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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: 1622
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: 903
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: 1622
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: 892
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: 1397
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: 1622
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: 1622
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!

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