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Side effects from radiation

mamado's picture
mamado
Posts: 14
Joined: Jul 2014

I was told by other women that radiation is the gift that keeps on giving.  I found out this week I have radiation colitis.  No diarrhea or constipation so far and bleeding is a couple times a week or less.  My oncologist wants to see me next month to discuss treatment.  I have read other's stories of the side effects of radiation and some are really severe.  My family says to me, "Well at least your alive!"  Yes I am glad to be alive but wish the radiation oncologist would be more up front about side effects.  I breezed through treatment pretty good and I am cancer free now, but It is frustrating to have to deal with side effects months after treatment.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

The reason they don't tell you is that they don't know the long term effects.   Yes.  They know the short side effects - burning, scarring, etc., but when I directly asked my radiation oncologist about the long term effects, he didn't have an answer and said it is unknown.  Once reason for that is that now there are survivors, long term survivors.

I was not given pelvic radiation because the side effects were going to be detrimental to me that the risk of recurrence of cancer because of the way I scar so easily.   I did, however, have 3 HDR brachytherapy.    I had this in August of 2006.   In 2014, I developed hyrdroureternephrosis and my left kidney started to loss function.   I now have to have a ureter stent in which needs to be replaced every 3 months.  So every three months I have to have a PCP check-up, chest x-rays, and blood tests prior to my out-patient procedure where I am given anesthesia for.   They also will x-ray me in the operating room to make sure the stent is properly placed.   I now have to do this forever or have a major surgery to reimplant the ureter into another part of my bladder.

Understanding your frustration.

Kathy

 

mamado's picture
mamado
Posts: 14
Joined: Jul 2014

I know my side effects are not as bad as others.  I really feel for you Kathy.  I am glad to be alive, but get frustrated when family members say, "well at least you are alive.  It is so easy for them to say that.  I will be seeing my doctor next month to discuss treatment for radiation proctitis.  I like something I heard someone say, there are two days we don't need to worry about- yesterday and tomorrow.  Have a great week.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

I know what you mean about family members.   My son wrote this for me one Mother's Day and I will share a part with you.

 

"The water may be rough, merky, and/or stormy, but that would never stop one from sailing through because storms never last forever"  

 

No side effect is greater than the other and we all feel the pain and frustration.   

Hang in there!

 

Kathy

ilana123's picture
ilana123
Posts: 1
Joined: Sep 2014

Thanks for making me laugh. This is my first time on this site. Hi, My name is Ilana. I had a rare cancer called low grade endometrial stromal sarcoma. Full adominal hysterecomy and 7 weeks of radition. Oh ya 1 week in the hosiptal for 104.3 tmp and sever dehydration. Yep thats all, I think . It will be 2 years nov. since my last gift of radiontion. I have found that I am in pain right above the pubic bone, where the last blast of radition occured. Dr. stated scare tissue. Anyone out there has these symptoms? P.S right across the board about bowl movements. My friends and family just do not get it. I think I need new peeps and a new family? 

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

welcome to this site.  It's one you don't want to belong to but the people on this site are great for strength and support. 

What you will find out is that a lot of times scarring will be the answer from the docs When they can't give you an answer.  I get pains here and there in my lower back and pubic bone.  recently I have had a back ache causing numbers and tingling in my left arm for over 4 months.   Can't find the cause.  It's wakes me up at night.   And if my bowels don't work right it causes a lot of different pains in different areas.  

You ssy you need new peeps and family?   This is a nice place to sound off.   Family members don't understand concerns about a pain.  They think you are fine and since you may be done  chemo/radiation then you should be back to normal.   

Hang in there.   Also check the uterine site and or ovarian.   You will find a lot of support there too

 

Kathy

yikesihavecancer's picture
yikesihavecancer
Posts: 5
Joined: Dec 2014

in over a yr remission from stage 3 c. Cancer and nobody understands the miserable side effects that follow from radiation treatments and chemo....I am now dealling with severe radiation dermatitis  6th month of it..doctors have no answers and act like I am exaggerating it

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

I'm sorry, yikes.  It is aggravating to have them not even acknowledge you have this side effect.  We're not a bunch of idiots - we know our treatment can have lasting effects so just tell us if you can't do anything!  I hope you can find something to help you.

alyvia0575
Posts: 2
Joined: Sep 2015

Radiation, the gift that keeps on giving. Wow. What an accurate statement. I had 25 rounds of radiation and 2 radiation implants in 2012. Approximately a year ago i suffered two separate fractures just by walking because radiation has caused me to develop severe osteoporosis, In the last year and a half I have went from walking with a limp to using a cane and I move very slowly, Its very difficult to step up a curb or climb stairs. I am very limited. I once walked and did yoga to stay in shape, I now walk like I am 90 years old and I have seen two specialists at Yale New Haven Hospital and am currently seeing a bone specialist at Mass General in Boston because noone can seem to figure out what to do. It's very frustrating and exhausting. There's much more to my story, but if anyone has dealt with a similar situation please let me know. Thank you.. I will not give up

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

I was just diagosed with Osteoporosis (-3.2).   I never thought about the radiation causing it.   

laurs
Posts: 7
Joined: Feb 2013

Hello all I am a thirty plus year survivor and I am surprised that your doctors mention anything at all about side effects.  I have heard that the radiation therapy to the chest area that I received wouldn't do anything from oncologists and others. 

 I had a bone fracture in a foot just from walking and am trying to recall if was before or after chemo.  Remember though that there are other activities that create wear and tear on the body.   Running or jogging puts strain on the back when you think about it, just like jumping up and down for a half hour plus would put pressure on the back vertebrae.  Why not try taking an inventory of activities?  I 'm not anti exercise but think about what "would" stress out different areas of your body.  Some exercise is good.  It's for circulation and general health.  I don't by any means negate aches and pains that just appear.  I have had some sudden things occur myself that could be due to a lot of things.  I'm just saying think about it a little.  Take care

Ineter
Posts: 1
Joined: Mar 2016

I just joined this forum to see if anyone else had similar symptoms to what I am now 

experiencing. I completed pelvic radiation inNovembet 2015 and since that time

i have been having excruciating pain inky thighs. First it was the Right thigh but now

it is mostly the Left thigh. The pain keeps me awake at nights and I have been taking

ibuprofen to help. I also walk with a limp and it is

a struggle to go up the stairs. I don't use a cane yet but if things keep up like this I may have to do do

Eventually. I hope I don't begin to have other side effects like cystitis. Doctors need to inform patients

more about the leg and thigh pain and not be so hesitant to prescribe more potent pain

medication for comfort.

 

katenraj's picture
katenraj
Posts: 18
Joined: Aug 2012

Hello there

 

I too had radiation to the vagina/vulva and some colon area. I am also an endoscopy nurse. I see radiation proctitis "from the inside" via the scopes we use. I would go see a GI specialist as they deal with this all the time. There are some good medications to help deal with this issue. I wish I could say something to make it all go away but I have not found that yet. Still looking for it and will share with you wonderful ladies if I do find it. 

Sisters, keep marching onwards and educate our friends and family. We are admired by so many people but we are scared and tired too.

Kathleen

sadiesmom17's picture
sadiesmom17
Posts: 6
Joined: Nov 2015

Hi everyone,

    I am halfway through my radiation for a vulvar sarcoma. I had 2 operations in the Fall to completely remove the sarcoma so I am, at the moment, cancer free.  Chemo does not work with my form of sarcoma (very rare) so the radiation is sort of a "topping off". My doctor says there is approx 30% chance it will recur and the radiation might lower those odds so I decided to go ahead.

    After 3 weeks I developed burns to the skin both outside and inside the vulva (such as there is left) and the tissue was swollen and urination was quite painful. The doctor took me off treatment for one week which helped a lot. Using sitz baths and aloe and Calendula oil really made a difference. I started back yesterday (Monday) and hope to make it through the rest with no more burning!

    The other side effect of the radiation was a significant yeast infection - again a common side effect of radiation in the vulvar area. So far I have had no other issues - Yay!. I am scheduled to end after 5 weeks (March 11th) but there might be a 6th week added - not sure yet.

     I am very fortunate (and I know it) to be cancer free and in remission. As Leonardo diCaprio said the other night at the Oscars, "I don't  take it for granted".

     Regarding family members or friends there is just no way they can understand what we are going through. I think they want to but just can't. But, I did read something helpful a while ago that resonated with me. After surgery/treatment, etc. we will move into a "new normal" - probably not like before - and we have to give ourselves permission to be ok with that whether others are or not. Family members/friends will sometimes assume that after treatment we are "cured" and should be back to what was "normal" before. But we are never cured - we are in remission - and we have been through a lots - and others need to understand that if they can. I am fortunate to have a great suppport system (famiiy and friends) but I know that my "new normal" will be hard for them to understand.  Blessings to you all!

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

sadiesmom, I read your post and think 'what a spirit!'

I agree with your last paragraph of 'new normal'.  For me,  when the treatment ended it was like being pushed off a cliff.  To me, treatment and visiting the doctors and everything else that went along with that was like being wrapped in a comfortable blanket.  Then - boom - you are on your own.  It is a little scary and I thought 'wait - I'm not done with this' and it was the first part of the new normal to accept.  Sure, the doctor's office is always there to call and ask questions when you have concerns, but you can't help but ask, "what's next".  I started to figure it out, but it I can tell you I drove by the hospital on the one year of my surgery anniversary, I live right by the hospital, I cried because I couldn't help but remember that it was one year ago....

The first year after everything ended was, "this time last year...." and it lessens over time, but I have never forgotten.  

There are ups and downs, but you sound so right about it.  

I pray your treatment can end without any more burns.  Please come back and let us know how you are doing.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Here is what I learned from my own experiences re side effects, but I had chemo and radiation simultaneously, so I do not know which caused which side effect, which things are age related, and which things were from the cancer:( in no particular order)

1. Some things take a few years to heal/recover, for instance,  thought my diarrhea was part of the new normal, but it kept improving over time, and I would guess it took about 3 years to really feel normal in that department.  I remember my tendons and bones were often sore, but these have improved as well.

2. My thyroid tanked which explained my tiredness after treatment.

3.  My teeth suffered bone loss, so they are loose, but this may be genetic, as bad teeth run in the family

4.  Emotions go up and down after recovery, and they have stages of healing.  I expected to get back to normal asap, but became aware of new emotions.  I felt guilty because I knew not everyone recovers.  I felt like a failure for getting the cancer in the first place.  I felt like my body let me down.  In time my emotions healed and negative ones were replaced with just feeling lucky to be alive.  My experience also messed with my confidence.  I worried through all the various scans, lab tests, and normal things like colds and flu were sources of doubt and fear.  That gets better too, especially as you get good news, but I have learned it is okay to be concerned, but I try to comparmentalize it to the day of a particular test.

5.  It just plain takes time.  After treatment getting back to work was so hard for me, especially the first few weeks, and I have an office job, so it wasn't physically a difficult job, but it felt tremendously hard.  I remember getting sick on the bus ride home once, luckily I had a kleenex at hand and no one knew and I made it home.  Here I went throughall the chemo and radiation without vomiting, and it wasn't until after treatment that it hit.  I feel like that was so long ago now. 

Well,

Hope this helps,

I am still learning,

Susan

 

LAST STRAW
Posts: 1
Joined: Mar 2016

My lady LOVE had endometrial cancer, which inturn went to vaginal serous carcinoma. after chemo  n external n internal radiation, the damage to her small intestines has resulted in several resections n about 8 to 10 in. of good intestines left. The Dr. says it"s radiation n scar tissue that has done the damage. She is now down to 70 lbs. which is 26lbs. under her normal wheight. She has a stomach tube for feeding but has trouble keeping anything but liquids down. ANY N ALL HELP with nutritional info would b GREATLY APPREACITED.

EZLiving66's picture
EZLiving66
Posts: 1403
Joined: Oct 2015

I am so sorry - that sounds horrible.  Why don't you come over to the Uterine Cancer board?  It's a lot more active and there are a lot of ladies there who have gone through radiation and could maybe help you.

Love,

Eldri

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Saw your posting I have vaginal cancer which came back in December( 1st diagnosed July 2014) 7wks ago I finished 12rounds of RAD due to a lesion on left side vulva this time RAD was different very painful entire vaginal and bottom of tush is swollen and hard even pain meds are not workingive tried soaking but it just burns having hard time walking Also have leakage from my rectum.. took your suggestions and went to uterine blog any idea when side affects will get better if swelling goes down that would help a lot please any help is appreciated

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

I had recurring vaginal radiation after 7 wkd hes left me very swollen and painful to urinate they put me on pain mess they're useless please any advice

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

I'm desperate its hard to walk I don't leave my house sitting down is so frustrating pleas plessehelp ive tried zinc Occident and caught an alerget reaction

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Sorry my last 2 entries were a mess I'm in so much pain from this last radiation which is not my 1st time if anyone has any idea on how to find comfort its been 7 wks but less than a yr since my last RAD due to recurring vaginal stage 4 cancer I had 12 very intense treatment PLEASE any suggestion I'm on pain meds (patch 25mg and percocet 10mg) and still I don't find comfort PLEASE help

2changes's picture
2changes
Posts: 24
Joined: Sep 2014

Has anyone had leakage from their rectum after radiation

yikesihavecancer's picture
yikesihavecancer
Posts: 5
Joined: Dec 2014

i am at my wits end with dealing with ongoing radiation dermatitis.seen Gyn.now dermotologist and it is still here and miserable.having me mupiricin ointment,them Cicaplast balm and still it persists.anybody use anything that actually works.heard about New Zealand m. Honey..and colloidal dressings and hydrogel but haven't tried these yet..it has been over a yr since treatment and it is so sore and unrelenting,it makes it miserable to walk and forget about sitting,and now it is beginning on the right side too...help if you can...it has been ongoing since February  and I am in such misery

Beaner54
Posts: 4
Joined: Aug 2016

I have been NED since 2011.  Last year I started to have leaky bowels.  The doctor prescribed Lomotil which I have little if no results with. He says there is not much he can do for this issue.  Over the past 5 months, I am wearing protection day and night.  I wake up soaked each morning.  YES, I am glad to be alive but this situation impacts my quality of life.  Anyone else dealing with this? and if so, has any medication helped.

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