SALLY: about the brachytherapy

brachytherapy for better and for worse
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

brachytherapy - more
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 said:

Starting brachtherapy
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?

Brachytherapy Twinkies
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 said:

brachy
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

brachy yesterday
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

Deblittleton said:

brachy
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

Deb - How's It Going?
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 said:

brachy
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

Wow- Brachytherapy sounds rough
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 said:

Brachytherapy doesn't have to be horrible like that!
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))))))).

Type of brachytherapy
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

Deblittleton said:

Type of brachytherapy
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

For Debbie - Brachy Update
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 said:

brachy
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

Thanks
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 said:

Second brachy
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

Thank Goodness!
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