Brachy Therapy Experiences?

Hi all, my gynecological oncologist originally said I didnt need brachytherapy . However the radiologist at the center I'm treated at says that I do and that he consulted with another hospital and they agree however that radiologist does not do brachytherapy so I have to go for a consultation at another hospital tomorrow where there is a  radiologist who does do it. When I called my original and gynecological oncologist office and ask for him to consult with my current radiologist  he said to go to the doctor  for the consultation and he would consult with him . I asked the nurse if that meant he thinks I need it now and she said she did not know. It is so hard when when a doctor says something and then another doctor says something else and then you're like who to believe. And then on told to go with the doctor I trust. I have no trust in doctors after being passed off as premenopausal and now this is where I'm  at nor do I have the medical knowledge to make that kind of choice. I want to make sure that I'm treated well and that it does not return but I also don't want to be over treated. 

In also wonder how anyone whom had this tolerated it. I remember 1 person saying it was excruciating and then other saying with lidocaine it was tolerable. And not sure about the  dialator...doesnt sound fun nor does the whole experience.  

Any insight is appreciated! Thanks!

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Comments

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Just read an another thread

    Just read an another thread on brachy . Sounds like mixed experiences with this kind of therapy. 

    I'm sorry for those of u ladies  that had an overwhelming experience and wished yours had gone like other ladies who were able to tolerate it. Hoping if they decide I need ot that it will be done with as much ease as possible. 

     

  • janaes
    janaes Member Posts: 799
    I do understand your no trust

    I do understand your no trust in doctors.  I had a gynocologocal oncologist tell me not to even do chemo. I saw a couple more doctors and had a tumor board look at my cancer befor i decided what to do. Having others here helped very much too. 

    Deciding on external radiation and bracytherapy is hard. I did only bracytherapy for a few reasons. My oncologist told me i got my uterine cancer because of the radiation i recieved for my cancer i had 20 years ealier. I figured more radiation can cause more cancer. It just wasnt worh the risk for me. Plus i had radiation 2o years ago near the same place i would have had to do it for uterine cancer and my doctor wouldnt do radiation because of that reason. 

    I know lots of people who did external radiation though and it was right for them

    You will make the right decision for you feelingalone. Take your time its okay. Its your body and its good you want to do what is right for you

    take care

    Janae

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    edited October 2019 #4
    janaes said:

    I do understand your no trust

    I do understand your no trust in doctors.  I had a gynocologocal oncologist tell me not to even do chemo. I saw a couple more doctors and had a tumor board look at my cancer befor i decided what to do. Having others here helped very much too. 

    Deciding on external radiation and bracytherapy is hard. I did only bracytherapy for a few reasons. My oncologist told me i got my uterine cancer because of the radiation i recieved for my cancer i had 20 years ealier. I figured more radiation can cause more cancer. It just wasnt worh the risk for me. Plus i had radiation 2o years ago near the same place i would have had to do it for uterine cancer and my doctor wouldnt do radiation because of that reason. 

    I know lots of people who did external radiation though and it was right for them

    You will make the right decision for you feelingalone. Take your time its okay. Its your body and its good you want to do what is right for you

    take care

    Janae

    Hi Janae , thanks for your

    Hi Janae , thanks for your response.  I'm sorry u had cancer twice and I do hope your doing great now! I'm  also sorry to hear that 1 doctor told u one thing and then a entire board told u something different.  This sure makes it hard for the patient!It's so puzzling to me how there can be so many perspectives. 

    I am currently in the middle of my external radiation treatment.  I had endometrial cancer and it was strongly suggested that I receive as well as chemo. I was reluctant because as u said radiation itself can cause cancer and they said in the future I could get bladder cancer. This is so scary to me! It's like fixing the problem now but can cause problems down the road. Now the radiologist is also saying to do brachy as well. My gyno oncologist originally disagreed now he's saying go for a consultation  I don't get it. It's going to be a hard decision that I don't want to make as ti whether I have the brachy. I'm also wondering if once u have brachytherapy can it only be given once. So I will be asking that tomorrow. 

    Thank u, u take care as well!

    Michelle 

     

  • Armywife
    Armywife Member Posts: 449 Member
    Your decision

    The hardest part of this is that it is ultimately your decision.  I agonized over radiation.  My gyn/onc and my second opinion (MD Anderson) agreed on chemo, and as I completed it, I met with the rad/onc about radiation.  I had looked and looked at research.  My gyn/onc wanted me to have both external and brachy.  When I talked to the rad/onc, I asked him straight up if he could show me any studies that indicated that radiation would improve survival rate in Stage IVB.  He said he couldn't, but that he would still do at least brachy.  I asked my second opinion doc, and she put it before the tumor board at MD Anderson.  They were split down the middle.  Finally the chair of that board said that she would probably reserve radiation to be used in case of recurrence.  I relayed that message to my gyn/onc and agreed that I'd do whatever she wanted since she had brought me that far.  Once she heard what MD Anderson's board had said, she decided we were finished with treatment.  Tomorrow will be the 2-year anniversary of the end of chemo, and thus far I have been NED.  I know the odds are against me, but I am comfortable for now with not having done radiation.  It is my understanding that you can only do it once.  Praying for peace for you.  I remember the panic and uncertainty over what to do.  It was a funny feeling to suddenly be "done" after fighting so hard for five months.  I felt a little lost.  All normal, I know now.  

  • Donna Faye
    Donna Faye Member Posts: 427
    The choice ends up in your court

    When I was diagnosed with UPSC 1A in 2017, I wanted to just do observation. My onc/gyn was adamant that I have chemo and 4 brachy. I did lots of research, read what ladies on this board said and finally decided to do it. In 2018 I had a recurrence on the vaginal wall - not the usual place. Again, after personal research and the cancer board, went for 25 pelvic rads and 4 more brachy! I am 18 mos. out from last treatment and other than some long term effects with bladder and bowel that can be controlled with being careful, I am feeling good. Today was my 3 mo. CT scan and my doc app't. is the 8th. Hoping I will still be NED. So, what I am saying here is the decision is finally yours. I am 79.6, no sex in the future, and decided not to dilate due to blood thinners causing bleeding.  The brachy itself was no problem but I do have the BEST rad doc on earth. Even the pelvic rads were OK - just needed lots of Immodium! I have decided that if cancer comes to call again, I will not fight it but much of that is my age and a life I have enjoyed. Our cancer is not as common as many so the research is just in its infancy. Do your own research, continue to ask questions and when you feel you are at peace with your choice, do it. It is a crapshoot for us. We can only do what our mind and heart tells us. Wishing you the best.

  • Primavera
    Primavera Member Posts: 231 Member
    I had brachytherapy

    I had stage 1a, grade 3, and I only had three sessions of mild radiation. The first one is very involved and there was a team of nurses (two women, one guy) and a doctor and another guy who did the measurements. It wasn't hard at all and the nurses made sure I was comfortable. The other two treatments were very easy and fast.

    I didn't get any side effects from it and I didn't take anything before the procedures. It probably depends on the doctor and the patient. I was nervous even though everything had been explained to me fully and I did a lot of research at this site. It was the fear of the unknown. It is not that bad. There was an hour of waiting during the first session before they treat you. I fell asleep for that hour.

  • janaes
    janaes Member Posts: 799
    I agree with Donna Faye about

    I agree with Donna Faye about bracytherapy being easy.  The procedure itself was a bit uncomportable but for me once it was over i had no problems no side effects or nothing. I had three treatments. One a week for three weeks. It was so simple compaired to chemo. 

  • Fridays Child
    Fridays Child Member Posts: 249 Member
    Brachytherapy

    It is really hard to have the decision on our shoulders when we feel like there's so much we don't know. After my surgery in 2012 they suggested that I have brachytherapy but said it was up to me.  I had five treatments.  At my center you go in for the simulation, but rather than stay there while they do the calculations and then have treatment, they scheduled the first actual treatment for a different day. I'm sure if I had to travel a long distance they'd have done them the same day.

    (And Donna Faye, we must have the same rad/onc because I think I have the best one ever!)

    When I had the brachytherapy I got permission from my rad/onc to take probiotics.  The only time I had any diarrhea was right after I completed treatment when there was a death in the family and I forgot to take the probiotics for a couple of days.  They never advised me to use a dilator since I am married, although I know some doctors want you to use one anyway.   Best wishes to you with your consultation and decision.

     

     

  • Quilter_1
    Quilter_1 Member Posts: 117 Member
    My brachy experience was not

    My brachy experience was not unpleasant.  Using the dilators is a nuisance, but, tolerable.  For now, I am not experiencing any ill effects from any of my radiation treatments, I guess time will tell.   I chose to do what my gyn/onc and rad/onc recommended, which was 32 pelvic IMRT and 6 brachy. Cheers to all of us for fighting the good fight, thank you all for the loving support and information provided here.

    Linda

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

    Your decision

    The hardest part of this is that it is ultimately your decision.  I agonized over radiation.  My gyn/onc and my second opinion (MD Anderson) agreed on chemo, and as I completed it, I met with the rad/onc about radiation.  I had looked and looked at research.  My gyn/onc wanted me to have both external and brachy.  When I talked to the rad/onc, I asked him straight up if he could show me any studies that indicated that radiation would improve survival rate in Stage IVB.  He said he couldn't, but that he would still do at least brachy.  I asked my second opinion doc, and she put it before the tumor board at MD Anderson.  They were split down the middle.  Finally the chair of that board said that she would probably reserve radiation to be used in case of recurrence.  I relayed that message to my gyn/onc and agreed that I'd do whatever she wanted since she had brought me that far.  Once she heard what MD Anderson's board had said, she decided we were finished with treatment.  Tomorrow will be the 2-year anniversary of the end of chemo, and thus far I have been NED.  I know the odds are against me, but I am comfortable for now with not having done radiation.  It is my understanding that you can only do it once.  Praying for peace for you.  I remember the panic and uncertainty over what to do.  It was a funny feeling to suddenly be "done" after fighting so hard for five months.  I felt a little lost.  All normal, I know now.  

    New Picture

    Love the new picture. It will be a great help to those reading about your icing hack.Smile

  • Feelingalone74
    Feelingalone74 Member Posts: 243

    The choice ends up in your court

    When I was diagnosed with UPSC 1A in 2017, I wanted to just do observation. My onc/gyn was adamant that I have chemo and 4 brachy. I did lots of research, read what ladies on this board said and finally decided to do it. In 2018 I had a recurrence on the vaginal wall - not the usual place. Again, after personal research and the cancer board, went for 25 pelvic rads and 4 more brachy! I am 18 mos. out from last treatment and other than some long term effects with bladder and bowel that can be controlled with being careful, I am feeling good. Today was my 3 mo. CT scan and my doc app't. is the 8th. Hoping I will still be NED. So, what I am saying here is the decision is finally yours. I am 79.6, no sex in the future, and decided not to dilate due to blood thinners causing bleeding.  The brachy itself was no problem but I do have the BEST rad doc on earth. Even the pelvic rads were OK - just needed lots of Immodium! I have decided that if cancer comes to call again, I will not fight it but much of that is my age and a life I have enjoyed. Our cancer is not as common as many so the research is just in its infancy. Do your own research, continue to ask questions and when you feel you are at peace with your choice, do it. It is a crapshoot for us. We can only do what our mind and heart tells us. Wishing you the best.

    Donna Faye, I will be praying

    Donna Faye, I will be praying for you on the 8th that you continue to be NED!

    Im glad that brachy itself was ok for you but sorry that you have some long term effects.

    I think that is what the 2nd radioligist that I consulted with yesterday is most worried about the long term effects of brachy for me because I am ony 45. I will wait for the his phone call once he has consulted with 2 other radioligists and hope that the best decision will have beenmade for me.

    I have completed 13/25 pelvic radiations so far. Immodium certainly has been my best friend but other that that I have gotten through the 1st half with ease.

    Thank you for wishing me the best! I wish the same for you! Prayers on the 8th for god health for you.

    Michelle

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    edited October 2019 #13
    Armywife said:

    Your decision

    The hardest part of this is that it is ultimately your decision.  I agonized over radiation.  My gyn/onc and my second opinion (MD Anderson) agreed on chemo, and as I completed it, I met with the rad/onc about radiation.  I had looked and looked at research.  My gyn/onc wanted me to have both external and brachy.  When I talked to the rad/onc, I asked him straight up if he could show me any studies that indicated that radiation would improve survival rate in Stage IVB.  He said he couldn't, but that he would still do at least brachy.  I asked my second opinion doc, and she put it before the tumor board at MD Anderson.  They were split down the middle.  Finally the chair of that board said that she would probably reserve radiation to be used in case of recurrence.  I relayed that message to my gyn/onc and agreed that I'd do whatever she wanted since she had brought me that far.  Once she heard what MD Anderson's board had said, she decided we were finished with treatment.  Tomorrow will be the 2-year anniversary of the end of chemo, and thus far I have been NED.  I know the odds are against me, but I am comfortable for now with not having done radiation.  It is my understanding that you can only do it once.  Praying for peace for you.  I remember the panic and uncertainty over what to do.  It was a funny feeling to suddenly be "done" after fighting so hard for five months.  I felt a little lost.  All normal, I know now.  

    Armywife, Happy 2 year

    Armywife, Happy 2 year Anniversary of being NED!!! :-) So happy for you!!! Im glad you sought a 2nd opinion and it seems you had a great team looking out for you!

    Yes, the hardest part is definetly that the decision falls on the patient . The radioligist I saw yesterday for a consultation interesting enough said the long term effects of the brachy outweighed the % of benefit that I would get from the brachy therapy. I told him it was very hard when no one can agree on whats best for me. We ended the appt with him stating he'd consult with the other 2 radioligist in he practice and get back to me in a few days. 

    Interesting I have read the comments of several ladies below and they said that brachy was ok and they arent experiencing any side effects.

    Michelle

    Thank you for wishing me peace! I hope in a few days the best decison has been made. I just want whatever is best for me.

  • Feelingalone74
    Feelingalone74 Member Posts: 243

    Brachytherapy

    It is really hard to have the decision on our shoulders when we feel like there's so much we don't know. After my surgery in 2012 they suggested that I have brachytherapy but said it was up to me.  I had five treatments.  At my center you go in for the simulation, but rather than stay there while they do the calculations and then have treatment, they scheduled the first actual treatment for a different day. I'm sure if I had to travel a long distance they'd have done them the same day.

    (And Donna Faye, we must have the same rad/onc because I think I have the best one ever!)

    When I had the brachytherapy I got permission from my rad/onc to take probiotics.  The only time I had any diarrhea was right after I completed treatment when there was a death in the family and I forgot to take the probiotics for a couple of days.  They never advised me to use a dilator since I am married, although I know some doctors want you to use one anyway.   Best wishes to you with your consultation and decision.

     

     

    Fridays child , it sure is

    Fridays child , it sure is hard! thank you for wishing best wishes . I will try to patiently wait for the consulting radioligist to consult with 2 others on what is best for me. Good to know that probiotics are a big help if needed. Im sorry for the death in your family.

    Wishing you continued good health!

    Michelle

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Quilter_1 said:

    My brachy experience was not

    My brachy experience was not unpleasant.  Using the dilators is a nuisance, but, tolerable.  For now, I am not experiencing any ill effects from any of my radiation treatments, I guess time will tell.   I chose to do what my gyn/onc and rad/onc recommended, which was 32 pelvic IMRT and 6 brachy. Cheers to all of us for fighting the good fight, thank you all for the loving support and information provided here.

    Linda

    Quilter 1 , Im so glad that

    Quilter 1 , Im so glad that your ecperience was not unpleasant and that thus so far you havent aretn experiencing any side effects!!! I hope that continues for you!

    CHeers to you as well and for yours and everyone elses loving support and sharing info and experiences on here!

    Wishing you continued good health

    Michelle

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    janaes said:

    I agree with Donna Faye about

    I agree with Donna Faye about bracytherapy being easy.  The procedure itself was a bit uncomportable but for me once it was over i had no problems no side effects or nothing. I had three treatments. One a week for three weeks. It was so simple compaired to chemo. 

    Janae, Im so glad that though

    Janae, Im so glad that though the procedure was a bit uncomfortable it was easy for you that you had no side effects or problems. I hope if it's decided for me to have brachy that I dont either.

     Wishing you continued good health

    Michelle

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Primavera said:

    I had brachytherapy

    I had stage 1a, grade 3, and I only had three sessions of mild radiation. The first one is very involved and there was a team of nurses (two women, one guy) and a doctor and another guy who did the measurements. It wasn't hard at all and the nurses made sure I was comfortable. The other two treatments were very easy and fast.

    I didn't get any side effects from it and I didn't take anything before the procedures. It probably depends on the doctor and the patient. I was nervous even though everything had been explained to me fully and I did a lot of research at this site. It was the fear of the unknown. It is not that bad. There was an hour of waiting during the first session before they treat you. I fell asleep for that hour.

    Primavera, I'm so glad that

    Primavera, I'm so glad that you didnt get any side effects! That's great! and Im relieved to hear the experince isnt that bad should it be decided I should in fact have the brachy.It seems to be what the consulting radioligist seems to be most worried about for me. 

    Wishing you good health!

    Michelle

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    MAbound said:

    New Picture

    Love the new picture. It will be a great help to those reading about your icing hack.Smile

    Me too!

    Me too!Smile

  • Kaleena
    Kaleena Member Posts: 2,064 Member
    Brachytherapy

    originally I was not to have any radiation but after my chemo was done my oncologist wanted me to do pelvic and brachytherapy   However my radiation oncologist advised against the pelvic radiation and he indicated my risks of having pelvic radiation outweighed the risk of not getting it.  because I scar so much he indicated the pelvic radiation would cause issues later on.  Therefore I only had 3 HDR brachytherapy sessions.  That was back in 2006.  in 2014 approximately 8 years later I developed a blocked left ureter and tumor from the brachytherapy. I had stents put in for about a year and a half until I had a ureter bypass surgery.

    I had no problems with the brachytherapy sessions.   The only thing was I got a little embarrassed at the first appointment when they had to measure you for the dialator.   The actual treatment was nothing.   Also I did not follow up with using a dialator at home eithe.   By the way I was 45 when I had my hysterectomy

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    Kaleena said:

    Brachytherapy

    originally I was not to have any radiation but after my chemo was done my oncologist wanted me to do pelvic and brachytherapy   However my radiation oncologist advised against the pelvic radiation and he indicated my risks of having pelvic radiation outweighed the risk of not getting it.  because I scar so much he indicated the pelvic radiation would cause issues later on.  Therefore I only had 3 HDR brachytherapy sessions.  That was back in 2006.  in 2014 approximately 8 years later I developed a blocked left ureter and tumor from the brachytherapy. I had stents put in for about a year and a half until I had a ureter bypass surgery.

    I had no problems with the brachytherapy sessions.   The only thing was I got a little embarrassed at the first appointment when they had to measure you for the dialator.   The actual treatment was nothing.   Also I did not follow up with using a dialator at home eithe.   By the way I was 45 when I had my hysterectomy

    Hi Kaleena, thanks for

    Hi Kaleena, thanks for sharing your experience.  I'm glad the brachy experience itself for you was ok but sorry that had complications down the road. I hope that you are doing well now!

    I've just completed 14/25 of pelvic radiation and I'm quite concern of the effects down the  road as I am if I make the decision to do the brachy. It's such a hard decision for the patient to make . The radiologist oncologist I went to for a 2nd opinion said he'd support either decision.  I want to decrease my risk of the cancer returning but I'm also afraid of the long term effects as well.

  • Brachey Therapy

    I had the Brachey and it was not to bad for me except that I had my legs in the air for ove 2 hours. I did not take pain meds for this or get put to sleep, I just did the therapy that lasted about 10 minutes to do the radiation part but the other hours were making sure it was in the right place and other things the doctor was looking for.