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Radiation to pelvis

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

Wondering if anyone could help with information about radiation to the pelvis?

Where the side effects manageable, and what were they? 

Did the treatments work? 

Was it used while NED or to shrink tumors?

Did the treatments create any scar tissue for you that you are aware of?

 

I have never had radiation before and I am in the process of gathering multiple opinions on my next course of action.  So far this treatment has sounded the most promising, but may come as too heavy of a price to pay as my insides are very fragile just having two major surgeries within the past 3 months and a history of making lots of mean scar tissue and a blockage of the small intestine. I currently have only 2/3 small intestine for pipes left and can't afford to damage any remaining. 

Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

There are possible short term and long term side effects.  As you read further, remember the word "possible".  Not all have all.

Short term can be fatigue, radiation "sun burn", diarrhea.

Long term effects can be infertility or early menopause, hip joint pain.

I am sure there are others for both lists, and your doctor should give you some documentation to read before treatments begin to insure you know what the possibilities are.  Ask particularly about the impact to the intestines.

Radiation can be used either in mop-up mode, or to shrink tumors.

I hope that you and your doc will find the treatment which is best for your situation.

Marie who loves kitties

 

Dyanclark's picture
Dyanclark
Posts: 272
Joined: Apr 2012

Read all the long term side affects.  My husband had surgery  & was cancer free after surgery to remove tumor.   Dr. recommended radiation as prevention.  He did 5 weeks of radiation  in 2008 and was in remission three years.    Fast forward he did 5 months of chemo  Feb 2012 - June 2012 (avastin & Oxy) .  Had to start chemo again 2 months ago Xeloda and Irinotecan.  

We will see what happens.

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

Thank you for your story...this also is my situation.  I am currently NED from surgery, but one opinion I am getting is that radiation could cure this from coming back again.  So, my next question to you would be exactly that, was the recurrence in the same place or is the met somewhere else?

 

Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

I would suggest a second opinion since you are currently NED. 

How long has it been since your surgery?  If you already told this...sorry to ask again.

My sister has uterine cancer, and the best info I had on her situation was that if radiation was not done withing 6 weeks after surgery, its effectiveness on preventing spread was deminished.  In her case they already found spread so no radiation at all was recommended after surgery.

I don't usually like to refer to statistics or ask docs about them, but in this case I think I would want to know more regarding  the success of those who do and those who don't do radiation.  Getting radiation in the "hopes of a cure" is a serious decision when you don't currently have any evidence of disease.

Wishing you the best regardless of what you choose.

Marie who loves kitties

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

I am 3 months out from tumor removal surgery, but had another surgery just 7 weeks ago.  I unfortunately had some complications that kept me in the hospital and back for another major surgery just 5 weeks after the first. It was really big and I am not fully recovered from it yet...still in pain at times with internal stitching and abdomenal muscles.  I am sure that is why some are not recommending radiation as an option.  I seem to be stuck not matter which way I go!

I do not have to ask about statistics...every single doctor I have seen has been sure to tell me I do not fit into any part of the statistical data that has been gathered to date.  My situation is unique in every way.  My greatest issue is trying to make the right decision to hopefully stop this or at least give me the best chances to stop mets. again. I feel like I will certainly be behind the eight ball at that point.

THANK YOU, THANK YOU, THANK YOU  for all of your help!!! Cool

 

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

Thank you for your story...this also is my situation.  I am currently NED from surgery, but one opinion I am getting is that radiation could cure this from coming back again.  So, my next question to you would be exactly that, was the recurrence in the same place or is the met somewhere else?

 

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

I had 36 round of radiation to shrink a rectal tumor so that it could be surgically removed. Radiation shrunk tumor and it was removed, Ok that was the good. The bad, you will go into early medapause, you will be burned inside and for the most part you whole undercage will be burned.  This putting harshly but no other way to put it, everything will still work but you may have long or short term sexual damage. ( feeling will be deminished for a short or long term period) pain will be sever to mild as time passes. After time this pain will pass and everything will work but it will be differnt,  Most Doctors and others will not tell you these things but thats because want your tumors shrunk and that is the most important, 

I am not saying don't do it if it will save your life, do it.  If you are married ( i am ) your husband needs to know this will change you sexually ( this maybe perm or temp and you will need to heal).  He needs to give you this time no matter how long it takes and you need to have this conversation with him and he needs to understand. ( some men can't handle this).  

I know this is something no one is going to tell but I am because I wish someone had said it to me so I could have handled this part better ( my husband does understand that it changed me for the long term, not to scare you but I am basically sexual dead. I have no good feelings there and no desire.) Not to say this will be you but it is possible.

sorry  , I am not candy coating this. We must be able to talk about the hard stuff as well as the easy.  I am stage 4 colon/rectal still in treatment but alive and for the most part healthy  going on 4 years this may.

Hope this helps some

I wish you all the best of courage to do what is necessary to live. 

Penny

 

 

 

 

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

Depending on the direction and the intensity of the rads, there is no other way to have it than to end up with some damage.

 

Just like Penny, I had my whole sexual experience change...more from scar tissue/burns to my vagina...BUT, my life partner and I talked about it (it helped that he is a GYN), and with a bit of patience, we have found our ways around it....

For me, it's best to be on top, controlling the action and the angle, at the beginning.  Ultimately, we can switch, after things get a bit loosened up.  Also, sometimes we use personal lubricant at the beginning, until I supply my own....

Because of the position of the tumor, radiation also left me with a weak right hip.  Added to that is osteoporosis that was brought into full bloom from the chemo for both the rectal and the breast cancer.  I'm just careful, and never put all of my weight on my right side (a lesson learned WAY before cancer...when I started snow skiing).  I suppose someday (maybe age 80...*grin*) as I get older, I might have to consider a replacement....but I have a few years yet using my 'original equipment'!

Do I regret radiation?  Absolutely NOT!!!!  The combo of radiation and chemotherapy pre-surgery all but eliminated my golfball-sized tumor, which was pushing against my tailbone and causing EXTREME pain!  I could only get out of bed to go to the toilet...and THAT was a MAJOR achievement!

What does your treatment team say?  Is there a remarkable change in the life expectancy with radiation?  Is it 'optional'....mine was NOT! (although, interestingly enough, my following surgery of rectum and sig colon removal WAS left up to me...).

So was born my mantra:  "It's not what you are left with, but what you DO with what you are left with, that makes all of the difference!"

 

Kudos that you are doing the research....ahead of time!  I HATE those kinds of surprises!!!!  (An emerald ring from Columbia from my beau...NOW you are TALKING!!!!!).

 

Hugs, Kathi

 

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

Hi Kathi,

Thank you for sharing your story...My team is at odds on this one.  This radiation would just be to stabilize the area and possibly cure.  But, I am NED and could be cured from my hysterectomy.  Some of the issue is, I have no colon, I have just had a complete hysterectomy and a small bowel obstruction which created loss of small intestine as well.  So...my remaining small intestine is literally sitting on the plevis they want to radiate.  I cannot afford to lose any more intestine without risking permanent TPN (IV nutrition).  So I weigh daily...possibly cure cancer vs possibly life threatening side effects. (for my insides).

Best to you!!

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

Thank you Penny...I appriciate your honesty. I am not one who likes anything candy coated...throw it at me and if I need to cry then so be it...but I would rather cry knowing the truth than be lied to!   I am searching for honesty, so thank you again. 

Because I am NED, I believe that is why I am getting so many different opinions.  This would be to stabilize the area for a better chance for cure.  No one can say if it is going to come back or not...the only thing most seem to agree on is that this recurrence I just had was probably due to localization not lymphatic spread. I had just finished a heavy dose of chemo 5FU/oxali 12 rounds for this to appear in only one month.

I just had a complete hysterectomy .. so much of those side effects are already there.  The greatest concern for me and my husband is the damage that could happen to the intestine/my health.  It is just chances... we get that...but I suppose we are trying to weigh out to which degree are they greater. 

Are my odds of cure better with radiation? 

Are the risks of life threatening complications just as high?  

Is the risk of damage equal to the risk of recurrence (which apparently is very very high)? 

If I do not have radiation, is surgery possible in the pelvis?  Remembering I have become the queen of scar tissue.

Is the risk of scar tissue and future intestinal blockage too great of a risk?

Thank you again for your honesty....

 

John23
Posts: 1832
Joined: Jan 2007

Get other opinions from surgeons that are not of the same group or organization. Do not ever take one individual's opinion for the course your life will take. Physicians are human, not Gods, and all they have are -opinions-.

Radiation is all encompassing; it does not simply kill the tissue it is aimed at, it damages surrounding tissue; it is a carcinogenic.

I have a cyber friend (woman) that is presently dying of a years ago radiation treatment. Her insides are rotting away and leaking fluid through her vagina and there is nothing anyone can do to help her.

You may be fortunate and have no repercussions, but -please-, get other opinions!

Best wishes for you,

John

 

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

Thank you for that information John, that is very important for me to know with my fragile insides.  I have gone for one other opinion outside of the group and have another tomorrow...this I know is very important.  I have valued all of the advise you have posted to me!!

Chelsea71
Posts: 1170
Joined: Sep 2012

Very important to preserve the small intestine you have left. You can only lose so much small intestine. The body needs it to live. I'm sure you know this already. I would be very cautious about the radiation. Seems to do a lot of damage. There are people here now likely due to problems caused by radiation treatments years ago. Take everything each doctor says with a grain of salt. They are only giving their opinions. Talk to as many good oncologists as possible, do your own research and follow your gut.

lesvanb's picture
lesvanb
Posts: 908
Joined: May 2008

I have had radiation to both the pelvis for a rectal tumor and to the lungs. Though I have minimal side effects from the pelvic radiation (I do have stiff hips and some dimished sexual respons), I have noticed the most side effects from the lung radiation (SBRT to 4 lobes for one met in each lobe). Radiation does cause inflammation and scar tissue and the effects of the treatment continue after the treatment has ended resulting in short term and long term side effects. I am now 2 years out from lung radiation and just now are side effects dimishing so that I do not have to use steroids (inhaler) very much. For me the radiation was also  a shot at a cure when the other option was chemo (though now surgical techniques have improved a great deal). Currently the SBRT stats for containment are 75% which is what happened for me. I had one of four mets start to slowly grow Jan '12 and that was removed surgically in July '12. I am now NED with nothing new appearing since June '10. And I still have 75% lung function and started with over 90%. Tomography (photon beam) is a more foused radiation that is now being done at some major cancer centers such as MD Anderson which may be a better option then even SBRT.

I think you are between a rock and a hard place -(((hugs)))- but you may not have enough colon to tolerate the resulting inflammation and scar tissue. from radiation.

Thinking of you.

all the best, Leslie

hippiechicks's picture
hippiechicks
Posts: 378
Joined: Sep 2012

I am thinking the same thing...I have no colon at all and only 2/3 small intestine.

Thanks so much for the input.  Every bit of information helps!!

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Hiya!

I agree with what you said...

I can tell you from a male perspective, that radiation to the pelvic area...and the lungs....are indeed no picnic. 

I did it to shrink a tumor, which prevented me from a colostomy by just a couple of centimeters...it was pretty close...

They hit both my hips...and my lower back...and up the rectum....I suffer pain in the hips and the back...there was alot of sexual dysfunction.....for a couple of years...things were dead as a doornail.

Doctor told me my intestines were "Fried Like Bacon."  And the subsequent resection with inflamed intestinal lining and associated scar tissue were a real challenge for me to overcome.  For the first 2 years after that, the bowels were all over the place....some days I couldn't even get to work....others I'd make it and then have to leave.

It was really 4 years for me before my bowels retrained...I see now why they do ostomies...that tissue took forever to heal....and unfortunately, the bowel gets used daily.....and alot coming out of surgery. 

It's a hard decision to make.  The effects are permanent.

I had done my 2nd lung surgery when I last saw Leslie...and her and the gang were just speeding by me...I was literally at the tail end of the group, several blocks behind them and just couldn't keep up.

Leslie, probably sees now how hard that was for me to do now, eh Leslie?

Radiation can be effective...but as with any of it...it does come with a price to pay.

Best of luck with your decision.

-Craig

jen2012
Posts: 1255
Joined: Aug 2012

My husband hsd testicular cancer 12 yrs ago...treated with radiation. There is a good possibility that radiation caused this rectal tumor...so Im not a big fan of radiation. However there is a good chance that if a dr recommended it now as a chance of cure he would go ahead and do it.

Good luck with your decision!

Helen321's picture
Helen321
Posts: 928
Joined: May 2012

Hi I just finished radiation, I am about to do my surgeries so I have a different standpoint but as far as side effects I had hip pain (not able to speed walk at all), at first I felt okay but toward the end I had fatigue, sunburn feeling in the crease of the leg and diarrhea,  if you have hemmorhoids, going to the bathroom can be excruciating.  Mine was to shrink the tumor ank I also did Xeloda at the same time to kill the cells in the area.  Mine was successful according to my first scan.  Not a smidgeon showed up.

Helen321's picture
Helen321
Posts: 928
Joined: May 2012

oops

Helen321's picture
Helen321
Posts: 928
Joined: May 2012

Oh I'll add what someone else said also, there are some sexual dysfunction issues and lack of desire. 

thelomitian
Posts: 4
Joined: Aug 2012

Hi,

I had radiation to shrink my tumor before surgery.  The radiation treatments really worked for me, my tumor disappeared.

My side effects were diarrhea, several times a day and fatigue.  I didn't have any sunburn, I would put aloe lotion on my skin to prevent it.

Best Regards.

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