Mayo Clinic Connect
I am trying to find information from others who have had this treatment. My apointment is soon but my anxiety needs information sooner.
Liked by Teresa, Volunteer Mentor
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.
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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.
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!
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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.
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!
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!
I thank you for all the encouragement you’ve offered. It’s been just 3 weeks! Those three weeks feel like a lifetime already. I am enjoying my day with family and sincerely hope you enjoy your day as well! I am determined, true, but that varies daily. Lol. No deep comments or discussions today, I declare a day off!
Agreed, Thanksgiving is a day for family, friends and light discussions! I hope it has been wonderful for you.
I’ve got a long road ahead of me wirh this doc. Wondering if a change is in order? My husband has been amazing, always willing to do whatever I need. I know it’s got to be over whelming for him but he just keeps going. Without violating any rules and realizing g it’s Mayo Clinics site, what are you seeing in teaching hospitals vs new therapies? Its really confusing.
I’m not finding those trials. Apparently that is another skill I need to learn. Are you aware of any others? It seems that any other cancer has a gene or receptor that can dramatically increase targeting specific cancers. I know this type is rare but my hope is to find such a trial and get treatment for this nailed down for future newbies! And yes, my wonder woman complex is leaking through! I’m feeling ready to kick some cancer butt!
I like you attitude, Vicky, “I’m feeling ready to kick some cancer butt!”
Hello Vicky: I “googled” clinical trials through the NIH website and found this link, you might want to take a look at it, https://clinicaltrials.gov/ct2/results?cond=Vulvar+Cancer&term=&cntry1=NA%3AUS&state1=&recrs=
I wish you all the best with your radiation simulation and treatment tomorrow. I think you mentioned that you are getting external-beam radiation. Or maybe I just assume you are getting external-beam radiation because you are having a simulation. External-bean radiation therapy is radiation given from a machine outside the body. During the simulation, they may have to make small pen marks or tattoos to mark where they will set the radiation beam for each treatment. This helps the treatment be precise.
Here’s a little more explanation of what to expect https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=19551-1
Above all, Vicky, I encourage you to let the team know how anxious you are and how difficult it is to be touched, especially in this region of YOUR body. I’m confident that you will be treated with dignity and respect.
A few other things to prepare yourself for. The radiation therapist will carefully help you into the right position and will move big camera like machines to get the beam in the right position. The machine will never touch you, but it might make whirring noises and move around. Remember it is a machine and it can’t touch you. You may find it uncomfortable that the radiation therapist is looking at you and focusing on your position, but remember that she is your team mate. Think about it this way. She is staring down those nasty cancer cells and giving them the hairy eye ball (I hope that makes you giggle). The machines are the big guns and their laser beams are going to zap those nasty cells.
If you wish, your husband can be with you while your being positioned etc. Both your husband and the technician have to leave the room when the radiation is given, but this takes only seconds and then they’ll come right back in. You can also talk to them for the few seconds they are not in the room if you need to.
Please visualize that Teresa will be holding one hand and I the other. We’re there with you virtually. And remember to breathe. You can do this.
Liked by Teresa, Volunteer Mentor, vsinn2000
As always, you know the things to say. The magic words – your husband can be with you. I’ve been laying here in this dark motel room, tears running, trying not to wake the exhausted man who is trying to be everything for me. An explanation I looked everywhere for and couldn’t find. I will look at the link when i finish this. You have no idea how hard I will be holding onto those virtual hands in just a few hours! Thank you so very, very much. Yes, with the amazing support I have, I can do this!
Thank you just doesn’t say enough,
Good morning, Vicky. Just letting you know I’m here, squeezing your hand.
After this day, your hand should be seriously bruised! Today has been so very hard. I found myself at the end of the list of things to get through, and reality smacked me hard.
@vsinn2000 Oh Vicky,
I am so glad that the day is over! I’m sorry that it was so hard for you. We know that you are trying – and we also know how difficult it must be.
You said that “reality smacked me hard.” When you are feeling better and more rested, feel free to share, as you are comfortable doing so, what that means to you.
Rest well and take care,
Liked by vsinn2000
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