1. < Gynecologic Cancers

Radiation therapy for vulvar cancer

Posted by vsinn2000 @vsinn2000, Nov 5, 2017

I am trying to find information from others who have had this treatment. My apointment is soon but my anxiety needs information sooner.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

vsinn2000 | @vsinn2000 | Nov 17, 2017
In reply to @hopeful33250 "Hi Vicky, @vsinn2000 I'm glad that it is over - the waiting game is such a..." + (show)
@hopeful33250

Hi Vicky, @vsinn2000

I'm glad that it is over - the waiting game is such a tough game to play, isn't it?

I'm also pleased that you had such an amazing nurse and anesthesiologist, what a blessing that was for you! And of course, your husband was there to support you as well.

Rest well, Vicky, it takes me several days as well to recover from any type of anesthesia, so I understand the two days of sleepiness.

Teresa

Jump to this post

Hey Teresa,
I am sleepy and sore. I'm hoping tomorrow I have a bit more energy. Thanks for your kind words. I think at this point my husband deserves kudos much more than I do! Lol. Hope you are doing well and have a great weekend.
Vicky

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 17, 2017
In reply to @hopeful33250 "Hi Vicky, @vsinn2000 I'm glad that it is over - the waiting game is such a..." + (show)
@hopeful33250

Hi Vicky, @vsinn2000

I'm glad that it is over - the waiting game is such a tough game to play, isn't it?

I'm also pleased that you had such an amazing nurse and anesthesiologist, what a blessing that was for you! And of course, your husband was there to support you as well.

Rest well, Vicky, it takes me several days as well to recover from any type of anesthesia, so I understand the two days of sleepiness.

Teresa

Jump to this post

Thanks, Vicky. Yes, I'm looking forward to the weekend. There are some good movies out now, I might see one.

I hope you and your hubby have a good weekend as well.

Teresa

REPLY
vsinn2000 | @vsinn2000 | Nov 21, 2017

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

REPLY
8 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 21, 2017
In reply to @vsinn2000 "Teresa, Did you make it out to a movie? I'm not sure if weather changes affect..." + (show)
@vsinn2000

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

Jump to this post

Hello Vicky @vsinn2000

I'm so pleased to hear from you! I'm especially pleased that you heard personally from the doctor at Mayo who you will be seeing. How nice that he took the time to talk with you prior to your appointment. That does show a very gracious quality! Also, it was good that you had a group of friends to send you off with well wishes and prayers! You deserve good wishes and supportive people in your life.

Your comment that you don't feel like you have to be (as you say) "wonder woman" is a big step in the right direction. That is a bit too much responsibility for any of us to carry out.

I can understand your concern about the discussion of chemo and colostomy, but I'm so glad that Mayo will be directing your treatment. I will be praying for the next steps you will be taking.

No, I didn't make it out to a movie this weekend - perhaps after Thanksgiving dinner - I'm not much of a football fan 🙂 I'm feeling OK, I've been going to physical therapy for some pain and movement problems and it is making a difference - so I'm grateful for that.

I'm looking forward to hearing from you tomorrow. As much as possible, keep up a positive attitude. We are all in your corner!

Blessings,

Teresa

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 21, 2017
In reply to @vsinn2000 "Teresa, Did you make it out to a movie? I'm not sure if weather changes affect..." + (show)
@vsinn2000

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

Jump to this post

Hi Vicky, perhaps you'll read this as your driving to your appointment today. I'll be thinking of you. Be sure to take time to visit the Cancer Education Center (CEC) in the Gonda Building. It is a very peaceful place to wait between appointments. The staff there are super helpful and very nice. Tell them Colleen and Teresa from Connect say hi. They'll be thrilled to know about the support you've been getting and giving here.

Here is the blog from the CEC https://connect.mayoclinic.org/page/cancer-education-center/. Interestingly the latest blog post is about "Combatting Negative Thoughts with Mindfulness". I bet you have some tips or thoughts that you could add to the comments: https://connect.mayoclinic.org/newsfeed-post/being-mindful-in-the-moment/

We're virtually by your side today and thankful that you have your chauffeur and biggest supporter by your side.

REPLY
vsinn2000 | @vsinn2000 | Nov 21, 2017
In reply to @vsinn2000 "Teresa, Did you make it out to a movie? I'm not sure if weather changes affect..." + (show)
@vsinn2000

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

Jump to this post

Teresa,
I do hope you get out and do something enjoyable. Physical therapy is one of those necessary evils. I'm glad its helping. I'll get an update posted this evening. Trying to stay positive.
Thank you,
Vicky

REPLY
vsinn2000 | @vsinn2000 | Nov 21, 2017

Hi Colleen,
I am reading it on my way up. We will stop in and for sure let them know about the great support! I hope by visits end today my negative thought are more positive. I will read it. Thanks to you and Teresa and anyone else for your thoughts and virtual support. It means so very much to me!

REPLY
vsinn2000 | @vsinn2000 | Nov 21, 2017
In reply to @vsinn2000 "Teresa, Did you make it out to a movie? I'm not sure if weather changes affect..." + (show)
@vsinn2000

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

Jump to this post

We had every itention of stopping in but it was late and I'm exhausted. We're about halfway home. Still over 2 hours to go. I promise an update tomorrow. Thank you and Teresa so much for big with me virtually. My husband got teary eyed when I read him your post.
Till tomorrow,
Vicky

REPLY
vsinn2000 | @vsinn2000 | Nov 22, 2017
In reply to @vsinn2000 "Teresa, Did you make it out to a movie? I'm not sure if weather changes affect..." + (show)
@vsinn2000

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

Jump to this post

Hello ladies! I'm still absorbing information but I feel our decisions have been made. Getting the plan in motion is going to happen quickly, which is something to deal with emotionally! Test results, types of treatments, options and odds. My new language. I have been firmly against chemo all of my adult life. If I do not use chemo and radiation to weaken and shrink this tumor, I am going to basically lose everything. I have to be blunt because of this type of cancer, the area is so crowded with different, very necessary organs. Without shrinking the tumor, the only thing I have any hope of saving is the urethra. I will lose my vagina and rectum completely. I will have a permanent colostomy bag. If chemo weakens the cells and radiation disrupts the growth, killing the cells it shrinks the area to be removed. I may even be fortunate enough to avoid surgery altogether. It would require a temporary colostomy, with reversal after treatment and healing. I know it's a lot to think about. So many different factors have to figure into this to make it work. Our next visit is the first with an early morning report time. We'll be coming up the day before so we will be able to make that visit with time to spend there, instead of a quick stop. I think it's going to be a big part of my treatment there. So that's where I am right now. We are going to sit the kids down this weekend and have the talk. They are adults so that makes it easier. I haven't thought far enough ahead to figure out the grandkids, and the great grandkids are still very young.
We're going to take Thursday and Friday to just be us, of course adjusting it down to my comfort level.
Please enjoy your holiday! I hope you know how much your support has helped. Please thank your family's for their understanding the time it takes you away from them. It is a true blessing that you appeared in my life!
Have a happy thanksgiving!
Vicky

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 22, 2017
In reply to @vsinn2000 "Teresa, Did you make it out to a movie? I'm not sure if weather changes affect..." + (show)
@vsinn2000

Teresa,
Did you make it out to a movie? I'm not sure if weather changes affect how you feel? It was windy but fairly warm here. I made it through pool league. They are a great group of folks that sent me off with bunches of well wishes and prayers. Every bit of support helps! I'm learning that I don't have to try and be wonder woman! I should be sleeping but I'm on yet another search for more information. I got a phone call directly from the Dr. I will be seeing tomorrow. I am pleasantly surprised by that and it does reinforce that Mayo is going to be the right choice for me. It seems this tumor size is extraordinarily large and won't be a radiation and surgical fix. Now terms like chemo and colostomy are thrown in. That I did not see coming so my positive attitude has taken a hit. I have a lot of questions. I'm going to grab a quick shower and a snack, then try to get a couple hours sleep before we head out. Its about four and a half hours so I'll nap in the car. Sent my husband off to bed about 11. I'll update tomorrow when I've asked my questions and have some idea of what's going to have to happen.
Vicky

Jump to this post

Hello Vicky @vsinn2000

I am so glad to hear that your appointment is over and you are in the process of decision making. It sounds as if you have a good handle on what needs to be done now. I'm sure that when the time comes, you will have the courage to face the challenges. Looking back to your earlier posts, I can see how you have changed and developed the determination to see this through. I commend you for that! It is not easy to trust, especially given your background of abuse - but you have managed to accomplish enough trust to take you this far.

I'll continue to pray for the best for you as you go forward with treatment. I hope you have a lovely day tomorrow, taking it at your own pace.

I'm glad to know that Mayo Connect has been helpful to you. Keep in touch as you continue this process towards healing - we are in your corner and wishing you the best!

Teresa

REPLY
View MoreView Less
Please sign in or register to post a reply.