr. Google I came across an article  in the world Journal of Gastrointestinal Surgery titled:  PELVIC RADIATION THERAPY: BETWEEN DELIGHT AND DISASTER  (Kirsten AL Morris, Najib Y Haboubi, UK)  and although it is lengthy and I do not comprehend all of its contents, given that I have no medical training, what I got from it was:  their conclusion.,. 
 "A crucial step in management planning for patients with cancer is consideration of the risk-benefit ration... Clinicians are faced with the task of weighing up the benefit of prolonged survival following surgery and radiotherapy vs. the risks of treatment related complications such as Pelvic Radiation Damage.  As the number of cancer survivors continues to increase the long-term outcomes related to health and well being exemplified by those patients who develop PRD, becomes an ever more significant health issue.  However, striving to improve cancer survivor-ship has meant that the recognition and management of treatment associated complications has not been prioritized. Thousands of patients with PRD are poorly managed and denied a service that is tailored to meet their needs. Although it is an uncomfortable notion we must not shy away from latrogenic causes of patient debility.  Effective methods to prevent PRD and an optimal, unified strategy to manage affected patients remain elusive, making PRD a well place focus for future research."
Given my limited knowledge of medical terminology I would totally agree and, of course, would think this is not only applicable to radiation to the pelvis but other areas of the body as well. Later I also found an article by American Association of Medical Dosimetrists titled "Curt or Curse? A Review of long-term side effects from pelvic radiation therapy" by Margaret Sraub.- which is more user-friendly to read.(It should not stop at the end of treatment... need ongoing liaison doctor-patient, sometimes long-term).

So here we have it:  a serious choice.   A huge decision (mine was, if I didn't have treatment I would be dead in 6 to 18 months) whether to endure the treatment and damage done to our bodies at the time or up to thirty years later....      For me personally, although it is unbelievable how the daily diarrhea, mess, reduced nutritional diet, pain and now fecal incontinence has changed my life, I believe it would have helped me physically and mentally to have it explained to me that my medical issues were probably as a result of the radiation, and not, for instance, IBS-D influenced by stress and the brain gut reaction!!   (there also is a gut to brain thing going on I believe).   To be told basically, its all in your head .... well, I knew it was more than that!   My husband had anal cancer four years ago - radiation and chemo - and now has almost fecal incontinence but no Dr. is saying its all in his head!   He now has the choice of putting up with it or a colostomy. At least he is now retired - its impossible to keep a job with this.

So my point is, and I certainly don't want to in any way try to deter anyone from receiving treatment to any area of their body ... is that the medical profession needs to - HAS to - explain fully what the consequences might be from radiation (and maybe chemo) therapy will be.   In those days - 1985 - perhaps it was not known, but as more and more is coming to light that folks do not have some mystery or imagined ailment... but from radiation up to many years ago ... consideration of the side effect should at least be explained, predicted, and hopefully don't happen... but is a possibility and has to be part of the decision.   Overall, of course, thousands if not millions of lives have been saved with treatments and I am not forgetting that.... it's just that recognition of health issues because of the treatments, I think, should be - as the reports say - recognized and help be made available....

Thank you and I hope I have explained  how I feel.. sorry for typos etc. but at 75 my fingers are not as nimble - and may I say from my heart that everyone contributing to this site as patients, family, friends, even helpers with the site ... you are all brave souls and have, are, or will be embarking on a voyage in very rough waters:  may I offer my wishes for calm waters, the strength to get through it all, and getting the help and support you need .... both physical and psychological.                June

Re: SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by Kims1961 on Dec 11, 2018 5:52 am

DorisElizabeth‍ ...I wish I could find a "Hands clapping" emoji for your post.  WELL DONE!!!  I applaud how well you organized your post and outlined your situation so well.  

First - your post is important for many reasons.  I think it's important that we hear all sides - the upbeat positive ones that help encourage us and the ones that outline the difficult realities of cancer as well.  Your post certainly highlights how far we have come in the cancer treatment journey but also not to settle here - we still have more to do.  I often wonder in 10 years as we reflect back - what will be different then from things that are being done now.

Next - most importantly you make such an important point about patient rights and that knowledge is so powerful.  It's our body and our life - we have the right to make some difficult decisions in our treatment.  Curing my cancer at all costs - is not the avenue I want to go down. My husband has a kidney disease and for a few years was on dialysis.  What I appreciated in his care is that he was told very clearly - all the pros/cons of doing dialysis.  He could have selected not to do dialysis, but then he would die and this was explained clearly to him how that would be managed.  When I was diagnosed with cancer last summer, I expected the same "philosophy".  I wanted to know what my choices were and the consequences of doing treatment and not.   This was not always easy.  There can be a "paternalistic" view  with some professionals ( and thankfully not many in my situation) of "shielding" me of the "bad news" if I didn't do treatments.  All I asked was to have all of the information so I can make well informed decisions and also know of the potential side effects.  

I won't get into my rant about how care for women can sometimes be different than for men but I feel optimistic we are making change there too. Too often I hear of women's health issues being disregarded as "mental health " ones or not taken seriously.

On the role of mental health - that too is slowly making it's way into cancer care and how important it is to talk to us about our mental health.  The entire experience/ side effects of the medications can significantly impact our mental health and my hope is that we are working towards reducing the stigma of talking about it and getting help to manage it.

So...sorry a long response to your very excellent post.  Thank you so much for posting - it reminds us how important it is to continue to get all of our medical records , advocate for ourselves and to ask questions of our medical team .

Kim

Re: SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by DorisElizabeth on Dec 11, 2018 8:27 am

Thank you Kim.. 

Re: SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by Birdwoman on Dec 11, 2018 9:33 am

Hi DorisElizabeth‍ thank you for sharing your story. I am so sorry to hear about all the side effects that radiation has caused and hope that you can find relief somehow. I had serous (aggressive) uterine uterine cancer in 2016, 3 chemos, 25 radiation treatments to the pelvic area and 3 more chemos (I could only manage 2). I was very sick by the end with almost no white blood cells left. However, I am still alive, and for that I am very grateful.
Like you, I was not told of possible side effects of my treatments. The focus was - this is very serious, we have to do all we can to save you- I was terrified and did everything to the letter. I did end up with lots of diarrhea and the effects lasted for a while. I saw a different oncologist at one of my checkups (not the angel who usually sees me!) and he said you will probably be living with diarrhea forever, not a big deal. I said what??? that means I am not getting the nutrients out of my food. Later I was told that our normal intestines have lots of curves and wrinkles so that the food passes slowly and has lots of time to be properly digested. After radiation the intestines are much more smoothed out, and the food passes through more quickly.
My bowels were more normal after about a year, but now they are getting worse again, and it's like they can't wait to get rid of the stuff. And I see undigested food in there too sometimes. I eat yogurt and tried probiotics and try to chew and chew before swallowing to give my bowels a better chance.
My new family doctor (my previous wonderful doctor passed away a year ago) couldn't care less about any of my symptoms, my worst being arthritis in my back and hip which I am convinced were made much worse by chemo and radiation. I still have neuropathy in my feet, foot cramps, nausea a few times a day and bone/joint pain. He told me I was depressed!
Thank you for those articles. I think it is very important for our mental health to know that we are suffering from side effects and not delusions. And if anyone sees any articles on ARTHRITIS MADE WORSE BY RADIATION or CHEMO? I would love to know.
Wishing you and your husband continued strength and courage and thank you again for your insights. All the best!


 

Re: SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by DorisElizabeth on Dec 11, 2018 10:22 am

Thank you Birdwoman‍ ...I hesitated to put up my comment, and am sorry to hear of what you have been through and still are.  People think of occasional  diarrhea such as after spicy meal, flu etc. But to have it on an almost daily basis with all  that goes with it...can make a person almost housebound. Thankfully there are many products for urine incontinence these days, but nothing for fecal incontinence... I have spent hours if not days checking and communicating with companies that make these products...none for diarrhea. I am concerned if I ever have to go into a Seniors Home, as no one will clean me five times a day on tbe bad days!   Yes I will check and I think one if the articles, or one I read recently, does mention radiation danage to bones and anything else that is radiated in the area of the tumour.  Now it's convincing our GP of this and getting some pain relief.  Take care, J.

Re: SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by sallygirl63 on Dec 12, 2018 12:30 pm

Thank you for the posting. While reading I felt and visualized the path you were going through and the side effects that are long life lasting. It is true in medicine they weight the pros and cons when providing a treatment. If they explained to the patient what he or she will endure along the path, the patient will not have so many unknown answers. I had also pelvic radiation for colon cancer and I had 28 sessions of radio and I am dealing with the side effects but I am happy that I am alive.
Thank you again for the posting and wishing you all the best.

Re: SIDE EFFECTS ARTICLES: Pelvic radiation therapy Between delight and disaster - Cure or Curse?

Posted by Ttjia on Mar 1, 2019 7:03 am

Hi all I just came across this discussion very good topic, since I finished radiation pelvic area I have been experiencing similar symptoms. They are not pleasant and can be embarrassing, if I would have known of the long term consequences of this treatment might not have been so eager to try it but I i guess the alternative would have been worse.. It is good to know I am not alone trying to handle this problem but also sorry others do have to live with it. Maybe if we pray hard enough they will come up with some sort of a solution. That is even by any chance it is on researchers radar. I must say after 25 years without pads am back wearing them for safety sake.. Just putting my two cents in if anyone is still posting on this site. 
Ttjia