recently diagnosed

mdad85
mdad85 Member Posts: 15
edited March 2014 in Uterine/Endometrial Cancer #1
My wife was recently diagnosed with endometrail cancer (uterine) stage 4b, Dr just performed a massive surgery on her and removed Cancer and all her female parts including Lymp nodes, she has been told it comes back 80 % of the time, Dr says National average is 15 to 18 mths survival. They want her to start Chemo. She is Scared and I must admit I'm scared for her. My sister is now going thru treatment for Lung Cancer and has had 4 sessions of chemo and said she's done with it, Hates being sick for days afterward.
Guess what i'm asking is what if she doesn't take the chemo, What normally happens?

Thanks
Jim

Comments

  • Cindy Bear
    Cindy Bear Member Posts: 569
    #2
    Similar diagnosis
    Hi Jim. I've been lurking around the boards for months now. I don't post very often but wanted to reply. My mother passed away June 2009 and I'm angry, bitter, shocked and cynical. Which is why I don't post too often, I don't want to upset the wonderful, brave women (and caretakers) posting on this board. My mother had Stage IVB endometrial adenocarcinoma.Grade 2. After biopsy and ultrasound, she had a cat then pet scan. Keep in mind she was 78 at diagnosis and 79 when she passed. I am sure your wife is much younger. They told us she was not a candidate for surgery then. You do realize that with Stage IV, cancer has spread to distand lymphy nodes and/or organs and surgery won't remove it all. They used the 15 mos. stat.. 15 mos. with Recurrence is what they said. She was gone 4 months into treatment. Taxol/Carboplatin. She made it through the first 3 rounds okay.. They did another cat, said it was "basically good" wanted to do 2 more rounds and then another cat, then look at doing surgery Then the bottom dropped out. She had heavy bleeding during the 4th round and needed blood tranfusion. They said they would keep her on chemo because "she was doing so well." She started the fifth round on a Monday and was dead on Fri. After the fact, her doctor (a big name at a nationally renowned hospital) told me that 10% of patients with her type/stage of cancer will be cured. Yes he used the word cured. She thought she was getting the best but mostly was treated by CNP and chemo nurses. He was overbooked and spent very little time with her as an individual. They told us at time of diagnosis her liver was fine (there was a couple of Lesions on liver) after she passed they said well the lesions shrunk. Anything that "Shrinks" during chemo is deemed malignancy. Also, on the Pet scan, the SUV = standard uptake volume, measures how much the spots light up. Apparently cancer cells are gluttons and will intake alot more of the radioactive substance. Any reading higher than 2.7 is malignancy. The doctor even went so far as to imitate little geiger counter noises. How cute. Did you wife have a pet scan? I wish I could offer words of wisdom or comfort but I can't . Yes these cancers (uterine and ovarian have a high rate of recurrence) I think Claudia's advice is excellent. Read, research, get a second opinion. I didnt' want my mother to have chemo, but family and friends said, "Oh that's great, that's treatment" My mother wasn't open to alternative medicines or to not doing anything, just letting nature take it's course. We naively thought that if the chemo wasn't working the weekly blood work would tell us that. But her CA-125 was always low, 21, 24, 25 all the while the cancer had stopped responding to chemo. We were also told after the fact, that blood work isn't a good indicator of how well chemo is working. I wish you and your wife the best and I will keep you in my thoughts and prayers. Maybe she'll be one of the 10% that is cured.. I think (MaryAnn? ) said it best. It's a crap shoot. If the doctors are being honest, they'll tell you that.
  • california_artist
    california_artist Member Posts: 816 Member
    #3
    I know how you must be scrambling for answers and anything
    you might be able to do. I have just been discussing on another thread the value of a book called Anti Cancer A New Way of Life. In it, if both you and your wife choose to read it, and is not that hard to read nor too long, I think regardless of the route you choose to go, are many things you can do starting today to help your wife's body fight the cancer. The author talks about the median curve and how there is a long tail to it, and suggests that since someone can be out there, why not him or in this case your wife. That is why he did all the research he did when he discovered he had a very aggressive brain cancer and was told he would only live for the same amount of time as your wife has been given. He is a doctor, is not selling anything, just suggesting not only the how's but the why's of living longer.

    I wish you would read it, although reading may seem like an odd thing to do when you must feel as though you should be running around and doing something, rather than sitting still. surprisingly, your wife might begin to feel more hopeful right away, and isn't that what it's all about in the end, hope.

    Heart felt wishes to you and your wife. Please put her name in your next post, we will be thinking healing thoughts for her recovery.

    Love to a fellow traveler,

    Claudia
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • mdad85
    mdad85 Member Posts: 15
    #5
    Cindy Bear said:

    Similar diagnosis
    Hi Jim. I've been lurking around the boards for months now. I don't post very often but wanted to reply. My mother passed away June 2009 and I'm angry, bitter, shocked and cynical. Which is why I don't post too often, I don't want to upset the wonderful, brave women (and caretakers) posting on this board. My mother had Stage IVB endometrial adenocarcinoma.Grade 2. After biopsy and ultrasound, she had a cat then pet scan. Keep in mind she was 78 at diagnosis and 79 when she passed. I am sure your wife is much younger. They told us she was not a candidate for surgery then. You do realize that with Stage IV, cancer has spread to distand lymphy nodes and/or organs and surgery won't remove it all. They used the 15 mos. stat.. 15 mos. with Recurrence is what they said. She was gone 4 months into treatment. Taxol/Carboplatin. She made it through the first 3 rounds okay.. They did another cat, said it was "basically good" wanted to do 2 more rounds and then another cat, then look at doing surgery Then the bottom dropped out. She had heavy bleeding during the 4th round and needed blood tranfusion. They said they would keep her on chemo because "she was doing so well." She started the fifth round on a Monday and was dead on Fri. After the fact, her doctor (a big name at a nationally renowned hospital) told me that 10% of patients with her type/stage of cancer will be cured. Yes he used the word cured. She thought she was getting the best but mostly was treated by CNP and chemo nurses. He was overbooked and spent very little time with her as an individual. They told us at time of diagnosis her liver was fine (there was a couple of Lesions on liver) after she passed they said well the lesions shrunk. Anything that "Shrinks" during chemo is deemed malignancy. Also, on the Pet scan, the SUV = standard uptake volume, measures how much the spots light up. Apparently cancer cells are gluttons and will intake alot more of the radioactive substance. Any reading higher than 2.7 is malignancy. The doctor even went so far as to imitate little geiger counter noises. How cute. Did you wife have a pet scan? I wish I could offer words of wisdom or comfort but I can't . Yes these cancers (uterine and ovarian have a high rate of recurrence) I think Claudia's advice is excellent. Read, research, get a second opinion. I didnt' want my mother to have chemo, but family and friends said, "Oh that's great, that's treatment" My mother wasn't open to alternative medicines or to not doing anything, just letting nature take it's course. We naively thought that if the chemo wasn't working the weekly blood work would tell us that. But her CA-125 was always low, 21, 24, 25 all the while the cancer had stopped responding to chemo. We were also told after the fact, that blood work isn't a good indicator of how well chemo is working. I wish you and your wife the best and I will keep you in my thoughts and prayers. Maybe she'll be one of the 10% that is cured.. I think (MaryAnn? ) said it best. It's a crap shoot. If the doctors are being honest, they'll tell you that.

    update
    Thanks to all that have responded, We go in Wednesday to meet with an Education Guy before starting chemo next week, She has been talking with my sister and comparing problems and I know she dont know what to do and of course I don't know what to tell her. So i've just told her whatever she decides I will stand behind her decision.She's scared and Mad as I am, but she has surprised me, told me she has had a good life and has gotten to see her kids grow up and see her grandkids, so she s happy.She's only 60 I ve told her that is not old by todays standards.We been married 41 yrs , so this is really hard on both of us. I hate to see her sick from Chemo. But if there is a chance I don't want her to miss that either.
    I'm not real impressed with the Dr. I understand he is a great surgeon, But his bedside manner sucks.seems to be to busy to spend time and talk, This is the first major health problem we have had. I had heart surgery but my Dr was very talkative and that made a big difference.
    Her name is Sandy--- someone ask for her name--
  • Unknown
    Unknown
    #6
    Cindy Bear said:

    Similar diagnosis
    Hi Jim. I've been lurking around the boards for months now. I don't post very often but wanted to reply. My mother passed away June 2009 and I'm angry, bitter, shocked and cynical. Which is why I don't post too often, I don't want to upset the wonderful, brave women (and caretakers) posting on this board. My mother had Stage IVB endometrial adenocarcinoma.Grade 2. After biopsy and ultrasound, she had a cat then pet scan. Keep in mind she was 78 at diagnosis and 79 when she passed. I am sure your wife is much younger. They told us she was not a candidate for surgery then. You do realize that with Stage IV, cancer has spread to distand lymphy nodes and/or organs and surgery won't remove it all. They used the 15 mos. stat.. 15 mos. with Recurrence is what they said. She was gone 4 months into treatment. Taxol/Carboplatin. She made it through the first 3 rounds okay.. They did another cat, said it was "basically good" wanted to do 2 more rounds and then another cat, then look at doing surgery Then the bottom dropped out. She had heavy bleeding during the 4th round and needed blood tranfusion. They said they would keep her on chemo because "she was doing so well." She started the fifth round on a Monday and was dead on Fri. After the fact, her doctor (a big name at a nationally renowned hospital) told me that 10% of patients with her type/stage of cancer will be cured. Yes he used the word cured. She thought she was getting the best but mostly was treated by CNP and chemo nurses. He was overbooked and spent very little time with her as an individual. They told us at time of diagnosis her liver was fine (there was a couple of Lesions on liver) after she passed they said well the lesions shrunk. Anything that "Shrinks" during chemo is deemed malignancy. Also, on the Pet scan, the SUV = standard uptake volume, measures how much the spots light up. Apparently cancer cells are gluttons and will intake alot more of the radioactive substance. Any reading higher than 2.7 is malignancy. The doctor even went so far as to imitate little geiger counter noises. How cute. Did you wife have a pet scan? I wish I could offer words of wisdom or comfort but I can't . Yes these cancers (uterine and ovarian have a high rate of recurrence) I think Claudia's advice is excellent. Read, research, get a second opinion. I didnt' want my mother to have chemo, but family and friends said, "Oh that's great, that's treatment" My mother wasn't open to alternative medicines or to not doing anything, just letting nature take it's course. We naively thought that if the chemo wasn't working the weekly blood work would tell us that. But her CA-125 was always low, 21, 24, 25 all the while the cancer had stopped responding to chemo. We were also told after the fact, that blood work isn't a good indicator of how well chemo is working. I wish you and your wife the best and I will keep you in my thoughts and prayers. Maybe she'll be one of the 10% that is cured.. I think (MaryAnn? ) said it best. It's a crap shoot. If the doctors are being honest, they'll tell you that.

    This comment has been removed by the Moderator
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #7
    Thanks
    Thanks Connie. I appreciate it. I am still in a lot of pain but very slowly healing. Well, I will tell you that we are in Ohio and everyone she saw was part of the Cleveland Clinic network. Which is a huge network, not just main campus but alot of smaller hospitals,and physicians are part of this network. She did not attend the main campus but a satellite office for testing, consulation, chemotherapy etc.
  • Gunhild
    Gunhild Member Posts: 36
    #8
    This is the hardest.
    Deciding what to do is definitely the hardest part. It certainly was for me. I finally agreed to chemo followed by external radiation and brachytherapy. I didn't feel great from the treatments but it wasn't terrible. The Doctors did their best to reduce the side effects. My husband was my strength. I don't think it would have been as easy a decision for me if it wasn't for him. I found that the oncologists who specialized in chemo and radiation were easier to talk with than the surgeon. I had cardiac by-pass surgery last year and found the same thing. The surgeon did a great job but the Cardiologist is the one who took the time to answer my questions. Best wishes to both of you.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #9
    mdad85 said:

    update
    Thanks to all that have responded, We go in Wednesday to meet with an Education Guy before starting chemo next week, She has been talking with my sister and comparing problems and I know she dont know what to do and of course I don't know what to tell her. So i've just told her whatever she decides I will stand behind her decision.She's scared and Mad as I am, but she has surprised me, told me she has had a good life and has gotten to see her kids grow up and see her grandkids, so she s happy.She's only 60 I ve told her that is not old by todays standards.We been married 41 yrs , so this is really hard on both of us. I hate to see her sick from Chemo. But if there is a chance I don't want her to miss that either.
    I'm not real impressed with the Dr. I understand he is a great surgeon, But his bedside manner sucks.seems to be to busy to spend time and talk, This is the first major health problem we have had. I had heart surgery but my Dr was very talkative and that made a big difference.
    Her name is Sandy--- someone ask for her name--

    Welcome Sandy and Jim
    Sorry to hear of Sandy's diagnosis. I know how scary the diagnosis is. I am 60 years old and have Stage III-C UPSC. My husband and I have been married 40 years. Not knowing how the body will react to chemo or radiation is so scary. The unknown is what makes it so bad. My husband has been such a great support for me. I know he is scared, too. The drugs your sister has gotten are probably very different than the ones Sandy will receive, so her reaction will probably be different. The prechemo drugs are so good today, that they realy reduce the chances of being sick. If you can't get information from your doctor, the chemo nurses are so informative. They actually deal with the patients and know about the side effects and what to do for them. The American Cancer Society is a great resource, too. Good luck with your decisions. In peace and caring.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #10
    Cindy Bear said:

    Thanks
    Thanks Connie. I appreciate it. I am still in a lot of pain but very slowly healing. Well, I will tell you that we are in Ohio and everyone she saw was part of the Cleveland Clinic network. Which is a huge network, not just main campus but alot of smaller hospitals,and physicians are part of this network. She did not attend the main campus but a satellite office for testing, consulation, chemotherapy etc.

    Cindy Bear sorry about your Mother
    I am so sorry about the loss of your Mother. I know how hard it is to lose your Mother. My Mother died last April and I still miss her. I hope you can get through your pain and continue to heal. In peace and caring.
  • mdad85
    mdad85 Member Posts: 15
    #11
    Gunhild said:

    This is the hardest.
    Deciding what to do is definitely the hardest part. It certainly was for me. I finally agreed to chemo followed by external radiation and brachytherapy. I didn't feel great from the treatments but it wasn't terrible. The Doctors did their best to reduce the side effects. My husband was my strength. I don't think it would have been as easy a decision for me if it wasn't for him. I found that the oncologists who specialized in chemo and radiation were easier to talk with than the surgeon. I had cardiac by-pass surgery last year and found the same thing. The surgeon did a great job but the Cardiologist is the one who took the time to answer my questions. Best wishes to both of you.

    questions
    I believe that one of the hardest things is what questions do you ask, It seems when the dr is there our brains sorta freeze and can't think of what to ask,tried writing down a list and that didn't even help much, still leave the office thinking I could have asked something else, what did I forget etc, wife feels same way.Hopefully tomorrow when we talk with the Cancer Education person things will be different.
    Thanks for all the wonderful responses

    Jim
  • california_artist
    california_artist Member Posts: 816 Member
    #12
    mdad85 said:

    questions
    I believe that one of the hardest things is what questions do you ask, It seems when the dr is there our brains sorta freeze and can't think of what to ask,tried writing down a list and that didn't even help much, still leave the office thinking I could have asked something else, what did I forget etc, wife feels same way.Hopefully tomorrow when we talk with the Cancer Education person things will be different.
    Thanks for all the wonderful responses

    Jim

    Jim
    Hey, I make the lists too and after forgeting some questions a few times I started bringing a copy of the list to the doctor's and handing one to them as I entered so they could look it over and give me the answers I needed. Helps to number them so you know you are both on the same number and you can take notes and check things off. It's isn't the be all to end all solution, but it certainly helps.

    Don't forget to get ALL the lab/scan/test/operative and path reports. This makes it less likely you will be surprised by any of the things the doctor brings up, cause you'll know the same results he does. It is no fun being blindsided when you're already horribly confused. Plus, you can ask that it become a permanent part of the doctor's record on your wife.

    Best of life to you and Sandy, keep reading,

    Claudia
  • korby2
    korby2 Member Posts: 4
    #13
    Jim -
    My wife was diagnosed
    Jim -
    My wife was diagnosed with Stage 4 grade 3 edometrial cancer 14 months ago at the age of 39. After 6 treatments of chemo and 25 treatments of radiation she had a good response. They were looking at debulking surgery, if she would benefit from it. The doctor would have to do a complete pelvic exonoration with no guarantee to get all the cancer. If they did get all the cancer, we were told the cancer would come back at chance of 90% and my wife's risk of infection and healing would be greater due to her high dose of radiation. Stats give 3 to 5 years survival rate. Only god knows. Best of luck to you and your wife.
  • mdad85
    mdad85 Member Posts: 15
    #14
    korby2 said:

    Jim -
    My wife was diagnosed
    Jim -
    My wife was diagnosed with Stage 4 grade 3 edometrial cancer 14 months ago at the age of 39. After 6 treatments of chemo and 25 treatments of radiation she had a good response. They were looking at debulking surgery, if she would benefit from it. The doctor would have to do a complete pelvic exonoration with no guarantee to get all the cancer. If they did get all the cancer, we were told the cancer would come back at chance of 90% and my wife's risk of infection and healing would be greater due to her high dose of radiation. Stats give 3 to 5 years survival rate. Only god knows. Best of luck to you and your wife.

    she says No Chemo
    Well I guess she has made up her mind, she says NO Chemo, Now what do we expect?
    Has anyone here ever had this to deal with?
    Thank You
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #15
    mdad85 said:

    she says No Chemo
    Well I guess she has made up her mind, she says NO Chemo, Now what do we expect?
    Has anyone here ever had this to deal with?
    Thank You

    Jim I know this has to be hard on you
    Ultimately it is your wife's decision to decide what treatment she does or does not want. Did she talk to the chemo education nurse, or did she decide not to have the chemo on her own? You need to be there for support for her, even though I know this must be very difficult for you. Enjoy each day. No one knows for sure what lies ahead, evryone is so different. Does the hospital have any information for "caregivers". You definitely need some information to help you cope with everything. Keep in touch with the doctor to help reduce any symptoms your wife may experience. You both remain in my prayers. In peace and caring.
  • deanna14
    deanna14 Member Posts: 732
    #16
    mdad85 said:

    she says No Chemo
    Well I guess she has made up her mind, she says NO Chemo, Now what do we expect?
    Has anyone here ever had this to deal with?
    Thank You

    mdad
    I am sorry about your wife's diagnosis. I would encourage you to have her come to this site. There are so many caring and supportive women here. You have to support her decision, but I wish I could tell her that the chemotherapy is not as bad as the imagination leads you to believe. The one thing I would do different in my journey would be to get a second opinion prior to starting treatment. It probably would not change the road I have traveled and do travel, but would have given me peace of mind to hear it from a second oncologist. It also might give her some time to let the shock of diagnosis sink in a little bit and possibly help her to make a more informed decision. Conventional treatment in conjunction with good nutrition and maybe some other alternative treatments offer her the best odds of curing or controlling this illness. Godspeed to you and your wife.

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