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SALLY: about the brachytherapy

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

One other new tidbit I came away with from my appointment with the new gyn-onc: Apparently there are more than one kind of vaginal brachytherapies. I had no idea there were different kinds. My gyn-onc said that I had been given the very latest and least damaging of brachy-therapies. I looked on my appointment sheets for you, hoping to find some detail that would give you something specific to ask about, but there was nothing. I know that my brachy did not require a rectal marker or a catheter (and I know others that had to have both) and that I was lined up for the brachy using a 'positioning CT-scan' (no contrast or IV) each time, with the radioactive material inserted robotically after I was alone in the room. I hope that's enough to help you advocate for the 'better'/'safer' brachy. It's a pain to have to shop around for the technology that you want used on your body, but when it comes to lessening the chance of lasting side effects, you know it's worth some effort. I just 'lucked into' having IMRT for my pelvic radiation and this 'better' technology for my brachy; I didn't know enough to ask for it at the time. But I do feel blessed that I had the best technology for my radiation and that I have no side effects now that it is over, other than having to use the dilator daily, which is really no worse than using a tampon.

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

I guess I am scheduled for a combination of better and worse. My insurance "financially prefers" the hospital I'm scheduled for (rather than the other main hospital in Wichita with its associated cancer center), and I really like the rad/onc at the preferred hospital. I have known him for 25-30 years, ever since he was a college student majoring in physics. CT-positioning (better) coupled with a catheter (worse), but no rectal marker/probe (better). I had considered receiving the brachy in Oklahoma City (state of the art and my insurance would fully cover it), but it's about a 2.5 hour drive down and another 2.5 back. Doing that 4 times in 11 days seems a tad ridiculous. I will just bear with any clunkiness and all the associated indignities, and by September 4 the brachytherapy will be history and I'll have a new dilator as a souvenir!

Thanks, Linda, for all of your coaching!

Sally

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My brachys were a week apart. I mentioned to my oncologist that I knew of people who had 3 in the same week, and he said 'not this kind; you need a week to recover'. I had HDR (high dose radiation) but maybe all brachys are HDR ??

Regardless, I wish you well with this and want to reassure you that it is easy easy and no pain at all while you have it, and that I was even able to have sex between treatments with no bleeding or pain. A couple of weeks from now it will be all over. HUGS!

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

I had understood that there is also a low dose delivery for which the patient stays in the hospital attached to equipment for a long period of time (overnight? longer?) for each treatment, and that the high dose takes just a few minutes following a 1-3 hr set-up.

I will discuss the frequency and amount of radiation with the rad/onc when he calls. In my research I found two HDR treatment protocols of 3 treatments spaced a week apart. Maybe each of my 4 is set at a bit lower a dosage??? I will be sure to ask.

Thanks, again.

Sally

Is Danville up near Hazelton?

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

I will be starting brachytherapy this week. A total of 3 treatments once a wk. My Dr said it is HDR, I will need a urinary catheter and possibly a rectal tube. They showed me this large 3 pronged applicator that will be inserted. I have no idea how that is going to fit. Others have talked about getting medication to help relax before treatment. My Dr gave me a script for Valium. I thought this was going to be quick and easy that I would drive myself. I am an ICU nurse and understand all these things, but why must they use them all for radiation. I'm told my whole procedure would take up to 4 to 5 hrs in the hosp. My husband will do the driving and I think I will take the Valium before I leave home.

Anyone else need something to help relax? Did it work?

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Hi, Deb!

It looks like we are Twinkies this week! If you are not having your first treatment tomorrow, I can let you know how things went for me. I have not been given anything to help me relax. Quite the opposite: my husband came back from the store with four enema cartons in the EXTRA LARGE size. What was he THINKING!

Sally

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Hi Sally,

I was told I would need to do a fleets enema. I'm sure they did not mention the EXTRA LARGE size. My brachy is on Thurs. Good luck tomorrow. Hope you can sleep well.

Deb

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Hi, Deb.

I poured out almost half of the Fleets bottle contents before I used it! The enema went fine.

Next week I will take both a Valium (Dr. Rx post-procedure) and 800 mg of acetaminophen (Tylenol) ahead of time. Lying on a board for almost 3 hours without moving is quite painful if one has arthritis of the lumbar and sacral spine and the hips. Yesterday I came home, ate lunch, went to bed, and slept until evening. I think the catheter did not go in as easily as it might have. The nurse did mention that she noticed swelling of both the urethral opening and the labia. I have no idea why since we have not had intercourse in at least 10 days. Also, although my ankles were somewhat swollen a bit over a week ago, that swelling went down a week ago today. The stretching of the vaginal walls was also much more painful than I had anticipated. Wish I still had that natural youthful lubrication! The appliance was inside the vagina for about 2 hours and 45 minutes. Afterward I felt as if I had had very rough intercourse without any lubrication. (And I'm glad I have NEVER experienced rough intercourse without lubrication!) I'm glad I was able to sleep all afternoon, as I has slept rather poorly the night before. The sore vaginal area lasted until about noon today.

Now I am no longer noticing the vaginal area, but the urethral opening is still quite sore. Sitting is uncomfortable, and I have spent a good portion of the day (except for appt w/ gyn/onc) in bed. Labs are still OK, so chemo infusion #4 is tomorrow morning.

At my brachy appointment yesterday the rad/onc and I decided on 3 rounds of brachytherapy at 1-week intervals. A big THANK YOU to to LINDA for pushing me to do more research and ask more questions! Research is hard for me these days. As I am reading I forget what was in the previous paragraph. I just have to print out info I find and then have my husband review it late at night after he has stopped brief writing and is quietly sipping a glass of wine before bed.

I am so grateful to my daughter for accompanying me to chemo & brachytherapy appts and to the appts with the gyn/onc preceding each chemo infusion, and to my husband for accompanying me to all of my treatment-planning appointments. I have several close friends who I know would be glad to help, but I feel most comfortable with family members at these appointments.

Deb, I wish you the very best on Thursday. Please let me know how it goes for you.

A big hug from Sally

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I am so sorry that your brachy is this hard! I never had to do an emema. I was in and out of the place within an hour, no catheter, and the radioactive material was in me less than 10 minutes, and the vaginal 'rig' less than a half hour total. I was never sore. And I didn't do my radiation concurrant with chemo; chemo was over a full month before I started radiation. I am so sorry that this is as hard as it is for you. ((((((Big hug)))))).

But you've got one down! You're getting there! (((another hug))))!!

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Hi, Deb!
My "lady parts" are feeling OK now. How are you doing? I sure hope the valium helped as I am counting on valium plus the 800 mg of acetaminophen to help me next time. The chemo Wednesday went OK. Slept the rest of that day but dragged myself into the office for a while both Thurs and Fri. I think I need to go in today for a while, too. Really feeling exhausted! Then I'll start girding my loins for Monday morning's brachy. Not for wimps!

Please let me hear from you!
Sally

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Brachy was Thurs. I took Valium 5 mg before I left my home. Of course my husband drove. I requested they use the smallest applicator because of just finishing 5 wks of radiation I was sure there was shrinkage and I was still sore. During the intertion of the applicator, it felt like having childbirth for 15 min without the epidural. There were alot of silent tears while the nurses were holding my hands. They told me not to hold it in, but I did for the most part. From my waist done there was severe trembling that I could not control. They were holding my hands either to comfort me or to keep me from punching out the Dr. After it was all in the Dr asked if it was now tolerable. "NOOOOOOO!" Ok then, lets use the smaller one. Well hello.....after all that there was a smaller one!

Before the new insertion I was given a Vicodan. The smaller one went in easier but I was extremely sore from the first applicator. After the Ct scan was done and they attached the applicator to a stationary metal device I was given another Valium. I then waited on the stretcher for 1 hr and 45 min to get radiated. While on the stretcher they propped my legs to a comfortable position. I was less sore because there was no more poking and probbing , but it still felt like a metal rocket up there. My poor husband, he just held my hand in silence.

When I came home I took a 4 hr nap. The next day I did not feel that bad and was able to do a few errands.

I am not looking forward to this Wed. I am dreading it. You can be sure I will take more Valium and pain med before I leave the house this time. No way was I prepared for this even with all the reading I had done as well as the talking with my Dr and his nurses. Is this the norm? I sure hope not. External radiation went so well. (Except for a wk off do to a very bad "sunburn." I would rather do that all over again than have the brachy. They offered to use Lidocaine gel the next time to help numb it up a bit. I hope it helps.

Sally I hope your second one is easier than your first. Good luck.

Debbie

npl8261
Posts: 33
Joined: Jun 2009

I have 7 more external radiation treatments before I start Brachy and it sounds rough. I will be in Dana Farber for 4 sessions with High Dose Radiation, two sessions a week for two weeks. I was told that spreading the treatments out over 4 treatments would minimize the vaginal damage. Also I was told to expect to be there just under an hour. During my consultation I was measured for the cylinder but there was no mention of a cathetar. My understanding is that Dana Farber is one of the only Boston area hospitals with a dedicated site for the brachytherapy and because of this they can spread the dosage out over more treatments. Based on Linda's description of her Brachytherapy that is how it was described to me when I went in for the first visit with the doctor.
I am glad I read these postings so there are no surprises.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

When I read these accounts of your brachys, I could just cry for you because there is technology available that can make vaginal brachytherapy SOOOOOOO much easier than this, and the new technology is so much less damaging long-term!

npl8261, I'll bet Dana Farber has the same kind of 'newest' brachy as I had. I didn't have a catheter or rectal marker. I was in and out of the clinic within an hour, and the radiactive material was only in me less than 10 minutes. I had asolutely NO pain (ZERO) during or after the procedure. It wasn't any more humiliating than your regular annual internal exam.

Do be sure and ask for a dilator to use daily after your last treatment. But don't worry too much about the brachy; it does sound like yours will be more like what I had. I didn't take any kind of pain meds and didn't need any.

((((((BIG HUGS TO YOU ALL))))))).

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Linda, did you have what they call a cylinder type of brachytherapy. I think that is different from the applicator type. I now remember the conversation with the Dr and nurse about the upcoming brachytherapy. When I described my "tightness" they mentioned something about "we can always do the cylinder if needed." If that is the case, I will see if that is an option for me.
Deb

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I don't know enough about the various types of brachytherapy to know what they call the type I was given. They did use a cylinder that was initially inserted while I was on the 'positioning CT table.' I had an initial 'simulation' appointment before the brachys, where I had the initial CT-scan with this cylinder inserted. The simulation was the only brachy CT-scan where I had to fast beforehand and where they used IV-contrast for the scan. During the simulation I was fitted with a silicone-looking hollow tapered 'cylinder' (but closed on the tapered in that went in first and only open on the end that went in last). It was no more uncomfortable than a tampon, and was slicked up with a ton of lubricant, so much that I worried about it sliding out too soon if I coughed or clenched my muscles at all.

Then at each of the 3 brachys, I would start out on the CT-positioning table and they would insert the vaginal 'cylinder' there, line up my original psoitioning CT-scan film with a CT-scan they would do each time, sometimes jiggling the 'cylinder' to get it in just right. Then they would slide me and the board under me onto a wheeled gurney, careful to keep me exactly in position, and wheel me into the brachy room. On the days of my brachys, I didn't have to fast or have an enema or anything, and they didn't use barium or IV contrast for the 'day of' CT-scans. No catheter, no rectal marker, just the vaginal cylinder.

Then I'd wait, vaginal cylinder in place, in the brachy room, for the 'physics' doc to come in and tell me about the current half-life of the radioactive material and let me know how many seconds the radioactive material would be inside me (always less than 8 minutes). When the oncologist was ready, I'd be alone in the room and the radioactive material was inserted robotically into the vaginal cylinder. It never hurt at all; before, during or after the treatment. When all the whirring and blinking lights stopped, the physics doc would come in and geiger-counter me, and then the technicians and oncologist would remove the cylinder and help me off the table. From the time I entered the building until I left it was never more than an hour total.

If you can get this type of brachytherapy, go for it. Not only is it painless and less degrading, it is less damaging and just as effective. ((((HUG))))

maryln3
Posts: 65
Joined: Jul 2009

let me ask...are u overed up during this procedures...or bare *** naked....

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

I was able to keep my shirt, bra, and clinic gown on with the gown pushed up to my abdomen. At first I was covered from neck to toes by heated thin blankets and/or sheets. Except when having the catheter inserted (5 to 10 minutes, depending on the session) and later when the internal radiation cylinder was inserted and positioned and the external equipment was being positioned between my thighs (5-10 minutes), and later when the radiation machine was attached to the equipment sitting between my thighs (3-6 minutes), and the radiation machine detached and all of the internal & external equipment removed (4-6 minutes), and the catheter removed (2 minutes), my lower body was covered by a sheet. I was really grateful for this covering while I was wheeled from the radiation room to the CT positioning room and then back again to the radiation room! So, although I was covered, the covers kept being moved off and then back on as the session progressed. The equipment between my thighs and I were all covered during the positioning CT scan, during the actual radiation treatment, and during the times I was waiting for the "next event".
Hope this info helps!

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Hi, Debbie!

This morning’s brachytherapy was as different from last week’s as day and night. I took both the valium and the 800 mg of acetaminophen before I left home. I explained to the nurse (a different one from last week) the problems I had experienced. I told the nurse that my “online buddies” were appalled at the amount of pain I had experienced. She seemed genuinely surprised to hear of my pain. She told the doctor about how many days my discomfort had lasted and how painful I had found the procedure while looking back upon it. He, too, seemed surprised.

Today the catheterization followed by the contrast dye went fine. Not pleasant, but NO REAL PAIN. A different nurse for this, too. The doctor decided to wait to put me on the board and insert the vaginal cylinder until I was in the CT room. This time although I felt a lot of pressure internally as the cylinder was placed and stabilized inside me, there was NO ACTUAL PAIN. The CT technician placed several towels to help support my legs and relieve lower back strain. Following the CT positioning scan I was slid back onto the other “bed” and wheeled back to the radiation room where my daughter sat with me for 20-30 minutes until it was time for the radiation. I was still in NO PAIN – just a feeling of immense internal pressure. I left the hospital in under 2 hours from my arrival and was still in NO PAIN.

The valium made me tired for the rest of the day. In the late afternoon (following a nap from 11-3) I had my daughter take me to work to do payroll because I felt incompetent to drive, and her husband picked me up to bring me home where I went back to bed and slept until 9:30 p.m.

I truly have no explanation for why the insertion and retention of the vaginal cylinder was so unbelievably painful last week with only a feeling of great pressure but NO PAIN this week. Valium is not the explanation. I don’t know what to suggest to you. I can only report what happened to me this morning and hope desperately that it will be the same for you this week. Talk to the nurses, doctors, technicians and other staff as much as possible ahead of time so they can help with strategies to hopefully eliminate the pain.

Debbie, you know I'm hugging you!

Sally

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

I called my onc nurse yesterday and told her that I may not go through with the brachy if it was as painful as it was last week. Then I talked to her about the cylinder applicator like Linda had. She said sometimes the Dr does not like using it because he feels he gets more aimed radiation with the other "ovoid?" applicator. I also told her how shocked my online buddies were with my experience.

I am to come in a half hr earlier on Wed to discuss the options. So glad that your treatment today was so different. Crossing my fingers that mine will be better. Can't take alot of valium before I leave the house because I need to discuss with the Dr about the options and not slur my words.

Hugs to you,
Deb

howdybooth
Posts: 44
Joined: Aug 2009

Thanks to all of you I've gotten my sister talking to her doctors about getting the type of treatment Linda received. We still have time to "fight" the insurance if they don't want to do that type of procedure. My sister is single, never been married and never had children and is very shy; I really don't beleive she can go through what some of you guys have gone through. So again, thanks for your honesty!

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Today was 2nd brachy day. I had a long conversation with my Dr and onc nurses. I explained how my on-line friends had a much different approach with no pain and under one hr. We discussed the cylinder application. The Dr drew pictures and explained why he did the other applicator on my first visit. I won't go into detail, but it really did make sense. When he talked about the first applicator he said you probably have another name for it. Yes I do, I call it a "pitchfork." He knew I would not go through with all the pain that I endured last time. Then he laid out and drew the cylinder approach. He was very agreeable to do it with the cylinder and said he was glad that I got a least one of the other types of brachy.

This appointment took longer than expected because they had to do all different calculations, so I just sat in the waiting room with my husband and read magazines. When he was to open the sterile container with the cylinder I asked to see it first. I said no, that's too large, what else do you have? He showed me the next size down and I said OK. There was still some pressure, not pain on insertion but then it was OK. Nothing at all like last week.

So the morale of the story is to ask more questions and ask to see the devices. Without you wonderful women I would not have known better and maybe have put up with the "pitchfork" approach again. Can you imagine all the women who aren't as lucky and informed as we have made each other, have gone through.

Next Wed is my next appointment and the onc nurse told me to tell you all that she will have me out of the clinic in less than and hour. I'm going to hold her to that!

Thanks to you all again.
Debbie

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Oh, Debbie, that's great news about your second brachy going so much better than the first! I actually had the "ovoid" vaginal device both times but the second time it must have been smaller than the first one. Like you, at the first appointment my thighs and other parts of my lower body experienced wave after wave of uncontrollable muscle spasms from the intense unremitting pain. I was worried about holding the lower part of my body still enough for the correct region to receive the radiation. It sounds like we are both at least WILLING to go to our third scheduled appointments. Thanks so much for reporting the good news about yesterday's brachy so quickly. I was holding you tightly in my thoughts and my virtual arms all day. I am so relieved!
Sally

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Hugs to you Sally. Good luck on Mon.

Debbie

howdybooth
Posts: 44
Joined: Aug 2009

My sister's talked to her Rad. Onc. and she has no idea of what you guys, Debbie and Sally, went through! According to her, your treatment sounded like something from the dark ages.....maybe it's the differences in the hospitals? My sister is getting treated through Texas Tech teaching hospital. Her treatment is going to be like Linda's. You gals are right though......take control of your own health care......

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Hi, Debbie!
I had my 3rd & final brachytherapy this morning. Again, NO PAIN, just like brachy #2. I think the problem with the first round was the use of a cylinder that was just too large for my body. The catheterization went pretty well, too, though not quite as well as last week. This week, too, I was out in less than 2 hours. That included a long talk afterward with the rad/onc.

Let's hope yours goes well, too, this week!!
Sally

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Sally....GREAT news....am so glad that this is now behind you and you can get on with your life! Dance on!!

Karen

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

I thought my lucky day was going to be 09-09-09, but the machine broke down. So today I had my last brachy. It went very well. From start to finish it took 35 min including all the hugs and good lucks. I explained to everyone that worked in radiation what "Dancing with Ned" meant. They got a kick out of that. From Jan 20th to now has been a long time. Now all treatments are over.

Tonight Jim and I are going out to dinner to celebrate then back to friends' house for a champagne toast. I will toast you all that are dancing or waiting for that special dance.

Deb

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I am so happy to hear of you being OUT of treatment!! It is FABulous to not be 'doctoring' all the time! I am still grinning about it, and my last brachy was July 1st!

Celebrate closing the door in that chapter of your life. You're a bone-fide suvivor now and I hope that you will consider yourself CURED until some test shows differently, hopefully forever. Allow yourself to be happy and use your remission to regain your strength and vibrant health. I am smiling my face off for you!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I ditto LInda's comments. Congrats Deb. Enjoy life!!

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

It is such a good feeling to be done with treatments. I am so happy for you. Glad you went out to celebrate. May you continue to celebrate for a long time. In peace and caring. HUGS to you.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

I am back from celebrating. Your words of encouragement and caring have meant the world to me. Thank you and HUGS to you all.

Deb

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Debbie - It's been wonderful to have you with me during the DOWNS and then UPS of our brachytherapy. I'm delighted that you have completed your regimen. I'm almost there. Only 2 more rounds of chemo. The next is 9/18 if my blood is OK.

Truly, it has really meant a lot to me to have you by my side. - Sally

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

That's great! Only 2 more to go. It won't be long then it is time to celebrate! I'll be thinking of you 9/18. Good luck.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

As per my second opinion, I go for my first Brachy on Tuesday, Nov 3rd. There will be a total of 4 (2 per week). After reading this post, I will make sure the doctor uses a small instument. Just for the record just a tampon is painful for me so needless to say I'm a bit nervous. From reading this post, it sounds like I have the more modern version. My doctor told me about the inpatient and that he does it outpatient and it's fairly fast. Any pointers would be greatly appreciated.

Thanks,
Susie (Lilly the Clown)

ro_NJ
Posts: 11
Joined: Jul 2009

Hi

I didn't know there were other types either, I just finished with my 25 external, and 4 internal treatments... but I had the whole nine yards, the cath, the bowel marker, plus the CT Scan - following that was the room without a view and a little seed.

My question is, Why do you neeed to use a dilator daily?

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Scar tissue can form from the radiation. Some onocologists recommend the dilators, and others, like mine, said as long as you are sexually active you do not need the dilators. He said the scar tissue can form within the first six months after treatment. I have not had any problems so I have not used the dilators. Linda however uses hers daily. You need to see what your radiation onocologist recommends for you. In peace and caring.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Ok girls, very nervous about upcoming brachy treatments. I'm thrilled and thankful that no other treatment after surgery was needed but still nervous. I go Monday afternoon for the set up (I guess the C-Scan and whatever else they need to do). Then Tuesday morning is my actual first treatment. (Total of 4 treatments, 2 per week)

I work with children and I am on my feet the whole time at work (3 hours in the morning and 3 hours in the afternoon). At this point, I took off the rest of the day and told my manager that I may not be able to work the next day and she's been great.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Hope all goes well for you next week. I know how anxious you must feel due to the unknown. I hope the treatments go well for you. In peace and caring.

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

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

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

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
Posts: 14
Joined: Nov 2008

Hi Linda

I was browsing the board the other day and came across a message from a lady whose husband had invented a new type of dilator for her to use. She said he made it for her because it was too painful for her to use the regular kind of dilators. It was called Cool Water Cone. She was kind enough to send me one in the mail free of charge. They do have a web site and I have tried to find her post on here since then so I could thank her and let her know how it is working for me but evidently they took her post off. Maybe they thought she was advertising them or something. Anyway, if any of you out there are having a problem using the hard plastic type of dilator, these are made of some type of material that is 90% water and you keep them in the refrigerator to keep them cool and you don't have to use any kind of lubricant with them, just run them under cool water and insert. For me they are more comfortable for sure. I wish I could find her post, I can't even remember her user name or I would search under that. I am going in for my yearly exam on Friday and I am going to ask my gyn about using the hormone cream like you do. For now I was prescribed Vagifem to insert twice weekly but doing it your way makes more sense to me. Glad you didn't have the trouble I am having. It has been 4 years and it is still painful.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

wje630
Posts: 14
Joined: Nov 2008

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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
Posts: 14
Joined: Nov 2008

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's picture
susie1143
Posts: 109
Joined: Aug 2009

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's picture
culka
Posts: 161
Joined: Oct 2009

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's picture
susie1143
Posts: 109
Joined: Aug 2009

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's picture
culka
Posts: 161
Joined: Oct 2009

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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
Posts: 743
Joined: Oct 2008

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

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