Possible long term effects of radiation

NoTimeForCancer · August 2014

All, this is from the UK and talks about long tern effects of radiation therapy for cervical cancer patients. Since most of us have had radiation for our uterine/endometrial cancers, I wanted to pass along the information as it could be applicable to us as well. A friend of mine has had a lot of issues and in her searches found that most information on long term effects is out of the UK.

I don't put this here to scare our newer members, please do what you need to do to cure this disease, but to make others aware that what they may have (or may experience) is result of all our treatment. Sometimes I think doctors don't care too much about the long term side effects or pain we have, we are supposed to be grateful we are NED.

I remember when my radiologist showed me the device they use for internal radiation for cervical cancer patients I cried inside. It looked medieval and it was terrifying.

http://www.cancerresearchuk.org/cancer-help/type/cervical-cancer/treatment/radiotherapy/cervical-cancer-radiotherapy-side-effects

Cervical cancer radiotherapy side effects

Bladder and bowel side effects
You may have some permanent effects from your treatment. This doesn't happen to everyone, but it isn't possible to tell before you are treated who will have them and who won't.

We don't know exactly how many women have long term effects. Treatment has altered over the years and we are always looking back with this type of statistic, so often the available figures don't relate to the way people are treated now. In March 2006, NICE (the National Institute of Health and Clinical Excellence) published guidance on the use of high dose rate internal radiotherapy. They reviewed the likelihood of side effects as part of their guidance. One large study followed the progress of women for 8 years after their treatment. The study reported that as many as 1 in 3 women (35%) had a bowel or bladder side effect after high dose rate treatment. In nearly all these women, the side effect was relatively mild. There were more severe problems in about 7 out of every 100 women treated (7%). Over all the studies NICE looked at, there were bladder side effects in between 4 and 24 out of every 100 women (4% and 24%). And there were rectal (back passage)
side effects in between 4 and 20 out of every 100 women (4% and 20%).

After any type of radiotherapy for cancer of the cervix, you may find that you have to pass urine more often. The treatment can make the bladder less elastic. So it won't stretch as far and feels full sooner. You may also be more prone to urine infections.

You may have loose, or more frequent, bowel motions. This is because the radiotherapy irritates the lining of the bowel. If you are troubled by these side effects, tell your doctor. You may be able to take medicine to firm up your bowel motions and make them less frequent.

In rare cases, radiotherapy can cause constipation with pain, sickness and bloating. You should contact your doctor if you have these symptoms. Your doctor will need to check your bowel for a possible blockage.

Occasionally, radiotherapy to the pelvis can cause bleeding, which will show up in your bowel movements or urine. This is usually caused by an increased growth of small blood vessels in that area after the treatment. If you notice this, tell your doctor. Your doctor may call this problem telangiectasia (pronounced teel-an-gee-ek-tay-zee-a).

Kaleena · August 2014

Long term effect

Hi.

Thanks for posting this. Well I can say that I have just experienced one of the long term effects from brachytherapy. Although I do have a 6 cm soft tissue mass which they thought was causing my hydrouteronephrosis, once the urologist put my stent in she indicated that the blockages to my left ureter was near my bladder and was probably due from my radiation. In October, it will be 9 years from my original diagnosis. And it was 8 years ago that I had brachytherapy.

Also, my radialologist/oncologist would not give me pelvic radiation has he said for me that risks of getting radiation outweighed the risk for not doing it due to how much scarring that I had already.

Kathy

dkdrew · August 2014

meet with my radiologist Sept 3

thanks for the information. I just finished my 6th round of chemo and now I'm going to meet with the radiologist this wednesday to set up for three rounds of vaginal brachytherapy. then the end of Sept. I go to have my port removed. I go back for my first three month check- up in Nov. The doctor said I will have to have another CAT scan done at that time because they did see something on my lung and liver in the last scan. I'm hoping that will be all clear and I can start the road to recovery.

Kathy

ConnieSW · August 2014

dkdrew said:
meet with my radiologist Sept 3
thanks for the information. I just finished my 6th round of chemo and now I'm going to meet with the radiologist this wednesday to set up for three rounds of vaginal brachytherapy. then the end of Sept. I go to have my port removed. I go back for my first three month check- up in Nov. The doctor said I will have to have another CAT scan done at that time because they did see something on my lung and liver in the last scan. I'm hoping that will be all clear and I can start the road to recovery.

Kathy

I'm puzzled

Wouldn't you think they'd want to leave the port in till after your f/u scan?

debrajo · August 2014

ConnieSW said:
I'm puzzled
Wouldn't you think they'd want to leave the port in till after your f/u scan?

Puzzled, too!

I never got the option for a port, but if I had I wouldn't let them take it out for at least a year of being ned. Is the port prone to infection or is it bothering you? Please think about waiting til you get your scans. Best, Debrajo

Kaleena · August 2014

dkdrew said:
meet with my radiologist Sept 3
thanks for the information. I just finished my 6th round of chemo and now I'm going to meet with the radiologist this wednesday to set up for three rounds of vaginal brachytherapy. then the end of Sept. I go to have my port removed. I go back for my first three month check- up in Nov. The doctor said I will have to have another CAT scan done at that time because they did see something on my lung and liver in the last scan. I'm hoping that will be all clear and I can start the road to recovery.

Kathy

Port

Kathy

If they did see something, I am curious as to why they would take your port out prior to your CT scan? I was diagnosed with endometrial adenocarcinoma (Grade 2, Stage iiia) and I did the CHemo/Gemzar and 3 brachytherapies. I had my port in for all the treatments and they wouldn't remove it until I had a few clean scans. Then they still wouldn't remove it. I ended up having my port in for 6 years I would have to go monthly to have it flushed. I finally did have it removed though.

My best to you,

Kathy

dkdrew · August 2014

dkdrew said:
meet with my radiologist Sept 3
thanks for the information. I just finished my 6th round of chemo and now I'm going to meet with the radiologist this wednesday to set up for three rounds of vaginal brachytherapy. then the end of Sept. I go to have my port removed. I go back for my first three month check- up in Nov. The doctor said I will have to have another CAT scan done at that time because they did see something on my lung and liver in the last scan. I'm hoping that will be all clear and I can start the road to recovery.

Kathy

port out

Wow. I hadn't thought of all those possiblities. I'm just so ready to have my life back to normal. you've all given me some food for thought.

joannewtta · August 2014

dkdrew said:
port out
Wow. I hadn't thought of all those possiblities. I'm just so ready to have my life back to normal. you've all given me some food for thought.

port out

With tongue in cheek I don't think life will ever be "normal" again. I was diagnosed 6/13 and had 18 chemos and 4brachyatherapies finishing on 2/13/14. I wanted port out in March but my oncologist wants to wait for at least one year from finishing chemo. CT SCAN and exams show Ned but he reminds me what a nasty cancer this is. I get port flush once a month it's a good reason to say hi to my chemo nurses. I am fortunate that I only live about 3 or 4 miles from my cancer center.

Kathy I have a question for you. Your internal radiation treatments were several years ago and you talk about bladder and bowel issues. I have some diarrhea issues but mostly I just have to pee all the time even when it's not much. Wait too long and we have leakage. Have your issues got progressively worse over the years or just remained a pain in t he neck.

I'm west coast from Vancouver, Washington. Any others from this area.

Thanks to everyone for the posts

ConnieSW · August 2014

Kaleena said:
Port
Kathy

If they did see something, I am curious as to why they would take your port out prior to your CT scan? I was diagnosed with endometrial adenocarcinoma (Grade 2, Stage iiia) and I did the CHemo/Gemzar and 3 brachytherapies. I had my port in for all the treatments and they wouldn't remove it until I had a few clean scans. Then they still wouldn't remove it. I ended up having my port in for 6 years I would have to go monthly to have it flushed. I finally did have it removed though.

My best to you,

Kathy

Port

I had mine for a year. My doc was ready to pull it out before I was. It was a kind of talisman for me and I superstitiously felt I was tempting the fates by getting rid of it. i didn't tell him that but the nurses understood and told me to wait till I was ready so I did. I know I'm still far from being out of the woods so if I need it again, I'll just have to get another.

Kaleena · August 2014

joannewtta said:
port out
With tongue in cheek I don't think life will ever be "normal" again. I was diagnosed 6/13 and had 18 chemos and 4brachyatherapies finishing on 2/13/14. I wanted port out in March but my oncologist wants to wait for at least one year from finishing chemo. CT SCAN and exams show Ned but he reminds me what a nasty cancer this is. I get port flush once a month it's a good reason to say hi to my chemo nurses. I am fortunate that I only live about 3 or 4 miles from my cancer center.

Kathy I have a question for you. Your internal radiation treatments were several years ago and you talk about bladder and bowel issues. I have some diarrhea issues but mostly I just have to pee all the time even when it's not much. Wait too long and we have leakage. Have your issues got progressively worse over the years or just remained a pain in t he neck.

I'm west coast from Vancouver, Washington. Any others from this area.

Thanks to everyone for the posts

Issues

Hi Joanne:

It was a gradual process. Although I was having various symptoms, everytime I brought something up with the docs they weren't too concern. But it kept getting worse. Most of my scans were good. I do have a lot of scarring. About 2 1/2 years ago, I started this thing where I will get severe adominal cramping which will last for about 4 to 5 hours or until I vomit several times. At first, I thought it was food poisoning or something like that. But it kept happening every two to three months. I kept calling the docs office but the PA indicated that wouldn't be a recurrence. Finally, this last time I met with the doc, I told him face to face. He indicated that if I get another episode, that I am to go to the hospital while I am having the pains and have it x-ray. That is the only way they would be able to tell if I have a partial blockage. Then I have been getting these left sided headaches too which have been getting progressively worse. To night I am going for a sleep study. I have met with an ENT, my regular GYNE, my PCP, Eye doctor and specialist to see what the heck is going on. I had an MRI/MRA of the brain back in Nov 2012 which indicated only chronic sinus. So now I am going to these different doctors to cross them off my list. By the way, it was only through MY suggestions that I saw these doctors. After the sleep study, I also am seeing a Neurologist but my appointment isn't until November 10th unless someone cancels in the meantime. Ugh.

By the way, I ended up with hydrourteronephrosis which was causing me to have bowel problems and frequest peeing episodes.

I just knew this stuff shouldn't be normal so I went on a mission.

My best to you, Joanne.

Kathy

joannewtta · September 2014

Kaleena said:
Issues
Hi Joanne:

It was a gradual process. Although I was having various symptoms, everytime I brought something up with the docs they weren't too concern. But it kept getting worse. Most of my scans were good. I do have a lot of scarring. About 2 1/2 years ago, I started this thing where I will get severe adominal cramping which will last for about 4 to 5 hours or until I vomit several times. At first, I thought it was food poisoning or something like that. But it kept happening every two to three months. I kept calling the docs office but the PA indicated that wouldn't be a recurrence. Finally, this last time I met with the doc, I told him face to face. He indicated that if I get another episode, that I am to go to the hospital while I am having the pains and have it x-ray. That is the only way they would be able to tell if I have a partial blockage. Then I have been getting these left sided headaches too which have been getting progressively worse. To night I am going for a sleep study. I have met with an ENT, my regular GYNE, my PCP, Eye doctor and specialist to see what the heck is going on. I had an MRI/MRA of the brain back in Nov 2012 which indicated only chronic sinus. So now I am going to these different doctors to cross them off my list. By the way, it was only through MY suggestions that I saw these doctors. After the sleep study, I also am seeing a Neurologist but my appointment isn't until November 10th unless someone cancels in the meantime. Ugh.

By the way, I ended up with hydrourteronephrosis which was causing me to have bowel problems and frequest peeing episodes.

I just knew this stuff shouldn't be normal so I went on a mission.

My best to you, Joanne.

Kathy

issues

Wishful thinking on my part that this was as bad as it might get. Time will tell, now it is mostly just an inconvenience but I used to have the best bladder of any 68 year old I knew. It is taking me almost two and a half months to get neurologist appt for my foot neuropathy. They are my worst aftereffects of chemo. It's hard to imagine they will not get any better. I'm dreading winter and cold weather.

Thanks for the info;I know we're each one different but it is really good to connect with some of you that have been at this for awhile. I'm finding the info here and on the kidney posts for my husband so helpful. He was diagnosed with RCC one month before Mr, has had right kidney removed and has tumor on left kidney. He was also in Vietnam in 1966/67 so we are looking at agent Orange connections.

Kaleena · September 2014

joannewtta said:
issues
Wishful thinking on my part that this was as bad as it might get. Time will tell, now it is mostly just an inconvenience but I used to have the best bladder of any 68 year old I knew. It is taking me almost two and a half months to get neurologist appt for my foot neuropathy. They are my worst aftereffects of chemo. It's hard to imagine they will not get any better. I'm dreading winter and cold weather.

Thanks for the info;I know we're each one different but it is really good to connect with some of you that have been at this for awhile. I'm finding the info here and on the kidney posts for my husband so helpful. He was diagnosed with RCC one month before Mr, has had right kidney removed and has tumor on left kidney. He was also in Vietnam in 1966/67 so we are looking at agent Orange connections.

Oh my, Joanne:
You are

Oh my, Joanne:

You are dealing with issues. If you ever need talk, please feel free to ask me or email me. Yes, I know what you mean we are all different but when something isn't normal for you, then you know it could be a problem. The only thing is that sometimes doctors just lump everyone in the same catagory and they don't look at you as an individual. Thats when you have to be your own advocate.

I am sorry that you and your husband have to deal with all these issues. Please know that you both are in my thoughts and prayers

Kathy

Possible long term effects of radiation

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