Side effects from radiation

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 said:

side effects from radiation

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.

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 said:

Pelvic radtion

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? 

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

alyvia0575 said:

My radiation side effects

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

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

alyvia0575 said:

My radiation side effects

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

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

sadiesmom17 said:

Radiation Side Effects

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!

 

 

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.

alyvia0575 said:

My radiation side effects

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

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.

LAST STRAW said:

someone HELP

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.

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