Update: To add radiation or not after chemo

I was diagnosed in October with Stage IIIA endometrioid adenocarcinoma after a total debulking surgery.  My gyno oncologist prescribed 6 cycles of taxol/carboplatin and I just finished my 2nd infusion on Wednesday (2 down, 4 to go!).  When reading the posts in this forum, I noticed that most of you received brachytherapy or external radiation after completion of chemo.  

I asked my doc about this and he told me he is going to recommend brachytherapy at the end of my chemo.  We did not discuss the details, because he was already running 1 hour late due to a prior emergency.  Could you please share your experience with brachytherapy, what it entails, how long after chemo did you start brachytherapy, how many treatments and frequency, side effects, etc?

Thanks -Laura

Comments

  • MAbound
    MAbound Member Posts: 1,168 Member
    Same Stage & type

    I have the same stage and type of cancer as you. Mine is a grade 3 which makes me high risk for recurrance.

    What was also important was that I had one positve pelvic lymph node on each side, 80% myometrial penetration, and my cancer originated just above the uterine neck. Pelvic and/or vaginal radiation is done because that is where recurrence is most likely to occur. Having radiation there ups your odds for preventing recurrence in the vaginal cuff area, but it does not guarantee it. After that, recurrence is most likely to occur in the lungs so expect chest x-rays when you have check-ups after treatment. If you don't have pelvic radiation now and end up having a pelvic recurrence, they'd be able to treat it with radiation, but that's not an option for recurrences in areas previously treated with radiation therapy. 

    The stage, lymph involvement, myometrial penetration >50%, and origin in the lower part of the uterine body are all indicators for the need for radiation or not in addition to chemotherapy. Since I had all of the indicators I had both pelvic radiation with a vaginal boost which is basically brachy delivered externally instead of internally. 

    Everyone is different and different doctors have different views on how to treat, so that may be why yours is recommending just brachy treatments. If you do have those other indicators that would recommend the inclusion of pelvic radiation, I would get a second opinion about it. Frontline treatment is your best chance for achieving a cure instead of facing chronic treatment to keep this cancer at bay, so you want to cover all of your bases rather than trying to go the easiest route. On the other hand, you don't want to over-radiate if there isn't a need for it. 

    They usually give you a few weeks to recover from your last chemo before you go for radiation. I didn't have internal radiation so I can't speak to what that is like. The most commom side effects are fatigue, diarrhea or constipation, and bladder irritation. You'll need to continue being vigilant about drinking lots and lots of water. If you aren't taking a probiotic, start because that has helped a lot of us. 

    You've got some time to ask questions about your care plan as you have a ways to go yet with chemo. Most of us freak out about radiation when we hear all of the possible side effects, but remember it's just like the TV commercials for drugs. They have to tell you about them all, but that doesn't necessarily mean that all of them will happen to you. There's a lot of discussion on the board about radiation, so keep on reading for things that helped others cope with issues that came up from them, but remember we all come with different strengths and weaknesses when we enter treatment, so what happens to some of us doesn't happen to all of us. Stay strong and do what is in the best interest of your particular circumstances.

  • ncg007
    ncg007 Member Posts: 138 Member
    second opinion

    Laura,

     

    I was stage IIC1 and my radiation treatments seem to be unique, I had my radiation the same time as chemo. The first day of my 28 external radiation treatments was also the day of my first of six rounds of chemo.  Everybody's treatment plan will depend on their unique diagnosis.  As MA suggested, I strongly urge you get a second opinion and also find out from your current dr what was his deciding factor to do external.  Best of luck to you.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    my diagnosis (dx) was UPSC

    my diagnosis (dx) was UPSC Stage 1A Grade 3.  treatment was the "sandwich".  3 chemo/25 external radiation & 3 brachy/3 chemo.  The radiation to your pelvic area - there is a LOT of bone marrow there -- takes a toll on your blood counts.  I had a hard time wrapping my head around the radiation, and probably like Soup because the doc was a jerk.  

    I would double recommend MAbound's suggestion of probiotics.  The dietician I met with showed my a study that was done with 40 women with cervical cancer.  1/2 got probiotics and 1/2 did not.  In the study, the women who did not take probiotics who were hospitalized with dehydration from diarrhea was so high it seemed to be an incredible cruel study.  I took probiotics before but I shared the information with people I worked with and some of the women started taking probiotics. 

    Everyone has to do what is best for them and everyone's reaction to a treatment is different.  I would suggest asking lots of questions.  I wish there was a simple answer.

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    I was diagnosed in October

    I was diagnosed in October after surgery with 3a, grade 2 endometrial adenocarcinoma. I had 1 chemo treatment, 5 to go. I did have reaction with Taxol and an getting desensitization. If that doesn't work they will switch me to doxil which will involve 7 more treatments, so I'm hoping desensitization works. I just met with my radiologist this week, and I really like him. My doctors are recommending 25 external targeted beam radiation treatments with no brachytherapy. However, he said the doctors will all get together and evaluate again once chemo is complete. Originally they were planning on doing sandwich therapy but as I had the reaction and had a bit of a delay, they want me to finish chemo, wait 3 weeks, and then begin radiation.

  • ckdgedmom
    ckdgedmom Member Posts: 166 Member
    USPC Stage 4b

    I was diagnosed November 2016, had full hysterectomy November 2016 and then started chemo dec 23, 2016. Had 6 taxol/carboplatin infusions 6 weeks apart and finished in April.

    My radiology oncologist discovered cancer in two lymph glands in my neck in addition to 2 in my pelvis. The ones in my neck had shrunk after chemo so we put them on "watch" and he did 25 rounds of external radiation and 3 rounds brachy. 6 weeks after finishing that my scan showed the lymph glands in my neck growing again so I had 30 ronds of radiation to those lymph glands. I am now awaiting my scan on Monday and I see my (wonder marvelous amazing loving kind best doctor ever) radiology oncologist.

    Chemo was rough on me...I gained weight with the steroid and a lot of fatigue.

    With radiation I had mild fatigue, some diarrrhea, a bit of nausea but mostly felt pretty good. I exercised (yoga or spin class) almost daily (5-7 days a week) throughout both series of radiation. My doctor called me "crazy" when I did 2 hours of yoga after my first brachy but I felt fine...he came to realize that for me the exercise was important to my well being.

    As to brachy---he  inserted a device (called a Capri unit) in my vagina. It had several "leads" on it that were attached to a machine later. The device was immobilized inside me with what we laughingly referred to as the "sumo wrestler diaper" and they took a scan of me. The doctor and the physicist conferred about how much radiation was tto be delivered (this usually took them a while to calculate so I was just hanging out in the bed watching tv and not allowed to move about) and the leads were connected to the machine that delivered the radiation. the radiation part lasted only about 10 minutes or less...it didn't hurt but it tickled a bit. 

    Throughout treatment and after I was instructed to use the dialator (they gave me one) as I am single and without a hubby/boyfriend/partner...it doesn't hurt but is annoying...

    hope this info helps...

    good luck!

    xoxo

    Anice

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    radiation

    I had 5 brackys - started 3 weeks after last chemo. Had a marvelous oncolo radiation doctor - he told me exactly what to expect - did every treatment himself and it was as easy and comfortable as possible! Hope you can have the same experience.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Laura,

    Laura,

    If you haven't read this thread: 'Let's Talk About Radiation' please find the time to do so. Several of us discussed the pros and cons and our experiences in the decision making process and the actual physical experience once we decided to do it. I think it will help you.

    Best of luck in your decision. For me, brachy was the easiest part of my frontline treatment.

    Love and Hugs,

    Cindi

  • Soup52
    Soup52 Member Posts: 908 Member
    edited December 2017 #9
    I had endometrial 111C clear

    I had endometrial 111C clear cell. I’m the only one ive seen in this group to have radiation before chemo. It was too new and I hadn’t found this group, but my oncologist is well respected where I live. I had 5 1/2 weeks external and 3 internal treatments. I must note that I did not like my raditionon oncologist so this probably affected my experience greatly . He did not have a good bedside manner or empathy. Fortunately he is now gone .  Anyway internal was very unpleasant for me . It was painful as I already had a lot of vaginal atrophy .

    Ther have been others who’d very little problems with it. You will be given a dilator to use several times a week to use after you heal or have sex several times aweek. Keep in mind I had a high grade cancer with Cancer in thDee lymph nodes, both ovaries and my pelvic wash so this intensive treatment with 6 rounds of carbo/ taxol treatment and as of August 2016 I am clear, so for me it has been worth it..

  • evolo58
    evolo58 Member Posts: 293 Member
    edited December 2017 #10
    I admit being confused about

    I admit being confused about this as well. My current surgeon does not appear to be doing this. My second-opinion surgeon, however, does do this. I am scheduled to meet with the second-opinion doctor to see what that's about. I'll try to keep you folks posted!

  • Lyn70
    Lyn70 Member Posts: 214 Member

    I was diagnosed in October

    I was diagnosed in October after surgery with 3a, grade 2 endometrial adenocarcinoma. I had 1 chemo treatment, 5 to go. I did have reaction with Taxol and an getting desensitization. If that doesn't work they will switch me to doxil which will involve 7 more treatments, so I'm hoping desensitization works. I just met with my radiologist this week, and I really like him. My doctors are recommending 25 external targeted beam radiation treatments with no brachytherapy. However, he said the doctors will all get together and evaluate again once chemo is complete. Originally they were planning on doing sandwich therapy but as I had the reaction and had a bit of a delay, they want me to finish chemo, wait 3 weeks, and then begin radiation.

    We share the same diagnosis,

    We share the same diagnosis, stage IIIA grade 2 endometrial adenocarcinoma. I had extensive LSVI. I finished my 6 rounds of chemo. Oncologist initially indicated radiation with a 3 week break in between but now I have had a ct, which was good and he now recommends a PET. He says we will talk after Pet. I want to start radiation but don't quite know where we are going from here. I noticed you post was awhile ago and wondered how you were doing. 

  • cmb
    cmb Member Posts: 1,001 Member
    Lyn70 said:

    We share the same diagnosis,

    We share the same diagnosis, stage IIIA grade 2 endometrial adenocarcinoma. I had extensive LSVI. I finished my 6 rounds of chemo. Oncologist initially indicated radiation with a 3 week break in between but now I have had a ct, which was good and he now recommends a PET. He says we will talk after Pet. I want to start radiation but don't quite know where we are going from here. I noticed you post was awhile ago and wondered how you were doing. 

    Check profile

    You can always see if someone is still checking in with this site by looking at their profile (click on their user name) and reading the "Last Online" date.

    However, barnyardgal just posted on the "Good News" topic yesterday that she just reached her 3-year NED post-treatment milestone. - always a reason to celebrate.

  • Molly110
    Molly110 Member Posts: 191 Member
     
    Molly

     

    Molly

  • Lusafag
    Lusafag Member Posts: 21
    MAbound said:

    Same Stage & type

    I have the same stage and type of cancer as you. Mine is a grade 3 which makes me high risk for recurrance.

    What was also important was that I had one positve pelvic lymph node on each side, 80% myometrial penetration, and my cancer originated just above the uterine neck. Pelvic and/or vaginal radiation is done because that is where recurrence is most likely to occur. Having radiation there ups your odds for preventing recurrence in the vaginal cuff area, but it does not guarantee it. After that, recurrence is most likely to occur in the lungs so expect chest x-rays when you have check-ups after treatment. If you don't have pelvic radiation now and end up having a pelvic recurrence, they'd be able to treat it with radiation, but that's not an option for recurrences in areas previously treated with radiation therapy. 

    The stage, lymph involvement, myometrial penetration >50%, and origin in the lower part of the uterine body are all indicators for the need for radiation or not in addition to chemotherapy. Since I had all of the indicators I had both pelvic radiation with a vaginal boost which is basically brachy delivered externally instead of internally. 

    Everyone is different and different doctors have different views on how to treat, so that may be why yours is recommending just brachy treatments. If you do have those other indicators that would recommend the inclusion of pelvic radiation, I would get a second opinion about it. Frontline treatment is your best chance for achieving a cure instead of facing chronic treatment to keep this cancer at bay, so you want to cover all of your bases rather than trying to go the easiest route. On the other hand, you don't want to over-radiate if there isn't a need for it. 

    They usually give you a few weeks to recover from your last chemo before you go for radiation. I didn't have internal radiation so I can't speak to what that is like. The most commom side effects are fatigue, diarrhea or constipation, and bladder irritation. You'll need to continue being vigilant about drinking lots and lots of water. If you aren't taking a probiotic, start because that has helped a lot of us. 

    You've got some time to ask questions about your care plan as you have a ways to go yet with chemo. Most of us freak out about radiation when we hear all of the possible side effects, but remember it's just like the TV commercials for drugs. They have to tell you about them all, but that doesn't necessarily mean that all of them will happen to you. There's a lot of discussion on the board about radiation, so keep on reading for things that helped others cope with issues that came up from them, but remember we all come with different strengths and weaknesses when we enter treatment, so what happens to some of us doesn't happen to all of us. Stay strong and do what is in the best interest of your particular circumstances.

    Thank you so much.

    Such a wonderful post,such a help.

    How are you now ?

  • MAbound
    MAbound Member Posts: 1,168 Member
    Lusafag said:

    Thank you so much.

    Such a wonderful post,such a help.

    How are you now ?

    Almost 5 years

    I was a grade 3, stage 3a endometrial adenocarcinoma and I'm coming up on my 5 year anniversary with no recurrence. I am doing well except for needing a hip replacement that has nothing to do with my cancer treatment.

    During radiation, unlike most people, constipation was a problem for me because of the inflammation and swelling of my colon from it, so I kept taking Miralax and Senacot throughout to manage it as well as drinking tons of water like I did during chemo. It also took six months after finishing radiation for my white blood cell count to return to normal, so I had to be careful to avoid exposure to people during cold and flu season during those months.

    All-in-all, radiation was a lot easier to get through than chemo was, but it was hard prior to it to agree to the risks it poses.

    18 months after radiation, I developed diarrhea as a late-occuring side effect. It was like someone had just flipped a switch; one day I had constipation and the next diarrhea. I had colon biopsies to rule out other causes. It had me running to the bathroom at least 5 or 6 times a day and not much helped with it. I noticed a bit of nausea just before it would hit, so I had some warning to get to the bathroom in time. I was beginning to think this was going to be the rest of my life, but it let up and got better after about 6 months. Using psyllium and giving preference to foods that are sources of pectin and psyllium seems to have helped, although I still have erradic bouts of diarrhea that come and go for a few weeks at a time. Immodium makes me nauseous, but Pepto Bismal seems milder and helps me enough when I do get diarrhea these days. It's manageable, so I have no regrets regarding having the radiation.

    Anxiety after treatment is a huge cloud that follows you everywhere after a cancer diagnosis, but these days it's seeming smaller and less ominous to me, so it was worth doing what it took to get through frontline treatment. It sure helped to have all of the advice and comraderie found here to get through it, though. It's painful to read what you are currently going through, but it's encouraging that you have the professional support you need from your husband and we'll help in any way that we can, too. I'll be praying for you. Best wishes!