Radiation to pelvis

Dyanclark said:

Radiation

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.

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 said:

SIDE EFFECTS.

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

 

 

 

 

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....

KathiM said:

Penny, I agree....knowledge is power!

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

 

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!!

lesvanb said:

Yes, a difficult decision

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

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!!