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

Prissy777
Posts: 41
Joined: Dec 2014

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

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. 

Prissy777
Posts: 41
Joined: Dec 2014

Yes it is unusual. However he said there was some granulation. And after further physical examination that there is possibility strong that there may be recurrence. I will find out more Friday. I am not trying to borrow trouble. I just want to know my options when I talk to him Friday. I appreciate all the help I can get from the board.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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's picture
Kaleena
Posts: 2036
Joined: Nov 2009

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's picture
debrajo
Posts: 1095
Joined: Sep 2011

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's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

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.  

Kaleena's picture
Kaleena
Posts: 2036
Joined: Nov 2009

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

AWK
Posts: 364
Joined: Mar 2013

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

Lisa 00
Posts: 134
Joined: Jul 2009

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.   

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

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

molimoli
Posts: 514
Joined: Aug 2014

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
Posts: 1506
Joined: Jun 2012

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.

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

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's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

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!

 

molimoli
Posts: 514
Joined: Aug 2014

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

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

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
Posts: 514
Joined: Aug 2014

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's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

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

Kaleena's picture
Kaleena
Posts: 2036
Joined: Nov 2009

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?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Yes it is... But, sometimes we just have to get creative to make things work.  I needed something to numb the "entry" and I figured if it worked on teeth it should work on that.  It does the job. And is fast.  If I could find something that works as well and also doesn't sting on the initial application, that would be even better.

molimoli
Posts: 514
Joined: Aug 2014

Reject the visual promptly I advise you. The vision that they planted in my brain still remains even after I squirted Wind Shield Washer fluid in my eyes and wiped  and buffed my lenses  with jcloth, it remains ,it's indelible. A frightening visual trip ,makes everything south of my belly button hurt  Oui ! Oui !

                                                                    ME  ( can't remember my name at this time) loving and hugging.LOL.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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

 

molimoli
Posts: 514
Joined: Aug 2014

You opened the can of worms  with the darn 2" ,hitting bottom and the orajel, for crying out loud, orajel ?  Anyways, how should we spell desperation = O-R-A-J-E -L

Thanks to the Creator for life and laughter in spite of our broken pieces, Today is a great day to be alive. Rejoice.

 May happiness and /or peace of mind greet us tomorrow.

 I am hugging you my dear overly creative sister, welcome to the fold.

Ps: remind me not to ask you for advice on anything,ok?  and if I ask you by mistake don't give it.

Buckley's rub comes to mind, feeling creative ?

 

Prissy777
Posts: 41
Joined: Dec 2014

Yes, I am going to Johns Hopkins and my doctor is very good and positive guy.  When I first arrived, everything was fine, like only five percent you shouldn't have to worry, this is the normal checkup etc.  Personally, I moved the appointment up a month earlier cause I had a *bad* feeling.  I came early as I spotted twice, once in May and then July.  That 5% echoed in my mind as the doctor who did my D&C said the same thing and called me two days later with cancer in January.

My doctor was saying the bleeding could be scar tissue but then when he looked and felt, he got a lot more serious.  No more jovial attitidue  and then ordered the biopsy.  They took a biospy (ouch) and I bleed a lot.   He then did a internal finger exam and even rectal.  He said, it may be serious and he can't promise anything we will have to wait untiil the results come back.

I have not said a thing to my family as I don't want to worry them.  Personally, I think it is back and I don't want it.  My back hurts like mad and I am sore where my ovaries used to be.  I also have this heavy feeling in my vaginal area, like I can feel it all the time, which is unusal.  I am also getting pain in the pelvic canal.  He has ordered a CT scan and I am getting it tomorrow as well.

I am glad the query lead to a great deal of humor.  God knows we could use it.  If it is negative, I will be very happy to be wrong.  I will let you all know when I do.  Thanks everyone for answering.  I appreciate the help. Let's just hope it is nothing.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Prissy, I hope you come back with great results.  We are all here for you. And, so many that have come before us can and do continue to provide experience. Whatever happens, there is a lot of knowledge and tools out there to help us fight this thing.

Thankfully, we can all continue to ask our questions and get unfiltered answers. For me, the humor really helps deal with what we have to put ourselves through to win.

Take care,

Cindi

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thank you for all the good thoughts, and no, on the councelling.  He doesn't believe in showing any weakness, especially emotional.  I had already gone through menopause when cancer came calling, so had lost interest loooong ago.  What time and physical changes didn't take the fun out of it, then 8 pregancies did!  But I can tell you fine friends this, I missed my life's work, my calling, becausing  I AM ONE DAMN GOOD ACTRESS!  Nuff sed!  LOL!

 

P.s. I COULD go into detail on the measuring thing, but will save that til another day when we all need a good laugh!  Bless your Hearts!  DebraEmbarassed 

molimoli
Posts: 514
Joined: Aug 2014

I can't help you on that but would like you to educate yourself on the pluses and minuses , Try to fully understand the behavior patterns of the cancer The behaviors are usually constant  except for few exceptions ,always in all diseases .I Hope that throughout this you  will force yourself to pause and take deep breaths often,so that your decisions are not hurried and uninformed ones.Those are hard to live with when the light bulb clicks on later.

Best wishes  and hopes  of the best outcome for you. You are at the right place, there are ladies here with stories to educate, ask the questions. any question.some one will answer or go hunting the answer for you.

Thanks for the Questions which as you see opened a can of humor , we had fun with it  but all the while thinking of you and the internal turmoil raging ..You are one of us and  our collective  spirits will find ,embrace and lift you up when you stumble or need added strength. The power of the mind is unbeatable , and untouchable by cancer, Just imagine us there as fences on which you  will brace and steady  yourself many times, We don't mind the lifting, we are building an army against the devastating and crippling mental effect cancer reeks upon us .The physical  part we may or may not be able to control, But we  must fight like solders to keep the mental spiritual part of us Cancer free,I am resolve to fighting that battle everyday .and hope everyone is resolved too,Hang with us often,you'll see., I came and I saw and felt nuff,nuff support,everytime, all the time.  Moli.

Prissy777
Posts: 41
Joined: Dec 2014

Dr. just called and said biopsy is positive.  Good news it is grade 1 so radiation should do the trick.  I thank you ladies for encouragement and humor. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

Prissy, thanks for letting us know. And sorry.  So glad it is still early in the process. This will be a blip in the road for you shortly!!!

Kaleena's picture
Kaleena
Posts: 2036
Joined: Nov 2009

Oh Prissy!

Hugs to you girl.   It is very stressful waiting and worrying about this.  Good news about it being grade 1 though.   You will see the humor regarding this post later.

For now, get it done and get it over with.   My best to you.

 

Kathy

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

So sorry for the recurrence, Prissy.  I guess if there is anything positive about this, it's the fact that it's  still grade 1, nonaggressive lazy cells and that radiation can eliminate them.  And as I've said before, this is why those of us with Stage 1, Grade 1 cancers are followed up.  Sorry you have to go through more stress and fear.  Like Kathy says, get it done and get it over with. 

Good luck,

Suzanne

Jeronil's picture
Jeronil
Posts: 2
Joined: Aug 2015

i too understand your reluctance or queasiness re internal vaginal radiation. The biggest negative to it is that you do have to forget modesty but there is no pain or even discomfort and zero side effects v's  mt external radiation which caused fatigue and nasty diarrh. I would take it anytime over external.

Prissy777
Posts: 41
Joined: Dec 2014

Thank you everyone for replying.  I talked to my doctor and he said even with stage 1, grade 1, the cure rate with radiation is 70 to 80%.  I hope that is me in there. 

I was unfortunate enough to be in the 5% recurrence for stage 1 so I don't know what the future holds. 

I basically feel like it is over and I now have a pretty firm expiration date.  If I could say anything, I guess I would have insisted on brachytherapy after surgery.  It might have prevented it from coming back.  Thank you everyone.

I am really sorry that anyone gets cancer.   It is a shame.

pinky104
Posts: 574
Joined: Feb 2013

I had stage IVb UPSC in March of 2010.  I read that I had a 9% chance of survival with this cancer in stage IV, but I am alive and in remission.  All I had was surgery and 6 rounds of carboplatin and taxol, no brachytherapy, so don't beat yourself up for not having insisted on brachytherapy.  I wasn't even offered that and didn't know about it until I read about it on this board a couple of years later.  I had originally asked my oncologist what the survival rate for my cancer was, and he'd refused to tell me.  He said that if the cure rate is 90% but if you happen to be in the other 10%, what good is knowing the average survival rate?  Just try to handle whatever comes your way the best you can.  I always expected the worst and then I knew I'd be prepared for bad news if I got it or I'd be happy if things didn't turn out as badly as I'd expected.  That's worked for me. 

molimoli
Posts: 514
Joined: Aug 2014

Prissy, shoulda,woulda  coulda leads to no good and  will take our lives away from us long before death,  don't get bogged down with that ,there is no redo on yesterday,no one has ever found a way to do that . you will need your strength and  mental fortitude in your effort to create a favorable tomorrow. Cancer's job is to reek havoc and our job is to minimize  or eliminate havoc. so cheer up and start planning your best defense, We'll be here for each other so use us when the stumbling comes along. I have found that this is a rugged road but no complete falls will be allowed ,keep reaching out to us , as I  will to all of you when my tumbleweed days comes rolling by again.

I am hugging ,praying,wishing and hoping for renewed health for all of us,  Nuff love, Moli.

 

Prissy777
Posts: 41
Joined: Dec 2014

Thank you everyone for the encouragement.  I guess I was in the stages of shock after the news.  Now I am action-girl ready to leap tall radiation and yes you certainly may put that where the sun don't shine.  Yes, I will gladly take chemo and provera and anything else you want to give me.  I have gone from the depths of despair to the charge of the light bridgade. 

Many of you have had this much longer and harder than me, so I certainly respect each and everyone of you.  Prayers and hugs for us all.   Thank you so much.   The road ahead may not be fun, but at least I still have a road ahead of me so far. 

I won't go until I have been kicked down 10000000000 times. 

Like many of you, the trick is GETTING BACK UP!  I hope I can help you all like you have helped me.  Thank you.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Way to go, girl!  As our Jan (Jazzy1) would say "You are a stastict of one"!  What happened to us may NEVER happen to YOU!  You have our stories, but listen to your body.  You know you better than anyone.  You have got this.  Stick with us, we've got your back!

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