Cervical Cancer

dmpdeb
dmpdeb Member Posts: 1
in Gynecological Cancers (other than ovarian and uterine) #1
In January, I was diagnosed with cervical adenocarcinoma. My gynecologist referred me to a gynecology oncologist, and I underwent a radical hysterectomy. I was initially diagnosed as stage 1 B. The pathology report indicates that my lymph nodes are clear; however, due to lympohvascular space invasion, I have been referred to a radiation oncologist, and have been upgraded to stage II. The nurse indicated that I would undergo 5 weeks of radiation/chemo therapy. After reading about the complications of radiation therapy, I am apprehensive about pursuing this. Yes, I am scared! If anyone has gone through this therapy, I would be grateful if you would share your experiences. Anything that I can learn about this will help me.

Thank you!
dmpdeb

Comments

  • ccfighter
    ccfighter Member Posts: 476 Member
    #2
    Hi dmpdeb,
    I also was
    Hi dmpdeb,

    I also was diagnosed with cervical adenocarcinoma, although that was changed to adenosquamous carcinoma after the hysterectomy. I am 2A according to FIGO but if they changed things based on surgical findings I would likely be staged higher since there was metastisis to my pelvic lymph nodes and my pelvic wash was also positive-something I have a hard time finding useful information on regarding cervical cancer. I have completed three rounds of carbo/taxol and begin cisplatin with concurrent radiation on Monday. I wish I could give you some guidance on the subject but I am heading into uncharted waters myself, nervous about the whole bit. I hope it's not at bad as I am scaring myself by reading all the posts of others experiences with it. I hope all things go well for you with your treatment. Your stage is one I know you can beat!
  • ccfighter
    ccfighter Member Posts: 476 Member
    #3

  • beckyracn
    beckyracn Member Posts: 322
    #4
    I had lots of experience
    I had lots of experience with both internal and external rads...what would you like to know?
  • ccfighter
    ccfighter Member Posts: 476 Member
    #5
    beckyracn said:

    I had lots of experience
    I had lots of experience with both internal and external rads...what would you like to know?

    Hi beckyracn,
    Thanks for
    Hi beckyracn,

    Thanks for your response. If you know anything about positive pelvic washings and it's prognostic relationship to cervical cancer that would be awesome.
    I was scared enough by the high dose chemo of carbo/taxol but managed to survive that relatively well, although needed neurogen shots, am completely bald, and needed boat loads of stool softeners for the first week after each infusion. It wasn't as horrible as I had imagined. So next is the low dose cisplatin with concurrent radiation (whole pelvis) for 5 weeks. I am scaring myself silly with thoughts of burns and living on the toilet and not being able to leave the house and care for my children. How accurate are my nightmares? I'm already beaten down by the radical hysterectomy and then three rounds of carbo/taxol and am a firm believer of positive frame of mind making for a more positive experience in the face of such unpleasant treatments but am becoming more and more exhausted by the seemingly endless treatments and their toll. With the cisplatin being weekly and the radiation daily, it seems there is no break to recuperate and feel normal. I asked the chemo nurses to schedule me for Monday infusions in hopes that I will feel well enough by saturday to have a glass of wine and a nice dinner with my family, although, I am not sure if that is a realistic expectation. I also feel that the doctors minimize the side effects of radiation. One nurse told me that the radiation would not effect my skin, that the radiation somehow magically reaches my empty uterine cavity without damaging the skin, then she proceeded to give me skin cream for any area there are folds such as the groin and rectal area. Uh...ok. Then the nutritionist gave me L-Glutamine powder and told me that this wards off diarrhea until the third week, although the radiation oncologist told me that one doesn't really diarrhea, more like a baby's soft stool. Uh. Ok.
    So, any advice? I am a firm believer of being proactive and preventing and minimizing side effects before they can happen. L-Glutamine powder I have been using with chemo to help with the bone pain and it has worked like a charm, although I now have a major aversion to it and have a hard time getting it down. I also have three kids, 4,6,8, and as such have feeding, bathing, driving, parties, ect I have to contend with. I have a wonderful support system which I am grateful for, but also suffer the loss associated with not being able to participate in my kids lives during treatment the way I did before. Sorry for the long spill here, just too much going on in the head. I start radiation in three days and am dreading it. I hoping it's not as bad as I imagine. Thanks.
  • beckyracn
    beckyracn Member Posts: 322
    #6
    ccfighter said:

    Hi beckyracn,
    Thanks for
    Hi beckyracn,

    Thanks for your response. If you know anything about positive pelvic washings and it's prognostic relationship to cervical cancer that would be awesome.
    I was scared enough by the high dose chemo of carbo/taxol but managed to survive that relatively well, although needed neurogen shots, am completely bald, and needed boat loads of stool softeners for the first week after each infusion. It wasn't as horrible as I had imagined. So next is the low dose cisplatin with concurrent radiation (whole pelvis) for 5 weeks. I am scaring myself silly with thoughts of burns and living on the toilet and not being able to leave the house and care for my children. How accurate are my nightmares? I'm already beaten down by the radical hysterectomy and then three rounds of carbo/taxol and am a firm believer of positive frame of mind making for a more positive experience in the face of such unpleasant treatments but am becoming more and more exhausted by the seemingly endless treatments and their toll. With the cisplatin being weekly and the radiation daily, it seems there is no break to recuperate and feel normal. I asked the chemo nurses to schedule me for Monday infusions in hopes that I will feel well enough by saturday to have a glass of wine and a nice dinner with my family, although, I am not sure if that is a realistic expectation. I also feel that the doctors minimize the side effects of radiation. One nurse told me that the radiation would not effect my skin, that the radiation somehow magically reaches my empty uterine cavity without damaging the skin, then she proceeded to give me skin cream for any area there are folds such as the groin and rectal area. Uh...ok. Then the nutritionist gave me L-Glutamine powder and told me that this wards off diarrhea until the third week, although the radiation oncologist told me that one doesn't really diarrhea, more like a baby's soft stool. Uh. Ok.
    So, any advice? I am a firm believer of being proactive and preventing and minimizing side effects before they can happen. L-Glutamine powder I have been using with chemo to help with the bone pain and it has worked like a charm, although I now have a major aversion to it and have a hard time getting it down. I also have three kids, 4,6,8, and as such have feeding, bathing, driving, parties, ect I have to contend with. I have a wonderful support system which I am grateful for, but also suffer the loss associated with not being able to participate in my kids lives during treatment the way I did before. Sorry for the long spill here, just too much going on in the head. I start radiation in three days and am dreading it. I hoping it's not as bad as I imagine. Thanks.

    Sorry I can't help you with
    Sorry I can't help you with any info on the pelvic wash, but I can offer some insight into the radiation and Cisplatin. I received high doses of Cisplatin, so the effects I experienced may be different. The first month was a real bad one for nausea until we found a combination of meds that helped with that...then it wasn't so bad. It really affected my taste buds...things had a metallic taste. I also developed inner ear damage from it, so vertigo was a whopper. Not many people get hit with this, and I was on a high dose, so hopefully you won't experience any of that.
    With the rads, you probably won't feel anything the first week. Some people do experience nausea with it, but going into the second week I got hit with wicked heartburn....they have a pill for that. Matter of fact, they have a pill for just about everything....I could have opened up my own pharmacy by the time I was done cause if this doesn't work...maybe that will...I experienced more constipation than diarrhea throughout. If your bum gets sore, ask for lidocaine jel. Exhaustion was the worst of it all. I could fall asleep instantly and I had always been one of those who laid in bed for hours before I could fall asleep. The hardest part of treatment was asking for help. I did have a good support team, but never really let on how I was feeling throughout the whole ordeal cause I didn't want anyone hovering over me and none of them could understand what I was really going through. When I went into the shower...this is when I'd cry. I did end up with a radiation burn in my sacral area that they gave me something for...don't recall what.
    I'm sorry that your having to go through all this...it's not fun! This is a roller coaster ride from hell that you can't get off when you've had enough...I know cause I asked. Hang in there...it will all be over before you know it...then the real fight begins!
  • ccfighter
    ccfighter Member Posts: 476 Member
    #7
    beckyracn said:

    Sorry I can't help you with
    Sorry I can't help you with any info on the pelvic wash, but I can offer some insight into the radiation and Cisplatin. I received high doses of Cisplatin, so the effects I experienced may be different. The first month was a real bad one for nausea until we found a combination of meds that helped with that...then it wasn't so bad. It really affected my taste buds...things had a metallic taste. I also developed inner ear damage from it, so vertigo was a whopper. Not many people get hit with this, and I was on a high dose, so hopefully you won't experience any of that.
    With the rads, you probably won't feel anything the first week. Some people do experience nausea with it, but going into the second week I got hit with wicked heartburn....they have a pill for that. Matter of fact, they have a pill for just about everything....I could have opened up my own pharmacy by the time I was done cause if this doesn't work...maybe that will...I experienced more constipation than diarrhea throughout. If your bum gets sore, ask for lidocaine jel. Exhaustion was the worst of it all. I could fall asleep instantly and I had always been one of those who laid in bed for hours before I could fall asleep. The hardest part of treatment was asking for help. I did have a good support team, but never really let on how I was feeling throughout the whole ordeal cause I didn't want anyone hovering over me and none of them could understand what I was really going through. When I went into the shower...this is when I'd cry. I did end up with a radiation burn in my sacral area that they gave me something for...don't recall what.
    I'm sorry that your having to go through all this...it's not fun! This is a roller coaster ride from hell that you can't get off when you've had enough...I know cause I asked. Hang in there...it will all be over before you know it...then the real fight begins!

    Thank you for your response
    Thank you for your response Beckyracn. It is true that those around you can't really understand what one has to go through when it comes to cancer diagnosis and treatment. It is really wonderful to be able to communicate with others who have shared similar experiences as those which I am going through. I appreciate you being honest and open about your experiences, which helps to calm some of the anxiety walking into the unknown. I have read some of your other posts on here and it seems you have been a wonderful source of support and inspiration for many other women going through similar circumstances...so thank you. Best of luck to you and your family.
  • beckyracn
    beckyracn Member Posts: 322
    #8
    ccfighter said:

    Thank you for your response
    Thank you for your response Beckyracn. It is true that those around you can't really understand what one has to go through when it comes to cancer diagnosis and treatment. It is really wonderful to be able to communicate with others who have shared similar experiences as those which I am going through. I appreciate you being honest and open about your experiences, which helps to calm some of the anxiety walking into the unknown. I have read some of your other posts on here and it seems you have been a wonderful source of support and inspiration for many other women going through similar circumstances...so thank you. Best of luck to you and your family.

    Best of luck to you
    Best of luck to you ccfighter. And remember, all of us have different experiences, so much of what I shared may never happen to you. These are just the general ones that almost everyone gets hit with. I had numerous other side effects, not generally experienced. I guess I was just one of the lucky ones :)

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