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I had the 1st of 3 internal HDR brachy radiation today.

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

One down and 2 to go! I feel fine and a little silly for how much I've stressed worrying about this, dreading it even more than my chemo. It's quite an experience, and seems to be a little different for each of us who have it done. My total time at the hospital was 1 hour, and total time the radioactive material in my body was a little over 7 minutes. I had to get into a hospital gown, naked from the waist down. In 1 room I had another positioning CT-scan, (which I will get each time). An oncologist inserted the vaginal cylinder I was fitted with at my simulation. During the CT-scan they stopped twice to jiggle and poke the vaginal cylinder in deeper to make it match up with the 'simulation CT-scan' that I had 2 weeks ago in preparation for this. Once they had a scan they liked, they slid me onto a gurney with the tube still in and the piece of the table below me also slid onto the gourney, I guess so I wouldn't jiggle out of position. They wheeled me into the next room with the thick doors and the 'radioactive symbols everywhere and hooked up a wire into the cylinder that would robotically deliver the radioactive material when they were ready. A special 'physics' oncologist came in to geiger-counter me and explain how many seconds the radioactive material would be in me and what to expect in the way of noise, sensation, and flashing lights. I was all supported with comfy pillows (and I'm very flexible from decades of doing yoga), so I wasn't uncomfortable but it seemed like it took them forever to get ready to start the treatment. I found myself tensing up and had to consciously make myself relax my legs muscles and neck muscles and my adenaline was pumping as I lay there. The treatment itself was just a vibrating noise and a little pressure. Then the physics-onc came back in to geiger-counter me again to make sure I wasn't radioactive, and the tech removed the cylinder and helped me down from the table. My legs were a little wobby from the stress (all mental, not physical), but I feel just fine. No burning or cramping.

I don't get my dilators until after the last treatment. The nurse explained that the body will try to heal itself from the radiation by producing fibrous tissue, and you just have to make sure that doesn't happen. I plan to use the 'natural' method AND the dilators because I want to be ME again as soon as possible. But, so far, so good. I can do this 2 more times.

cookie1948
Posts: 79
Joined: Feb 2009

It never ceases to amaze me what you go through, have gone through and are still dealing with. You inspire me even in my every day life. It sounds so awful, and then u make it sound "not so bad." I have never ever seen such incredibly brave women in my life and you Linda are a gem!! You give people hope and you truly are "one of a kind." Your explanations have helped me so much and so many others. You were the first one to "reach out" to me as i go thru these things with my mom.
Also, thanks Deanna, Ro and others for your positive reinforcements.
Thank you and God Bless you.
2 more to go and YOU ARE DONE!!!!!!!!!!!!!!!
Cookie aka Linda

deanna14
Posts: 734
Joined: Oct 2008

I am glad that you are doing so well with your radiation! 2 more and it will be time for another cyber celebration. It feels really good to be finished with treatment. A little unnerving too, after spending the last 8 months "doing" something to fight back. Now it is just monitoring.... I guess I will adjust to the thought.
Good for you Linda! Oh and thanks for the bday card! Hugs
I love your new picture. You look so pink and healthy!!!

cookie1948
Posts: 79
Joined: Feb 2009

Linda, you have a new picture? I am getting the same one?

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

Glad you had a good experience with you first internal radiation. Hope the next two will cause less anxiety for you. I always think the unknown causes so much more anxiety with what anticipated than what really happens. Wish we could change those thoughts. I wish my cylinder would have been in for only 7 minutes rather than 28 hours.

I love your new picture and your beautiful grandduaghter. You both look beautiful.

Hope you so well while you wait for your next treatment. HUGS to you.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Linda, you're almost done!

I found a product recommended on hystersisters called Replen. Sometimes I can feel exactly where they did the radiaton and Replen helps you from being dry.

You're picture is beautiful...

MIND, BODY AND SOUL!

Hugs.

bonniesue
Posts: 126
Joined: Apr 2009

I am glad it went well and you are almost down the home stretch.Darling new picture.

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

I feel a little better because you were able to explain in detail what you went through. We appreciate that. I always wondered about the dilators, even my med onc did not know what I was talking about.

External beam radiation starts next month. That would be a good time to check the dilators out. Some day soon I'll be me again.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am an old community health nurse. Years ago I was assigned the task of caring for a paralyzed nun (Catholic Sister). She had vaginal radiation and they left me a note to dilate her vaginally with a candle every week so that she would be able to tolerate exams from her physicians. I was worried about how I was going to approach this with a nun. I found some candles (there are tons of sizes in the stores) and wrapped it in sarah wrap. On my first visit I introduced myself and suddenly said, "well I am hear for the candle lighting ceremony." We both roared in laughter. She told me she wondered how we were ever going to discuss this but my comment broke all the tension. She was sucessfully dilated with this method and we became friends. I would check with your radiation oncologist before trying this old method. But it worked! Who would have guessed that someday I would need the candle lighting ceremony! I'm still in chemo but I know where the candles are if I can't get fancy dilators!

Diane

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

Humor does help in stressful situations. Glad you could break the ice with the nun. It is something the things that we nurses used for treatments, that are so different today. Thanks for sharing and welcome to the board. Hope you continue to do well with your treatment.

cookie1948
Posts: 79
Joined: Feb 2009

I don't mean to sound ignorant, but are the dilators to open up the vaginal area? as in when you are "dilated"? Does the radiation shrink or somehow make that area smaller? Please explain, and i am really not meaning to sound disrespectful or anything like that. I was trying to describe this and wasn't quite sure how this dilater thing works?
thanks,
Cookie
Hope u are doing well. Best wishes to you Ro!!!

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Dear Cookie,

Radiation can cause scar tissue formation in the vaginal tissues which could make the vagina smaller. Regular dilation prevents this from happening and keeps your vagina more stretched as it is naturally. Intercourse also does this. There are dilators available; I am not sure if you use them weekly, daily, or for how long now as I have not been there yet. Linda will probably have more info as she gets her dilator and instructions. You do it yourself; it is simple, I think like inserting a tampon and taking it out.

Diane

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

From what I have read from others the dilators can be used by those who are not sexually active. They are used two to three times a week, and are inserted vaginally for about 10 minutes. Using Astro-glide or Replens helps the dryness that can occur in the vagina. I have used the Astroglide, and it lasts better than K=Y gel As Marge has said we call that time with our husband's "therapy" to keep the vagina stretched and to keep fibrous tissue from forming. Peggy said her doctor said she needed "therapy" 2 - 3 times a week. Her post was very humorous. The vagina needs to be open so the pelvic exams can be done as needed. I know Linda is planning on using both the dilalors and "therapy" with her husband. Others who are sexually active were not offered dilators to use. Hope this answers your questions. If your Mom did not have radiation the fibrous tissue will probably not be forming. You can check with your Mom's doctor and see if he thinks it is necessary for your Mom. Don't know how uncomfortable her pelvic exams are for her at her age. In peace and caring. HUGS to you.

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

Am learning so much from all of you on this site! Although I think that most of the professionals who cared for me were technically very competent, they did a very poor job with patient teaching and looking at the WHOLE person….body, mind and soul (and sexual function!).

Unfortunately, I did not know the negative effects radiation might have on the vaginal area. No one mentioned anything to me about dilators, etc. As soon as I finished radiation, I started chemo and had a rather challenging time. I was not feeling particularly “sexy” and only attempted sex a couple of times and found it very painful. I thought that would get better when I started feeling better again. So, once I started feeling perkier, I soon realized there were BIG changes in the vaginal area and found intercourse to continue to be painful, etc. Now I am wondering if it still possible to try some “therapy” with dilators or if it is too late to stretch things back out (I finished radiation 10 months ago.)

I did check some sites on line where one can purchase dilators but wondered if these are different that those some of you may have gotten from the radiation departments. Maybe the medical profession think that sexual activity ceases when one reaches 65??? Any suggestions??

Thanks, Karen

cookie1948
Posts: 79
Joined: Feb 2009

Ro, I finally got to see your new picture and Linda's. I was not able to see them until today. Everyone kept posting how great Linda's pic was and i kept getting all of the older ones. I hope i continue to see new pics.
Thanks for the smiles and info.
Cookie

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

There is even reconstructive surgery that can be done to correct/remove the fibrous scar tissue that can form from the body's attempt to 'heal' itself from radiation, from what I've read on the 'Gynecologic Cancers' Discussion Board. I don't think it is ever too late to use the dilators (although early intervention makes it so much easier), but you do want to talk with someone in Oncology Radiation to do an examination and make recommendations. If you feel that you are too young to turn your back on that part of life, then you ARE too young!

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

Linda

Thanks for your words of encouragement! I did not have a positive experience with my radiation oncologist and his nurse was a poor excuse for a nurse! I told my gyn/oncologist that I would not go back. My gyn/onc was surprised and told me he would be following me for several years, and so follow-up appts. with the radiation onc. would not be necessary. I have my 3 month check up with my gyn/oncologist July 1 and will try to talk to him about my frustations. No one has introduced this "topic". I do appreciate your input!!

Karen

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

Linda, thanks to your encouragement I did gather up the courage to discuss the issue of my narrowed vagina and opening with my gyn/oncologist yesterday at my 3 month follow-up. He seemed a bit surprised that my radiation oncologist had not given me a dilator. So, based on the pelvic exam he determined what "size" would work and provided me with one. He explained how to use it and said it should be used every day for 10 minutes except on the days one has intercourse. So, I am so glad I brought up the topic and am hopeful life may resume to a more normal status. I appreciate all of you sisters for being so open in sharing your experiences! Thanks!

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

I was given my dilator yesterday after I finished up my final brachy treatment, and it had its 'maiden voyage' this morning. I tried to think of how I could best work this 'physical therapy' into my daily routine, and I think I'll just do it before I get out of bed each morning. I am usually the last one up, and if my husband is still in bed with me when I wake up, it may mean this is a 'non-dilator' morning! HA! And this way, instead of thinking of this as some 'medical procedure', I can think of it as an extra 10 minutes to laze in bed before I get up. Maybe I'll even pretend that it's a sex toy and spend the 10 minutes thinking naughy thoughts or reading a romance novel! I just don't want to be a cancer person anymore now that I am officially done with treatment, so my new personna may just be a 'dirty old lady'!

;D

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

I love your attitude....You gave me some good ideas as I was also trying to figure out how this might work in my daily routine!
Karen

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

So your new persona is "a dirty old lady". I love your attitude. Good luck with everything. I am so happy you are finished with your treatments, and ready to celebrate LIFE. In peace and caring. HUGS to you.

deanna14
Posts: 734
Joined: Oct 2008

So happy that you finished up your treatment! Feels fantastic, huh? I see my gyn/onc on Monday and will probably get PET/CT results from this week. Then hopefully I won't have to see him for another 2 or 3 months. It's funny though that I thought I would get this long break after finishing chemo. I got a letter today that it is time for my annual mammogram... LOL.
Well, have fun with that dilator and the romance novel... you dirty old lady! LOL

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

I couldn't find a way, after the fact, to edit my last post on this thread to make it sound less racy, and then I worried that I'd taken it too far in my attempt to be flip about the dilator. I just am working so hard at letting go of the 'cancer-Linda', now that I've finished treatments. And the dilator is the last daily reminder now that the eyelashes and hair are back. In my effort to be cavalier, I crossed the line a bit with that post. If I offended anyone, I apologize. (although, so far, you ladies seemed to have taken it as the giggle I was shooting for!) I'm not REALLY a dirty old lady, ...just a 'wanna-be', over the alternative of being 'cancer-Linda' any longer! It's HARD to re-define yourself in your own head once you finish treatment. Thanks for being so cool about my attempts.

Deanna: I'll be anxiously awaiting your scan results, so post when you know. I'm SURE you will continue to dance with NED, on and on and on!

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