Radiation Question

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jmaddox915
jmaddox915 Member Posts: 80 Member
I am going to have my treatment this coming Tuesday and we will be discussing the possiblity of doing some radiation.

To give a little bit of background, I am Stage IV and at this point I am on chemo for life. I have a tumor in my pelvic area and it is pressing on my uterus, bladder and rectum. This is causing me alot of uncomfortable feelings and pain. I am taking pain meds but it is not really helping me that much.

The oncologist is thinking about doing some radiation on that area to see if we can shrink it to help with the pain.

I have never had radiation before. Anyone have any experience or information you can share with me? Any questions I should ask?

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    JM
    Well, you know how your skin gets with a sunburn?

    It's going to be alot like that on the inside of you. There is going to be some permanent damage, there's no need to talk around that issue. But, you're already in pain now, though this may differ somewhat.

    The big thing about radiation is the fatigue. The treatments themselves do not hurt, but the effects are cumulative, so after about the 3rd week or 15 treatments in...you will start to lose a step or two and then gets progressively worse....usually up to a month or so after treatment ends.

    It's an overall bad feeling...just no zip and everything can be labored. I drove myself to the treatments and back home (65 miles round trip) every day - and then I would come home and go to bed for the day. Get up and nibble on something and go lay down some more.

    I was also doing 5fu the entire time as well, so that factored in.

    Radiation should do a number on shrinking the area and hopefully providing relief from the pressing. That whole area is so sensitive for a man or a woman even though some of our anatomical parts are different, it is a maze of nerves down there and radiation can irritate that.

    You spoke of the rectum...be aware that you may see some intestinal lining sloughing up in the toilet during a bm...it looks like the skin that a snake sheds...it's a little unnerving, I admit. But after you know what it is, well, you know what it is.

    This might not happen, but if it does, you'll be prepared.

    I hope this helps relieve some of this pressing pain for you - I can imagine uncomfortable is a word that simply doesn't cut it. Wishing you the best!

    -Craig
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
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    Sundanceh said:

    JM
    Well, you know how your skin gets with a sunburn?

    It's going to be alot like that on the inside of you. There is going to be some permanent damage, there's no need to talk around that issue. But, you're already in pain now, though this may differ somewhat.

    The big thing about radiation is the fatigue. The treatments themselves do not hurt, but the effects are cumulative, so after about the 3rd week or 15 treatments in...you will start to lose a step or two and then gets progressively worse....usually up to a month or so after treatment ends.

    It's an overall bad feeling...just no zip and everything can be labored. I drove myself to the treatments and back home (65 miles round trip) every day - and then I would come home and go to bed for the day. Get up and nibble on something and go lay down some more.

    I was also doing 5fu the entire time as well, so that factored in.

    Radiation should do a number on shrinking the area and hopefully providing relief from the pressing. That whole area is so sensitive for a man or a woman even though some of our anatomical parts are different, it is a maze of nerves down there and radiation can irritate that.

    You spoke of the rectum...be aware that you may see some intestinal lining sloughing up in the toilet during a bm...it looks like the skin that a snake sheds...it's a little unnerving, I admit. But after you know what it is, well, you know what it is.

    This might not happen, but if it does, you'll be prepared.

    I hope this helps relieve some of this pressing pain for you - I can imagine uncomfortable is a word that simply doesn't cut it. Wishing you the best!

    -Craig

    Hi Craig,
    Thank you for

    Hi Craig,

    Thank you for giving it to me straight. I guess you have to pick the lesser of the evils. Right now it seems like radiation may be the lesser evil for me.

    I also want to tell you what a help you are on here. I read your posts alot and appreciate the time you take in sharing with the rest of us.

    Sincerely,

    Joan
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Hi Craig,
    Thank you for

    Hi Craig,

    Thank you for giving it to me straight. I guess you have to pick the lesser of the evils. Right now it seems like radiation may be the lesser evil for me.

    I also want to tell you what a help you are on here. I read your posts alot and appreciate the time you take in sharing with the rest of us.

    Sincerely,

    Joan

    Thank you, Joan:)
    It really made me feel good to hear you say that:)

    -c
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
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    Radiation
    Hi Joan,

    My experience with radiation therapy was pretty benign. I only had a little bit of rash and Calmoseptine helped that a lot. I didn't have any fatigue at all and was even able to ride a motorcycle afterwards without any discomfort. The rash and some hair loss (after two years there's still hardly any hair on my legs) were so mild that I used to joke with the radiation team that I kept waiting to get super powers like the guys in the comic books. When I told them one day that I kept falling down when I'd try to climb up a wall, the lead tech started laughing so hard that he couldn't do my treatment! Have some fun with it and get some funny boxer shorts to wear to treatment.

    Ray/Doc
  • scared99
    scared99 Member Posts: 72
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    Joan,
    My mom had radiation

    Joan,

    My mom had radiation on a tumor in the same region as yours. Hers was her sacrum. She had 15 sessions of radiation and really did not have any side effects until about the 10th treatment. She had to use the bathroom a lot and had a burning sensation. She also said it caused her feet to tingle.
  • omrhill
    omrhill Member Posts: 125
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    Radiation
    I had 28 radiation treatments simultaneously with a 24/7 pump of 5FU. Before i tell you the bad stuff, let me tell you the good stuff. I had an almost total response to the radiation as it shrunk my 13cm tumor to nothing but a small area of ulcerated tissue. So... it can be very very effective.

    What were my side effects? I slept for six weeks. Starting about week 3 (15 ish treatments) i got really really tired. I worked from 830 - 230 each day, went to radiation, then went home and slept. I drove myself the whole time. I had diarrhea from the chemo (well controlled with meds) but that, combined with the internal rectal burns from the radiation, made for some really painful moments jn the bathroom. All of this started to clear up about 2-3 weeks after treatment stopped.

    Bottom line (pun mildly intended) is that the treatment is rough but it is temporary and the results are worth the fight.

    Good luck!

    Robin
  • YoungerSis62
    YoungerSis62 Member Posts: 28
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    omrhill said:

    Radiation
    I had 28 radiation treatments simultaneously with a 24/7 pump of 5FU. Before i tell you the bad stuff, let me tell you the good stuff. I had an almost total response to the radiation as it shrunk my 13cm tumor to nothing but a small area of ulcerated tissue. So... it can be very very effective.

    What were my side effects? I slept for six weeks. Starting about week 3 (15 ish treatments) i got really really tired. I worked from 830 - 230 each day, went to radiation, then went home and slept. I drove myself the whole time. I had diarrhea from the chemo (well controlled with meds) but that, combined with the internal rectal burns from the radiation, made for some really painful moments jn the bathroom. All of this started to clear up about 2-3 weeks after treatment stopped.

    Bottom line (pun mildly intended) is that the treatment is rough but it is temporary and the results are worth the fight.

    Good luck!

    Robin

    So glad you asked the question
    I will be starting my chemo/radiation treatments prolly 8/13 - the radiologist was/is on vacation, so my appointment is 8/7 for CT scan in the position (whatever that means - can anyone explain please?) -

    I keep thinking I can't be that bad, since they moved my appointment to 8/7 because of the guy's vacation. But then, this is the 3rd time it has come back, and they have explained 6 wks treatment, 4 wks rest, then surgery with perm colostomy.

    I'm scared about everything; the radiation, the chemo, the pain I know is coming. I sound so weak; but everyone around me tells me I am handling this so well. But here, I can let my guard down.

    I am very grateful to everyone that posts on this board. Sometimes I don't understand all the terms you guys use, and I guess I'm lucky for that because so many have been through so much more that I have. So I'm trying to draw on all of the strength found in these posts. But it's also good to hear when someone is feeling exactly like I am.

    Thanks for letting me vent...

    Marilyn
  • danker
    danker Member Posts: 1,276 Member
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    So glad you asked the question
    I will be starting my chemo/radiation treatments prolly 8/13 - the radiologist was/is on vacation, so my appointment is 8/7 for CT scan in the position (whatever that means - can anyone explain please?) -

    I keep thinking I can't be that bad, since they moved my appointment to 8/7 because of the guy's vacation. But then, this is the 3rd time it has come back, and they have explained 6 wks treatment, 4 wks rest, then surgery with perm colostomy.

    I'm scared about everything; the radiation, the chemo, the pain I know is coming. I sound so weak; but everyone around me tells me I am handling this so well. But here, I can let my guard down.

    I am very grateful to everyone that posts on this board. Sometimes I don't understand all the terms you guys use, and I guess I'm lucky for that because so many have been through so much more that I have. So I'm trying to draw on all of the strength found in these posts. But it's also good to hear when someone is feeling exactly like I am.

    Thanks for letting me vent...

    Marilyn

    youngersis2
    L had radiation for 5 weeks while getting 5fu with a chemo pump 24/7. Only side effects were diarrhea in week 4,5,& 6. Get script for LOMOTIL, if you get diarrhea. RADIAGEL from Wallmart will relieve any burning to your bunn. Good luck with it all. Don't be afraid- it's doable!!!
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
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    radiation
    I had daily radiation for 2 months on two separate areas for multiple distant lymph node mets. I tolerated it WAY better than chemo. Nausea and fatigue were an issue. I thought the first session went really well, but then an hour later I started vomiting. The same thing started the second day, and I couldn't stop. So I started taking Zofran right before radiation each day, and no more vomiting. I didn't have any trouble with my skin burning. I did put aloe on the areas every day at first.

    I did have weekends off, and I would start getting energy back Sunday night - just in time to go do it again for a week starting Monday. But it still wasn't as awful as my chemo fatigue. Unlike chemo I was able to drive myself too.

    I pray that if I need more treatment again now, it can be surgery or radiation - I tolerate those both well. Chemo not at all...

    I hope radiation brings you relief from your pain with minimal side effects.
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    Options

    So glad you asked the question
    I will be starting my chemo/radiation treatments prolly 8/13 - the radiologist was/is on vacation, so my appointment is 8/7 for CT scan in the position (whatever that means - can anyone explain please?) -

    I keep thinking I can't be that bad, since they moved my appointment to 8/7 because of the guy's vacation. But then, this is the 3rd time it has come back, and they have explained 6 wks treatment, 4 wks rest, then surgery with perm colostomy.

    I'm scared about everything; the radiation, the chemo, the pain I know is coming. I sound so weak; but everyone around me tells me I am handling this so well. But here, I can let my guard down.

    I am very grateful to everyone that posts on this board. Sometimes I don't understand all the terms you guys use, and I guess I'm lucky for that because so many have been through so much more that I have. So I'm trying to draw on all of the strength found in these posts. But it's also good to hear when someone is feeling exactly like I am.

    Thanks for letting me vent...

    Marilyn

    Radiation
    Hi Marilyn,

    I only had a light rash from radiation that really wasn't even uncomfortable. We all react different to the treatments because our cancers are all different. I think what they're talking about for the CT scan in position is where they locate the precise shape and location of the tumor and put markers and tattoos on your hiney so they can target it specifically. My tumor was so large and low down that it actually protruded outward and it became easier to have BMs as it shrank. Without it causing a blockage, things were able to move easier and the diarrhea I had before radiation stopped.

    Chemo was a different story and it caused my white blood cell count to crash. The best advice that I can give is to get copies of your blood work, learn what they are and mean and keep track of them on a spreadsheet. Knowledge is Power and knowing what's going on inside your body will let you adjust your diet, vitamin supplements and even help to guide your decisions on your treatment.

    God bless,

    Ray/Doc
  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
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    I agree with Kathryn
    I went through 5 weeks of radiation and had a little fatigue. The more pain was going 5 days a week. Surgery was June 19 and was 5 1/2 hours was rough but a least it was getting better everyday. Now CHEMO is a butt kicker, FOLFOX, and its every 2 weeks. I would much rather do another surgery than this chemo and I have until the end of this year! Good luck with your treatment.
    Sandy
  • YoungerSis62
    YoungerSis62 Member Posts: 28
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    Doc_Hawk said:

    Radiation
    Hi Marilyn,

    I only had a light rash from radiation that really wasn't even uncomfortable. We all react different to the treatments because our cancers are all different. I think what they're talking about for the CT scan in position is where they locate the precise shape and location of the tumor and put markers and tattoos on your hiney so they can target it specifically. My tumor was so large and low down that it actually protruded outward and it became easier to have BMs as it shrank. Without it causing a blockage, things were able to move easier and the diarrhea I had before radiation stopped.

    Chemo was a different story and it caused my white blood cell count to crash. The best advice that I can give is to get copies of your blood work, learn what they are and mean and keep track of them on a spreadsheet. Knowledge is Power and knowing what's going on inside your body will let you adjust your diet, vitamin supplements and even help to guide your decisions on your treatment.

    God bless,

    Ray/Doc

    Thanks Doc
    For explaining what "in the position" will be - I'm hoping my experience is similar with the BM's after radiation.

    Thanks to all for posting - again, I'm so glad the question was asked about radiation. I will hope for the best, and wait and see what happens - (oh so hard for Type A personality)

    Hugs Everyone -
    Marilyn