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radiation and dilation - Help ! - I am soooo unclear radiation and dilation - Help ! - I am soooo unclear

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  #1  
Unread 10-29-2003, 08:37 PM
radiation and dilation - Help ! - I am soooo unclear

Hi ladies

I hope someone could enlighten me.

I was diagnosed with stage IIA uterinie cancer that had spread to my cervical canal. I had a TAH/BSO 8 days ago and was told that radiation would be in order.

I will have an appt with my radiologist in a week or so.... but I am soooo unclear on radiation.

If I had a TAH/BSO - what exactly is the radiation for? The vagina?
I have been reading post after post and see that for some people, radiation appears to be a long, horrible process. I assume treatment varies from person to person... but now what?

Now I am starting to read about dialation after/during radiation - WHY IS THIS ??

Sorry, If I appear somewhat clueless... just that now I am getting rather scared.

Was anyone diagnosed with stage IIa uterine cancer ? How long was radiation ?

If anyone can enlighten me I would greatly appreciate it...

S and Love

Jana

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  #2  
Unread 10-30-2003, 12:48 AM
radiation and dilation - Help ! - I am soooo unclear

Jana

Hun it's really not that bad. I had 25 external radiation treatments and came through fine. I don't know how many you will have, but the 25 seems fairly normal (I also had 3 internal but you did not mention that, those for me were not a pleasant experience) Anyway, yes, you will have some side affects. But that varies person to person. For me, I did not notice anything for the 1st couple of weeks. Then I had some burning, similar to sunburn in the radiation area. I found that wearing loose, cotton clothing was helpful. Most women become cross dressers :-) because wearing mens type of undies is more comfy then lacy poly undies. (those don't breathe and irriate the skin) also I suggest using baby wipes instead of Toilet paper. If you are married, try to continue intercourse regular as this helps to keep the canal open.

Now on the bright side, you will have the most amazing bikini wax job ever! That is something I did like. For me, it's been
2 months since my last treatment, and I still have an incredible bikini line! lol

Best wishes for a full recovery.

Many hugs too!
  #3  
Unread 10-30-2003, 03:47 AM
radiation and dilation - Help ! - I am soooo unclear

Hi, Jana--

I wa a clinical stage 2B (surgical stage 1C) endometrial cancer. In other words, my gyn-onc believed my tumor had invaded the cervix even though the pathologist concluded that it didn't. As a result, I'm the only one I've heard of on this board that has two stages for my one cancer!

I had both internal radiation--low dose brachytherapy done during a two-day hospitalization in isolation--and 25 external beam treatments (for 5 weeks, 5 times a week). Just like in breast cancer or most other cancers, a combination of treatments such as surgery, radiation and/or chemo is often used to effectively treat the cancer depending on its stage, tumor size and type, and aggressiveness. The radiation would ensure that any microscopic cells that were not visible to the naked eye at the time of surgery are destroyed and not left behind to later spread into the vagina or elsewhere.

I had to dilate afterwards to prevent scar tissue of the vagina and vaginal shrinkage which can occur after the area is radiated. Using the dilator on a regular basis will prevent this. Although I used it for a longer time, my radiation oncologist recently said that it should be used for the first year or so after treatment.

Try not to worry, for me the radiation process sounded much worse than it was.

Good luck with completing your treatment!

MoeKay
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  #4  
Unread 10-30-2003, 08:24 AM
Jana,

I too had radiation, I didn't think it was that bad either. I think the marking is the worst part of it. Which is the first day. After that the actual radiation is a walk in the park. You lay down, they zap you up front for about 15 seconds (not sure), then they zap you behind, then zap you on one side, then zap you on the other. that's it your done.

All in all, it took an hour, from getting there to leaving there. So I had an hour off work every day for six weeks. I too had the low dose internal radiation, where I had to spend three days in the hospital, while I was radio active.

The marking that I stated before was the worst part. They put a marking devise up your vagina to mark where the radiation needs to be, it looks like a very long stainless steel marker, rather thin. Then for me they also put one up my rectom. My cancer is located in the back of my vagina, then right behind it between my bladder and rectum, so maybe that is why they did that. Not sure if that is common or not.

then they do a xray I believe, it's been a long time, then they mark you by tatooing you. It is just a little dot on both sides of your hips, and one on top if you so want. You don't have to have the tatoos, it's just easier for the radiaologists later. They can mark you up with markers also. Which they did.

That too me was the worst part. Although the side effects, which differ from patient to patient, got pretty bad for me.

Mostly the diarreah, which starts about the third week. Like someone else mentioned, start with the baby wipes as soon as you get the diarreah, much more comfortable then toilet paper. Immodium worked wonders for me.

I didn't get any rash with my treatments, but my nurse told me if I did you should use regular cornstarch on it.

As for dialating, my Dr. told me to have sex about twice a week during radiation, as long as it was comfortable to me. Radiation sometimes shrinks the vagina. If you are not married, or isn't involved with someone, they will give you a dilator. He never told me about dialating afterword. But it didn't seem to have any problems with me, until after my last surgery. But that is probably a different story.

I hope this answers your questions. But try not to be too frightened. Really, radiation isn't that bad.

's and ers to you...
  #5  
Unread 10-30-2003, 11:25 AM
radiation and dilation - Help ! - I am soooo unclear

Hi, Jana. Boy, do I identify with feeling clueless. Actually, I felt as though the doctors were filtering out the information to me piece by piece so that the whole "magilla" was more manageable for me to accept. I think if I knew going into surgery all that the treatment entailed, well, I still would have done it, but I'd have been a lot more scared.

As I understand it, the radiation is for any microscopic cancer cells that might be left over from the surgery. Radiation is a very effective tool for fighting this type of cancer.

In my case, I had uterine cancer that spread down to the top of the cervix. The radiation really is to prevent any new cancer cells from developing in that area. I had to have external as well as internal radiation. I think that dilating is suggested only with the internal radiation (I could be wrong but I think since the internal is so specific to the target area, that there's a fair amount of scar tissue that can develop). Radiation is a wonderful therapy but it sure works a number on the area that's being radiated.

Anyway, dilating is to prevent shrinkage from all the scar tissue.

Don't let yourself get overwhelmed with all this. Your doctor will discuss all these things with you. Just make sure that if you have any questions, that you go back to your doctor for his/her explanation.

It's tough treatment, but it's manageable. In fact, I was undergoing chemo at the same time as I was doing the radiation. There were a few days when I had to do both on one day. Now THAT was tough. But you know what? So am I. And here I am, six months from surgery; chemo and radiation treatments are over. I'm doing well. So how tough could it have been?

Good luck.
  #6  
Unread 10-30-2003, 05:10 PM
radiation and dilation - Help ! - I am soooo unclear


OH HOW I LOVE YOU ALL !!!

After reading your responses I was very well prepared and spoke with the doctor. I do not know how many treatments I will need, but at least I kinda know what to expect.

It all seems soooo real now. But I have a great doctor and my hystersisters for support.

Do you really need to stay in the hospital for internal radiation? Is it painful?

Thanks

Jana
  #7  
Unread 10-30-2003, 06:07 PM
Jana,

I think you only need to stay in the hospital for a low dosage treatment or something like that.

It is not painful at all. They stick the thingee in you, like a long tube, then they take you to xray to make sure it is in the correct place, then they insert a pill like thing into that tube that sits there where it is supposed to.

During the whole time you are radio active, so no one can come and see you. My DH came everyday, he was the only one brave enough, he had to sit six feet away from me and only stay for 30 minutes a day.

The nurses pretty much leave you alone also, they gave me a little tub full of ice and juices so I can help myself all day. My DH also brought me sodas for my little tub.

I also sprang for cable tv so I had somehting to do. It seems like my concentration wasn't very good, cause I couldn't read my new book, or play the gameboy my DS sent for me.

I don't remember much of the ordeal, cause I was on some drugs.

Hope this helps...

's and ers to you...
  #8  
Unread 10-31-2003, 08:38 AM
radiation and dilation - Help ! - I am soooo unclear

It will be OK. That is from someone who was in a panic mode for several weeks because I couldn't talk to someone who had the internal radiation and I, too, had read all the side effects, etc. I had my hyster in July - no problem. Uterine Cancer Stage II, Grade III. Started external radiation in September again very little side effects. A few loose bowls, a few severe diahrrea days but all in all, no burning, no problem with sex everything OK. The internal included a 'simulation' the first day. Cylinders in the vagina and rectum. Lots of exrays to make sure they will be hitting the right spots. The radiation machine has a rectangler 'window' and they can program 'blocking' screens to protect the necessary organs. They gave me 15 seconds top, bottom, and both sides. The machine moves around your table because once you are situation, you can move. They line the tatooes up and they need to stay lined up. I had my radiation from anytime from 7:00pm to 11:00pm and that worked for me. I worked all day (elementary school) and then took a nap after work (my children are out of the house except for my niece who is living with me but is 18 yrs. old) and then my husband and I went to radiation in the evening. It was like a date lol.
But I was getting myself into a panic about the internal and the hopital was not treating me emotionally. I finally found some people to talk to and they put things into perspective. I have researched and this is the usual treatment. It is treating it aggressively but don't you want to do everything you could possibly do to prevent it from recurring. We are talking about cancer. I will be very careful about dilating after I know my vaginal canal is the same after surgery and my intention is to keep it the same. I have been very, very fortunate with very few side effects. Even with the 2 internals, I have felt nothing.

The actual procedure is not a picnic but you can get through it. I demanded to know everything. I hated them giving me piecemeal. Everytime I asked a question, I got a little more info until I sat with the nurse and doctor and asked for blow by blow.
I had the High Dose Radiaion brachytherapy. Three outpatient visits. The first one is where they need to put the foley cathe, vaginal cylinder and rectal probe. They place a board with a metal clamp at the end under your butt and attach the vaginal cylinder to the clamp so it doesn't move. The vaginal cylinder fits tight to the top but they gave me some relaxant it wasn't that bad. But I also had 2 10lb babies so apparently my vaginal is very accommodating! They need to know where your bladder is and your rectum so they can protect it as much as possible. They leave everything in while they take x-rays and measurements. Then I went into a room still attached and just laid for about 1.5 hours while all the calculations were done. I didn't mind since I wanted them to take all the time they needed. Then they took me into the HDR room (under lock at all times) and hooked the cylinder to the HDR machine. Apparently, the seed leaves the machine and enters the cylinder and then returns back to the machine. I just had my second yesterday and this time it was only the vaginal cylinder attached to 'the board' (the board ended at the top of my butt and people had told me that after lying on it for hours it started to cut into their back. You are on a flat board with this quarter inch board on top. I made a foam pad to go over it. Dr said OK and it was comfortable on my back. never felt the edge.) I still don't have any major side effects, no burning, no skin problems, no discharges. Just some minor loose bowls. My husband and I are looking at the next phase (dryness and dilating) as a sexual challenge and maybe a new way of doing things. (after 33 years, we are going to look at it as an opportunity to experiment lol) I am just so lucky. ..everybody is different so you really won't know how you will be until you are in it. Just keep in mind you are fighting a battle and these are the best tools you will even get! Let me know how you are doing. It is so nice to know you are never alone.
  #9  
Unread 10-31-2003, 01:58 PM
radiation and dilation - Help ! - I am soooo unclear

I just reread my reply and want to correct a few mistakes. The first radiation I talked about was the external and that is the machine that moves around you and you can't move. I should not type and work at the same time.... sorry if I confused you...
  #10  
Unread 10-31-2003, 05:17 PM
radiation and dilation - Help ! - I am soooo unclear

I just had my first internal HDR this morning and of the the tihings that medical science can think of to do to you, this was a piece of cake. I had read everything I could get my hands on about this procedure and was perpared for the worst. My appointment was for 11:00 and I was on my by 12: 45. I was told that this first treatment was to be the longest since all the measurements had to be taken.
A foley is inserted, a pobe is placed in the rectum and the vagina is measured so the correct size for the rad. cylinder is determined. Xrays are taken at this time to make sure all is correctly positioned. A few minutes are taken to figure the correct length of time for the actual treatment. Mine was 335.5 seconds.
I was then taken on a stretcher to the room where the cylinder of rad. was located. The probe was connected to the cylinder and started. The entire time the tech. talked to me through a microphone and told me every minute or so how much longer. The entire treatment took less than six minutes.
In my case this treatment has been started before the external treatments are finished. I have five more external and two internal. I was surprised but pleased when the Dr. said I could start the int. this week. This means everything will be completed two weeks from today. YEAH
In my case this has all been done at the Radiologist's office, not a hpospital, and everyone has been extremely professional. I have never felt a bit embarrassed or uncomfortable. The radiologist has explained every procedure completely and she administered all the procedures today herself. No surprises and no new people to get use to.
Jean
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