Radiation therapy for vulvar cancer

This is gonna be a long one. It was like a day from a horror movie for me. Putting out first that I have agorophobia, anxiety, claustrophobia, frantic anxiety over IV's, panic attacks aND my PTSD is from 7 years(age 7-14) of sexual abuse by mystepfather with tying my arms being part of it , this was my day. I also do not handle exposure of very affected and horrible looking peri area at all. Getting me into a gown is impossible. I cannot tolerate the lack of dignity. Yes, my life is a struggle. All this background will be relevant later. This a new to me clinic at a teaching hospital. 3 people all asking me questions at check in desk - where they already have the 15 pages of information and history i filled out online. 15, i counted. In that paperwork is the discussion about the actual vulvar exam being done under sedation because of the pain, which is also recommended in the referral by my gyn. The referral also advises that from the time I walk through the front door to the time I go through OR doors, my husband is within 3 feet of me. She's been my gyn for 19 years and 3 surgeries. All these issues have been discussed via email on the portal with my nurse.does vitals. Nurse is next. Fellow is next, gives me a sheet. Bonus points cuz it's not paper towel size. So far, I'm just jittery and pacing, while my husband quards the door cuz I will run. Just sayin. Then comes the doctor, who talks for a bit then pulls on gloves. Oh hell no. We have the coversation - okay, i told him - you cannot do this without sedation because i simply cannot take the pain. Period. I have not sat down the entire time because I just can't. I can't even sit in the SUV. I have a pile of blankets in the back I lay on. It's the only way I can ride in the car. So, I cannot move my right leg clear over to the stirrup because of the extra tissue growth, screen tissue and fissures. So we do this shuffle where I scoot and they keep moving my feet. Finally the nurse asks me if it's painful to stretch my leg over that far. Doc has pissy expression. Unbelievably, he actually attempt to start an exam. I'm bawling and almost puking, come straight off the table and freak out. My husband flips out. Everyone goes to their corners while my husband attempts to calm me down. End result - the rest of pre-op today and exam under sedation next Thursday. So, also need blood work, xray, CT, PET, and EKG. Managed lab and xray. Had issues but made it. Hubby 3 feet away behind window during xray, btw. CT and PET go okay until I see the machine, they say I have an IV and then lay there, by myself, for 80 minutes so injected crap works it's way around. I have 3 issues here - the IV (they make me hysterical ); hubby cannot even wait the 80 minutes in the prep room with me, let alone be there while the scan is done (he has always been allowed before, even at this hospital); and the tube part of the machine is longer than I am tall. 30 minutes later he is with while I get the IV in, med pushed, and IV removed. I laid there, tears running, waiting for 60 minutes to pass so he can come back in while I drink the next appropriate amount of nasty liquid, use the bathroom and get what's left of the 20 minutes (of the 80) I have to wait getting precious hugs and a pep talk from hubby. He goes to waiting room to wait the 20 minutes it's supposed to take so they can come get him back to the prep room so that he can keep my reaction under control when I wake up in a strange place. Meanwhile, a full blown panic attack is going on when THEY wake me up freaked out as hell, hustle me into the bathroom and when i come out he's on his way through the doors and headed my direction! Thank God! Finally I'm calmer and in the into procedure area. Then tell me they are actually doing eyebrows to knees on scan instead of hips to knees like they had just said 90 minutes earlier. Can i gut it out? Finally pursuaded on the table she tries to stabilize my head, and yes I get the need for it, but covers most of my face. Panic reaction again. They need my hands clasped over my head. I conquer that, finally. They explain using a small pillow case from hands to shoulders to help take strain from my arms. Again, conquered. Then she breaks out the tape and proceeds to attempt to tape the pillowcase to my arms. I freakin lost it. After awhile, I am again managing the attempt to gut this out. Mius the Bean bag stabilizer so close around my face, and NO tape on the pillowcase. I close my eyes, knowing I can call for them to stop through the microphone. A bit later I open my eyes and I am IN THE TUBE! Seemingly stopped. Tears, nausea, and severe shaking start as I call for help on the microphone . Lady comes in, stands by the end of the tube, holds my hand and tris to talk me down. Only 2 minutes left. Okay, I can do this. Finally done, bawling, shaking, severe wheezing breaths and they hand me my coat and purse then send me out the door like nothing has happened.

This is gonna be a long one. It was like a day from a horror movie for me. Putting out first that I have agorophobia, anxiety, claustrophobia, frantic anxiety over IV's, panic attacks aND my PTSD is from 7 years(age 7-14) of sexual abuse by mystepfather with tying my arms being part of it , this was my day. I also do not handle exposure of very affected and horrible looking peri area at all. Getting me into a gown is impossible. I cannot tolerate the lack of dignity. Yes, my life is a struggle. All this background will be relevant later. This a new to me clinic at a teaching hospital. 3 people all asking me questions at check in desk - where they already have the 15 pages of information and history i filled out online. 15, i counted. In that paperwork is the discussion about the actual vulvar exam being done under sedation because of the pain, which is also recommended in the referral by my gyn. The referral also advises that from the time I walk through the front door to the time I go through OR doors, my husband is within 3 feet of me. She's been my gyn for 19 years and 3 surgeries. All these issues have been discussed via email on the portal with my nurse.does vitals. Nurse is next. Fellow is next, gives me a sheet. Bonus points cuz it's not paper towel size. So far, I'm just jittery and pacing, while my husband quards the door cuz I will run. Just sayin. Then comes the doctor, who talks for a bit then pulls on gloves. Oh hell no. We have the coversation - okay, i told him - you cannot do this without sedation because i simply cannot take the pain. Period. I have not sat down the entire time because I just can't. I can't even sit in the SUV. I have a pile of blankets in the back I lay on. It's the only way I can ride in the car. So, I cannot move my right leg clear over to the stirrup because of the extra tissue growth, screen tissue and fissures. So we do this shuffle where I scoot and they keep moving my feet. Finally the nurse asks me if it's painful to stretch my leg over that far. Doc has pissy expression. Unbelievably, he actually attempt to start an exam. I'm bawling and almost puking, come straight off the table and freak out. My husband flips out. Everyone goes to their corners while my husband attempts to calm me down. End result - the rest of pre-op today and exam under sedation next Thursday. So, also need blood work, xray, CT, PET, and EKG. Managed lab and xray. Had issues but made it. Hubby 3 feet away behind window during xray, btw. CT and PET go okay until I see the machine, they say I have an IV and then lay there, by myself, for 80 minutes so injected crap works it's way around. I have 3 issues here - the IV (they make me hysterical ); hubby cannot even wait the 80 minutes in the prep room with me, let alone be there while the scan is done (he has always been allowed before, even at this hospital); and the tube part of the machine is longer than I am tall. 30 minutes later he is with while I get the IV in, med pushed, and IV removed. I laid there, tears running, waiting for 60 minutes to pass so he can come back in while I drink the next appropriate amount of nasty liquid, use the bathroom and get what's left of the 20 minutes (of the 80) I have to wait getting precious hugs and a pep talk from hubby. He goes to waiting room to wait the 20 minutes it's supposed to take so they can come get him back to the prep room so that he can keep my reaction under control when I wake up in a strange place. Meanwhile, a full blown panic attack is going on when THEY wake me up freaked out as hell, hustle me into the bathroom and when i come out he's on his way through the doors and headed my direction! Thank God! Finally I'm calmer and in the into procedure area. Then tell me they are actually doing eyebrows to knees on scan instead of hips to knees like they had just said 90 minutes earlier. Can i gut it out? Finally pursuaded on the table she tries to stabilize my head, and yes I get the need for it, but covers most of my face. Panic reaction again. They need my hands clasped over my head. I conquer that, finally. They explain using a small pillow case from hands to shoulders to help take strain from my arms. Again, conquered. Then she breaks out the tape and proceeds to attempt to tape the pillowcase to my arms. I freakin lost it. After awhile, I am again managing the attempt to gut this out. Mius the Bean bag stabilizer so close around my face, and NO tape on the pillowcase. I close my eyes, knowing I can call for them to stop through the microphone. A bit later I open my eyes and I am IN THE TUBE! Seemingly stopped. Tears, nausea, and severe shaking start as I call for help on the microphone . Lady comes in, stands by the end of the tube, holds my hand and tris to talk me down. Only 2 minutes left. Okay, I can do this. Finally done, bawling, shaking, severe wheezing breaths and they hand me my coat and purse then send me out the door like nothing has happened.

This is gonna be a long one. It was like a day from a horror movie for me. Putting out first that I have agorophobia, anxiety, claustrophobia, frantic anxiety over IV's, panic attacks aND my PTSD is from 7 years(age 7-14) of sexual abuse by mystepfather with tying my arms being part of it , this was my day. I also do not handle exposure of very affected and horrible looking peri area at all. Getting me into a gown is impossible. I cannot tolerate the lack of dignity. Yes, my life is a struggle. All this background will be relevant later. This a new to me clinic at a teaching hospital. 3 people all asking me questions at check in desk - where they already have the 15 pages of information and history i filled out online. 15, i counted. In that paperwork is the discussion about the actual vulvar exam being done under sedation because of the pain, which is also recommended in the referral by my gyn. The referral also advises that from the time I walk through the front door to the time I go through OR doors, my husband is within 3 feet of me. She's been my gyn for 19 years and 3 surgeries. All these issues have been discussed via email on the portal with my nurse.does vitals. Nurse is next. Fellow is next, gives me a sheet. Bonus points cuz it's not paper towel size. So far, I'm just jittery and pacing, while my husband quards the door cuz I will run. Just sayin. Then comes the doctor, who talks for a bit then pulls on gloves. Oh hell no. We have the coversation - okay, i told him - you cannot do this without sedation because i simply cannot take the pain. Period. I have not sat down the entire time because I just can't. I can't even sit in the SUV. I have a pile of blankets in the back I lay on. It's the only way I can ride in the car. So, I cannot move my right leg clear over to the stirrup because of the extra tissue growth, screen tissue and fissures. So we do this shuffle where I scoot and they keep moving my feet. Finally the nurse asks me if it's painful to stretch my leg over that far. Doc has pissy expression. Unbelievably, he actually attempt to start an exam. I'm bawling and almost puking, come straight off the table and freak out. My husband flips out. Everyone goes to their corners while my husband attempts to calm me down. End result - the rest of pre-op today and exam under sedation next Thursday. So, also need blood work, xray, CT, PET, and EKG. Managed lab and xray. Had issues but made it. Hubby 3 feet away behind window during xray, btw. CT and PET go okay until I see the machine, they say I have an IV and then lay there, by myself, for 80 minutes so injected crap works it's way around. I have 3 issues here - the IV (they make me hysterical ); hubby cannot even wait the 80 minutes in the prep room with me, let alone be there while the scan is done (he has always been allowed before, even at this hospital); and the tube part of the machine is longer than I am tall. 30 minutes later he is with while I get the IV in, med pushed, and IV removed. I laid there, tears running, waiting for 60 minutes to pass so he can come back in while I drink the next appropriate amount of nasty liquid, use the bathroom and get what's left of the 20 minutes (of the 80) I have to wait getting precious hugs and a pep talk from hubby. He goes to waiting room to wait the 20 minutes it's supposed to take so they can come get him back to the prep room so that he can keep my reaction under control when I wake up in a strange place. Meanwhile, a full blown panic attack is going on when THEY wake me up freaked out as hell, hustle me into the bathroom and when i come out he's on his way through the doors and headed my direction! Thank God! Finally I'm calmer and in the into procedure area. Then tell me they are actually doing eyebrows to knees on scan instead of hips to knees like they had just said 90 minutes earlier. Can i gut it out? Finally pursuaded on the table she tries to stabilize my head, and yes I get the need for it, but covers most of my face. Panic reaction again. They need my hands clasped over my head. I conquer that, finally. They explain using a small pillow case from hands to shoulders to help take strain from my arms. Again, conquered. Then she breaks out the tape and proceeds to attempt to tape the pillowcase to my arms. I freakin lost it. After awhile, I am again managing the attempt to gut this out. Mius the Bean bag stabilizer so close around my face, and NO tape on the pillowcase. I close my eyes, knowing I can call for them to stop through the microphone. A bit later I open my eyes and I am IN THE TUBE! Seemingly stopped. Tears, nausea, and severe shaking start as I call for help on the microphone . Lady comes in, stands by the end of the tube, holds my hand and tris to talk me down. Only 2 minutes left. Okay, I can do this. Finally done, bawling, shaking, severe wheezing breaths and they hand me my coat and purse then send me out the door like nothing has happened.

This is gonna be a long one. It was like a day from a horror movie for me. Putting out first that I have agorophobia, anxiety, claustrophobia, frantic anxiety over IV's, panic attacks aND my PTSD is from 7 years(age 7-14) of sexual abuse by mystepfather with tying my arms being part of it , this was my day. I also do not handle exposure of very affected and horrible looking peri area at all. Getting me into a gown is impossible. I cannot tolerate the lack of dignity. Yes, my life is a struggle. All this background will be relevant later. This a new to me clinic at a teaching hospital. 3 people all asking me questions at check in desk - where they already have the 15 pages of information and history i filled out online. 15, i counted. In that paperwork is the discussion about the actual vulvar exam being done under sedation because of the pain, which is also recommended in the referral by my gyn. The referral also advises that from the time I walk through the front door to the time I go through OR doors, my husband is within 3 feet of me. She's been my gyn for 19 years and 3 surgeries. All these issues have been discussed via email on the portal with my nurse.does vitals. Nurse is next. Fellow is next, gives me a sheet. Bonus points cuz it's not paper towel size. So far, I'm just jittery and pacing, while my husband quards the door cuz I will run. Just sayin. Then comes the doctor, who talks for a bit then pulls on gloves. Oh hell no. We have the coversation - okay, i told him - you cannot do this without sedation because i simply cannot take the pain. Period. I have not sat down the entire time because I just can't. I can't even sit in the SUV. I have a pile of blankets in the back I lay on. It's the only way I can ride in the car. So, I cannot move my right leg clear over to the stirrup because of the extra tissue growth, screen tissue and fissures. So we do this shuffle where I scoot and they keep moving my feet. Finally the nurse asks me if it's painful to stretch my leg over that far. Doc has pissy expression. Unbelievably, he actually attempt to start an exam. I'm bawling and almost puking, come straight off the table and freak out. My husband flips out. Everyone goes to their corners while my husband attempts to calm me down. End result - the rest of pre-op today and exam under sedation next Thursday. So, also need blood work, xray, CT, PET, and EKG. Managed lab and xray. Had issues but made it. Hubby 3 feet away behind window during xray, btw. CT and PET go okay until I see the machine, they say I have an IV and then lay there, by myself, for 80 minutes so injected crap works it's way around. I have 3 issues here - the IV (they make me hysterical ); hubby cannot even wait the 80 minutes in the prep room with me, let alone be there while the scan is done (he has always been allowed before, even at this hospital); and the tube part of the machine is longer than I am tall. 30 minutes later he is with while I get the IV in, med pushed, and IV removed. I laid there, tears running, waiting for 60 minutes to pass so he can come back in while I drink the next appropriate amount of nasty liquid, use the bathroom and get what's left of the 20 minutes (of the 80) I have to wait getting precious hugs and a pep talk from hubby. He goes to waiting room to wait the 20 minutes it's supposed to take so they can come get him back to the prep room so that he can keep my reaction under control when I wake up in a strange place. Meanwhile, a full blown panic attack is going on when THEY wake me up freaked out as hell, hustle me into the bathroom and when i come out he's on his way through the doors and headed my direction! Thank God! Finally I'm calmer and in the into procedure area. Then tell me they are actually doing eyebrows to knees on scan instead of hips to knees like they had just said 90 minutes earlier. Can i gut it out? Finally pursuaded on the table she tries to stabilize my head, and yes I get the need for it, but covers most of my face. Panic reaction again. They need my hands clasped over my head. I conquer that, finally. They explain using a small pillow case from hands to shoulders to help take strain from my arms. Again, conquered. Then she breaks out the tape and proceeds to attempt to tape the pillowcase to my arms. I freakin lost it. After awhile, I am again managing the attempt to gut this out. Mius the Bean bag stabilizer so close around my face, and NO tape on the pillowcase. I close my eyes, knowing I can call for them to stop through the microphone. A bit later I open my eyes and I am IN THE TUBE! Seemingly stopped. Tears, nausea, and severe shaking start as I call for help on the microphone . Lady comes in, stands by the end of the tube, holds my hand and tris to talk me down. Only 2 minutes left. Okay, I can do this. Finally done, bawling, shaking, severe wheezing breaths and they hand me my coat and purse then send me out the door like nothing has happened.

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.

Hello @vsinn2000

I'm really not able to answer your question about teaching hospitals and new therapies all that well. At Mayo Connect, we are patients, just like you, and I don't have any answers to how medical teams work, etc. Perhaps someone else can give you a perspective on that.

I'm sure your confusion comes from many different experiences right now. I sincerely wish you well as you wait for your next appointment.

Peace and strength,

Teresa

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.