Stage1 Grade1 Recurrence Treatment with Vaginal Radiation - You want to put that where???

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Prissy777
Prissy777 Member Posts: 41 Member

Hi, I just saw my doctor today and he thinks I am having recurrence.  Strange since it was only 5% chance - will know more Friday.  I do not want to have vaginal radiation as I have read some terrible things.  Could you all please give me your honest experience with it? Good bad and truth.  I have read some women have terrible expeiences with this.  Is that the normal case or just some?

 

UPDATE FRIDAY: 7/31/15 11:05 - Dr. just called and biopsy was positive.  Grade 1 only so it should be curable with radiation.  Thanks eveyone.  PS.  I guess it does happen somtimes.

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,382 Member
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    First off, I thought the same

    First off, I thought the same thing when I heard "internal". 

    Can I ask why your doctor thinks you are having a recurrence?  What kind of tests has he done?  Maybe some of the other women are more familiar and I think we all ask "what does a recurrence 'look' like?"

    I had internal radiation.  What they insert looks like a large tampon.  You don't feel anything.  Bracytherapy does cause the vagina to shrink, so you should be given a dialator to use, they will say 3 times a week, others will say daily, if you do not have a sexual partner. 

    It is not terrible, and it is very doable.  Some women have had intestinal issues as a result of it, and I know they will help out here.

    Again, I think I would be curious WHY he thinks this?  Grade 1, Stage 1 is very low but anything is possible. 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    Internal radiation

    I had 2 internal radiation treatments after 28 external treatments between chemo treatments.  It was embaressing,  but the easiest of all the treatment I have had.  I had no discomfort, It was only 4 minutes in duration and I had no side effects from it.  I did have some trouble with radiatio colitist, but that was from the internal radiation.  I was told to use a dialator, but I really don't like it and use it seldom with no problems yet.

    Wishing you the best, Lou Ann

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    I had 3   HDR (High Dose

    I had 3   HDR (High Dose Radiation) brachytherapy treatments.   The treatment itself is quick (or at least mine was), but the initial part of it can be kind of embarrassing when they are fitting the dilator.   But after that, when you go back for your treatment, it is pretty quick.   After you are done with treatment, they want you to use a dilator to prevent scarring (or be sexually active at least 3x a week).   There is a post somewhere recently about this.

    For me, it was easier than the chemo, just a tad bit embarrassing at first.

    My best to you.

    Kathy

    PS   I didn't use the dilator and I didn't do the 3x a week thingy either - lol

  • debrajo
    debrajo Member Posts: 1,095 Member
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    Where

    I thought internal radiation was the easiest part and the lest painful.  Breezed right through.  My night mare didn't start till later.  They did an extended radical hysterectomy on me, meaning they took the cervix and one inch of the vagina.  The next inch was used to make the cuff.  At one checkup they had to "debreed" the chared skin in the cuff area and what was left of my vagina, about two inches.  The dialator didn't do any good, having sex with my husband didn't do any good.  No amount of creams, lotions, lubes, made a change.  There is only burn scar tissue, non streaching muscle, and no moisture.  So my sex live, per se, is over.  It has cost me my marriage of over 45 years.  I cannot make him understand.  He thinks I'm well, cancer gone, spent enough money that I'm all better.  Got his feelings hurt, won't work with me.  We are less than strangers.  If I had to do it again, I would because I want to live.  But there would be a lot more education for me and him.  Don't want to scare you.  Radiation is the gift that keeps on giving, or in my case it took too much.  Best, Debrajo

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,382 Member
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    debrajo said:

    Where

    I thought internal radiation was the easiest part and the lest painful.  Breezed right through.  My night mare didn't start till later.  They did an extended radical hysterectomy on me, meaning they took the cervix and one inch of the vagina.  The next inch was used to make the cuff.  At one checkup they had to "debreed" the chared skin in the cuff area and what was left of my vagina, about two inches.  The dialator didn't do any good, having sex with my husband didn't do any good.  No amount of creams, lotions, lubes, made a change.  There is only burn scar tissue, non streaching muscle, and no moisture.  So my sex live, per se, is over.  It has cost me my marriage of over 45 years.  I cannot make him understand.  He thinks I'm well, cancer gone, spent enough money that I'm all better.  Got his feelings hurt, won't work with me.  We are less than strangers.  If I had to do it again, I would because I want to live.  But there would be a lot more education for me and him.  Don't want to scare you.  Radiation is the gift that keeps on giving, or in my case it took too much.  Best, Debrajo

    oh debrajo, in the end I

    oh debrajo, in the end I would agree with you, "I would because I want to live".  To have an opportunity to help others, be an advocate (as many of the ladies here are)....the trade off doesn't even compare.  

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
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    honestly

    I had a full hysterectomy, chemo, external and two internal radiation 'treatments' at the age of 45.  When, some 9 months to a year later, I finally got the nerve to see what was left of my VaJayJay, it was about two inches in length.  Over time I've been able to stretch that back to about four inches.  Using a 'dilator' didn't work so well.  I went to Good Vibrations and got some good, well, dildos.  It doesn't take a lot of time to stretch it, maybe some pressure a few times a week.  I'll probably stretch it a bit more.

    Lubrication is also an issue here.  For me, it decreased.  In time, with the stretching, all natural lubrication has come back.    

    The two internals went fine, no real side effects in doing them.  But I did have one complication.  A few months, maybe a year after them I woke up one day and was unable to pee.  Apparently due to nerve damage to a sphincter muscle that controls peeing from the internal radiation.  I had a bladder catheter for a few days "to let it rest".  The catheter came out and I haven't had another bout of that problem.  I was told that they have a medication if it continued to be a problem and that it had something to do with the bladder getting too full.  I've not seen anyone else on this board with this particular complication.   

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    debrajo said:

    Where

    I thought internal radiation was the easiest part and the lest painful.  Breezed right through.  My night mare didn't start till later.  They did an extended radical hysterectomy on me, meaning they took the cervix and one inch of the vagina.  The next inch was used to make the cuff.  At one checkup they had to "debreed" the chared skin in the cuff area and what was left of my vagina, about two inches.  The dialator didn't do any good, having sex with my husband didn't do any good.  No amount of creams, lotions, lubes, made a change.  There is only burn scar tissue, non streaching muscle, and no moisture.  So my sex live, per se, is over.  It has cost me my marriage of over 45 years.  I cannot make him understand.  He thinks I'm well, cancer gone, spent enough money that I'm all better.  Got his feelings hurt, won't work with me.  We are less than strangers.  If I had to do it again, I would because I want to live.  But there would be a lot more education for me and him.  Don't want to scare you.  Radiation is the gift that keeps on giving, or in my case it took too much.  Best, Debrajo

    Yes Debrajo:
    So sorry to hear

    Yes Debrajo:

    So sorry to hear about your marriage.  It is hard enough to deal with cancer, but to have someone not understand.  ((Hugs))

    With the gift that keeps on giving, I know what you mean.   After my brachytherapy, the long term effect for me was a blockage in my left ureter by my bladder which my urologist said was the direct result of radiation.  So now I have to have a stent placed every three months.  Like you say, the gift that keeps giving.

     

    Kathy

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,382 Member
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    Lisa 00 said:

    honestly

    I had a full hysterectomy, chemo, external and two internal radiation 'treatments' at the age of 45.  When, some 9 months to a year later, I finally got the nerve to see what was left of my VaJayJay, it was about two inches in length.  Over time I've been able to stretch that back to about four inches.  Using a 'dilator' didn't work so well.  I went to Good Vibrations and got some good, well, dildos.  It doesn't take a lot of time to stretch it, maybe some pressure a few times a week.  I'll probably stretch it a bit more.

    Lubrication is also an issue here.  For me, it decreased.  In time, with the stretching, all natural lubrication has come back.    

    The two internals went fine, no real side effects in doing them.  But I did have one complication.  A few months, maybe a year after them I woke up one day and was unable to pee.  Apparently due to nerve damage to a sphincter muscle that controls peeing from the internal radiation.  I had a bladder catheter for a few days "to let it rest".  The catheter came out and I haven't had another bout of that problem.  I was told that they have a medication if it continued to be a problem and that it had something to do with the bladder getting too full.  I've not seen anyone else on this board with this particular complication.   

    Lisa - you are SO funny!!!  I

    Lisa - you are SO funny!!!  I guess i should have just gone with my gut to write "VaJayJay"!  LOL!!!  

  • molimoli
    molimoli Member Posts: 514
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    Gasp! Gasp ! Gasp !

    I am 62 years old and never thought I'd ever be speechless, well,now that I got my suspended breath back,can someone please tell me this , how does one measure their own  'thingy' (Kathy )apparatus.'   Is it done east to west ,north to south or heavens forbid front to back. and with WHAAAAT ?

    I LOL then LOL then CHOKED then LOST my Breath

    You ladies cracked  me up ,I am imagining you all here where I am  and we are laughing , having fun and defying cancer. What a beautiful thought I am thinking. What a gift to my burdened heart today to actually laugh out loud ,if only for a while.

                                                                                Plenty Plenty love, (thats what nuff nuff means)    Moli

    PS. the bunch of you are crazy,

  • ConnieSW
    ConnieSW Member Posts: 1,680 Member
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    molimoli said:

    Gasp! Gasp ! Gasp !

    I am 62 years old and never thought I'd ever be speechless, well,now that I got my suspended breath back,can someone please tell me this , how does one measure their own  'thingy' (Kathy )apparatus.'   Is it done east to west ,north to south or heavens forbid front to back. and with WHAAAAT ?

    I LOL then LOL then CHOKED then LOST my Breath

    You ladies cracked  me up ,I am imagining you all here where I am  and we are laughing , having fun and defying cancer. What a beautiful thought I am thinking. What a gift to my burdened heart today to actually laugh out loud ,if only for a while.

                                                                                Plenty Plenty love, (thats what nuff nuff means)    Moli

    PS. the bunch of you are crazy,

    Sigh

    Only we can help each other with stuff like this.  My doc didn't even warn me and I surely can't imagine him as part of this discussion. Thank goodness we have each other.  Now excuse me, I'm off to take some measurements.

  • Editgrl
    Editgrl Member Posts: 903 Member
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    molimoli said:

    Gasp! Gasp ! Gasp !

    I am 62 years old and never thought I'd ever be speechless, well,now that I got my suspended breath back,can someone please tell me this , how does one measure their own  'thingy' (Kathy )apparatus.'   Is it done east to west ,north to south or heavens forbid front to back. and with WHAAAAT ?

    I LOL then LOL then CHOKED then LOST my Breath

    You ladies cracked  me up ,I am imagining you all here where I am  and we are laughing , having fun and defying cancer. What a beautiful thought I am thinking. What a gift to my burdened heart today to actually laugh out loud ,if only for a while.

                                                                                Plenty Plenty love, (thats what nuff nuff means)    Moli

    PS. the bunch of you are crazy,

    Too funny

    This thread is almost worth the price of admission lol.  And here I always thought concern about size was a "guy" thing.  Who knew?!

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    ConnieSW said:

    Sigh

    Only we can help each other with stuff like this.  My doc didn't even warn me and I surely can't imagine him as part of this discussion. Thank goodness we have each other.  Now excuse me, I'm off to take some measurements.

    I often count my blessings

    That I too had Stage 1, Grade 1 endometrial cancer and did not need adjuvunct treatment.  But that's why you get checked - there is that small chance of recurrence.   I did my follow-ups and I did it because it is important.   I know our docs look for and feel for things, but I had never heard anyome mention "granulation".  Did they biopsy the area? Do a smear?   Before commiting to raadiation, I hope you have a frank discussion with your gyn oncologist about being sure that this is indeed a recurrence and/or if you can check it again in a couple of months to see if anything has changed before you commit to radiation if this is a just in case.  If you need it, I'm sure you will do it, but if you don't . . .   Yes, there is only a 5%  rare of recurrence.  The problem is they don't know if you're in the 95% of the women who don't recur, or the 5% who do.  And that's why you have followup exams. 

    Age also effects the ViJayJay and its relationship with husbands or lovers.  Lack of lubrication.  Lack of interest.  And, for me, I've also had estrogen receptor positive breast cancer and no one is going to ever give me estrogen.  Talk about lack of interest in sex!  I thnk I now understand why old men seek younger women!   Argggggh!

    It's been 5 years for me and I have been dismised from the gyn/oncologist.  He did his due diligence about telling me to have yearly exams by a gynocologist.  I have made the decision not to do it.  But it's been 5 years for me and that 5% is probably now .000000005% and I'm willing to take that chance.  I will, of course, show up if I have any symptoms.

    Good luck to you. Happy to make you laugh, Molimoli.  Having cancer below the belt has a number of issues with life in general that the general public doesn't understand.  And there are many issues with lilfe after breast cancer that the general public  doesn't understanad.   The general public thinks you do all your front line treatmen and then life should be fine.  No one knows the fallout - you're alive, but life changes.

    Suzanne

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,382 Member
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    I often count my blessings

    That I too had Stage 1, Grade 1 endometrial cancer and did not need adjuvunct treatment.  But that's why you get checked - there is that small chance of recurrence.   I did my follow-ups and I did it because it is important.   I know our docs look for and feel for things, but I had never heard anyome mention "granulation".  Did they biopsy the area? Do a smear?   Before commiting to raadiation, I hope you have a frank discussion with your gyn oncologist about being sure that this is indeed a recurrence and/or if you can check it again in a couple of months to see if anything has changed before you commit to radiation if this is a just in case.  If you need it, I'm sure you will do it, but if you don't . . .   Yes, there is only a 5%  rare of recurrence.  The problem is they don't know if you're in the 95% of the women who don't recur, or the 5% who do.  And that's why you have followup exams. 

    Age also effects the ViJayJay and its relationship with husbands or lovers.  Lack of lubrication.  Lack of interest.  And, for me, I've also had estrogen receptor positive breast cancer and no one is going to ever give me estrogen.  Talk about lack of interest in sex!  I thnk I now understand why old men seek younger women!   Argggggh!

    It's been 5 years for me and I have been dismised from the gyn/oncologist.  He did his due diligence about telling me to have yearly exams by a gynocologist.  I have made the decision not to do it.  But it's been 5 years for me and that 5% is probably now .000000005% and I'm willing to take that chance.  I will, of course, show up if I have any symptoms.

    Good luck to you. Happy to make you laugh, Molimoli.  Having cancer below the belt has a number of issues with life in general that the general public doesn't understand.  And there are many issues with lilfe after breast cancer that the general public  doesn't understanad.   The general public thinks you do all your front line treatmen and then life should be fine.  No one knows the fallout - you're alive, but life changes.

    Suzanne

    Suzanne - beautifully said on

    Suzanne - beautifully said on so many fronts.  

    I googled (a dangerous thing!) granulation and from what I read doctors usually take a sample, put silver nitrate on the area and send it off to be tested.  Prissy, maybe you can ask about that? 

    As for, "No one knows the fallout - you're alive, but live changes" I say: AMEN TO THAT SISTER!

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    measurements!

    OMG.... I had the same question...  How the heck did you measure 'it'?  lol

    Also, if sex is a solution, and if we start out at 2 inches, seems like it would hurt when he 'hits bottom'? This all just seems so strange to me. I'm still 5 weeks out from that first time. And, it is a bit scary for me. I'm lucky, I do have an understanding husband. We have had to deal with vulvadynia (sp) for the last 3 years so lots of discussion. Thank goodness for Orajel. Stings like crazy but does the job!

    Debrajo - I'm so sorry for the impacts to your marriage. You said if you had to do it all over, you would have gotten more counsel for both of you. Is it too late to do that now? 45 years is a long time! I hope things get better for you.

    Ladies - once again, I feel so fortunate to have all of you to bounce things off of. Feels like a group of friends. I'm grateful.   Cindi

  • molimoli
    molimoli Member Posts: 514
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    I often count my blessings

    That I too had Stage 1, Grade 1 endometrial cancer and did not need adjuvunct treatment.  But that's why you get checked - there is that small chance of recurrence.   I did my follow-ups and I did it because it is important.   I know our docs look for and feel for things, but I had never heard anyome mention "granulation".  Did they biopsy the area? Do a smear?   Before commiting to raadiation, I hope you have a frank discussion with your gyn oncologist about being sure that this is indeed a recurrence and/or if you can check it again in a couple of months to see if anything has changed before you commit to radiation if this is a just in case.  If you need it, I'm sure you will do it, but if you don't . . .   Yes, there is only a 5%  rare of recurrence.  The problem is they don't know if you're in the 95% of the women who don't recur, or the 5% who do.  And that's why you have followup exams. 

    Age also effects the ViJayJay and its relationship with husbands or lovers.  Lack of lubrication.  Lack of interest.  And, for me, I've also had estrogen receptor positive breast cancer and no one is going to ever give me estrogen.  Talk about lack of interest in sex!  I thnk I now understand why old men seek younger women!   Argggggh!

    It's been 5 years for me and I have been dismised from the gyn/oncologist.  He did his due diligence about telling me to have yearly exams by a gynocologist.  I have made the decision not to do it.  But it's been 5 years for me and that 5% is probably now .000000005% and I'm willing to take that chance.  I will, of course, show up if I have any symptoms.

    Good luck to you. Happy to make you laugh, Molimoli.  Having cancer below the belt has a number of issues with life in general that the general public doesn't understand.  And there are many issues with lilfe after breast cancer that the general public  doesn't understanad.   The general public thinks you do all your front line treatmen and then life should be fine.  No one knows the fallout - you're alive, but life changes.

    Suzanne

    Suzanne you are too bright,

    Suzanne you are too bright, well said in a teaching motherly way,Thanks

  • molimoli
    molimoli Member Posts: 514
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    measurements!

    OMG.... I had the same question...  How the heck did you measure 'it'?  lol

    Also, if sex is a solution, and if we start out at 2 inches, seems like it would hurt when he 'hits bottom'? This all just seems so strange to me. I'm still 5 weeks out from that first time. And, it is a bit scary for me. I'm lucky, I do have an understanding husband. We have had to deal with vulvadynia (sp) for the last 3 years so lots of discussion. Thank goodness for Orajel. Stings like crazy but does the job!

    Debrajo - I'm so sorry for the impacts to your marriage. You said if you had to do it all over, you would have gotten more counsel for both of you. Is it too late to do that now? 45 years is a long time! I hope things get better for you.

    Ladies - once again, I feel so fortunate to have all of you to bounce things off of. Feels like a group of friends. I'm grateful.   Cindi

    Shaking my head ,eyes rolling,mouth smiling, brain imagining

    Cindi ,  Hits bottom ?  Hurray for those of us who have had enough ' thingy'  to last the rest of our days. Any thoughts I have had ,'and yes I have pondered 'will be thrown out the window pronto.

    ouch!!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    molimoli said:

    Shaking my head ,eyes rolling,mouth smiling, brain imagining

    Cindi ,  Hits bottom ?  Hurray for those of us who have had enough ' thingy'  to last the rest of our days. Any thoughts I have had ,'and yes I have pondered 'will be thrown out the window pronto.

    ouch!!

    OK, this is going the wrong way!

    Moli! I am rolling on the ground in spirit.  Hits bottom... let's just say 2" deep just won't "accommodate" the given length expected to be "received"!!!!!  OMG OMG OMG

    Chris - you are hilarious! Couldn't have said it better about size being a guy thing.

    tee hee

  • AWK
    AWK Member Posts: 364 Member
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    debrajo said:

    Where

    I thought internal radiation was the easiest part and the lest painful.  Breezed right through.  My night mare didn't start till later.  They did an extended radical hysterectomy on me, meaning they took the cervix and one inch of the vagina.  The next inch was used to make the cuff.  At one checkup they had to "debreed" the chared skin in the cuff area and what was left of my vagina, about two inches.  The dialator didn't do any good, having sex with my husband didn't do any good.  No amount of creams, lotions, lubes, made a change.  There is only burn scar tissue, non streaching muscle, and no moisture.  So my sex live, per se, is over.  It has cost me my marriage of over 45 years.  I cannot make him understand.  He thinks I'm well, cancer gone, spent enough money that I'm all better.  Got his feelings hurt, won't work with me.  We are less than strangers.  If I had to do it again, I would because I want to live.  But there would be a lot more education for me and him.  Don't want to scare you.  Radiation is the gift that keeps on giving, or in my case it took too much.  Best, Debrajo

    Hugs

    You have been through so much and still give back to us.  I wish I could ease things up for you.  Sending more hugs and letting you know how appreciated and loved you are.  Anne

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    OK, this is going the wrong way!

    Moli! I am rolling on the ground in spirit.  Hits bottom... let's just say 2" deep just won't "accommodate" the given length expected to be "received"!!!!!  OMG OMG OMG

    Chris - you are hilarious! Couldn't have said it better about size being a guy thing.

    tee hee

    Laughing Laughing Laughing

    Good thing this isn't a fish story about how big!   although I think 2 inches is a "minnow"  - lol

    You girls are making me laugh!  And why am I starting to get a visual?   Sealed

     

    Kathy

     

    P.S.  Cindi, I thought Orajel was for your mouth/teeth?

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    OK, this is going the wrong way!

    Moli! I am rolling on the ground in spirit.  Hits bottom... let's just say 2" deep just won't "accommodate" the given length expected to be "received"!!!!!  OMG OMG OMG

    Chris - you are hilarious! Couldn't have said it better about size being a guy thing.

    tee hee

    What a laugh!

    Here I am alone in an office reading these posts and laughing! We are moving the office tomorrow to a new and much nicer office space and- since staff packed and labeled everything- I insisted they go home and I'll stay until 5:00 PM (It's a State office so it has to stay open in the event a client shows up.)  I'm the only State employee here - the rest are contracted. Although I am exhausted, you all cheer me with this female stuff. I am now wondering how I can measure myself. As for receiving radiation TX, I didn't have anything to radiate. I am hesitant to have radiation because of the side effects. But who knows what my future holds.

    You are all the best!

    Cathy