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external radiation external radiation

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  #1  
Unread 02-06-2002, 01:11 PM
external radiation

I have done some searches on radiation, but can't find the answers I want. So if anyone out there had external radiation 5 weeks , 5 days a week, could you please talk to me? I have a real need to know about side effects, how you felt during the radiation. What side effects you'll always have left. If you know where I can find this information I'd appreciate it, but there is nothing better than talking to someone who's "been there"

Susan
TAH/BSO lymph nodes last week 1-29-02
low grade enodometrial stromal sarcoma
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  #2  
Unread 02-06-2002, 03:50 PM
external radiation

Hi Susan , a big .

I had external beam radiation for 5 days a week for 5 weeks. Then I also had the brachytherapy (internal radiation).
If you click on MY STORY below you will be able to read about how I felt during the whole saga.

This is a great link to a radiation page . Hope it helps. I will try to find a few others that I used and post them as well.

http://www.oncolink.com/templates/tr...atment.cfm?c=5

I am going to be truthful here as I feel like I owe it to you, but please remember that every one is different in the way they react to radiation . One persons side effects will be different to the next.

I found it quite hard to go through. The first week was a breeze but then I started to burn , all around the vaginal and anal area. It was very uncomfortable and not much relieved it. I use to come here almost everyday and cry. But these girls cheered me on and honestly I owe it to them for getting me through. BUT...I didnt have a choice so I did what I had to do and it is over now. I am fine . I didn't have diahrrea but did have very painful urination ( I think this was from the urethra being burnt )
I drank alot of water and cranberry juice which did help , I think and also took a urine neutralizer every now and then.
It is important to use only those creams which the Dr reccomends as some creams have zinc in them and these react to the radiation burns.
As for side effects, I dont really have any now . I am all healed and even my pubic hair has grown back.. Once you have finished,you will probably be told to use a vaginal dilator to keep the vagina open. It scars from the radiation and can close up from the scar tissue. Not the nicest thing but it is important to do.

I hope this is a little bit of help and if there is anything you wish to ask please post here or email me .I will keep you in my prayers and tucked into my heart as you do the treatments . Much love always to you

If you do a search under these hystersister names you will find quite a few threads about our treatments:
Breezyb, Valentina and robynb .
  #3  
Unread 02-06-2002, 03:55 PM
external radiation

Here is another link

http://www.gcsq.org.au/patient/cx_radiotherapy.asp

and another one

http://www.cancerbacup.org.uk/info/radio/radio-8.htm
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  #4  
Unread 02-06-2002, 04:15 PM
thanks

Robyn I can't thank you enough. I need to know the uncomfortable honest truth. I had pretty much decided not to do the radiation until I talked with the nurse today. When I found how deep the tumor had gone, I knew from the research that this is a big factor in recurring tumors. So, we're scheduling it. In fact, I asked to start a week early, if the radiology Dr says ok, were finished by spring break, and I can then travel somewhere with my family. I don't care if I don't feel good. I'll sleep while we drive, and it'll be a good way to celebrate the end of this part of my journey.
I am one who needs to know what can happen and I knew someone here must have gone through this.

By the way no hormone therapy for me at all, and yet I'm doing pretty good. Although I wonder if I'm getting a little "off" in my memory. I'm having some "brain farts"

Anyone else have experience?
Susan
  #5  
Unread 02-06-2002, 05:02 PM
external radiation

Hi Susan,
I am glad that you decided to go ahead with the radiation treatments...
I had my last treatment on Dec 28, 2001... In oct I had the external treatments... 5 weeks of 5 days a week.. and then the last week of nov and all of dec. I had the internal radiation treatments.. once a week for 5 weeks....
The first week or so I did well... but then started having some diahrrea... I pretty much had that until about 2 weeks after the external treatments stopped... towards the end of the 5 weeks I had some burns... and urinary tract infections... but the most dibilitating was the fatigue.. I had my treatments every morning and then I went straight to work from there... and then naps every day afterwards... after the treatments ended the side effects went away pretty rapidily except for the fatigue... It just seems to hang on... It is getting better... some of it may be from me not taking any hrt... I am still learning about these things.. so not sure where my real ailments end and my hypochrondia begins...lol... since I found out about my cancer every ache and pain is a new worry... even though they may not be connected at all....
I guess the best advice I can give you is to follow the diet that the nutritionist gives you ... if you watch what you eat the diahrrea can be controlled... get lots of rest... that is how your body heals... drink plenty of water and cranberry juice... and just remember that this will only last a few weeks... the advantages far outweigh the side effects..... it will prob go faster than you realize...you can e-mail me if you want... I know how much talking to someone who has been there helped me.... this site is wonderful.....
[email protected] Sondra
  #6  
Unread 02-06-2002, 05:49 PM
external radiation

Susan,
I was wondering how you were doing!!!!!!! I can't give you any advice about radiation but am a leiomysarcoma survivor! I want to send the best of luck to you on your upcoming treatments!!!
  #7  
Unread 02-07-2002, 04:27 PM
external radiation

OH Susan, I'm so sorry the news wasn't better! I really was hoping your experience was more like mine!

It's an experience I didn't have to go through but you've gotten good feedback from others. I did want to share with you though a message from the first person I knew here who went through it--Molly

https://www.hystersisters.com/vb2/sho...threadid=37532


Way back when, Molly was the one who helped me persuade Kathy that we needed a Cancer Concerns board, so she has some posts way back. There were very few of us back then, but we pointed to Molly's experience as showing that our needs are different. She's a great lady and I wanted to let you know that there IS a good place to get to on the other side of this experience. She had aggressive uterine cancer so it was a fight.



You'll get there too.
  #8  
Unread 02-07-2002, 05:57 PM
radiation

Well Trish--I imagine if I went to your Dr. , maybe he wouldn't do radiation. I have checked and checked. But you know as well as I do that there is no information on this cancer. I haven't communicated with anyone yet who had low grade that had radiation treatments. It's out of the ordinary I think.
I called NCI and they had to look it up in some Rare Diseases Book, and they couldn't tell me how it's treated. They said each cancer is treated in it's own way. MD Anderson said no radiation.
Woman's Cancer Center said yes radiation+tamoxifen.
The oncologist that I am going to wants to treat this very aggressively. So I had to make a choice. I have to weigh the side effects of radiation with the possibility of a return and another surgery. :-P So what to do.... It infiltrated the lining of my uterus deeply enough that the chance of recurring tumors is greater. :-(
I set up the radiation but am also seeing a team of gyn oncologists in the future for their opinions. I think they'll just tell me yes, that is one way to treat it, or you can _not_ do radiation. From the research I have done, I see that the prognosis is fantastic with no return for over 5 years. BUT the chance of return later is very great. It can come back for up to 20 years. But then again, radiation makes no difference in chance for survival, just in chance for recurrance. So I guess I just want it to never come back even if I do have radiation side effects. My Mother in law says it's like buying some time.
It's a tough decision, but at this point, yah I'm doing it.
I wish I had the choice you had. They had told me at first that that's all I would face was the surgery. But--they changed that story.
By Easter, I'll be done.
In the meantime, I'm taking tamoxofin. It is giving me diahreah (geeze I can't spell that) and I'm tireder than I was. These apparently are side effects that will go away in a while. Anyone taking tamox??????
Thanks for listening
Back to the couch
Susan
  #9  
Unread 02-07-2002, 06:56 PM
external radiation

{{{Susan}}}

What a great attitude you have! You have so clearly looked at all the information (and lack of information) and made a decision you seem to feel comfortable with. I wish you well with your treatments. Feel free to come anytime you need some company or just a listening ear (eye?). We are always here.

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