New Here-tough decision brachytherapy or full pelvic

Cass83
Cass83 Member Posts: 151

I was diagnosed with Grade 2 endometrial cancer and had a complete hysterectomy in Dec. After the surgery they staged it as IIIC1. I had 1 lymph node out of 8 positive (they removed the one during surgery) they said the tumor invades to the connective tissue of the cervix but does not extend beyond uterus. I have had 2 cycles of carboplatin/Paclitaxel and have 4 to go. My oncology gynecologist had planned vaginal cuff brachytheraphy 3-5 treatments. When I met with the radiologist, he wanted to plan on 20 treatments of the full pelvic area. Since they do not agree on it, they are leaving it up to me. My first instinct is to do the brachytheraphy due to the less toxicity and side affects. Has anyone else had to make this decision? I only know of 1 other person in my local area that has the same cancer, and she had both done because her doctors said she needed both. Any input would be appreciated.

«1

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996
    edited February 2017 #2
    Welcome

    to the club no one wants to belong to.  It is a good place to come for advice, support and information.  You have a hard d ciion to make.  I had 28 external and two brachytherapy treatments.  That is what my gyro-oncologist and my radiologist recommended.  At the time I went with that because that is what they said I should do to treat this rollercoaster ride I found my self on.  Now I know a lot more and I still would have gone the same route.  I,would have and still will do what ever my doctors recommen, first because I have the utmost confidence in them and second I want to give myself the best chance,that I can.  I did not find either treatment hard.  The external did give me diahrea, but that was controlled with making Imodium my new best friend.  I also had some fatigue, but I worked full time teaching,first and second graders and did not have to take any time off.  The brachytherapy may have been a little embareasing, but the easiest part of this whole thing.  No side effects at all for me.  I do have some things going on that I think are long term side effects from the external radiatio.  The large bones in your pelvis is where a lot of your blood is made, and I had a lot of trouble with blood counts after radiation.  I also ended up with a stress fracture and insufficiency  fractures in my pelvis.  Now I have problems with my SI joint.  May not be, but I am blaming the radiation.  Knowing this now, I would still do the radiation.  I can live with those for a long time, Cancer maybe not so much.

    Hugs and prayers, Lou Ann

     

     

  • janaes
    janaes Member Posts: 799
    Im so sorry you have to make

    Im so sorry you have to make such a hard desision.  Cancer desions are really hard.  Take the time you need to figure it out for your self.  I had to decide between bracytherapy and external radiation.  I decided on just bracytherapy  because i already had a diferent cancer over 20 years ago and had alot of radiation close to the same area.  My doctor didnt even want to do external radiation because i already had radiation close to there.  My stage was 2 and it was grade 3.  I was diagnosed with MMMT uterine cancer back in May of last year.  Some others  might have decided external radiation for my cancer but because i had cancer before I think that was my reason behind no external radiation. Good luck in your desision

  • Cass83
    Cass83 Member Posts: 151
    Lou Ann M said:

    Welcome

    to the club no one wants to belong to.  It is a good place to come for advice, support and information.  You have a hard d ciion to make.  I had 28 external and two brachytherapy treatments.  That is what my gyro-oncologist and my radiologist recommended.  At the time I went with that because that is what they said I should do to treat this rollercoaster ride I found my self on.  Now I know a lot more and I still would have gone the same route.  I,would have and still will do what ever my doctors recommen, first because I have the utmost confidence in them and second I want to give myself the best chance,that I can.  I did not find either treatment hard.  The external did give me diahrea, but that was controlled with making Imodium my new best friend.  I also had some fatigue, but I worked full time teaching,first and second graders and did not have to take any time off.  The brachytherapy may have been a little embareasing, but the easiest part of this whole thing.  No side effects at all for me.  I do have some things going on that I think are long term side effects from the external radiatio.  The large bones in your pelvis is where a lot of your blood is made, and I had a lot of trouble with blood counts after radiation.  I also ended up with a stress fracture and insufficiency  fractures in my pelvis.  Now I have problems with my SI joint.  May not be, but I am blaming the radiation.  Knowing this now, I would still do the radiation.  I can live with those for a long time, Cancer maybe not so much.

    Hugs and prayers, Lou Ann

     

     

    thank you

    Thank you for your input! It is a hard decision. The long term affects are my main concern.

  • Cass83
    Cass83 Member Posts: 151
    janaes said:

    Im so sorry you have to make

    Im so sorry you have to make such a hard desision.  Cancer desions are really hard.  Take the time you need to figure it out for your self.  I had to decide between bracytherapy and external radiation.  I decided on just bracytherapy  because i already had a diferent cancer over 20 years ago and had alot of radiation close to the same area.  My doctor didnt even want to do external radiation because i already had radiation close to there.  My stage was 2 and it was grade 3.  I was diagnosed with MMMT uterine cancer back in May of last year.  Some others  might have decided external radiation for my cancer but because i had cancer before I think that was my reason behind no external radiation. Good luck in your desision

    Thank you

    Thank you for your reply. I wish there was some stats or clinical trials to read about, but ours is not a well studied kind it seems.

  • Soup52
    Soup52 Member Posts: 908 Member
    I'm so sorry that this is a

    I'm so sorry that this is a hard decision for you. I like Lou Ann had both external and brachytherapy along with the chemotherapy. I am 3C-3, so I too was willing to do anything to help my chances in defeating the cancer. So far so good for me. I do have some bowel problems, but nothing too severe. My treatments ended in June and so far I'm clear. Please keep us posted on you decision and how you are doing. We are all here for you.

  • Nellasing
    Nellasing Member Posts: 528
    edited February 2017 #7
    Hi Cass83

    These decisions don't seem to get any easier all along the way.  I don't have your exact cancer.  I am Grade 3a Stage 3 Endometrial Adenocarcinoma.  I had 6 rounds carbo/taxol and the gyn/onc wanted me to do brachytherapy as insurance on the cuff but the rad/onc wanted me to do 6 1/2 wks -daily full radiation.  It was very hard to decide and I went back and forth and read a lot on here and in the end decided that I did not want to do either.  Prayers are you consider your options and gather information.  (((HUGS)))

  • Editgrl
    Editgrl Member Posts: 903
    You are where I was a little

    You are where I was a little over a year ago, except that my cancer was Grade 3, Stage IIIC2.  I had opinions from my gyn/onc, and two radiologists within my medical group. They didn't agree.  I then went before a panel of two more medical oncologists, two more radiologists, and another gyn/onc, hoping for some sort of consensus.  There was none.  Some things to consider are how likely is your type and stage of cancer to recur locally as opposed to distantly?  If it tends to recur locally, then pelvic radiation might be something to consider.  If it tends to recur distantly, then things aren't so clear cut. Also, if you do have pelvic radiation, they can design to plan to encompass the vaginal cuff so that you don't have to have both pelvic and brachytherapy.  

     In my case, after much research and input, it seemed that in my case, pelvic radiation would prevent local recurrence, but did not affect the overall survival rate.  I decided to do brachytherapy only.  If it recurred in the pelvic area, then I could still have radiation.  Someone else in my situation could well have made a different decision looking at the same information.

    My whole decision making process, along with a lot of input from the wonderful ladies on this site, is documented in this thread:

    http://csn.cancer.org/node/299071

    You'll see different opinions and experiences there, and I think it reflects the wide range of recommendations.  One of the toughest things about this disease is finding out how much responsibility you have for deciding on your own treatment.  In the final analysis, you have to make the decision that feels right for you.

  • MAbound
    MAbound Member Posts: 1,164 Member
    Been there, done that,here's why

    When I was wrestling with the same decision and freaking out about it last summer I learned which criteria mattered the most in tipping the scales either towards pelvic radiation or waiting for a possible recurrence before proceeding. The thread where I got a lot a great help here was titled "Still terrified" around August or September of 2016.

    To put what I learned in a nutshell: You would benefit from pelvic radiation if your pathology results show one or more of the following: 50% or greater myometrial invasion, cancer originating in the lower uterine segment rather than higher up in the fundus (i.e. closer to or including the neck of the uterus and/or extending down towards the cervix; lymphovascular involvement; 

    The way pelvic radiation is delivered really makes a big difference to how it impacts you. Some have RT prior to surgery or chemo, some have it sandwiched midway during chemo, and some, like me, have it after chemo. My doctor wanted it after chemo because he felt the radiation does some damage to pelvic blood vessels and that would impact delivery of the chemo drugs in the pelvis. There really doesn't seem to be much agreement out there on when it's the best time to have it. More important than the when, I think, is the how. I was offered 3D-CRT (3 dimensional-conformal RT) that shapes the delivery of radiation to avoid organs such as the bladder, urethra, colon, etc. to the extent possible to minimize long term side effects. Drinking a lot and taking a probiotic helps too. Diarrhea and/or constipation are an issue for most during treatment and potentially for a while after, but is generally easily managed.

    I also had a "vaginal boost" after the pelvic RT which is basically the same as brachy, just delivered externally instead. You and I are pretty close as far as pathology, so it all depends on whether or not you'd sleep easier having done all you could do vs. taking a chance and waiting for a recurrence to have something to aim the radiation at. It's a tough decision with no guarantees no matter what you decide. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    3c Grade 3

    And I had both external and internal as my doctors recommended. I had it after chemo. I too like LouAnn had insufficiency fracture of pelvis but doctors claim it was not due to radiation. My bones were not in good shape before this adventure. I've got some bladder issues but these should pass. I would do the radiation again for I feel it gave me best chance for survival. I have 6 month scan tomorrow. Fingers crossed. 

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited February 2017 #11

    3c Grade 3

    And I had both external and internal as my doctors recommended. I had it after chemo. I too like LouAnn had insufficiency fracture of pelvis but doctors claim it was not due to radiation. My bones were not in good shape before this adventure. I've got some bladder issues but these should pass. I would do the radiation again for I feel it gave me best chance for survival. I have 6 month scan tomorrow. Fingers crossed. 

    Good Luck!

    I'll be crossing my fingers, eyes, and toes for you! 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,037 Member
    edited February 2017 #12
    I love the women here!

    I love the women here!  Always helping, sharing...if you have to go through this all - it is great knowing there is such a support group.

    Grade 3, Stage 1A UPSC.  I had sandwiched between 3 and 3 chemos radiation.  The radiation consisted of 25 external and 3 brachy.  

  • MoeKay
    MoeKay Member Posts: 403 Member
    Need More Information

    Cass, it doesn't sound to me like your gyn-onc and rad-onc have provided you with all the information you need in order to be able to make a fully informed treatment decision.  What are the reasons for each recommendation?  For example, I was treated for endometrial adenocarcinoma in 1999.  I had a deeply-invasive grade 2 tumor that had invaded approximately 80% of the myometrium.   The pathologist also found extensive lymph-vascular space invasion by my tumor, and it had also invaded the lower uterine segment.  These were all risk factors for recurrence.  Both my gyn-onc and rad-onc concluded that my treatment plan should include external radiation and brachytherapy.  It's been more than 17 years since I finished treatment and I have had no bone density or fracture issues. 

    If I were you, I would ask your doctors to articulate the basis for their position on pelvic radiation as well as brachytherapy.  I might also seek additional opinions to help in making the decision.  I know some women take the position that they will hold off on radiation until they have a recurrence.  In some cases, they may be able to be effectively treated at recurrence, but it's my understanding that is not always the case.  That's why I think it's very important for you get all your questions answered before you decide how to proceed. 

    Best of luck to you.

  • Cass83
    Cass83 Member Posts: 151
    thank you all!

    I am so glad I found this group! You all are very helpful and encouraging. I appreciate your input! I have sent my onc/gyn and the onc/rad a list of questions, my gyn has responded but the radiologist hasn't. I am still leaning towards the brachytherapy only, but we will see if the radiologist answers my questions too.

  • Kvdyson
    Kvdyson Member Posts: 789
    Cass83, I guess the good news

    Cass83, I guess the good news is that once you decide on a treatment, you will likely still have the other treatment available to you if you need it in the future. Good luck to you and keep us updated on how you're doing. Kim

  • Kaleena
    Kaleena Member Posts: 2,081 Member
    similar issues

    My gyne/onc and my rad/onc didn't agree.  My gyne/onc wanted me to have pelvic radiation and brachytherapy.  My rad/onc said no to the pelvic radiation because of my already very scarred insides.  He indicated that the pelvic radiation would cause more problems than not having it done.  I did have the brachythereapy which 10 years later caused blockage in my left ureter.

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

    Need More Information

    Cass, it doesn't sound to me like your gyn-onc and rad-onc have provided you with all the information you need in order to be able to make a fully informed treatment decision.  What are the reasons for each recommendation?  For example, I was treated for endometrial adenocarcinoma in 1999.  I had a deeply-invasive grade 2 tumor that had invaded approximately 80% of the myometrium.   The pathologist also found extensive lymph-vascular space invasion by my tumor, and it had also invaded the lower uterine segment.  These were all risk factors for recurrence.  Both my gyn-onc and rad-onc concluded that my treatment plan should include external radiation and brachytherapy.  It's been more than 17 years since I finished treatment and I have had no bone density or fracture issues. 

    If I were you, I would ask your doctors to articulate the basis for their position on pelvic radiation as well as brachytherapy.  I might also seek additional opinions to help in making the decision.  I know some women take the position that they will hold off on radiation until they have a recurrence.  In some cases, they may be able to be effectively treated at recurrence, but it's my understanding that is not always the case.  That's why I think it's very important for you get all your questions answered before you decide how to proceed. 

    Best of luck to you.

    Maureen iterates of very good point in the last paragraph. It bears weighinh into the decision that treating recurrence is iffier than curing it the first time around. Cancer cells mutate and what worked before may not be an option for treating a recurrence. That's one of the reasons I decided to do all that I could rather than waiting for something to aim the radiation at. I really didn't want to, but now that it's behind me I have no regrets. 

  • Cass83
    Cass83 Member Posts: 151
    edited February 2017 #18
    Kvdyson said:

    Cass83, I guess the good news

    Cass83, I guess the good news is that once you decide on a treatment, you will likely still have the other treatment available to you if you need it in the future. Good luck to you and keep us updated on how you're doing. Kim

    thanks

    That's what I am thinking too. I am leaning towards the brachytherapy for now. Then if it comes back in the future, then I could do the external pelvic area.

  • beccabtown
    beccabtown Member Posts: 234
    I went with radiation

    I had 28 external treatments and 3 brachys. I was not really asked to make a choice because of the aggressive form of cancer I had and high number of positive lymph nodes (25). The external radiation seems to have done its job, since I was cancer-free at the end of treatment. So I'm glad I had the radiation even though that may be the cause of some of the side effects I'm having now, such as low blood and potassium levels. 

  • Kamushka
    Kamushka Member Posts: 22
    edited February 2017 #20
    Side effects

    I am more worried about the fecal leakage...diarrhea...bladder leakage and damage.....did you have that....if I can ask such a personal question. With my husband's four year battle with rectal cancer and wearing a bag with an eliostomy (much different than a colostomy) the quality of life for him is still not great....but I'm burning more candles and have air fresheners in every room.....so the house smells better! 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Side effects

    i had 28 external and 3 internal treatments. I took Culturelle probiotic and didn't have any diarrhea but for a few weeks after I took Immodium because of a little bowel urgency, but the Imodium solved the problem and I'm not bothered by it now (my treatment ended in October). I am having some bladder issues (burning, sloughing off of cells leading to more risk of infections) but working on resolving that now. They really don't think my fracture was related to the radiation but could have been related to the steroid use with chemo. You do have to regularly use the  vaginal dilator after radiation treatment which is kind of a hassle.  But all of this is worth it if it saves your life.  I'm still pretty deconditioned but I'm going to start physical therapy next week