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Brachytherapy - The good, the bad and the ugly

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

In case anyone is interested, here is how my first round of brachy went with two more to go.

My appointment was at 1:00 on Friday. They were a little late getting me in. I met with the nurse and went over all the usual stuff, allergies, drugs I’m on, any issues. An aide took me to a room that resembled a bank vault, double doored, the second door was obviously meant to keep the radiation in. The room wasn’t totally stark; they had a couple of flat screen TV’s on the wall, a closet to put my personal effects in and an xray machine.

I was able to leave my top on but had to remove my pants and underwear. The table was like an exam table, not uncomfortable; the stirrups weren’t like when you have at a regular pelvic, you actually rested your calves in them and they strapped your legs down. My lower half was covered with blankets.

Since my regular radiologist doesn’t do brachytherapy, I was given a pelvic exam by the new one. I’m not sure if that is normal or not. After that, the nurse inserted a catheter which is unusual to do (so I was told) when a patient is awake. It didn’t really hurt but it was a weird feeling and you could definitely feel the tube moving around in there. It’s my understanding that the catheter is used to measure how much radiation your bladder is getting or to identify where it’s at in regard to the radiation site, or something like that. I will not have to get a catheter on the second and third treatments.

The radiologist asked me if I wanted to see what she was inserting in me which of course I did (always curious). It was a hard plastic cylinder that looked like a super large tampon with a long thin rod on the end of it. Apparently this cylinder comes in different sizes and they want the biggest one you can handle, maybe to prevent leakage?

…and that’s when everything went to hell. Or at least that’s when my blissful, no big deal attitude took a nose dive. It hurt…alot. The radiologist kept saying is it pinching? Is there too much pressure? It wasn’t pinching and there wasn’t too much pressure…it just hurt like a son of a gun.

After it was inserted and they secured it so it would slide out, two x-ray technicians came in to take x-rays. The nurse put a wire inside my catheter so it would show up on the x-ray. I thought I was going to have to remain in the stirrups during the entire procedure but instead they just had me lay flat with my legs slightly bent then lowered my legs a little which didn’t help the pain any. I had to lie very still while they took x-rays from various positions. It probably took 10 minutes. In the meantime, I was not a happy camper because even with this cylinder inside me…it still hurt like hell. I wonder if I’m already shrinking up.

After they took the xrays they spent some time in the other room reviewing them then the physicist came in, introduced herself and gave me the spiel about how they would insert the radiation using a machine (never actually saw the machine, but was told it was like an r2d2). They all left the room after turning the TV on to distract me, I suppose. There was some vibration from between my legs and a red light on the wall went on which was the start of the radiation, though I think they did a test run first just to make sure everything was going where they wanted it to go.

Five minutes later, a green light came on which indicated they were done. Since I was flat on my back I couldn’t really see what’s going on “down there”, but at that point I realized I wasn’t covered up by anything. The physicist ran what I assume was a Geiger counter over me checking for radiation, the nurse pulled out the catheter and wire which was no big deal and then the radiologist pulled out that giant tampon looking thing which hurt almost as bad coming out as it did going in.

Once everyone left, the nurse cleaned all the goop off of me and brought me my clothes and that was it. I was back in my car and driving home by 2:20. The other sessions promise to be shorter…no cath…not sure about getting xrays.

Now, having read some accounts on the experience of others with regard to this treatment I think it’s safe to say that just like everything else, it varies from person to person. It sounds like even the actual treatments are different depending on where you go.

As far as the pain goes, I should point out that I’ve never had children and even the radiologist commented on that. I think it’s much less painful or even pain free if you have had children. The radiation doesn’t hurt at all and I’ve had absolutely zero side effects, other than some minor spotting and drainage.

I’m not sure if my experience will help anyone else but it might prepare you. I went in calm as could be, but now I’m dreading my next two treatments. I took an Ibprofen an hour before I was treated at their recommendation in case I had cramping, but next time I’ll dig out the narcotics and wash them down with a few glasses of wine. Oh that’s right my treatment is in the morning…maybe a screwdriver or bloody mary instead...make that a double please. Oh the joy.

Cindy

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Wow - what an unvarnished report! Thank you for being so honest, and I'm so sorry it wasn't the piece of cake I'd heard it was:(

I'm stage 1a upsc, and after surgery I was presented chemo and radiation almost as options instead of mandatories. I started chemo this past week (yeesh, the pain and the insomnia are baaad but with only 3 treatments I count myself lucky) and have been debating the radiation. I'm also childless, and before my first surgery my gyno wouldnt even do an endometrial stripe because I barely tolerated the ultrasound. What stage were you and was this a choice for you?

Susan53's picture
Susan53
Posts: 177
Joined: Jun 2011

My percentage for the uterine cancer moving to the vagina went from 13 percent to 2 or 3 percent. I felt that was very substantial difference. I did have 2 children and it did seem like a piece of cake. The side effect of it was not my favorite. When they explain you have to use it or lose it. They gave me the dilator to use when not having sex. My doctor reccomends using it 3 times a week. Sharon

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I'm either stage 2 or 3 (they never took lymph nodes) high grade. My cancer is MMMT also called carcinosarcoma. The brachytherapy was part of my treatment plan from the start. It sounds like this will become more standard over external radiation in the future though I guess it would depend on the stage of cancer you have.

Don't NOT get treatment because of what I posted. The treatment was much easier the second time around.

Take care,
Cindy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

So all that pain I was experiencing during the first treatment is apparently not normal. After adding another link to the cylinder because the radiologist mistakenly thought I was being pinched by the little knob on it that they use to secure it in place, she finally realized it was just too big for me and switched to a smaller size.

I guess it was my fault. I'm sort of a grin and bear it type of person, but when I finally explained that I was feeling PAIN, not pressure, she figured it out.

So good news, there shouldn't be excessive pain during this procedure. It took them 8 minutes to insert the radiation and they did take x-rays again so all in all I was in the room about 50 minutes.

One more treatment to go.

Cindy

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Cindy, I so admire your bravery! I've been reading up on brachytherapy and it's consistent with your report. If the treatment itself were the only issue I'd be more comfortable but the after effects sound daunting (remember I'm the one who could barely get through the ultrasound, lol). I've got one doc who says it's not necessary but the preponderance of data recommends it. Argh - I see a difficult decision in my future.

Liz in Dallas who needed a full week to recover from chemo

Liberty123's picture
Liberty123
Posts: 8
Joined: Oct 2011

Liz,
I had 3 brachytherapy treatments after 1/3 of the doctors recommeneded it, 1/3 didn't recommend it and 1/3 couldn't decide. I figured it's better to do everything you can. Mine was done in July and with only 3 treatments, I don't know how many you need, I had basically no side effects. A couple of months later there was some blood in diahrea because of slow healing, but nothing else. I was very nervous about it, but it wasn't painful for me at all. Not the most dignified position, but everyone was very caring. The actual treatment only took 7 minutes each time. There was lots of time positioning, etc the first time but I was made comfortable.

I'd say the worst thing about it was trying to make the decision. It would have been easier if they had said you had to have it. Then I had to wait to heal from my hysterectomy.

Kathy

Kaleena's picture
Kaleena
Posts: 1066
Joined: Nov 2009

I had brachytherapy, but it wasn't until almost a year after my hysterectomy and I had finished 6 months of chemo. My gyn/onc at the time also had wanted me to have pelvic radiation but my radiation/oncologist advised against it.

I had three treatments. I had to go in before treatment for the set up like Cindy indicated. It was uncomfortable at first, but the nurse assisting me was very nice and said that you have to relax (right, how can you?), but she showed me how to relax so that they could insert the tube. After that initial stuff, the rest of it was pretty easy.

Just so you know, I had my brachytherapy in August of 2006.

My best to you all.

Kathy

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

The chemo should get easier. My first was tough but only because the nurse did the pre-shots (H1 blockers) out of order and too close to the port instead of doing it in with the IV saline. It was almost like a straight shot of Benadryl and the other drugs to prevent nausea. I was a mess for about a week. It took that long to get over it. Chemo times 2-6 I went back to work the next day worked 2-3 days before the chemo side effects started. Pain in legs, bad taste, fatigue just a general feeling of blah. That lasted about 3-4 days, then I went back to work till next chemo treatment. I do not have to have radiation nor did I have to have the brachytherapy, now that I heard about it I am kinda glad I did not have it, but if it would GUARANTEE that the cancer never comes back, I would do it and have radiation. But as my drs said there is no guarantee that it will never come back. They do all they can but cannot offer a guarantee. Hope you are doing ok otherwise. trish

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I was diagnosed with Stage 1a UPSC in March 2008 and had six rounds of carbo/taxol and five vaginal brachytherapy treatments; the dose was split into five portions instead of three so as to eliminate any potential side effects. My gyne-onc told me that both the chemotherapy and brachytherapy were "optional"; but I chose to have the combo because I was scared and thought that it would give me the best shot at a cure. My doctors told me right from the get-go that my prognosis was excellent.

Although I was very tired and weak for a few days during each chemo cycle, I had no side effects at all with the brachytherapy. It's now more than 3.5 years since my surgery, and I have been NED ever since. My gyne-oncologist, one of the finest doctors at Mt. Sinai Hospital in NYC, told me that he was "almost" certain that the cancer would not come back.

Despite the reassurance of my doctors and all of the research I've gathered on Stage 1a UPSC, I remain vigilant and strongly believe that if I had not totally changed my diet and exercise routine as well as my stress levels, I may not now be NED. I eat a mostly vegan diet, have eliminated almost all sugar, and stick with foods that are anti-inflammatory; info and recipes are available elsewhere on this board. Lately, I have been adding a bit of fish and chicken to my diet and don't beat myself up if I have a sweet treat now and then. In addition, I walk everywhere and probably total more than fifteen miles a week.

Remain hopeful!

JoAnnDK
Posts: 276
Joined: Jun 2011

Cindy, did you have a simulation session prior to your first brachytherapy?

I had simulation about 3 weeks prior and it was ghastly, to put it mildly. Everyone except the custodian was probing an orifice, I swear. But they must have done something right when doing measurements because I had none of the issues that you had during my sessions. I had a catheter inserted during simulation only.

JoAnn

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I did not have a simulation before hand. My first appointment was to meet the radiologist who just talked about what would happen. She didn't even give me a pelvic until the day of my first treatment so I got to experience all the fun at once.

One more treatment to go.

Cindy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Liz - I haven't really noticed any side effects so if you can suffer through the treatment, you can forget about it the moment you walk out the door. If I had been given a choice, I would get it, even know what I know now.

Take care,
Cindy

Mdotsie47
Posts: 28
Joined: Dec 2011

I had brachytherapy three years ago for uterine cancer. It was a much worse experience than advertised, and my cancer has metastasized to several areas since.

It left my vagina full of scar tissue that is still bleeding slightly. Intercourse with my husband is extremely painful and causes so much bleeding that he doesn't like having real sex any more. Fortunately, he is a loving husband and willing to be creative, but I miss being able to have a normal sex life.

Since the point of brachytherapy was to prevent recurrence and I have had several new masses, I'm not sure it was worth it for me. But I guess we have to try everything that gives us a chance to survive and this may work for many people.

Mdotsie47
Posts: 28
Joined: Dec 2011

I had brachytherapy three years ago for uterine cancer. It was a much worse experience than advertised, and my cancer has metastasized to several areas since.

It left my vagina full of scar tissue that is still bleeding slightly. Intercourse with my husband is extremely painful and causes so much bleeding that he doesn't like having real sex any more. Fortunately, he is a loving husband and willing to be creative, but I miss being able to have a normal sex life.

Since the point of brachytherapy was to prevent recurrence and I have had several new masses, I'm not sure it was worth it for me. But I guess we have to try everything that gives us a chance to survive and this may work for many people.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

but at least I don't have to make any decisions until february. I'll have lots of questions to ask beforehand. For now I've got great energy in my non-chemo weeks, so I'm trying to stuff all sorts of fun and goodness in while I can :)

Liz in Dallas

tdstamp
Posts: 1
Joined: Dec 2011

I had 5 weeks of radiation, followed by 5 brachytherapy treatments in April of 2010. I was unprepared for the side effects of the brachytherapy. I had clear vaginal drainage for about a year following the treatment and still suffer from unexpected bouts of diarrhea (like today as I'm preparing Christmas dinner) that are manageable but still annoying. I also suffered from a broken hip in April 2011 and have since learned that the treatments may cause weakening of pelvic and hip bones. I'm 62, very active, and have no osteoporosis so was surprised at the fracture from a relatively minor fall. I am cancer free and would not do anything differently even knowing what I know now.

You are wise to be getting as many experiences from others as you prepare for your treatments. I wish that I had been more prepared for the possibilities. You can never know until you go through this what your own experience may be, but knowledge is sure enpowering and comforting, knowing you are not alone.

Hunnah
Posts: 1
Joined: Jan 2012

I so much appreciate all the messages on this thread. I see that there hasn't been a post in about a month, I hope it's still 'alive'.

I'm scheduled for treatments, I asked if they'd break them into four sessions instead of three to help with the side effects. But I have a few fears ...

Firstly, my total hysterectomy was 11-28-11, so my treatments will begin seven weeks post surgery (this coming Friday is the first one). My surgeon instructed 'nothing in the vagina' and I've followed those instructions. I'm actually really afraid of having anything go in there. I still have brown spotting, so the cuff is still healing. With the brachtherapy there's not only something going in there, but in there BIG time. I'm so afraid that the cuff will tear. One reads stories of intestines prolapsing when that happens...

Secondly, I am very, very modest. My radiation oncologist is a male, I'm ok with that. But he recently got a new resident, who's a male. I told the doc I'm not comfortable with that, and he said he'd have him not participate. I asked him if the other people working with me were female, and he said no, that the technician and the physicist were male. He said he'd have a female nurse there for me. "Oh, is that right??" I wanted to say. Thanks a lot! What kind of male wants to work in that department? I can't help but be cynical, since my 'modesty' issues come from being sexually exploited in childhood. I have so much anger that I have to do this, otherwise the alternative is pelvic radiation which carries so many more consequences. It's horrendous that one can develop a new cancer 15 - 20 years down the road BECAUSE of getting the pelvic radiation. Whenever I think of these upcoming appointments my blood pressure and anger rise in equal measure.

I read on here that some docs use the kind of stirrups where your calves rest down, and they strap your legs into them. If straps are an issue I can see myself saying 'have a nice day' as I walk out the door.

I hear that with Stage 1B Grade 3 endo cancer, there's an 8 out of 10 chance that the cancer won't come back and that of the two who do have recurrence and get treatment, one will survive. That makes the odds 9 to 1 to the good, right?

I'm struggling so much over this whole thing. I want so badly to bet the odds and put it out of my mind.

I don't know what anyone can say to this, but I appreciate having a chance to express myself.

A therapist won't help. I've done that. The fact that things happened in the past can't be changed.

Thank you for taking the time to read my 'negative' post.

JoAnnDK
Posts: 276
Joined: Jun 2011

I am so sorry you are feeling the way you do. Brachytherapy is no walk in the park, for sure...I had to just keep telling myself that I had to get through it. It did help that my sister was with me for the simulation (the worst part) and also that she insisted that I take a Xanax beforehand. It more than took the edge off.

To be honest, I do not remember any straps. The physicist is in another room. My radiation oncologist was female but her resident was male. The nurse who spent the most time with me was female.

I don't know what to say, really...just rambling on here.

I did have a month of pelvic radiation first, and one of the technicians was male. But the techs were so kind and so professional.....

I wish you peace of mind....

JOANN

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

...speaking from my recent experience with Brachy, it isn't a walk in the park as you could probably gather from my posts, but it isn't absolutely horrible either. I did not have to put my feet in stirrups, but rather, my calves were supported by foam supports. During the first treatment, my legs were strapped to the supports, I suppose to keep me from moving around, but apparently they got some kind of new table because the straps weren't on too long before they had me pretty much lying flat on my back with my legs down.

Honestly, I think alot of it depends on where you go, so you won't know what exactly you will be facing until the first time through it. I did not go through a simulation like JoAnn did, so the first session was almost two hours where as the other two where maybe half that time. There is a lot of prepping, the radiation is only inserted for a few minutes.

With regard to modesty, you sound like you have a very valid reason to be uncomfortable so I'm not sure the standard comment "there is nothing you have that they haven't seen hundreds of times before) would give you any comfort. You are pretty much exposed to anyone that walks in the room which will probably include the xray technicians and a physicist who measures the radiation. I had both male and female technicians, but my doctor was female.

Just remember that once you go through this you've increased your already good odds considerably and that if nothing else makes it worthwhile.

Take care and good luck.
Cindy

RoseyR
Posts: 464
Joined: Feb 2011

Hunnah

I SO sympathize with your dilemma as you face what seems, at best, an unpleasant experience.

All I can do is share my own experience at an urban cancer treatment center advertised as one of the "top ten in the nation."

I had several opinions at different institutions on whether, after my first three rounds of taxol/carboplatin, I should receive pelvic, or brachytherapy, for my stage iB grade 3 uterine cancer.

Two thought just brachtherapy (since 20 pelvic lymph nodes had been found to be clear); one thought both, and my radiological oncologist at the original treatment center initially said "pelvic radiation, and then, if you're holding up well, brachytherapy."

Curiously, I had NO side effects from 25 sessions of pelvic radiation (IMRT). It's been seven months since treatment, and I still have no side effects: no diahrrea, bowel problems pelvic pain. I never even felt any fatigue. Yet when it was all done, she said to me, "I don't think you really need brachtherapy after all. Your tumor wasn't very close to your cervix. And frankly, I am seeing more and more toxicity from brachytherapy--damanged tissue, etc." This admission came from a radiological oncologist who TRAINS others at major teaching hospitals in my major city.

This is not meant to frighten you about the prospect of brachytherapy, for we've all heard right here on our boards, from many women who sailed through it with no problem.

It is meant to reasure you that if it is a choice between the two, you might consider pelvic radiation IF it is IMRT (intensity-modulated radiation therapy), which has fewer side effects than the old pelvic radiation.

As for possible side effects in fifteen years, I myself can only say that I will be beyond grateful if I'm alive in ten.

But each of us has to make our own difficult decision, and I respect whatever you decide to do.

Best,
Rosey

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