Roll Call for External Radiation After Chemo

MAbound
MAbound Member Posts: 1,164 Member

I'm back to really having to face the possibility of radiation after I have surgery to do a 2nd pelvic wash in a few weeks. I checked out the link to IMRT information No Time For Cancer posted in the CQ thread and was wondering if that was offered because you still had a solid tumor present that they could aim at? I was totally gutted during my surgery, so I might not be able to have it as an option, but dose individualized, targeted radiation sure sounds better to me than one-size-fits all, so I'm looking into whether or not to bring it up with my oncologist.

 

I'm kind of in a catch-22 situation here. I don't know if I'm being rational or not, but radiation therapy is scaring me a lot more than having surgery and chemo did. I guess part of it is not knowing what kind of long-term side effects will pop up months or even a few years down the road as a result. The good news of having a positive wash means no radiation because there'll be cancer cells where the radiation won't reach, but that's not a result I really want. A negative wash means my oncologist thinks I should go ahead with the five and a half weeks of radiation before starting me on progesterone therapy. So, I'm back to researching radiation after chemo (as opposed to sandwich technique that was never proposed for me) to help me screw my courage up for this. 

I'm hoping by starting this new thread that others, especially maybe a year or two past this, would share what they dealt with, how they coped, and what issues they are  having to deal with long term. There's a lot of this information scattered in other threads and having consolidated would be a big help to those of us about to go this route or perhaps in the midst of it.

 

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Comments

  • janaes
    janaes Member Posts: 799
    Adviosly i havent had

    Adviosly i havent had radiation for my uterine cancer.  Not exsactly in the same boat as you, but inching closer to that decision myself.  Ive been thinking about it the last few weeks quite a bit. 

    As some of the ladies know, i had cancer 23 years ago. It was hodgkins lymphoma stage 4.  I did chemo and external radiation at the time.  I dont remember all the details but i do remember i did 5 weeks of the external radiation followed by about a month break at which point i had 4 more weeks of external radiation.  I went 5 days a week during that time.  My point in saying that is when i was diagnosed with this uterine cancer i have now, i was told by two of my doctors that the radiation from my cancer before caused this cancer. 

    So my doctors are telling me i will have internal radiation this time. My questions in my mind have been will this internal radiation really help my situation.  I know it is pretty tipical to have but what to know what internal radiation acually does and where my doctors are going to target the rdiation and why?  I do not want another cancer even twenty years from now so i want to do the best thing for me. Dont want this to scare you more because there are plenty of people who dont get cancer again after radiation.

    Thanks for starting this thread.  I dont know if any of this information is helpful but hope it was.

    Sending lots of love with the choice you need to make.

    Janae

  • beccabtown
    beccabtown Member Posts: 234
    I haven't been through

    I haven't been through radiation yet, but am getting ready to start external radiation in a week or two. That will be followed by several internal radiation treatments and then three more rounds of chemo. Like you, I am stage 3(c), grade 3. My tumors were mixed serous and endometrioid, and I had quite a bit of lymph node involvement in the pelvic and para-aortic areas. I had a positive wash at surgery (cancer cells present) but no sign of cancer outside those regions. The serous dx and lymph node involvement are the reasons for the rather aggressive use of radiation treatment in my case (following the sandwich regimen rather than waiting until after chemo). I've had PET & CT scans recently and there was no sign of cancer elsewhere, so the radiation is really all about zapping the lymph nodes and reducing the chance of recurrence. It will be a form of IMRT and very carefully targeted/individualized. It's my understanding that the brachytherapy to the vaginal cuff is even more common than external radiation for advanced-stage endometrial cancer, because that's a common site for recurrence.

    My biggest concern about having the radiation is lymphedema, which is something that is not discussed much on this board. Radiation does increase the risk of that, though it would be a concern for me in any case because of the number of lymph nodes they removed. I dread that a lot, though I'm managing not to worry about it until the time comes. But that is not enough to keep me from having the radiation. I want very much to be in the 47% of my cohort who survive to five years.

    I am curious about why they are having you go back for a second pelvic wash. Does that mean abdominal surgery, or can that be done laparascopically?

    Sorry that I can't offer feedback on side effects, etc. I will know more in a few weeks!

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited September 2016 #4
    Interested

    I had my 2nd external radiation today. Extended field because of positive paraaortic nodes. Caused major nausea yesterday but Zofrin hit it today. Stage 3c, Grade 3. Hitting with all they've got!

  • MAbound
    MAbound Member Posts: 1,164 Member

    I haven't been through

    I haven't been through radiation yet, but am getting ready to start external radiation in a week or two. That will be followed by several internal radiation treatments and then three more rounds of chemo. Like you, I am stage 3(c), grade 3. My tumors were mixed serous and endometrioid, and I had quite a bit of lymph node involvement in the pelvic and para-aortic areas. I had a positive wash at surgery (cancer cells present) but no sign of cancer outside those regions. The serous dx and lymph node involvement are the reasons for the rather aggressive use of radiation treatment in my case (following the sandwich regimen rather than waiting until after chemo). I've had PET & CT scans recently and there was no sign of cancer elsewhere, so the radiation is really all about zapping the lymph nodes and reducing the chance of recurrence. It will be a form of IMRT and very carefully targeted/individualized. It's my understanding that the brachytherapy to the vaginal cuff is even more common than external radiation for advanced-stage endometrial cancer, because that's a common site for recurrence.

    My biggest concern about having the radiation is lymphedema, which is something that is not discussed much on this board. Radiation does increase the risk of that, though it would be a concern for me in any case because of the number of lymph nodes they removed. I dread that a lot, though I'm managing not to worry about it until the time comes. But that is not enough to keep me from having the radiation. I want very much to be in the 47% of my cohort who survive to five years.

    I am curious about why they are having you go back for a second pelvic wash. Does that mean abdominal surgery, or can that be done laparascopically?

    Sorry that I can't offer feedback on side effects, etc. I will know more in a few weeks!

     

    2nd surgery

    I'm going through the 2nd pelvic wash because the first was suspicious, but not conclusive. Given all the concerns i have about having radiation, it seems worthwhile to do this to make the right decision for the next piece of my treatment. I need to have some confidence in whatever decision gets made to get through it. I only had 7 nodes on each side of my pelvis removed and only had one on each side positve. My omentum and paraortic nodes were negative so I was staged IIIa, grade three endometrial adenocarcinoma. The 2nd pelvic wash is being done laparscopically and it sounds like I'll be sent home the same day I have it. 

    Thanks for responding and for anything you have to share as you proceed. I'll be thinking about you a lot!

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited September 2016 #6
    MAbound said:

    2nd surgery

    I'm going through the 2nd pelvic wash because the first was suspicious, but not conclusive. Given all the concerns i have about having radiation, it seems worthwhile to do this to make the right decision for the next piece of my treatment. I need to have some confidence in whatever decision gets made to get through it. I only had 7 nodes on each side of my pelvis removed and only had one on each side positve. My omentum and paraortic nodes were negative so I was staged IIIa, grade three endometrial adenocarcinoma. The 2nd pelvic wash is being done laparscopically and it sounds like I'll be sent home the same day I have it. 

    Thanks for responding and for anything you have to share as you proceed. I'll be thinking about you a lot!

    spelling

    the first wash was suspicious, not suious. The website is changing my spelling for some reason and I couldn't even fix it using the edit button. First time that's happened to me! <grin>

  • MAbound
    MAbound Member Posts: 1,164 Member
    MAbound said:

    spelling

    the first wash was suspicious, not suious. The website is changing my spelling for some reason and I couldn't even fix it using the edit button. First time that's happened to me! <grin>

    Weird

    Website is still messing up the spelling so you'll have to figure the word out for yourself! Sorry!

  • brissance
    brissance Member Posts: 192
    You Are So Cool

    Ma I just absolutely love the way you handle these difficult issues.  You have learned enough to be able to question and to follow up.  You are truly an example for the rest of us to attempt to follow.  I wish I could give you some info but I am of no use but I do wish you the best and have every confidence you, young lady, could handle and defeat any situation.  You go, Girl!

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited September 2016 #9
    Radiation

    I had 28 external radiation session in Feb. 2013 plus to of the internal as part of the sandwich treatment.  I was much more afraid of the radiation than I was of the chemo, mostly because of personal reasons.  My father had radiation 55 ago for,lymphoma and it burned a quarter size hole in his groin that never healed.  We are lucky that cancer treatment has gotten more humane over the years.

    My side effects during radiation were not to bad, mostly fatigue.  My treatment was scheduled for late afternoon so I could get in most of my school day.  I did have some problems with diahria but I was able to control it with Imodium.  Luckily my classroom was close to the bathroom.  The doctor did have me on a low fiber diet, no fresh fruit or vegetables and no whole grain.  

    I was hit with radiation in nine different places and the whole thing lasted for about 20 minutes.  It was my understanding that they radiated the places where the surgeon had sliced and diced.  The hardest thing for me was holding still for that long and I was afraid that I would fall asleep and roll of the rather narrow table.  I never even got a red mark on me.  My energy came back pretty quick after I was done.

    i do have lingering side effects from the radiation, all involving the bones in my pelvis.  My bones are just plain weaker.  I have a stress fracture in my left side and I have had a lot of trouble with my blood counts after chemo since radiation. Both atributed to the radiation.

    Hugs and prayers, Lou Ann

  • beccabtown
    beccabtown Member Posts: 234
    Lymphedema?

    Lou Ann, thanks for sharing. It is sobering to hear that even though you thought the side effects were not severe you still have lasting effects. It sounds like lymphedema has not been a problem, but did anyone ever talk to you about it? Thanks. 

  • Lou Ann M
    Lou Ann M Member Posts: 996

    Lymphedema?

    Lou Ann, thanks for sharing. It is sobering to hear that even though you thought the side effects were not severe you still have lasting effects. It sounds like lymphedema has not been a problem, but did anyone ever talk to you about it? Thanks. 

    I didn't lose any lymph nodes

    I didn't lose any lymph nodes during surgery, so I shouldn't have a problem with that.  All in all,I have been very blessed.

    Lou Ann

  • Soup52
    Soup52 Member Posts: 908 Member
    I had my 28 external

    I had my 28 external radiation after surgery and then the 3 brachytherapy before chemo. I haven't seen anyone else on the board having it this way. I guess I was a little ignorant about radiation though I was given some education before starting it and I really didn't find this board until I had already started radiation. I have not developed lymphodema so far and it has been about 7 months since I ended radiation. I do have some lasting bowel problems from it. Sometimes I do ok and other times I have constipation which I am finding some ways to deal with it. Overall the bowel problems were the greatest problem for me. 

  • MAbound
    MAbound Member Posts: 1,164 Member
    Lymphedema Link

    becca, I didn't lose as many lymph nodes as you did during surgery, but lymphedema was on my radar pre-op and when discussing radiation and you may find this link helpful if you haven't already seen it.:

    https://www.mskcc.org/cancer-care/patient-education/lymphedema-legs-minimize-your-risk

  • MAbound
    MAbound Member Posts: 1,164 Member
    Lou Ann M said:

    Radiation

    I had 28 external radiation session in Feb. 2013 plus to of the internal as part of the sandwich treatment.  I was much more afraid of the radiation than I was of the chemo, mostly because of personal reasons.  My father had radiation 55 ago for,lymphoma and it burned a quarter size hole in his groin that never healed.  We are lucky that cancer treatment has gotten more humane over the years.

    My side effects during radiation were not to bad, mostly fatigue.  My treatment was scheduled for late afternoon so I could get in most of my school day.  I did have some problems with diahria but I was able to control it with Imodium.  Luckily my classroom was close to the bathroom.  The doctor did have me on a low fiber diet, no fresh fruit or vegetables and no whole grain.  

    I was hit with radiation in nine different places and the whole thing lasted for about 20 minutes.  It was my understanding that they radiated the places where the surgeon had sliced and diced.  The hardest thing for me was holding still for that long and I was afraid that I would fall asleep and roll of the rather narrow table.  I never even got a red mark on me.  My energy came back pretty quick after I was done.

    i do have lingering side effects from the radiation, all involving the bones in my pelvis.  My bones are just plain weaker.  I have a stress fracture in my left side and I have had a lot of trouble with my blood counts after chemo since radiation. Both atributed to the radiation.

    Hugs and prayers, Lou Ann

    What issues with your blood counts?

    Is it your immune system impacted or your red blood cells as far as your blood count issues? It makes some sense since there's a lot of marrow in your hip bones. Did you have bone scans prior to or after radiation? Have you had to take any osteoporosis drugs?

  • Lou Ann M
    Lou Ann M Member Posts: 996
    MAbound said:

    What issues with your blood counts?

    Is it your immune system impacted or your red blood cells as far as your blood count issues? It makes some sense since there's a lot of marrow in your hip bones. Did you have bone scans prior to or after radiation? Have you had to take any osteoporosis drugs?

    My red blood cells and

    My red blood cells and platelet dropped very low.  My white,blood cells stayed pretty good because I had the Neulasta shot. my platelets came back enough to go ahead with the next chemo treatment if we waited an extra week. My doctor also had to lower the dosage of the chemo drug several times The red cells dropped low enough that I had to have two blood transfusions.  Biggest problems came with Taxol.  Since I am off of chemo and on immunotherapy my blood counts have all come back to almost nornmal.  I have not had any bone scans only CT scans and an MRI.  The CT scan showed the stress fracture and weakening in my spine and pelvic bones. I don't know if it had anything to,do with the problem that I am having with my SI joint in my right hip, but I do wonder.

    Lou Ann

  • Kvdyson
    Kvdyson Member Posts: 789
    28 external beam radiation treatments

    MABound, I had 28 external beam radiation treatments sandwiched between 6 rounds of chemo. I received a very low-dose of radiation targeted at: 1) the surgical margins, 2) the lymph nodes that are adjacent to the margins and 3) the vaginal cuff.

    My rad-onc told me that because of the very low-dose and the specific targeting (3-D CRT), he expected no long-term side effects and only mild short-term ones (so far, he has been proven correct).

    Based on that information and the aggressive nature of my diagnosis (uterine MMMT), I decided that the potential benefits outweighed the potential risks. I have no regrets with this decision. I have been NED since June 2016.

    Everyone needs to make the right decisions for themselves. Wising you peace with whatever you decide. Kim

  • beccabtown
    beccabtown Member Posts: 234
    edited September 2016 #17
    Who worked during radiation?

    I'm curious: Who continued working during radiation? Who found that they needed to take time off?

    Thanks for the lymphedema link, MAB. I don't have any symptoms yet, but have already seen a physical therapist for baseline measurements and an early discussion. The good news is that compression stockings now come in all kinds of colors and patterns--won't have to wear the thick fleshtone ones if it comes to that.

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited September 2016 #18

    Who worked during radiation?

    I'm curious: Who continued working during radiation? Who found that they needed to take time off?

    Thanks for the lymphedema link, MAB. I don't have any symptoms yet, but have already seen a physical therapist for baseline measurements and an early discussion. The good news is that compression stockings now come in all kinds of colors and patterns--won't have to wear the thick fleshtone ones if it comes to that.

    I worked.

    I worked through all 28 days of external radiation. They were nice enough to schedule my appointment for later afternoon and a fellow teacher watched my students for the last half hour.  You can do.things like,that at a small school.  I had the two brachytherepy treatments on days the school went skiing and all the other teachers and few parents watchEd my kiddos.  By watching what I ate and Immodium, I made it.  It was a lot easier than I thought it would be

    Hugs and prayers, Lou Ann

  • cindy0519
    cindy0519 Member Posts: 173
    edited September 2016 #19
    I too worked through all 28 external radiation treatments

    I too had 28 external radiation treatments after I completed my chemo in April.  Like kvdyson my rad-onc told me that because of specific targeting, even with a higher dose radiation, she expected no long-term side effects and only mild short-term ones. My short-term ones were primarily diarrhea, nausea, and mangbeing tired.  My treatments were first thing in the morning and I went to work immediately there after.  I did find that I was exhausted by 3:30 or 4:00 and often napped for an hour to an hour and a half upon getting home each evening in addition to going to bed earlier than normal.

    I did have a episode of bloating and quite a bit of pain in my lower abdominal area a couple weeks ago.  A CT showed it was a bit of inflamation of the intestinal lining, likely from the radiation. It was easily treated with a bit of pain medication and an anti-inflamatory (Naproxin).

  • Kvdyson
    Kvdyson Member Posts: 789
    edited September 2016 #20

    Who worked during radiation?

    I'm curious: Who continued working during radiation? Who found that they needed to take time off?

    Thanks for the lymphedema link, MAB. I don't have any symptoms yet, but have already seen a physical therapist for baseline measurements and an early discussion. The good news is that compression stockings now come in all kinds of colors and patterns--won't have to wear the thick fleshtone ones if it comes to that.

    Working through treatment

    Hi Becca, I worked through both chemo and radiation treatments. I have a desk job so it wasn't too hard for me. Also, my husband cooks so I didn't have to expend energy on that. Kim

  • MAbound
    MAbound Member Posts: 1,164 Member
    It helps

    Knowing you were able to work through radiation therapy, Lou Ann, is helping me to calm down a bit as is hearing some of the things done to cope with side effects on this thread and some others. I still hate the unknown stuff that may pop up down the road...getting this cancer in the first place was a nasty enough surprise without getting any more!

    It's interesting how many different  ways there are to deliver radiation therapy. I've read about external, bracchy, and sandwich, but IMRT, extended field, 3-D CRT are all new to me. Seems like there's always more to learn about! (((to you all!)))

    CQ I'm there with you in my thoughts and hoping you had a better day today!