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Some of you may not be aware how hard it can be for a women to have internal radiation for cervical cancer. There are real issues related to what the radiation can do to the women as it impacts on the cancer, it can also hurt other areas on the women and pain can become a real issue. Maybe you have your story you can share?
Cancer Surgery Genital warts Back pain Burns Radiation therapy Ovarian cancer Herniated disc Peripheral neuropathy Epilepsy Osteoporosis Osteonecrosis Hysterectomy Uterine cancer Vulvar cancer Physical therapy Breast cancer Cervical cancer Pain Neurontin Memory HPV Diarrhea
Hi:
I am not here to depress anyone but only to tell how radiation has the possibility to do damage even though it is thought and believed to be the best form of treatment in keeping cancer from every coming back. This is not easy to write nor will it be easy to read but it is true as I live with it each and every day.
I was to have 28 external treatments along with 4 interals. In the end, I only had 27 externals and none of the the internal treatments as my gyn/oncologist had felt that I had had enough. He was very right when he made that comment but we did not know how right until about a year later.
It does not happen in every case so please remember that. What I am about to tell you only happens in about 2-3 percent of radiation cases and should heal within 2 years. But there is another low percentage of about 2 percent that does not heal and for the rest of our lives, we have to live with pain and new developing problems.
About a year after I was finished with my chemo and radiation, I began to have a small pain in my right buttocks area. I ignored it at first as I thought I might have somehow hit something as I am prone to do. But the pain progressed and I was at a loss as to just what was happening to me.
I was put into the hospital in June and had several tests done as my doctors were concerned that the cancer had gone to my bones. My symptoms were showing such a possibility. After the tests were done, I was determined free and clear of any cervical cancer but the doctors were still at a loss regarding the pain and by then it was becoming my world.
In July and September it was finally confirmed what was wrong with me. I had insufficiency fracture lines in my pelvis and lumbar spine along with Osteonecrosis which is bone death. My pelvic bone was and still is, dying. Radiation along with surgery had cut off my blood supply to my pelvis. On the left side there is a complete fracture in two places which has left a piece of bone floating free. Yes, I still walk but slowly using a cane or a walker. But the important thing here is, I still walk.
I had to retire from my job as a Judicial Secretary at the Court of Appeal on disability. I had to give up my schooling for my masters and one day my PhD. I could not concentrate with the pain and the meds they gave me to try and control the pain. The pain is never really gone which is a good thing for me for if it were, I would be doing things I haven't any business doing.
I have also later been diagnosed with Peripheral Neuropathy in my legs. My nerves are dying due to radaition treatment. So, I walk with a limp, who cares. The pain from that can be a bit trying at times but it will ease.
Radiation is a good thing but must have better monitoring. I was very happy when I heard that they are now beginning to do DNA on cancers as they are realizing that even though two people have the same cancer, it doesn't necessarily mean the exact same treatment. So this too is a very good thing but will be very slow in use I am afraid.
Radiation saved my life I am sure but the continual aftereffects do get me down at times. I also have a bowel problem and have to wear diapers which actually I really don't care. They have saved me from some pretty bad moments that is for sure. But now I must have surgery to correct the problem. I will have surgery sometime this month (May). I will be asking when I go in for my appt. on the 7th.
Life is good but it seems that the side effects of the treatments we get have a tendency to take control of our/my life. I now have to eat by what is called a TPN. Nothing more than a bag of white substance that is hooked-up to me every night in my right arm. There I have what they call a pic line. Anyway, this is to get me healthy for the surgery. I am looking forward to the surgery and yet not because I really don't want to be opened up again but it is a must if I want to get my bowels under control.
This is not a story of sadness but one of caring on. Taking each day and being greatful for it. I can still walk on my own and yes, I have to take pills but I get on with my day. And if I can't, I lay down on the sofa with my favorite blanket and watch t.v. I have whatever I want to drink around me so I don't have to get back up for anything except the bathroom. Am I happy? Had to think about that for a moment and yes, I am happy even with all the little obsticles the Lord has given me. Yes, I get mad at times and want to throw things but I don't. Why not? I would have to pick it up and throw it away so where is the fun in that???
I just want to say, there are more problems with radiation than people know. And we need to band together on this one and make changes for it is our bodies they are playing with.
Pam C.
Aileen is correct in saying that internal radiation can have a major impact on your health and well being after treatment. Having cancer did not cause physical pain; having treatment was relatively painless, but seven years later I've become a "medicine junkie" just to make it through a normal day. Nerve endings have been damaged which cause symptoms similar to menstrual cramping and lower back pain. Damage to nerve endings causes neuropothy in my right leg, and scar tissue in the lymphatic system causes leg swelling and a tingling sensation. The worst damage, however, has been to my bladder and colon. Radiation cistitis in my bladder is not usually painful, but it is getting so bad, that I am slowly losing capacity and fuctionality. In 2004, the radiation damage had stretched and pulled on my bladder so much, that it caused my bladder to rupture. After two abdominal surgies in one week, my bladder was repaired, but I now know that eventually I will have to give my bladder up for the cause and become permanently attached to a foley or to kidney tubes.
Needless to say there are some drugs and treatments that ease the symptoms, but I have been told by many doctors that there is no cure. Currently, my "miracle drug" of choice is Neurontin. This drug is normally used as an anti-seizure drug for people with epilepsy. How it helps me is by calming down the damaged nerve endings, thus relieving the back pain and neuropothy. The best treatment for me so far as been Hyper Baric Oxygen Therapy. I did this therapy back in 2001 as a last ditch effort to save my bladder. For nearly two months I was put into a chamber that was decompressed to 35' below sea level and breathed in pure oxygen. At the end of the two months, I thought we had found the miracle cure. My bladder was free of radiated tissue, my colon no longer was bleeding, and I was taking less of the neurontin. Unfortunately, Hyper Barics is only a temporary fix and over the past 5 years all symptoms have returned to pre-hyper baric state. I am currently working with my doctors and insurance to see if this treatment can be done once again.
For anyone who is contemplating having radiation implants as part of your treatment, ask your doctors many questions about the dosage and duration. Tell them the truth about how easily you sunburn and get as much information from them as you can about the long term side effects. Don't always believe them when they tell you they are minimal.
Hi Pam!!
My side effects don't even touch the ones you've had to suffer with. I am 2 and a half years out of treatment and I have experienced these chronic side effects: radiation induced cystitis, rectal proctosis, free flowing fluid and the newest reveal, severe osteoporosis. The doctors also informed me because I am young, I heal quicker that an older person recovering from radiation, which is great but the downside to that is the fact that I build scar tissue faster, so there's a good chance in the future that I will need surgery for bowel obstruction (I'm praying I don't have to go through that).
I was burnt so badly, my skin was raw by the end of my treatments. They gave me a wonderful creme that we even use today for burns.
I also read about a DNA test they can use to determine which strain of the HPV virus is present.
I asked my doctor about it and I was told that we don't have the ability at this time to perform such a test.
I commend you on your strength and courage.
AnnMarie
pam, i am so sorry to hear that the radiation you received has had such awful side effects. i had no idea that it could result in such consequences. i hope your upcoming surgery goes smoothly and successfully. you clearly have great inner strength. please let us know how you're doing after the surgery. i'll be thinking of you.
Hi AnnMarie:
Please forgive me for not writing sooner as I have been a bit under the weather. I am so sorry to hear about the problems that you are already facing from your own radiation treatment. The one thing that bothers me about it is the fact that they use the same formula on all of us when we really need to have each and every treatment specialized to our own individual needs and according to our own individual body types. I was weighed once a week and because of my problems now, I wonder what all that weighing was for and how was it to help. I pray with all my heart that you do not have bowel troubles down the line because as we all know, radiation treatment does not stop when we stop treatment. The side effects can continue onward for the rest of our lives. And then I must think again, would we be here if we did not have it? Did it really make the difference in our lives like the doctors said it would?
There are doctors now who are turning away from radiation but is it always such a good idea? There are so many theories out there and we really won't know the answers until way down the line. I took radiation because they told me that without it, my chances were slim in surviving. I just don't know for absolute sure anymore. I have a friend who's doctor didn't believe in radiation and her chances of surviving where very slim. Now it is about 12 years later and she is still cancer free without radiation treatments. She had ovarian cancer. Her dog discovered, or rather smelled her cancer and in his own way, was insistant in getting her to a doctor. I had the pleasure to take care of him from time to time and after my cervical cancer he still watched me with his eyes, trying to tell me something was wrong. He followed me everywhere and eight months later after being diagnosed with cervical cancer, they found breast cancer. When that was taken care of, he acted towards me in his old manner before I was told I had cancer. He was one smart dog.
Never stop fighting AnnMarie. Give the good fight in all things and not just cancer. God has given us a very valuable gift, another chance to do better in our lives. I firmly believe that. And maybe, just maybe, He might want us to do some work in this area because we KNOW what we are talking about and with tenacity, our voices will be heard by the right people.
Thank you once again for your comment and concern. Your are in my prayers and thoughts.
Pam
Dear Flowershoplady:
I love the name you use. I can never think of any clever. Anyway, thank you so very much for your reply to my very long story. I just live my life each day as the Lord gives me. I am very pleased each morning that I can still walk on my own and have the strength to do so.
Flowershoplady, my story is not all that unique but I quess we would all like to think so because it is happening to us but I have read too many stories even worse than mine in regards to the side effects of radiation treatment.
I am doing as well as can be expected. Don't feel sorry for me but be happy that I am still able to fight each and every day. And for all of us, it is not an easy fight. Were in the world do we find the strength to keep going on? It is tenacity, it is the blessing we are still given each and every day, it is who we are and we refuse to give in and let something ugly control us. We put up the good and very necessary fight each and every day we open our eyes and see the morning sun.
I will let everyone who is interested when I go into surgery. Right now they have me hooked-up to a TPN line which has now become my food of choice or so they would like to think. They, the doctors keep saying in a couple more weeks for the surgery. I have a visit coming up soon with my oncologist and gyn/oncologist, I am sure that they will let me know when. Right now we are having a bit of a problem getting my protein, potassium, and Albumin up to normal or what they call normal. I finally lost the weight that I have been working on for some time with this TPN and now they want me to gain some back!! You know, you just cannnot make some people happy at times. Ha ha.
Thank you so very much for you concern and good thoughts. I will and must do well. I do have one fear though, that they will open me up and then just close me right back up. I guess it is a fear that we all go through. Is anyone else like me out there?
Thank you so very much for reading my ramblings and for being so kind to me.
Pam
Hello Ladies,
Thank you for sharing your stories. I am sorry to hear of your suffering - you are courageous women! I will keep you in my prayers that your quality of life improves and pain is removed. I have learned something I never knew before because of your willingness to share your stories.
I agree with the statement that treatments must be customized to the individual and the type and strain of HPV infection (if that is the cause) must be made known to get a handle on how to proceed with treatment.
It angers me to think that enough information is not given to people in advance of their decision making process - this includes my own experience.
While I did not experience radiation treatment, just surgical which has its own set of after-effects, I had a great aunt who did for vulvar cancer. I doubt she was even tested for HPV - her age (she was a virgin at marriage) and the 'delivery' of the news of a link to an STD, in hindsight, probably had something to do with it. At the time, I was unaware of the lethal aspect to HPV and cancer link - I just thought it pertained to genital warts and was benign at that. Wow, have I been educated since!
Again, so much is learned in hindsight, because we move on the information we are given at the time. Anyway, she was in her eighties and the treatments went ok, but the trouble started later. Needless to say, she suffered and it was a horrible experience for her.
I wish I knew then what I knew now. I would have advocated for her.
I wish you success with your upcoming surgery and will keep you in my prayers.
I too had radiation therapy when i was first diagnosed with my cerivcal cancer. I had 28 days of external beam and 30 hours brachytherapy. That was in January 2006. Since then i have taken chemo and have been off chemo since 11/06.
I can tell you that i believe the radiaition has more effects (long term) than the chemo itself. I now have horrible pain in my left hip area, sometimes keeping me up at night. I told my oncologist and he prescribed a pain med. Well i'm on so many meds another was just too much. I cannot function properly at work. And what kills me, is none of the doctors will admit the radiation can give you long term effects. I have sexual problems now when i have intercourse, i bleed and it's very painful, that's from vaginal stenosis. I have other problems also with my bowels and urinary tract. I have no idea what to do. If anyone else out there has similar problems please write in.
Thank you.
Barb Kane
Maryland
barb, i am so sorry that you have such lasting side effects from the radiation. i don't have any words of wisdom on how to feel better, but i wanted you to know that my heart goes out to you, and i hope you find the energy to continue to pursue some sort of resolution to ease your pain.
Hello all...
First and foremost I am so very sorry to hear about the troubles that you all have had post radiation. I am not surprised, however, due to the different types of treatment, physicians, etc.
I was treated successfully in 1997 for advanced cervical adenocarcinoma, stage 2b. My tumor was the size of a golf ball and had been mis-diagnosed for a number of years as a fibroid, due to my age at that time (43). Adenocarcinoma is especially dangerous as it can cause "skip lesions" causing it to be missed during pap smears (as mine was). It wasn't until the tumor started shedding dead cells and caused a discharge that I raised an alarm and went to see my gynecologist for what I thought was an infection of some short. I received a call the next day to inform me that I had better take quick action and see an oncologist.
I received 6 weeks of external radiation and 2 internal implants. A "tumor board" reviewed my CRT's, MRI's and all of the exams. I was assured that the very best would be done to only treat the cancer and do minimum damage to other tissue.
It took almost 4 years for me to get a totally clear pap smear. My doctor did 9 biopsies "because she is very, very careful" and had 2 labs read them. I was making "radiation damaged" tissue due to the high dosage of radiation... but NO cancer. As a treatment to help my tissues heal my doctor prescribed a device called Estring. This is a circular ring inserted and left in place in the vagina, similar to a tampon. It releases a tiny amount of estrogen-you change it periodically. You can not feel it nor can a sexual partner feel it. It made me laugh, though, as the Estring is usually prescribed as a fertility aid...lol. It worked and gradually my tissues healed. I wanted to share that with any of you that may be having similar problems.
I have had relatively no long term post treatment symptoms.....*yet*. I have repeatedly asked my doctor if I should anticipate any difficulties-and have been told "not to expect any".
I think a lot depends on the quality of care that you get with pre-treatment work ups and the follow up.
I wish you all peace and continued health.
warm regards
Dorrie
Stage 2b cervical adenocarcinoma survivor
10 years in remission as of November 2007
I was diagnosed with stage 2b Cervical Cancer in October of 2006, after just being married for 3 months. I started my 25 radiation treatments all of December and January. Then I had 2 internal treatments done. One for 24 hours and the second one for 48 hours. After about 2 months I started feeling normal again but in June I was told I had developed necrosis which is deading of the tissue which was causing me not to heal from the radiation. I was then told I needed Hyper Baric Oxygen treatments and ended up doing 40 treatments of those, lasting 2 hours each. The Dr. has said it has taken my lesion down from an orange size to a big q-tip end size. I go back to the Dr's tomorrow to find out if it has finished healing. But I too suffer from bladder problems and bowel problems. Also had several bacteria infections from the nemcrosis and had to take flagly. I also found by taking 2 amonia a-d a day kept the bowels semi- normal. Relations with my new husband has also been challenging. Certain positions are still uncomfortable and feeling pressure.
I had asked my rad dr before treatment what my chances were without the internal( I felt like 25 external were plenty) and he said he didn't know because he always did the internal with all his patients. Now I wish I would of followed my own gut feeling and didn't have that part done.
Anyway, my prayers go out to all of you with cancer in general and at least we have this site to see that we're not alone. Thanks for listening.
Barb,
I ws diagnosed in May 2006 with 2b and had lymph node involvement. My tumor was 7cm and to big for surgery, so chemo with 28 external radiation treatments and then 60 hours of internal radiation were required. It got rid of my tumor and my lymph nodes were ok too following treatment, but I am having laser treatment on Friday to remove some recurrence and having my cervix opened (closed from scar tissue) to relieve a build up of blood and so they can take tissue sample beyond the cervix. I wanted to tell you that I also had bleeding , even without intercourse and my radiation oncologist used some nitrogen I think to help the area that wasn't healing properly and in time it improved. Haven't had bleeding for a couple of months now. He talked about using the hyperbaric oxygen treatment as well since the radiated tissues were not healing well and that was causing the bleeding, but it resolved itself before that was necessary.
Look into this and whether you are bleeding because you are not completely healed and whether they will do something. There are other options from what I understand. Not long after treatment I also had some hip pain, but it wasn't enough to warrant pain meds and it stopped as I healed. My bladder problems seem much better now too, but I stil have that extreme urgency with my bowels and frequent diarrhea, but I am ok with that usually.
Make sure they do something. You should not have to continually bleed or be in pain.
Susan
I feel all of you!
At 32 I have long term affects/damage from my radiation. I have sereve scar tissue at a bend in the bowel which causes back-up and intension pain. I have radiation cystitis and often can't control my bowels. I've had to donate my underwear to many bathroom stalls since the radiation...embrassing! I bleed badly from my rectum, as I have a 2 inch tear that hasn't healed in three years since my radiation finished. My hips muscles suffered atrophy and I attended physical therapy for months after the treatment was finished. Today I have pain in my hips and still have to do the stretching exercises just to tolerate the pain.
It's sad so much damage has to happen as a result of the radiation and none of my issue were told to me as possible side effect before hand.
I just finished 5 weeks of chemo and 25 external radiation treatments. My rad dr wanted me to do 2 48 hour internal radiations. I have chosen not to do them. After reading about the internal rad, the side effects and the damage that can happen I knew this was the right choice. Follow your gut feelings. Some may disagree but I have to do what I feel comfortable with.
I have a problems with drs using the same treatment plan for all patients. Not to mention the attitude I got when I told him that I would not do the internal. He was very rude and tryed to scare me into it.
The side effects from the external rad and chemo have been hard to deal with. Somedays I can't leave the house because I have no control of my bowels, the bone pain from the chemo makes it difficult to stand, and at night the pain is so bad it effects my sleep.
I go for another pet scan monday. If I don't have a good scan then I will find another dr.
Remember drs are not god, they do not know everything, follow your gut feeling, ask lots of questions and if they are not answered then do your own research.
I completed 5 weeks of cisplatin, 28 external radiation treatments and 1 48 hour internal round of radiation. Tomorrow I am scheduled for my last internal treatment. I have been hesitating from the very beginning but they make me feel like I am an idiot. I am trying to convince myself what harm will come from one more round of internal radiation; that damage has been done. I had side effects during both chemo and radiation all of which have ceased. I feel relatively healthy well until this last week. There attitude is we will deal with those problems after your last internal. I really do not know what to do and I have to decide in the next hour. I have to do prep for the procedure tomorrow. Your stories have helped. Thanks.
hi pam,
you sure have been through a lot. i feel so lucky that my effects from my 42 radiation, including 6 internal after my radical hysterectomy [including lymph nodes] don't compare to what you have endured. good for you to keep an attitude that allows you to see the 'good' in a 'bad' situation.
i too was never told of all the pain during and after radiation treatments. that i would have to use a dialator. i have pain in my butt, but not sharp. i don't even dare tell any doctor. they will probably think i'm nuts. i have neck pain. a herniated disc, but not bad enough for surgery. this is from a spine specialist. so i guess i have to be in severe pain. it's not gonna get better, so i have to sit and wait for it to get worse. more pain to tolorate every day. i had shoulder surgery 3 months before i had symptoms that lead to the rad/hyst., so i never completed the physical therapy needed to heal my torn rotator cuff, torn bicept and torn tendon oh, and the original problem, a calcium deposit.
enough of my complaining. i also feel that women should have 'knowledge' of what 'may' happen during and after radiation treatments. ==no uterus, yet cramps everyday?== how does that happen? my gyn/onc says nothing.
i'm certianly not happy to hear of your daily pain and trials and tribulations, but your story does inform and inspire and make some of us grateful. thanks.
one day at a time. hugs to you. ==j==
hi annmarie,
i'm sorry for your effects of radiation that weren't, well the most pleasant. i too had what i called, 'cause i did try to have a sense of humor while i was going through the radiation treatments' ''burning vagina'' i could not even wear panties. just a skirt as i lain on the couch trying to get comfortable. i also was prescribed a cream, which helped, but i also had to rely on pain medication. even if it just made me sleep, i wasn't feeling the burning. i'm just a little over a year from my last radiation treatment. still have many problems, but my pap always comes back 'negative' so i guess i just have to deal.
i also have a bowel problem, but hope, hope, hope i can just eat the right foods so that i can beat having another surgery.
my best to you. we will survive!!!===j===
Barb, I don't know how close you live to Montgomery County, MD (right outside of DC) but there is a program at Holy Cross Hospital in Silver Spring, MD (301/754-7340) for Pelvic Floor Therapy which helps regain continence. Basically, you are examined and are taught to "re-train" your bladder & your bowels. I've found it VERY helpful (I was having horrible problems) and now I am beginning to see results after only 2 weeks. At least call them to get some information or maybe a referral for someone in your area. I feel much more in control of the situation.
Also, there is a lot of information on a website called womentowom.com -- you can paste the following link into your browser. I hope it helps! Please let me know -- feel free to email me
at : nombrepublica@aol.com if you need more information. Good luck!
http://www.womentowomen.com/urinaryincontinence/index.asp
Hi
I'm 44 and am supposed to go thru pelvic radiation in 1 week!! This is scary since they did not find positive lymph nodes.
I am still contemplating another surgery since my adenocarcenoma was mis diagnosed as uterine and I had a simple hystorectomy in Feb. Now it is April and Doctors are scaring me into the radiation. I had Stage 1B small tumor- 4mmby 14 mm.
I am tempted to do nothing. They gave ma an 80% survival rate. I don't think I want to go thru life with bowel and bladder problems. I don't want to die either.
Maybe I won't get the internal therapy. Also UCLA has not suggested chemo, but Cedars did... I'm confused. I have one more doctor to see on Monday about surgery... then a chemo oncologist... I am a mother of 3 and can hardly hold things together for myself and family.
Thanks for the website... It helps to hear other stories. I never thought my life would become like this ever...
Any advice??
Well, it seems to be the same. I am going to see a rheumotologist. I don't even know what doctor to see anymore. My back and hips are aweful and pain is so bad in both my legs. It makes me mad. I danced all my life and now at times I can barely walk. I have to crawl up the stairs at times. Bowels, bladder and intestinal problems have been the most problems I've had until this year. It will be 5 yrs. I had external rad., chemo and the barachytheropy also. I feel like I can't get the doctors to take me serious because I am 32 and "look" healthy.
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