SALLY: about the brachytherapy

susie1143

kansasgal said:

Susie - How are you doing?
Hi, Susue!

I've been thinking of you since you posted that you were scheduled for brachytherapy this week. Both Deb and I had such a horrible first treatment followed by two essentially pain free treatments. Now every time I hear of someone heading down that road I start to hold my breath and send a fervent prayer for no pain!

How are you doing?

I have completed chemo and brachytherapy. I had my very first CT scan last Friday and see the gyn/onc tomorrow for the results. I sure am hoping for NED! I have never had a CA-125, so I still don't know if it might have been a marker for me. I hope my blood work from last Friday will show that my low and high counts are back in the normal range! Peripheral neuropathy, fatigue, and memory problems persist.

I'm glad to read that you only need the brachytherapy and not the chemo. Like Linda and several other fabulous fighters on this site, I am a faithful user of my dilator. Both my radiological oncologist and my regular gyn/onc recommended waiting 2 weeks after the final brachytherapy session before starting to use the dilator. I use mine daily. Since I was diagnosed with both Type I and Type II uterine cancers, I DO NOT use ANY hormonal lubricants.

Good luck!

Sally

First treatment over, second tomorrow
Hi Sally:

All went well on my first treatment. So far I have been very blessed to have good doctors who keep up with new technology. They had wanted me to come in the evening before to have the C-Scan but the machine was not available. It just took longer on my first day since they had to do the scan. The actual treatment was for 6 minutes but because I'm short they had a little difficulty lining me up for the x-ray.

The doctor was very gentle and used a lot of lubricant. He told me that he prefers the larger cylinder. When I saw it, I wondered how he was going to get it to fit. But it was ok and surprisingly it didn't hurt. They keep a sheet over me as much as possible for some sort of modesty.

Tomorrow I go for my second and I was told that it should only take about 30 minutes.
I joked with the doctor that we should have a group rate since he had taken care of my mother in the past for breast cancer.

wje630

lindaprocopio said:

I knew that post on the water dilators would get yanked.
Any time a post seems to be promoting a product and encouraging folks to contact the poster about it, that breaks the rules here. (Even when I posted asking for recipes for a Relay for Life Cookbook that post was yanked because it broke their Solicitation rule.)

Please be careful about the hormone cream, as MOST uterine cancers are Type 1 and hormone receptive, and you sure don't want to be feeding your cancer. In my case my cancer was 100% papillary serous, which is a Type 2 cancer cell not receptive to hormones. (UPSC is Grade 3 but TYPE 2. And mine is Stage 3, so it's REALLY confusing!) I still use only the tiniest dab possible and only 3 times a week, using regular lubricant the other 4 days weekly. But UPSC is a very rare uterine cancer, so make sure what you have is a Type 2 cancer cell before you ask for hormones.

I am so sorry that using a dilator is painful for you. Did you start immediately after your radiation? I started the very next day and never have any pain at ALL; usually even falling back asleep when it's in.

You Are Probably Right
That's why I couldn't find her post. Too bad she had some good information on it. I went in today for my yearly PAP and my gyn gave me a prescription for Estrace. I told her about how you use it with your dilator instead of using the applicator and she said that made better sense. I don't know if you remember me from some other posts, but I didn't have the type of cancer you and others on here had. At the time I couldn't find any posts regarding my kind, Anal. So,I don't think the worry about the hormone usage, I also have had a hysterectomy. If I am not being too personal, what kind of dilator do you use and which size. Unfortunately I didn't start using them as soon as I should have because I thought I would be having sex a few times a week. Well, that's not happening so I figure if I ever want to have another pelvic exam, I had better use them regularly. Didn't your doctor tell you to use it daily? Thanks for all your advice, I am happy you were well enough to take your fabulous trip to Greece. What memories you will have! Take care and stay NED!

Wanda Engel
P.S I am also on Facebook

lindaprocopio

wje630 said:

You Are Probably Right
That's why I couldn't find her post. Too bad she had some good information on it. I went in today for my yearly PAP and my gyn gave me a prescription for Estrace. I told her about how you use it with your dilator instead of using the applicator and she said that made better sense. I don't know if you remember me from some other posts, but I didn't have the type of cancer you and others on here had. At the time I couldn't find any posts regarding my kind, Anal. So,I don't think the worry about the hormone usage, I also have had a hysterectomy. If I am not being too personal, what kind of dilator do you use and which size. Unfortunately I didn't start using them as soon as I should have because I thought I would be having sex a few times a week. Well, that's not happening so I figure if I ever want to have another pelvic exam, I had better use them regularly. Didn't your doctor tell you to use it daily? Thanks for all your advice, I am happy you were well enough to take your fabulous trip to Greece. What memories you will have! Take care and stay NED!

Wanda Engel
P.S I am also on Facebook

Wanda: I got my dilator from my radiation oncologist, size Med.
I actually looked online to see if I could find the same kind of dilator in Size Large, since I really wanted to be 100% my old self when I am with my husband. But even with the Size Medium, I am truly my old self again, sex-wise. I do press it in pretty deep, trying to correct any shortening that may have occured from the surgery. (TMI, as my granddaughter would say, "too much information". sorry.) When I was searching online to get the larger dilator, I read a lot of disturbing but informative information about other medical uses for dilators besides preventing scar tissue. Apparently dilators are used by young women who are born with a defect of having no real vagina, and with steady daily use (real time investment apparently) and upward pressure, within a year they can actually gradually create a vagina with forceful prolonged upward dilator pressure. (These were medical articles; no hoax. It's quite a story and disturbing as heck, but it does make it clear that a motivated woman can do anything!) The other medical use for dilators was heart-breaking and I hesitate to even share it because it haunted me afterward. But in brief, dilators in graduated sizes are used by little girls who have been raped in order to prevent scar tissue, much as we use them. (NO! NO!) (How can we feel sorry for ourselves with this small daily inconvenience when the world truly offers horrors far worse than cancer! Good to keep things in perspective. Never think cancer is the worst thing that could happen to you. There are those living with hurts far worse in our world. ENOUGH on this.)

My new gyn-onc advised me to use my dilator daily, and I do but I only use the hormone creme (and the tiniest dab I can get away with, smaller than a pea) 3 times a week. The company that made the dilator I was given does not sell retail online, so must just be a medical supplier, but perhaps you were given the same product: Syracuse Medical Devises.

wje630

lindaprocopio said:

Wanda: I got my dilator from my radiation oncologist, size Med.
I actually looked online to see if I could find the same kind of dilator in Size Large, since I really wanted to be 100% my old self when I am with my husband. But even with the Size Medium, I am truly my old self again, sex-wise. I do press it in pretty deep, trying to correct any shortening that may have occured from the surgery. (TMI, as my granddaughter would say, "too much information". sorry.) When I was searching online to get the larger dilator, I read a lot of disturbing but informative information about other medical uses for dilators besides preventing scar tissue. Apparently dilators are used by young women who are born with a defect of having no real vagina, and with steady daily use (real time investment apparently) and upward pressure, within a year they can actually gradually create a vagina with forceful prolonged upward dilator pressure. (These were medical articles; no hoax. It's quite a story and disturbing as heck, but it does make it clear that a motivated woman can do anything!) The other medical use for dilators was heart-breaking and I hesitate to even share it because it haunted me afterward. But in brief, dilators in graduated sizes are used by little girls who have been raped in order to prevent scar tissue, much as we use them. (NO! NO!) (How can we feel sorry for ourselves with this small daily inconvenience when the world truly offers horrors far worse than cancer! Good to keep things in perspective. Never think cancer is the worst thing that could happen to you. There are those living with hurts far worse in our world. ENOUGH on this.)

My new gyn-onc advised me to use my dilator daily, and I do but I only use the hormone creme (and the tiniest dab I can get away with, smaller than a pea) 3 times a week. The company that made the dilator I was given does not sell retail online, so must just be a medical supplier, but perhaps you were given the same product: Syracuse Medical Devises.

I Know What You Mean
Linda:
I know what you mean about the other disturbing reasons the dilators are used. When I was trying to find mine online, I saw all the information you spoke about. It is hard to feel sorry for myself when there are so many young women who are suffering much more than I am. I was not even aware of some of the medical reasons the dilators had to be used. The fact that some young girls are born without vaginas and have to actually make one was eye opening for me to say the least. My problems pale in comparison. I got my dilators(a set of 4 sizes) from a web site called Vaginismus.com. They are hard plastic with a handle that is interchangeable. I guess the handle is needed by some in order to remove it. I don't have that problem since I can't insert it in that far. Since I got the Cool Water Cone in the mail, I have been using it. It is much more comfortable for me because it isn't so hard. I will probably have to go back to the plastic one though in order to use the hormone cream, I doubt if it would stick to the soft cone. I know what you mean by TMI, I can't even talk to by boyfriend about this problem. Originally my onocologist had told me I could just have sex several times a week and didn't even prescribe a dilator. The problem with that is, now my boyfriend doesn't even want to try, so I have to use them so I don't close up altogether. I shouldn't be complaining, like you said there are so many other women who have much bigger problems than I do. I am thankful that I am still NED and am grateful for that also. Like someone else said on this site, I just need to get used to using the dilators for the rest of my life(until I get so senile I forget how to!).
Thanks for the input. Take care
Wanda

susie1143

wje630 said:

I Know What You Mean
Linda:
I know what you mean about the other disturbing reasons the dilators are used. When I was trying to find mine online, I saw all the information you spoke about. It is hard to feel sorry for myself when there are so many young women who are suffering much more than I am. I was not even aware of some of the medical reasons the dilators had to be used. The fact that some young girls are born without vaginas and have to actually make one was eye opening for me to say the least. My problems pale in comparison. I got my dilators(a set of 4 sizes) from a web site called Vaginismus.com. They are hard plastic with a handle that is interchangeable. I guess the handle is needed by some in order to remove it. I don't have that problem since I can't insert it in that far. Since I got the Cool Water Cone in the mail, I have been using it. It is much more comfortable for me because it isn't so hard. I will probably have to go back to the plastic one though in order to use the hormone cream, I doubt if it would stick to the soft cone. I know what you mean by TMI, I can't even talk to by boyfriend about this problem. Originally my onocologist had told me I could just have sex several times a week and didn't even prescribe a dilator. The problem with that is, now my boyfriend doesn't even want to try, so I have to use them so I don't close up altogether. I shouldn't be complaining, like you said there are so many other women who have much bigger problems than I do. I am thankful that I am still NED and am grateful for that also. Like someone else said on this site, I just need to get used to using the dilators for the rest of my life(until I get so senile I forget how to!).
Thanks for the input. Take care
Wanda

Dilator
OK girls, Friday is my last day of Brachy. How long after do I need to start with the dilator? I did get the Cool Water Cone before it was taken off the website. Of course my husband can't wait to do his part in all of this.

Susie (Lilly the Clown)

culka

susie1143 said:

Dilator
OK girls, Friday is my last day of Brachy. How long after do I need to start with the dilator? I did get the Cool Water Cone before it was taken off the website. Of course my husband can't wait to do his part in all of this.

Susie (Lilly the Clown)

I never used the dilator and
I never used the dilator and true is that we never stoped as soon as I got green light after the surgery. So if you are OK, let him try and good luck.

susie1143

culka said:

I never used the dilator and
I never used the dilator and true is that we never stoped as soon as I got green light after the surgery. So if you are OK, let him try and good luck.

Brachy
Regarding my husband's part (the one he's really looking forward to). I asked the nurse this past Friday after my 2nd treatment and she said no until further notice. Not sure of why. That's why I was inquiring. Inquiring minds want to know...especially my hubby.

Thanks,
Susie (Lilly the Clown)

culka

susie1143 said:

Brachy
Regarding my husband's part (the one he's really looking forward to). I asked the nurse this past Friday after my 2nd treatment and she said no until further notice. Not sure of why. That's why I was inquiring. Inquiring minds want to know...especially my hubby.

Thanks,
Susie (Lilly the Clown)

True is that after my
True is that after my rad/onc told me that my bigest problem in the future should be surgery for bowel or blader obstruction and, check this, that I will be unable to eat some food like popcorn or fried onion I stopped asking. That junk I am not eating anyway and better answer I can find online.

lindaprocopio

susie1143 said:

Brachy
Regarding my husband's part (the one he's really looking forward to). I asked the nurse this past Friday after my 2nd treatment and she said no until further notice. Not sure of why. That's why I was inquiring. Inquiring minds want to know...especially my hubby.

Thanks,
Susie (Lilly the Clown)

SUSIE: here's the 'good word' your husband is waiting to hear...
My husband and I were even intimate a couple nights BETWEEN brachys! Just take it easy and you need to be in control so you won't be afraid. We used a condom and a lubricant (so wierd!) to lower the risk of infection. I was a little inhibited by my fear of it hurting, but it didn't hurt and I had no bleeding or pain during or afterwards.

As far as being told WHEN, I'll share a funny story. My gyn-onc surgeon told me to refrain from sex until after he saw me again following my hysterectomy. But I was having my chemo at a facility closer to home and had no real reason to need to see my surgeon when I was being monitored by a chemo-onc. So when I started feeling better after the hysterectomy, I carefully followed the instructions given to me by the staff at the hospital in a booklet from the American Cancer Society and used a condom and lubricant. The next time I went in for my chemo, I told my chemo-onc that I had to confess that we were unable to wait until I went back to see my surgeon 'after my chemo was over', but that we'd used a condom. His response was "Why the condom?" I told him that I was following the instriuctions in the booklet his staff had given me. He laughed and said "That's only if you're going to be having sex with random strangers. You have my permission and blessing to have sex with your husband, minus the condom, any time you want and feel up to it."

Use it or lose it. That's what I think anyway. But I add that using a dilator daily will give you the confidence to relax and not be afraid that being intimate with your husband will hurt. That little daily exercise keeps me confident that I have no scar tissue or anything to get in the way of my fun. I need that confidence so that I can relax and enjoy myself. I can not encourage you more strongly to work it into your daily routine. I would never discuss this in such a public forum if I didn't think it was vital information.

deanna14

susie1143 said:

Brachy
Regarding my husband's part (the one he's really looking forward to). I asked the nurse this past Friday after my 2nd treatment and she said no until further notice. Not sure of why. That's why I was inquiring. Inquiring minds want to know...especially my hubby.

Thanks,
Susie (Lilly the Clown)

Doc says no...
The first time I asked my rad/onc about intercourse during radiation he said no. I didn't stop there, I kept asking with each visit and eventually he gave me the okay with caution. Take it slow and easy, use moisture replacement, etc...
If I were you and you really want to start trying, I would ask again and if you are told no, ask for an explanation. I don't see why it would be contraindicated as long as it is not rough. Your tissue will be more vulnerable, but if you are careful it should be fine.
I agree with Linda. I was never given the dilator and my radiation ended in December of last year. Even now (and I suppose from now on), if we go several days without having sex it is a little uncomfortable at first. I have considered purchasing a dilator online and still might.

Good luck

california_artist

deanna14 said:

Doc says no...
The first time I asked my rad/onc about intercourse during radiation he said no. I didn't stop there, I kept asking with each visit and eventually he gave me the okay with caution. Take it slow and easy, use moisture replacement, etc...
If I were you and you really want to start trying, I would ask again and if you are told no, ask for an explanation. I don't see why it would be contraindicated as long as it is not rough. Your tissue will be more vulnerable, but if you are careful it should be fine.
I agree with Linda. I was never given the dilator and my radiation ended in December of last year. Even now (and I suppose from now on), if we go several days without having sex it is a little uncomfortable at first. I have considered purchasing a dilator online and still might.

Good luck

Ah, isn't radiation, ah radioactive?????
Maybe radioactivity is not so swell for a penis? ya think??

lindaprocopio

california_artist said:

Ah, isn't radiation, ah radioactive?????
Maybe radioactivity is not so swell for a penis? ya think??

They 'geiger counter' you before you leave the room.
You're not 'hot' with radioactivity when you leave the room, so I don't think there is any danger to your husband. They 'geiger-counter' you before they let you leave the room and walk amongst the general population.

(Ever see those T-shirts that say "HOT" with the "O" replaced witgh the warning symbol for radioactivity? If I were younger and hotter, I'd have gotten one of those for my bracy sessons!)

susie1143

lindaprocopio said:

They 'geiger counter' you before you leave the room.
You're not 'hot' with radioactivity when you leave the room, so I don't think there is any danger to your husband. They 'geiger-counter' you before they let you leave the room and walk amongst the general population.

(Ever see those T-shirts that say "HOT" with the "O" replaced witgh the warning symbol for radioactivity? If I were younger and hotter, I'd have gotten one of those for my bracy sessons!)

Husband's part.
Hi all.

Thanks for the information. I personally don't see why no sex until after Brachy. The only thing that I came up with inner radioactivity. Maybe it's still radioactive internally. Tomorrow is my last treatment.

JoAnnDK

lindaprocopio said:

I knew that post on the water dilators would get yanked.
Any time a post seems to be promoting a product and encouraging folks to contact the poster about it, that breaks the rules here. (Even when I posted asking for recipes for a Relay for Life Cookbook that post was yanked because it broke their Solicitation rule.)

Please be careful about the hormone cream, as MOST uterine cancers are Type 1 and hormone receptive, and you sure don't want to be feeding your cancer. In my case my cancer was 100% papillary serous, which is a Type 2 cancer cell not receptive to hormones. (UPSC is Grade 3 but TYPE 2. And mine is Stage 3, so it's REALLY confusing!) I still use only the tiniest dab possible and only 3 times a week, using regular lubricant the other 4 days weekly. But UPSC is a very rare uterine cancer, so make sure what you have is a Type 2 cancer cell before you ask for hormones.

I am so sorry that using a dilator is painful for you. Did you start immediately after your radiation? I started the very next day and never have any pain at ALL; usually even falling back asleep when it's in.

water dilator
Hi, new here to posting....

I found the water dilator just by googling the term. They sound good, but are pricey - and one only can be used for two weeks. I think it would come out to about $500 a year.