brachy/Deanna

pjba11
pjba11 Member Posts: 188
edited March 2014 in Uterine Cancer #1
Deanna, I just happened to see your discussion on another site where the internal radiation topic came up. It is amazing how mine and yours were different. I did not have the catheters in the simulation or during the actual radiation. How awful for you. I did have some barrium during the simulation, but other than that I just had the vaginal 'pack' proceedure for the 3 sessions. I am curious if any of the others had such a difference in the proceedure. It is much to degrading and invasive but if it keeps us alive .... bring it on!!... .. God bless us all through the thick and the thin of this dreaded disease!!
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Comments

  • deanna14
    deanna14 Member Posts: 732
    Amen!
    I kind of get on a soapbox about the internal radiation. As a medical professional myself, I know it is easy to get into the day to day of your job and temporarily "forget" you are dealing with a lot of feelings and emotions. I think we should be told very graphically and vividly what it going to happen, then it wouldn't be so scary!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    deanna14 said:

    Amen!
    I kind of get on a soapbox about the internal radiation. As a medical professional myself, I know it is easy to get into the day to day of your job and temporarily "forget" you are dealing with a lot of feelings and emotions. I think we should be told very graphically and vividly what it going to happen, then it wouldn't be so scary!

    I dread the brachy most of all.
    Each day brings me closer to my radiation treatments, especially now that it looks like my body isn't going to allow me to finish all 6 rounds of chemo. I admit to worrying about the brachy. Not just the humiliation and degradation of it, but what it might do to my sex life long-term. But it has to be done. I know that. Don't like it, but plan to do it. I'll let you know the gory details once I get to that stage. I'm so glad I know what it will be like, going in. No one at my cancer center has said anything at all about what it will be like or what it might do to me long-term. I'm so grateful I have you to allow me to be as emotionally prepared as possible; I do better when I am not surprised.
  • pjba11
    pjba11 Member Posts: 188
    deanna14 said:

    Amen!
    I kind of get on a soapbox about the internal radiation. As a medical professional myself, I know it is easy to get into the day to day of your job and temporarily "forget" you are dealing with a lot of feelings and emotions. I think we should be told very graphically and vividly what it going to happen, then it wouldn't be so scary!

    I agree
    Knowledge is power for us. It is so good to be able to know what is coming to boost our strength. Who is still left here of our sisters to have brachy? I so hope they do not have the nasty kind of proceedures you did. Mine were bad enough!! Do you suppose it had something to do with the 'range' our original tumors were in? It seems like they were setting yours up in an exact area compared to mine. ?? The good thing is... we are on the right side of that proceedure now and have moved on !! I think about you and some of the hair difficulties I had. Our friends always wanted to go out and dance the season I had no hair. I could not do it! I just could not feel like I could get out on the dance floor and boogy!! I could just see my wig landing on the next persons head or flying into cyberland!! Oh well, I now have hair and soon yours will be back in all its glory! God bless.
  • pjba11
    pjba11 Member Posts: 188

    I dread the brachy most of all.
    Each day brings me closer to my radiation treatments, especially now that it looks like my body isn't going to allow me to finish all 6 rounds of chemo. I admit to worrying about the brachy. Not just the humiliation and degradation of it, but what it might do to my sex life long-term. But it has to be done. I know that. Don't like it, but plan to do it. I'll let you know the gory details once I get to that stage. I'm so glad I know what it will be like, going in. No one at my cancer center has said anything at all about what it will be like or what it might do to me long-term. I'm so grateful I have you to allow me to be as emotionally prepared as possible; I do better when I am not surprised.

    wish I could do it again for you
    Linda; I have been through it once, and if I could I would do it for you. I know it would not be as 'bad' ...unknowing ? the second time because I know the routine. As I was going through the brachy simulation I kept waiting for the 'bad' part. It was not bad at all except for the emotional invasion. Just pressure internally. Not pain. No pain ever. I was also lucky to have all young women working on me for the simulation and the only male I had to deal with was the Dr. Even then he had his nurses 'unpack' me so I only had to see him for the simulation and once to start each session. He was the Dr that found the total trial information for me. I feel like he may have been the Dr that saved me from a higher recurrence percentage by letting me stay on track with the aggressive treatments. He was just getting ready to retire when he helped me through the clinical trial. I often think I will write him a letter and let him know I am still hanging around!! Clear your mind of worry about the brachy proceedure. This too shall pass. Life is good and we are going to keep it that way. PS There isn't even any needles in this proceedure!!
  • cookie1948
    cookie1948 Member Posts: 77
    serous carcinoma
    Hello,
    I have been reading online on the discussion boards. I have never heard of all of these treatments people are mentioning. My mom is 85 and having total hysterectomy in the next 2 weeks due to the serous carcinoma. I was told that if it is contained there and depending on what stage it is she won't need chemo, besides my mom does not want chemo. She is in good health otherwise and is pretty strong for an 85 yr old woman. Is everyone having extensive chemo and internal radiation because this uterine disease had spread or a different diagnosis?
    thanks so much.
    Linda aka Cookie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    serous carcinoma
    Hello,
    I have been reading online on the discussion boards. I have never heard of all of these treatments people are mentioning. My mom is 85 and having total hysterectomy in the next 2 weeks due to the serous carcinoma. I was told that if it is contained there and depending on what stage it is she won't need chemo, besides my mom does not want chemo. She is in good health otherwise and is pretty strong for an 85 yr old woman. Is everyone having extensive chemo and internal radiation because this uterine disease had spread or a different diagnosis?
    thanks so much.
    Linda aka Cookie

    (((Cookie))) probably not what you are hoping to hear...
    First, has your mother's cancer definitely been identified as Uterine Papillary Serous Carcinoma? If your mother has the more common type of uterine cancer that accounts for 90% of all uterine cancers, then most of this does NOT apply to your mother. But if she has UPSC, then what I tell you comes from my heart, and I tell this to you with deep compassion because I know it is not what you are hoping to hear. Uterine Papillary Serous Carcinoma is such an aggressive cancer. You will want to encourage your mother, if she has the physical strength, to be open-minded to having chemo and radiation if recommended. Recurrence rates for UPSC are VERY high for those who don't push on and get the chemo and rads.

    You ask if the UPSC Sisters posting in this thread are dealing with a recurrence. No. All but 1 of the UPSC Sisters posting here went right from having their hysterectomy into either chemo or radiation treatment 4 or 5 weeks following their surgery.

    Your mother's cancer won't really be definitively 'staged' until she has her hysterectomy. Please make sure that she is also having lymph nodes removed along with the hysterectomy as this is critical to having her cancer properly staged. Her surgery needs to be done by a gynecologic oncologist, not just a gynecologist. Staging defines what additional treatment will be needed. If the tissue analysis following your mother's surgery shows her to be Stage 1, she may be spared the chemo and radiation. But if her surgery pathology shows that she is Stage II, III, or IV, you should prepare yourself for a recommendation by your oncologist for additional treatments for your mother like chemo and radiation.

    Whether you feel you should forewarn your mother is your decision. She may need to just focus on mentally preparing herself for her hysterectomy right now. (When I had my surgery in October 2008, I had no idea I'd have to have chemo a month later. Sometimes ignorance is bliss! But I will tell you that I did a lot of research into UPSC prior to my surgery and was prepared to FIGHT to get chemo if it wasn't recommended, even if I was Stage 1. But, as it turned out, chemo and radiation were both recommended for me.)

    The treatment recommendation usually is made at your first post-surgery check-up with your surgeon, who would refer your mother to oncologists that specialize in chemo or radiation to help you make decisions on additional treatment if needed. ((((Cookie / Linda))))
  • cookie1948
    cookie1948 Member Posts: 77

    (((Cookie))) probably not what you are hoping to hear...
    First, has your mother's cancer definitely been identified as Uterine Papillary Serous Carcinoma? If your mother has the more common type of uterine cancer that accounts for 90% of all uterine cancers, then most of this does NOT apply to your mother. But if she has UPSC, then what I tell you comes from my heart, and I tell this to you with deep compassion because I know it is not what you are hoping to hear. Uterine Papillary Serous Carcinoma is such an aggressive cancer. You will want to encourage your mother, if she has the physical strength, to be open-minded to having chemo and radiation if recommended. Recurrence rates for UPSC are VERY high for those who don't push on and get the chemo and rads.

    You ask if the UPSC Sisters posting in this thread are dealing with a recurrence. No. All but 1 of the UPSC Sisters posting here went right from having their hysterectomy into either chemo or radiation treatment 4 or 5 weeks following their surgery.

    Your mother's cancer won't really be definitively 'staged' until she has her hysterectomy. Please make sure that she is also having lymph nodes removed along with the hysterectomy as this is critical to having her cancer properly staged. Her surgery needs to be done by a gynecologic oncologist, not just a gynecologist. Staging defines what additional treatment will be needed. If the tissue analysis following your mother's surgery shows her to be Stage 1, she may be spared the chemo and radiation. But if her surgery pathology shows that she is Stage II, III, or IV, you should prepare yourself for a recommendation by your oncologist for additional treatments for your mother like chemo and radiation.

    Whether you feel you should forewarn your mother is your decision. She may need to just focus on mentally preparing herself for her hysterectomy right now. (When I had my surgery in October 2008, I had no idea I'd have to have chemo a month later. Sometimes ignorance is bliss! But I will tell you that I did a lot of research into UPSC prior to my surgery and was prepared to FIGHT to get chemo if it wasn't recommended, even if I was Stage 1. But, as it turned out, chemo and radiation were both recommended for me.)

    The treatment recommendation usually is made at your first post-surgery check-up with your surgeon, who would refer your mother to oncologists that specialize in chemo or radiation to help you make decisions on additional treatment if needed. ((((Cookie / Linda))))

    thanks
    Hi Linda,
    Thanks so much for the info, you're right it's not what i wanted to hear, but the gynecologist/oncologist just mentioned uterine serous carcinoma. so i just don't know, i did not hear the word papillary. I will find out more soon i hope.
  • cookie1948
    cookie1948 Member Posts: 77

    (((Cookie))) probably not what you are hoping to hear...
    First, has your mother's cancer definitely been identified as Uterine Papillary Serous Carcinoma? If your mother has the more common type of uterine cancer that accounts for 90% of all uterine cancers, then most of this does NOT apply to your mother. But if she has UPSC, then what I tell you comes from my heart, and I tell this to you with deep compassion because I know it is not what you are hoping to hear. Uterine Papillary Serous Carcinoma is such an aggressive cancer. You will want to encourage your mother, if she has the physical strength, to be open-minded to having chemo and radiation if recommended. Recurrence rates for UPSC are VERY high for those who don't push on and get the chemo and rads.

    You ask if the UPSC Sisters posting in this thread are dealing with a recurrence. No. All but 1 of the UPSC Sisters posting here went right from having their hysterectomy into either chemo or radiation treatment 4 or 5 weeks following their surgery.

    Your mother's cancer won't really be definitively 'staged' until she has her hysterectomy. Please make sure that she is also having lymph nodes removed along with the hysterectomy as this is critical to having her cancer properly staged. Her surgery needs to be done by a gynecologic oncologist, not just a gynecologist. Staging defines what additional treatment will be needed. If the tissue analysis following your mother's surgery shows her to be Stage 1, she may be spared the chemo and radiation. But if her surgery pathology shows that she is Stage II, III, or IV, you should prepare yourself for a recommendation by your oncologist for additional treatments for your mother like chemo and radiation.

    Whether you feel you should forewarn your mother is your decision. She may need to just focus on mentally preparing herself for her hysterectomy right now. (When I had my surgery in October 2008, I had no idea I'd have to have chemo a month later. Sometimes ignorance is bliss! But I will tell you that I did a lot of research into UPSC prior to my surgery and was prepared to FIGHT to get chemo if it wasn't recommended, even if I was Stage 1. But, as it turned out, chemo and radiation were both recommended for me.)

    The treatment recommendation usually is made at your first post-surgery check-up with your surgeon, who would refer your mother to oncologists that specialize in chemo or radiation to help you make decisions on additional treatment if needed. ((((Cookie / Linda))))

    ca125
    Hi again Linda
    I just found out my mom's ca125 is 15.1 which i was told is normal range, so maybe she does not have ovarian cancer also? we'll see, i hope for the best for my mom and ALL OF YOU.
    Linda (cookie)
  • cookie1948
    cookie1948 Member Posts: 77

    (((Cookie))) probably not what you are hoping to hear...
    First, has your mother's cancer definitely been identified as Uterine Papillary Serous Carcinoma? If your mother has the more common type of uterine cancer that accounts for 90% of all uterine cancers, then most of this does NOT apply to your mother. But if she has UPSC, then what I tell you comes from my heart, and I tell this to you with deep compassion because I know it is not what you are hoping to hear. Uterine Papillary Serous Carcinoma is such an aggressive cancer. You will want to encourage your mother, if she has the physical strength, to be open-minded to having chemo and radiation if recommended. Recurrence rates for UPSC are VERY high for those who don't push on and get the chemo and rads.

    You ask if the UPSC Sisters posting in this thread are dealing with a recurrence. No. All but 1 of the UPSC Sisters posting here went right from having their hysterectomy into either chemo or radiation treatment 4 or 5 weeks following their surgery.

    Your mother's cancer won't really be definitively 'staged' until she has her hysterectomy. Please make sure that she is also having lymph nodes removed along with the hysterectomy as this is critical to having her cancer properly staged. Her surgery needs to be done by a gynecologic oncologist, not just a gynecologist. Staging defines what additional treatment will be needed. If the tissue analysis following your mother's surgery shows her to be Stage 1, she may be spared the chemo and radiation. But if her surgery pathology shows that she is Stage II, III, or IV, you should prepare yourself for a recommendation by your oncologist for additional treatments for your mother like chemo and radiation.

    Whether you feel you should forewarn your mother is your decision. She may need to just focus on mentally preparing herself for her hysterectomy right now. (When I had my surgery in October 2008, I had no idea I'd have to have chemo a month later. Sometimes ignorance is bliss! But I will tell you that I did a lot of research into UPSC prior to my surgery and was prepared to FIGHT to get chemo if it wasn't recommended, even if I was Stage 1. But, as it turned out, chemo and radiation were both recommended for me.)

    The treatment recommendation usually is made at your first post-surgery check-up with your surgeon, who would refer your mother to oncologists that specialize in chemo or radiation to help you make decisions on additional treatment if needed. ((((Cookie / Linda))))

    uterine serous carcinoma
    I am sure this is the disease my mom has, as the oncologist said it was aggressive. Thanks for all of your info.
    Linda
  • Kris Ann
    Kris Ann Member Posts: 26

    (((Cookie))) probably not what you are hoping to hear...
    First, has your mother's cancer definitely been identified as Uterine Papillary Serous Carcinoma? If your mother has the more common type of uterine cancer that accounts for 90% of all uterine cancers, then most of this does NOT apply to your mother. But if she has UPSC, then what I tell you comes from my heart, and I tell this to you with deep compassion because I know it is not what you are hoping to hear. Uterine Papillary Serous Carcinoma is such an aggressive cancer. You will want to encourage your mother, if she has the physical strength, to be open-minded to having chemo and radiation if recommended. Recurrence rates for UPSC are VERY high for those who don't push on and get the chemo and rads.

    You ask if the UPSC Sisters posting in this thread are dealing with a recurrence. No. All but 1 of the UPSC Sisters posting here went right from having their hysterectomy into either chemo or radiation treatment 4 or 5 weeks following their surgery.

    Your mother's cancer won't really be definitively 'staged' until she has her hysterectomy. Please make sure that she is also having lymph nodes removed along with the hysterectomy as this is critical to having her cancer properly staged. Her surgery needs to be done by a gynecologic oncologist, not just a gynecologist. Staging defines what additional treatment will be needed. If the tissue analysis following your mother's surgery shows her to be Stage 1, she may be spared the chemo and radiation. But if her surgery pathology shows that she is Stage II, III, or IV, you should prepare yourself for a recommendation by your oncologist for additional treatments for your mother like chemo and radiation.

    Whether you feel you should forewarn your mother is your decision. She may need to just focus on mentally preparing herself for her hysterectomy right now. (When I had my surgery in October 2008, I had no idea I'd have to have chemo a month later. Sometimes ignorance is bliss! But I will tell you that I did a lot of research into UPSC prior to my surgery and was prepared to FIGHT to get chemo if it wasn't recommended, even if I was Stage 1. But, as it turned out, chemo and radiation were both recommended for me.)

    The treatment recommendation usually is made at your first post-surgery check-up with your surgeon, who would refer your mother to oncologists that specialize in chemo or radiation to help you make decisions on additional treatment if needed. ((((Cookie / Linda))))

    Hi Ladies, I have a couple
    Hi Ladies, I have a couple of questions..

    First of all I finally told my mother Judy that I joined this website and that I correspond with you all.. she was glad. She just can't do it herself in her mind the less she knows the better..

    She is all done treatment and is getting a check up on Feb.25. During radiation she dropped a lot of weight she became very very thin, she was thin to begin with. She had whole abdominal radiation as well as 4 rounds of brachy.. so my questions are did anyone lose a lot of weight from the radiation? And also she still has diarhea sometimes and stomach twinges alot.. has anyone experienced anything like this from radiation? She wanted me to ask you all..

    Thanks, kris Ann
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Kris Ann said:

    Hi Ladies, I have a couple
    Hi Ladies, I have a couple of questions..

    First of all I finally told my mother Judy that I joined this website and that I correspond with you all.. she was glad. She just can't do it herself in her mind the less she knows the better..

    She is all done treatment and is getting a check up on Feb.25. During radiation she dropped a lot of weight she became very very thin, she was thin to begin with. She had whole abdominal radiation as well as 4 rounds of brachy.. so my questions are did anyone lose a lot of weight from the radiation? And also she still has diarhea sometimes and stomach twinges alot.. has anyone experienced anything like this from radiation? She wanted me to ask you all..

    Thanks, kris Ann

    I haven't had radiation yet, but was told to keep my weight up.
    Hi, Kris Ann! Peggy, Deanna, and Marge (and maybe some of the others) may be able to answer you better, as they have had their radiation already. But I don't think any of them had full abdominal radiation like your mother (instead they had pelvic radiation, which is similar but not as hard on the intestines). But I was warned, and am repeatedly reminded, throughout my chemo, that I cannot afford to lose any weight now as they anticipate a fairly significant weight loss and diarhea when I get my radiation. Oncologists worry about radiation for thin people. (I am 5'7" tall and weighed 125 lbs. when I started chemo.) I have ALWAYS watched what I eat, and went to the gym daily before I got cancer, and now that everyone encourages me to eat, eat, eat, I guess I've taken it to heart! I've gained 13 pounds in the past 6 months. (YES: 13 POUNDS!!) Now watch, I won't lose an ounce with the radiation and have to diet after my treatment is over.

    Can your mother drink the high-calorie Boost or Ensure? I know people getting radiation that drank 4 or 5 cans/bottles daily to try and keep their weight up.
  • Ro10
    Ro10 Member Posts: 1,561

    serous carcinoma
    Hello,
    I have been reading online on the discussion boards. I have never heard of all of these treatments people are mentioning. My mom is 85 and having total hysterectomy in the next 2 weeks due to the serous carcinoma. I was told that if it is contained there and depending on what stage it is she won't need chemo, besides my mom does not want chemo. She is in good health otherwise and is pretty strong for an 85 yr old woman. Is everyone having extensive chemo and internal radiation because this uterine disease had spread or a different diagnosis?
    thanks so much.
    Linda aka Cookie

    Not what you want to hear Cookie
    I was told by my gyne and the OB/ONOC that because I had no symptoms, and a pap test caught the suspicious for adenocarcinoma cells a hysterectomy would probably take care of the problem. When I had the hysterectomy my tumor was so small 1.5cm by 1cm and it only invaded 50% of the uterus lining, but it had spread to 5 of 20 lymph nodes and I had metastic cells in my abdominal washing. So until they do the surgery, they really don't know what stage the cancer is in. They need to check the lymph nodes, to for spread.
    Because serous cancer is so aggressive is why the chemo and radiation are recommended. They want to kill any microscopic cancer that may still be there. The chemo goes through the blood stream and goes through out the body. The radiation focuses on the area where the cancer cells may remain.
    When my ONOC first explained my treatment plan he mentioned pelvic radiation for 5 -6 weeks. When I went after my first chemo treatment, I asked if internal radiation would be done also, after reading so many USPC sisters have had or are having internal radiation also. He said that is up to the radiation onocologist. So I won't know until I meet with him what I will have.
    I too am having the sandwich treatment of 3 chemo treatments, then radiation treatments, and then 3 chemo treatments. There will be a 3 -4 week rest period between each session of treatments, so it will be a long process. I had my surgery January 5th and my first chemo treatment January 29. I too am in good health with only high cholesterol. So it is so hard to understand how I have such a serious disease. I feel so good.
  • cookie1948
    cookie1948 Member Posts: 77
    Ro10 said:

    Not what you want to hear Cookie
    I was told by my gyne and the OB/ONOC that because I had no symptoms, and a pap test caught the suspicious for adenocarcinoma cells a hysterectomy would probably take care of the problem. When I had the hysterectomy my tumor was so small 1.5cm by 1cm and it only invaded 50% of the uterus lining, but it had spread to 5 of 20 lymph nodes and I had metastic cells in my abdominal washing. So until they do the surgery, they really don't know what stage the cancer is in. They need to check the lymph nodes, to for spread.
    Because serous cancer is so aggressive is why the chemo and radiation are recommended. They want to kill any microscopic cancer that may still be there. The chemo goes through the blood stream and goes through out the body. The radiation focuses on the area where the cancer cells may remain.
    When my ONOC first explained my treatment plan he mentioned pelvic radiation for 5 -6 weeks. When I went after my first chemo treatment, I asked if internal radiation would be done also, after reading so many USPC sisters have had or are having internal radiation also. He said that is up to the radiation onocologist. So I won't know until I meet with him what I will have.
    I too am having the sandwich treatment of 3 chemo treatments, then radiation treatments, and then 3 chemo treatments. There will be a 3 -4 week rest period between each session of treatments, so it will be a long process. I had my surgery January 5th and my first chemo treatment January 29. I too am in good health with only high cholesterol. So it is so hard to understand how I have such a serious disease. I feel so good.

    Thanks RO10
    Hi there,
    Thanks for the info but u are right, not what i wanted to hear. mom is 85 but i am scared for her. I know she doesn't want chemo, but we'll see. I still can't believe she has this aggressive cancer, none in the family at all, but i guess the other gals are right, cancer knows no age and has no boundaries. Did you also have the CA125 test? RO10? hers was 15.1 and i was told 0-35 is normal. I hope to God they check the lymph nodes and will bring that up next week when i take her to her appt to schedule hysterectomy. As i have said before, i haven't heard of too many women this age in her eighties to get this type of cancer, but then who knows how long it's been there.
    Again, thank you all for the info. I wish you all the best and i do have one more question, as dumb as it may seem being that i'm new here. What does NED stand for?
    Linda aka Cookie
    God Bless...........................
  • cookie1948
    cookie1948 Member Posts: 77
    Ro10 said:

    Not what you want to hear Cookie
    I was told by my gyne and the OB/ONOC that because I had no symptoms, and a pap test caught the suspicious for adenocarcinoma cells a hysterectomy would probably take care of the problem. When I had the hysterectomy my tumor was so small 1.5cm by 1cm and it only invaded 50% of the uterus lining, but it had spread to 5 of 20 lymph nodes and I had metastic cells in my abdominal washing. So until they do the surgery, they really don't know what stage the cancer is in. They need to check the lymph nodes, to for spread.
    Because serous cancer is so aggressive is why the chemo and radiation are recommended. They want to kill any microscopic cancer that may still be there. The chemo goes through the blood stream and goes through out the body. The radiation focuses on the area where the cancer cells may remain.
    When my ONOC first explained my treatment plan he mentioned pelvic radiation for 5 -6 weeks. When I went after my first chemo treatment, I asked if internal radiation would be done also, after reading so many USPC sisters have had or are having internal radiation also. He said that is up to the radiation onocologist. So I won't know until I meet with him what I will have.
    I too am having the sandwich treatment of 3 chemo treatments, then radiation treatments, and then 3 chemo treatments. There will be a 3 -4 week rest period between each session of treatments, so it will be a long process. I had my surgery January 5th and my first chemo treatment January 29. I too am in good health with only high cholesterol. So it is so hard to understand how I have such a serious disease. I feel so good.

    hello again RO 10
    How was the hysterectomy itself Ro10? May i ask how old you are? I bet you have a great chance of being disease free with your attitude and how you feel health wise in general. I just don't know how much my mom would be able to take at this point. I think she's already a little discouraged as she had no idea any of this was going on til she had some spotting for a week and then had 2 biopsies and scraping. no sign of cervical cancer but the endometrial lining and uterus showed the cancer. I think she is slowly getting over the surprise of this.
    I thank you again and hope i get posted on how you are feeling.
    God Bless you and i wish you all the best. Prayers go out to all of you..............:)
  • cookie1948
    cookie1948 Member Posts: 77

    hello again RO 10
    How was the hysterectomy itself Ro10? May i ask how old you are? I bet you have a great chance of being disease free with your attitude and how you feel health wise in general. I just don't know how much my mom would be able to take at this point. I think she's already a little discouraged as she had no idea any of this was going on til she had some spotting for a week and then had 2 biopsies and scraping. no sign of cervical cancer but the endometrial lining and uterus showed the cancer. I think she is slowly getting over the surprise of this.
    I thank you again and hope i get posted on how you are feeling.
    God Bless you and i wish you all the best. Prayers go out to all of you..............:)

    metastic cells
    abdominal washing? Is that what they do during the hysterectomy to find cancer cells? I am not fully understanding all of this as yet. What actually does metastic cells mean? And what is an abdominal washing?
    thanks again.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    metastic cells
    abdominal washing? Is that what they do during the hysterectomy to find cancer cells? I am not fully understanding all of this as yet. What actually does metastic cells mean? And what is an abdominal washing?
    thanks again.

    To answer a couple of your questions, Cookie.
    You asked about NED. That is short for 'No Evidence of Disease', and is the determination we all hope and pray to get with every CT-scan (which your mother will probably have every 3 months for at least the next 2 years). If you have a NED CT-scan (which we lovingly call "dancing with NED") and a CA-125 of less than 35, although you may still be getting chemo and radiation, you are technically in remission. Most of the UPSC Sisters posting here currently are dancing with NED, and have CA-125's under 35, and yet we push on with our treatments as long as we can in the hopes of killing off any hiding cancer cells. Then, after your scheduled chemo/radiation treatment is completed, every 3 months you go for updated CA-125 bloodwork and a CT-Scan and hold your breath until you know that you still have NED and that your CA-125 is not rising. Because if your CA-125 rises and/or your CT-scan shows a shadow or small tumor, it could be time to go back into treatment as you may have a recurrance.

    You asked about abdominal washings. During your mother's hysterectomy, they will actually irrigate the cavity left from the removal of her uterus with some type of fluid, and then suction off and test that liquid for any traces of cancer cells. This serves a dual purpose; it is a part of the 'debulking' where every effort is being made during surgery to remove every single cancer cell, and it is also a diagnostic tool. Because when cancer cells are found in the 'washings', it can be an indicator that the tumor or polyp is exfoliating cells and that microscopic cells may be on the move in your body. I think that when cancer cells are found in the washings that radiation in that area is usually prescribed.

    I also wanted to share with you that my cancer was also found during a routine annual PAP test. I didn't even have any spotting, NOTHING, absolutely no symptoms, seemingly healthy as a horse. I was told uterine cancer is never found during a Pap test, and yet several of the UPSC Sisters first found their cancer that way. From what I've read, this type of rare uterine cancer seems prone to exfoliating cells (which is why one of the wandering uterine cancer cells can show up down there to be picked up by a PAP test, and why your mother may have cancer cells in her abdominal washing. I did. You find this out after they do the pathology on the tissue they remove during the surgery. Although my gynecologist and gynecologic oncologist were both so sure we had caught this super-early, (because I had no symptoms), one of the 20 lymph nodes they removed had microscopic traces of the cancer cells, and so I was diagnosed as Stage III-c. Chemo works to kill the microscopic cancer cells that may be traveling and hiding anywhere in your body. With radiation they go after the most likely place they may be hiding.

    If the pathology from your mother's hysterectomy shows any indication that her cancer may be on the move, a normal CA-125 and NED CT-scan shouldn't stop her from having the chemo and radiation as a precaution. You want to be informed, so that you can help your mother makes good decisions, but please don't look too far ahead in the process. The hysterectomy is the hardest part, so for now, focus on getting your mother through that. When the pathology report comes back from her surgery, request a copy as you will need that to help you decide what to do. Your oncologist will go over the pathology and make his recommendations. We'll all be here to help you sort it out. BIG HUGS. Try not to worry about all that yet. 1 step at a time.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    To answer a couple of your questions, Cookie.
    You asked about NED. That is short for 'No Evidence of Disease', and is the determination we all hope and pray to get with every CT-scan (which your mother will probably have every 3 months for at least the next 2 years). If you have a NED CT-scan (which we lovingly call "dancing with NED") and a CA-125 of less than 35, although you may still be getting chemo and radiation, you are technically in remission. Most of the UPSC Sisters posting here currently are dancing with NED, and have CA-125's under 35, and yet we push on with our treatments as long as we can in the hopes of killing off any hiding cancer cells. Then, after your scheduled chemo/radiation treatment is completed, every 3 months you go for updated CA-125 bloodwork and a CT-Scan and hold your breath until you know that you still have NED and that your CA-125 is not rising. Because if your CA-125 rises and/or your CT-scan shows a shadow or small tumor, it could be time to go back into treatment as you may have a recurrance.

    You asked about abdominal washings. During your mother's hysterectomy, they will actually irrigate the cavity left from the removal of her uterus with some type of fluid, and then suction off and test that liquid for any traces of cancer cells. This serves a dual purpose; it is a part of the 'debulking' where every effort is being made during surgery to remove every single cancer cell, and it is also a diagnostic tool. Because when cancer cells are found in the 'washings', it can be an indicator that the tumor or polyp is exfoliating cells and that microscopic cells may be on the move in your body. I think that when cancer cells are found in the washings that radiation in that area is usually prescribed.

    I also wanted to share with you that my cancer was also found during a routine annual PAP test. I didn't even have any spotting, NOTHING, absolutely no symptoms, seemingly healthy as a horse. I was told uterine cancer is never found during a Pap test, and yet several of the UPSC Sisters first found their cancer that way. From what I've read, this type of rare uterine cancer seems prone to exfoliating cells (which is why one of the wandering uterine cancer cells can show up down there to be picked up by a PAP test, and why your mother may have cancer cells in her abdominal washing. I did. You find this out after they do the pathology on the tissue they remove during the surgery. Although my gynecologist and gynecologic oncologist were both so sure we had caught this super-early, (because I had no symptoms), one of the 20 lymph nodes they removed had microscopic traces of the cancer cells, and so I was diagnosed as Stage III-c. Chemo works to kill the microscopic cancer cells that may be traveling and hiding anywhere in your body. With radiation they go after the most likely place they may be hiding.

    If the pathology from your mother's hysterectomy shows any indication that her cancer may be on the move, a normal CA-125 and NED CT-scan shouldn't stop her from having the chemo and radiation as a precaution. You want to be informed, so that you can help your mother makes good decisions, but please don't look too far ahead in the process. The hysterectomy is the hardest part, so for now, focus on getting your mother through that. When the pathology report comes back from her surgery, request a copy as you will need that to help you decide what to do. Your oncologist will go over the pathology and make his recommendations. We'll all be here to help you sort it out. BIG HUGS. Try not to worry about all that yet. 1 step at a time.

    Missed 1 of your questions; sorry.
    You asked about metastic cells: these are cancer cells that are on the move. When someone posts that they have 'mets to the lungs', they mean that their existing cancer has travelled to a remote place in their body (in this example the cancer has metasticized in the lungs) and now you have a new cancer to deal with. No matter where a uterine cancer metasticizes (lungs, brain, vaginal cuff, peritoneal cavity, etc.) and starts to grow, it is considered a recurrance of uterine cancer, but just in another body part.

    It's like learning a new language, isn't it? I never knew what any of this stuff really meant 6 months ago either. You'll be amazed how much you'll learn during this journey with your mother.
  • cookie1948
    cookie1948 Member Posts: 77

    To answer a couple of your questions, Cookie.
    You asked about NED. That is short for 'No Evidence of Disease', and is the determination we all hope and pray to get with every CT-scan (which your mother will probably have every 3 months for at least the next 2 years). If you have a NED CT-scan (which we lovingly call "dancing with NED") and a CA-125 of less than 35, although you may still be getting chemo and radiation, you are technically in remission. Most of the UPSC Sisters posting here currently are dancing with NED, and have CA-125's under 35, and yet we push on with our treatments as long as we can in the hopes of killing off any hiding cancer cells. Then, after your scheduled chemo/radiation treatment is completed, every 3 months you go for updated CA-125 bloodwork and a CT-Scan and hold your breath until you know that you still have NED and that your CA-125 is not rising. Because if your CA-125 rises and/or your CT-scan shows a shadow or small tumor, it could be time to go back into treatment as you may have a recurrance.

    You asked about abdominal washings. During your mother's hysterectomy, they will actually irrigate the cavity left from the removal of her uterus with some type of fluid, and then suction off and test that liquid for any traces of cancer cells. This serves a dual purpose; it is a part of the 'debulking' where every effort is being made during surgery to remove every single cancer cell, and it is also a diagnostic tool. Because when cancer cells are found in the 'washings', it can be an indicator that the tumor or polyp is exfoliating cells and that microscopic cells may be on the move in your body. I think that when cancer cells are found in the washings that radiation in that area is usually prescribed.

    I also wanted to share with you that my cancer was also found during a routine annual PAP test. I didn't even have any spotting, NOTHING, absolutely no symptoms, seemingly healthy as a horse. I was told uterine cancer is never found during a Pap test, and yet several of the UPSC Sisters first found their cancer that way. From what I've read, this type of rare uterine cancer seems prone to exfoliating cells (which is why one of the wandering uterine cancer cells can show up down there to be picked up by a PAP test, and why your mother may have cancer cells in her abdominal washing. I did. You find this out after they do the pathology on the tissue they remove during the surgery. Although my gynecologist and gynecologic oncologist were both so sure we had caught this super-early, (because I had no symptoms), one of the 20 lymph nodes they removed had microscopic traces of the cancer cells, and so I was diagnosed as Stage III-c. Chemo works to kill the microscopic cancer cells that may be traveling and hiding anywhere in your body. With radiation they go after the most likely place they may be hiding.

    If the pathology from your mother's hysterectomy shows any indication that her cancer may be on the move, a normal CA-125 and NED CT-scan shouldn't stop her from having the chemo and radiation as a precaution. You want to be informed, so that you can help your mother makes good decisions, but please don't look too far ahead in the process. The hysterectomy is the hardest part, so for now, focus on getting your mother through that. When the pathology report comes back from her surgery, request a copy as you will need that to help you decide what to do. Your oncologist will go over the pathology and make his recommendations. We'll all be here to help you sort it out. BIG HUGS. Try not to worry about all that yet. 1 step at a time.

    thanks
    Linda,
    Thanks again so much for all of the explanations of terms and things i am asking about. As my tears roll down in being scared for my mom and gratefulness to you and everyone for being so patient with me for all of my questions. I am soooooooooo hopeful for you and everyone else, because no one deserves cancer!! And you all are doing so much good for everyone concerned. I guess i kept thinking and hoping it has not spread. My mom at 85 enjoys life and wants to live no matter what, but she is very scared. Her ca125 was 15.1 last week, so at least that was not elevated. I know we are not home-free, but i thought about what you said about just getting her through the hysterectomy. I hope they don't wait too long. I take her Monday morning to see if they will clear her for surgery and then with oncologist for pre op. I hope it's soon, altho like she said, it's hard to feel good now and then knows she will be uncomfortable after the surgery.
    I thank you from the bottom of my heart. May God Bless you, keep you well SOON and forever. NED forever. I GET IT NOW. lol
    Linda aka Cookie
  • Ro10
    Ro10 Member Posts: 1,561
    Cookie to answer your questions
    I am 60 years old. I too had an abnormal pap test with no symptoms, just like Linda. They felt they had caught the cancer early. On January 5 I had a robotic hysterectomy with removal of tubes, ovaries, 20 lymph nodes and an omental biopsy. My surgery was 6 hours long due to previous scar tissue from previous c-sections. I recovered very well from the surgery. Becuase of the type of surgery I had, I could get my first chemo treatmetn on january 29. I just had my first CA125 before my second chemo. I was quite discouraged as it was 435. The doctor said it would be elevated from the surgery, but I don't think it should be that elevated. So that does scare me. I can only pray that it will drop with the treatments. I can understand how you are frightened for your Mother, just as she is frightened herself. It is a scary disease.
    I pray for you as you make your decisions. I think Linda answered most of your other questions. She answers everythins so well, she is very well informed. She is a real asset to this discussion board. Thanks Linda. Cookie if we can answer anything else for you just ask. Hugs to all.
  • Evelyn G
    Evelyn G Member Posts: 21

    I haven't had radiation yet, but was told to keep my weight up.
    Hi, Kris Ann! Peggy, Deanna, and Marge (and maybe some of the others) may be able to answer you better, as they have had their radiation already. But I don't think any of them had full abdominal radiation like your mother (instead they had pelvic radiation, which is similar but not as hard on the intestines). But I was warned, and am repeatedly reminded, throughout my chemo, that I cannot afford to lose any weight now as they anticipate a fairly significant weight loss and diarhea when I get my radiation. Oncologists worry about radiation for thin people. (I am 5'7" tall and weighed 125 lbs. when I started chemo.) I have ALWAYS watched what I eat, and went to the gym daily before I got cancer, and now that everyone encourages me to eat, eat, eat, I guess I've taken it to heart! I've gained 13 pounds in the past 6 months. (YES: 13 POUNDS!!) Now watch, I won't lose an ounce with the radiation and have to diet after my treatment is over.

    Can your mother drink the high-calorie Boost or Ensure? I know people getting radiation that drank 4 or 5 cans/bottles daily to try and keep their weight up.

    high dose rate bracytherapy
    Hello. I'm new to this site and I sure could use some advice.

    On November 19 I had a total hysterectomy. Turned out to be liomyosarcoma, stage 1C. During the surgery, which started out to be robotic, the doctor nicked the fibroid and it oozed. She used a spoon, bagged it and converted to a standard hysterectomy. Since there could possibly be microscopic cells, I started chemo around Christmas. After only three of six rounds, I had to discontinue treatment because of extreme toxicity. The last chemo was Feb. 9 and I'm just now starting to feel better. (No washings were done and I was told the lymph nodes were clear, although they were not tested. I supposedly had the two best doctors in the area.)

    My gyn. oncologist said radiation would not be beneficial. I consulted with two other doctors. One wanted to do six weeks, five days of external radiation. Another suggested HDR bracytherapy. That would be three once-a-week treatments.

    Anyone have any input?