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side effects of radiation

Taniaj
Posts: 1
Joined: Jun 2005

I had radiation as one form of treatment for my cancer. Now after 2yrs. I am having problems with my organs (small bowls) that were damaged from the radiation. My Dr.'s never told me any of the things that are happening to me, would happen. I am so upset that now I have so many problem as a result of radiation. I wish some of this stuff would have been shared with me before it just started happening to me, my quality of life is poor. If anyone is having the same problems...please talk to me!

jplemmons
Posts: 6
Joined: Sep 2003

I can understand your frustration and anger. I, too, wish someone had told me about the long term effects of radiation. I finished treatments in Oct. 2003. In March, 2004 I started passing blood from my bowels. In Aug 2004 I got a temp colostomy because of a scar tissue blockage in my bowel from the radiation. I had a bowel resection in Nov and the colostomy taken down May 2005. I have talked to other women who have problems 5-6 years out from treatment. They all say the same thing...I wish someone had told me.
I don't know what to expect later on from the radiation...could be more of the same. I just wish someone had told me...I thought when I finished treatment that it would be over.

Bon1978
Posts: 16
Joined: Nov 2003

I'm also two years post-radiation and have terrible damage to my small bowel, bladder, lymphadema, etc. I feel the same way you do about the dr.'s not telling us anything. I often wondered if I was rare in suffering all of the radiation side effects. I've also had a small bowel ressection along with removal of my ovaries, tubes, appendix, jejunum, ileum, and ascending colon. I've had many friends tell me I should sue for malpractice, I think that is somewhat drastic. I know somewhere along the way I signed some paper/ form that stated this could be possible. I think it was just in very fine print and handed to me while I was sedated!

kaddi
Posts: 2
Joined: Jun 2005

I was told there would be perm. damage to the organs. But what can you do? I had rad. hyster. radiation and chemo. What kills me is now that I can work I can not afford insurance and medicaid said come back when you don't have an income so I am not able to afford the five years of test that the doctors told me I needed. It has been almost 3 years since I've seen a doctor and I am having health concerns right now. I am thinking about having a car wash to pay for one of the test that cost$3000.00 I don't know what else to do. Can someone help me

Bon1978
Posts: 16
Joined: Nov 2003

I'm so sorry to hear about your situation. I had the same problems when I was first diagnosed. I did not have insurance, but was working. I eventually was forced to quit my job in order to get Medicaid and am now on disability. What kind of tests are the doctors ordering? I would suggest finding a hospital that will except you without insurance and setting up a payment plan. That's what I did, also tell your dr. and see what suggestions they may have. Their are lots of programs out there that will help pay. Find a social worker at the cancer center or call ACS, they have a booklet about finding programs. Hope this helps. I could go on and on, some friends of mine put an article in the newspaper about my situation and set up a bank account for donations, held a benefit concert, and a golf tournament. Whatever you decide, don't do it all by yourself, you don't need the added stress

for_skyla
Posts: 2
Joined: Jul 2005

I actually just started working for an OB/GYN and funny how it came about 2-3 months into working there i had an Low Grade Squamous cells. AND HPV. I hate to say this.... and i say it in the most careing way as a (medical professional) the last thing we want to tell you or you want to hear is the side effects you're going to have by doing the treatment that will probably save your life. So, you now have bowl problems.... but the good news is you're alive to have them at least. Also. A doctor doesnt' want to discourage you from doing a procedure that you NEED to have. SO they will unfortunatly tell you the least amount to be legal and keeping you informed enough. I'm so sorry to hear that though.

kyhunny
Posts: 5
Joined: Aug 2005

Hello.

I had 5 weeks of external radiation and 3 implants due to cervical cancer 17 months ago and nobody told me about the side effects of radiation. Although whenever I was almost done with my treatments, one of the nurses told me, "By the way, just wanted you to know that because of the radiation treatments, that there is a possibility of other cancers popping up somewhere down the road." Gee, thanks for telling me all this up front. Not to mention the long term side effects of it.

I feel like I got screwed because even though I had the radiation treatments and went through all the crap you go through with it, my cancer was non-responsive to it. So I feel as if I went through all that crap for nothing.

I ended up with a recurrence and a pelvic exenteration. My bladder was recently removed due to the cancer and radiation damage. I just wish that I had all the facts before deciding on treatment.

kyhunny

Bon1978
Posts: 16
Joined: Nov 2003

Wow, I have never heard that because of radiation other cancers might pop up. What did the nurse mean by that? So sorry to hear about all the hell you've been through. I have lots of radiation damage too and they talk about taking my bladder out. Sometimes I think it is really amazing how many body parts we can actually do without! Hope things start to turn around and look better for you in the future.

brysdoodlebug
Posts: 6
Joined: Jul 2006

yup sounds just like me- i really never did get the "low down" on all the damage it would cause- everyone always talks about the chemo - but at least that is just while you are getting treated- this radation crap messes everything up- my bladder shrank and I needed a cystoscopy- of course the bowel is always an issue-
and I see no one mentioned here the vagina issue- it shrinks it- and makes it very hard "like wood" to quote my doc. i have to use an estrace cream to keep it soft and pliable and a dilator to stretch it, to keep it from closing up- its suppose to make intercourse (yuck, i have a low libido, so not into sex anymore) and future exams less painful--
anyone else have to use a dilator, like a dildo, to help stretch????

smjsml
Posts: 1
Joined: Dec 2009

Am 11 months post 25 external radiation and 3 brachytherapy treatments for vaginal cancer one year after hysterectomy for endometrial cancer. Vaginal side effects mainly. Am using Estrace and dilators small and mediem. Have slight bleeding and pain inserting even small dilator. Medium is very painful. Also have had light yellow watery discharge enough for regular pad daily. (since brachytherapy) Has any one had this? Worst part, doctors don't seem to have answers. Pap smears and infection smears have been negative. Gyn says from cells invaginal tract, gyn radiologist oncologist can't see anything, and gyn surgical oncologist said it would clear up with alittle vinegar/water douche. It did nothing. Would appreciate anyone's experience with this problem

roses4friends
Posts: 3
Joined: Mar 2010

My radiologist handed me the dilator and I told him he was crazy:). His nurse was so sweet as the doctor just looked shocked at my response. She interperted what I was saying to mean that I was like you not interested in sex, and had been through too much already to really care at the moment. His response was well down the road you are going to care...I told him I promise that I did not care, I just want my life:). I am single, never married:) Sex is not and has not been an issue for me, I am just not interested after having a pelvic and vaginal exoneration done, as well as my colon and bladder removed. My gyn/onco was great as she told me she was going to help save my life, but that I may never have a working vagina. I told her I was fine with that, so she knew she could do to get the best margins for me and know that I was going to be ok with it. My plastic surgeon was not pleased with how much my gyn/onc took and said she could have took less and left me with a functional vagina. I told my plastic surgeon that I honestly was ok with how things worked out and feel like my doctor gave me the best fighting chance to not have a re-occurance in the vaginal area as that was all of my doctor's biggest concern as it puts the cancer so close to my pelvic bones.

Now in regard to long-term side effects with chemo, I knew that the radiation could cause other cancers, and that the area that was treated can never be treated again so if the cancer does pop back up, I better hope that it can be removed surgically. My kidneys are being watched for radiation damage as I was radiated through my back and sides. I have had radiation burns popping up from my radiation in June this past month, and have been told that the bright green discharge I have is from the radiation, which I was surprised about that one:). I litterally have nothing left from my waist down in regard to organs, it is one big empty whole left with two colostomies, and a very ugly scar down the middle of my stomach that has still not totally healed:). But I am alive today and feel that my doctors had informed me well on all things other than how long it was going to take me to recover from the pelvic and vaginal exoneration, and was told back in December by that surgeon that if she had told me that it was going to take over a year and probably two years to completely heal from this surgery that I might not have gone through with it. I told her that now she knows me better and knows that I would have done it even if I had known the risk of possibly not having function to my legs. But I was lucky and that did not happen but all of the other things that I was told that might happen has and I just role with the punches and waiting to get each thing looked at and see what I need to do to modify my life. We are worriers and we are strong women who have been through things that only we can relate to each other on so we have to band together and give support to one another!
Melinda

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Melinda,
Wow, you've been through so much and yet you keep pushing on. I have great respect for your strength! Like any of us, we're all willing to go through whatever just to have the chance to extend our life and pray for no recurrence. It sounds like you had a great doctor who held nothing back, which is very unusual as many of have docs who told us very little as "everyone reacts differently to treatment". If my doc had told me about the side effects of the treatment that I have experienced since the end of treatment, I believe I would have put a lot more thought into whether or not to have treatment. I've recently passed the 18 months mark ending treatments and am just starting to get back some quality of life. There's been many times during this period that I'd wished I'd never had treatment as I only had quantity not quality of life. Things are looking brighter at this time and I'm grateful for modern medicine.
You go girl!!!
((HUGS))

sharron831
Posts: 1
Joined: Jun 2009

I totally understand - I was diagnosed with vulvar cancer, stage 4 and had very agressive radiation 10 months ago. Obviously, it saved my life, so I don't regret it. But I've had side effects one after another. I am scheduled for a colostomy in a couple of weeks. Seems the wall between my rectum and vagina is breaking down. So that's a new one. I thought I was going back to work November 1, but now I can't. Hopefully the surgery will go well and the biopsies they will be doing are negative and I can get back soon. Has anyone else experienced residual effects of the burns to your skin that make sitting painful? Or found anything to help the scar tissue? I have no open burns any more, but my skin is damaged and I can't sit for long without hurting a lot.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Sharron,
I received abdominal/pelvic internal & external radiation and only had one serious burn on my sacral area which has long since healed. I had an awful time of trying to sit while receiving treatment for internal burns (I was handed a donut pillow). My residual effects are scar tissue and adhesions that are causing major havoc with my GI tract, but nothing can be done because the only answer is surgery to remove them and then that would cause more to grow. They said I will have to wait until it advances to a stage such as your experiencing before doing anything and in the meantime "just keep on with the pain medications" which I despise taking. At this time, something is affecting the arterial flow in my lower abd./pelvic area. The CT didn't show anything so they told me when my leg starts getting colder than normal or starts turning color...then they will intervene. Can't wait!!
I hope you find the answer your looking for. I wish you luck on your continuing journey.

jmdaughter
Posts: 12
Joined: Apr 2009

Hi,
My mom is 88 years old and was diagnosed with vaginal cancer about 2 years ago. She refused to do radiation and chemo due to her age and she has been fine with no symptoms so far. But she recently wanted to go for a 2nd opinion and these doctors are recommending that she have 5 weeks of daily external radiation with 3 treatments of internal radiation. After reading about so many side effects of radiation and thinking about her age, I'm very scared of her having these treatments and would like your honest opinion since you've been through this. Anything would help. I hope you're doing okay now and thank you so much for any advise you can give.

jmdaughter

LRoz
Posts: 3
Joined: Mar 2010

I know how you feel! I had massive radiation for cervical cancer in 2004. Today, I have severe nerve damage in both my legs, degenerative arthritis/disc disease in my lower back. Also, spinal stenosis, two discs bulging, & a small fracture. I also have chronic gas/diarreah, bleeding in my urine, pouches on my colon, & a hiatel hernia. The way I look at it is this: "I can deal with all of this as long as the cancer doesn't come back." Yes, I hate all of this, but I am so happy to be alive!

eleanorr
Posts: 5
Joined: Mar 2010

My daughters oncologist wants her to have radiation just to make sure he got everything. He did tell us that he did, and that it was contained. He feels that since the tumor was over 4cm's that it will come back.

After reading your stories tell me what you would do in this situation now that you have already gone through it.

Should she wait and see, or do the radiation and wait and see?

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

eleanorr,
Your daughter has a big decision to make. Having radiation does not guarantee that it will kill off the remaining cancer cells, if any linger, and prevent it from coming back. As you've read, it can cause many other problems to pop up. Doctors don't like to talk about all the side effects that may happen, because everyone reacts differently to the treatment. The one side effect that all of us seems to experience is GI/bladder distress; during and after treatments.
Had some one asked me a year ago, even 6 months ago, if the treatments were worth it...I would have said NO. I had no quality of life, just quantity. I experienced more nausea and vomiting than during treatments. At this time though, I am glad that I did go through the treatments. The GI tract, with the help of meds, still doesn't work correctly, but it's working. My bladder has a mind of it's own, but doable. Scans show radiation damage to my lumbar spine and pelvis. Time will tell what will become of these. I don't focus on the "what if's" that are down the road. My cancer had spread into my pelvic/abdominal lymph nodes...chances of further mets it high. The only way to move on is to live each day to it's fullest. Spring has sprung here, or at least trying to, and I am glad that I'm here to experience it.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'd suggest the radiation for your daughter. Better to be safe than sorry is my motto! Id rather get it over with now, than taking a chance of it coming back later and having to start the treatments again.

Best of luck!

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