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Brachytherapy dilator use

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

I've just finished my 6 rounds of chemo and am now scheduled for brachytherapy radiation (they had found stage 1A carcinosarcoma (MMMT) and UPSC). I'm now scheduled for 3 brachytherapy sessions. I'm finding that I'm rather anxious particularly about the long term dilator use. I found that research on the effectiveness (both in preventing recurrences and the degree to which it even prevents scar tissue/adhesion build up) is pretty limited and there is even a lot of disagreement about how long is necessary after radiation, how often per week, etc., etc. I did a search and found it's been awhile since anyone posted here about their experience, specifically with the dilator and am looking for advice. On the one hand I feel an additional step if it's likely to prevent recurrence may be a good investment, on the other hand with the downsides of this and the lack of any half-way conclusive results about whether it will help is contributing to my anxiety level. Also having been diagnosed with the two different types of growths it's even more confusing. Wondering if there's anyone who can offer experience or ideas on this?

Sandy

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Sandy,

I went through the same hard decision. I decided to get it because I wanted to grab onto everything offered to get my best chance at never having to go through chemo again.  I finished the brachy therapy on 1-28-16. It truly was the easiest part of this entire experience.  So, I have faithfully used the dialator 2 days a week after I started them (14 days after brachy ended).  Or, sex once per week and the dialator once per week. 

They had me use the dialator every day for 2 weeks, then 2 Xs per week after that. I did get a bit sore after that first week and switched to the cool cones for the 2nd week. Since then, I only use the "standard" dialator instead of buying the cool cones. I have not had any problems at all. It really isn't a big deal. I turn on the TV to help pass the time. 10 minutes goes by pretty fast. I have had a couple of check ups now with no problems. So, it is well worth that 20 minutes a week to stay healthy!

Good luck on your decision. For me, I'm glad I did it.

Love and Hugs,

Cindi

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I'm trying not to be negative, but I hate using the dialator and I don't use it as often as I should. I don't understand what it would have to do with reoccurrence. I thought it was primarily so the doctor could examine you. Anyway I'm trying to get myself to use it more often.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Soup, using the dialator has nothing to do with a recurrence. I was talking about my decision to have the brachytherapy so that I could do whatever I could to not have a recurrence.  Sorry my message wasn't clear. Glad you called it out!

You are correct, the dialator is to keep scar tissue from literally closing up the vaginal walls.  Should that happen, internal check ups would be impossible.  From my perspective, I have an active sex life and really want to keep it. Along with keeping check ups viable. I can't say I look forward to using the dialator. I don't particularly like it either. But, it isn't painful. And, is worth the effort for the benefits. My radiologist believes after two or so years it may not be necessary any longer based on patients he has worked with. So, I plan to continue to use it and I'm glad it isn't painful. Thus, my comment regarding it being no big deal to use it.

Love and Hugs,

Cindi

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Cindi, that's really helpful information. My rad oncologist left me with the impression that this would be the rest of my life and that I would need to do it everyday. Doesn't sound quite as bad as I was imagining. 

BTW what are "cool cones"?

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

Cool water cones are also a type of dilator, but they are softer and more tapered and have their own lubrication.  You keep them in the refrigerator, hence the "cool" cone.  I stumbled upon them because after my hysterectomy, even before brachytherapy, I was already showing some signs of stenosis and I wanted to nip that in the bud. I ordered the smallest size from coolwatercones.com.  I found them much more comfortable as they are softer than the typical dilator. I have since moved on to a small vibrator, the hard plasic dilator from the radiology department, and a larger cool water cone.  I have my second pelvic exam coming up soon, and I'm hoping all of this has made a difference and it will be much more comfortable.

Unfortunately, I cannot speak to the sexual side of this as the BF has not completely recovered from prostate surgery/radiation.  But soon, I hope!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hi Chris,

How soon after surgery did you start using the cool cones?  I'm afraid I might have the same issue. Post-surgery pelvic exam at 2 weeks was NOT fun.  I'm 5 weeks out from surgery now and I thought the surgeon's instructions were nothing inside for 6 weeks I believe : )

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

My oncologist told me 12 weeks, Susan.  But I've had two pelvic exams with no pain at all.  He also did not recommend radiation unless I had a recurrence.  So, hopefully I will not have to have radiation at all but if I do, I'm going to remember all these tips.

Love,

Eldri Elizabeth

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

I didn't know there was a problem until the first radiologist I saw did a quick pelvic.  Owww, owww, oww!  He was the one who said there was already some stenosis.  I actually started inserting a gloved, lubed finger to check things out. Yup, it was kinda tight.  But after about a week of that, I moved to the cool cone.  And my gyn/onc said no sex for 3 months.

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

No wonder you were worried!  My instructions are 2 Xs per week for 5 to 10 minutes.

My radiologist said officially they have to say it is for the rest of your life. BUT, that based on what he has seen, it is likely that after 2 or so years you won't need to do it.

Take care of yourself. I hope your next steps go well for you!

Love and Hugs,

Cindi

I see that Chris already explained the cool cones to you. She is the one that told me about them as well. They were very helpful for me during that initial two weeks where I had to use the dialator every day. I highly recommend them too. In fact, I took them to the PA at my radiologist's office to see if they would order them. :-)

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Cindi, this information has made all the difference in my choosing to go ahead with this! I was about to say NO to this treatment and just take my chances! Sounds much better than the info I was given! BTW just ordered the cool cones.

Thank you, thank you!

molimoli
Posts: 514
Joined: Aug 2014

Dear Lord the more I read the more I hope that I'll never need any of these tips,ouch! My 'chicken self' is making an appearance,right here ,right now.

You are all getting a hug, feel it.

A valuable subject, no doubt to many.

I admire the honesty ladies, keep on keeping on, Moli,Nuff love

Razmataz1's picture
Razmataz1
Posts: 3
Joined: Aug 2015

My experience with this was that it really wasn't that much of a "big" deal in comparison to the chemo.  I only used the dialator for 7 months and even then I wasn't good about doing it faithfully.   I was a little tight but worked through that and am now fine.  I'm glad I did that radiation as I also wanted to be reassured that I had done everything I could to prevent it from reoccuring...

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Sandy, thanks for letting me know the information helped. Made my day. :-)

Raz - Great to hear from you. It is nice to know that I may be able to get away with skipping every now and again!

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

And I'm glad I used the search engine.

I think that for many who use this board frequently, they've all "been there and done that, " so I'm new to all this and learning. I'm cheerful, then I'm miserable. I wish I could be much more optimistic about this whole experience, but I'm NOT looking forward to using the half dozen apparatuses I got from my radiologist. 

I'll be checking out the cool cones. 

MAbound
Posts: 1153
Joined: Jun 2016

Thanks for bringing up this old thread. It's been a long time since I've seen Edit Girl's picture and I dearly miss her. She had such a helpful, calming presense on this board; I wish you could have known her.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

Oddly, I have gotten to know so many members here who are angels among us. I didn't sleep well last night, because I have had a couple really rough days. I just read through my path report (again) and I now have to worry about contacting my new clinic, yada yada yada, bc the myometrial thickness and depth of invasion numbers are different from "my" path report, and I have a "big" phone appointment with my radiology onc this coming week, and I'm sure it's going to be all about her instructing me to begin using the dilators!

She gave me a BAG FULL of different sizes. I could seriously make wind chimes out of them! 

I never know when I'm going to "step in it" in this site. There seems to be kind of a "way we do things around here," and I'm sure there are probably people getting sick of my constant presence, but I'm just kind of a wreck right now. I should be better soon. I've noticed, like I said elsewhere, that I'll have a day that's really hard, then I'm okay again. I love how much I learn here. I'm surrounded by women who've had their heads in this game for a long time. I don't want to hurt anyone's feelings, though. I love some of the older threads, the threads relevant to me, but I also realize the danger of interacting with people now gone. It does not scare me, and I can hear their voices talking to me through the thread. 

Edit Girl's spirit lives on through her words, like a Shakespearean sonnet! May she be remembered with love. Thank you, MA. 

MAbound
Posts: 1153
Joined: Jun 2016

As someone who has "stepped in it" a few times since I've been here, I'd say, "don't worry about it". The longer you are here and the more you post, it's bound to happen. We try to keep this a safe place to vent as well as get advice and sometimes somebody's toes get stepped on. The important thing is to be as forgiving when someone unintentionally pushes your buttons as you'd hope they'd be when you push theirs. We're family here, afterall, so it's not realistic to expect that that there won't be disagreements from time to time.

Lyn70
Posts: 61
Joined: Jan 2021

I just started using my dialator tonight. Ugh! My radiologist's nurse gave me one box marked small. It reminds me of a taper candle and I would disagree with the 'small'. She also gave me some lubricant which I already see irritates me. I washed it off immediately. Checking out cool cones from editgirl's post. Bless her for the information which lives on in us all. Hugs.

Harmanygroves's picture
Harmanygroves
Posts: 236
Joined: Jun 2021

I'm on the dilator train, and I'm feelin' real blue

I got the dilator gel, and it feels like nasty goo

It's an ugly white color, and I don't know what to do.......

 

Editgrl was witty and beautiful, and she lives on. She left "us" a lot of good information, and she joins hallowed ranks of angel women who were smart, kind, and beautiful, and I'm grateful beyond words. 

woodstock99's picture
woodstock99
Posts: 108
Joined: May 2021

My brachy eneded 8/2 and I used mine for the first time on 8/19 at my first appointmnet with pelvic floor therapist.  I was given the hard plastic one by the RO nurse but she and the RO told me to buy silicone ones which I did online on Amazon. 

I have been using the smallest size every other day since then working up from 5 minutes to 15 minutes. 

I am going for session2 today and bringing size 2 with me to see if I graduate although it's seems very large compared to size 1. 

Pelvic exams have been difficult for me since menopause and lack of sexual activity so I am definitely going to use mine and so far it's not awful. 

I do mine in the early morning after I take my thyroid pill as I have to wait 30 minutes to eat or drink anything so I hop back in bed anyway so decided its good time for me.  

I am 68 and hopefully will stay fit and agile enough to be abe to continue to use them as long as necessary.

This is the set I bought:   

https://www.amazon.com/gp/product/B07BKB3852/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

And the pelvic floor therapist recommended this lubricant:   

https://www.amazon.com/gp/product/B078HV733W/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 

Lyn70
Posts: 61
Joined: Jan 2021

Thanks, I will check these dialators out, too. Some Labor Day online shopping. 

 

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