Uterine/Cervical Cancer stage 4

Lori_VA
Lori_VA Member Posts: 16 Member
in Uterine/Endometrial Cancer #1
I was originally diagnosed with Stage 1B2 cervical cancer (undifferentiated carcinoma - poorly differentiated). Had radiation and chemo to shrink the tumor and then had a hysterectomy. The pathology report indicated that the cancer was contained within the uterous. My CT prior to the surgery indicated no spread. After surgery I had three treatments of carboplatin/taxol. The CT after the three treatments showed that they cancer had spread to my lungs. Has anyone else had this scenario? To make matters worse, none of the pathologists (4 in total) cannot determine if it is uterine or cervical cancer. I am extremely worried and feel that my life is over.
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Comments

  • sitchy57
    sitchy57 Member Posts: 27
    #2
    Sorry
    Sorry that all that diagnosed mistakes had to happen to you. I will be praying for you and never never give up. Please have faith in God as he does listen and works in ways we don't always understand. Sincerely Sharon
  • MarieA
    MarieA Member Posts: 18
    #3
    Life
    Life is pretty scarey and not at all fun at times, but it is worth the fight to keep it going. I can't relate to your experiences because i have not even had surgery yet to find out if my cancer has spread, but I can tell from your post how frightened you are. I hope you have people you love surround you, pray for you, and fill you with hope. You deserve it, keep going, focus on all that is good in life, which includes you!
  • nempark
    nempark Member Posts: 681
    #4
    sitchy57 said:

    Sorry
    Sorry that all that diagnosed mistakes had to happen to you. I will be praying for you and never never give up. Please have faith in God as he does listen and works in ways we don't always understand. Sincerely Sharon

    Sharon - I like what you said
    Hi: Its so good to hear people speak of God and have faith in God and understand that He really works in ways that we do not understand. . What congregation do you belong to. June
  • nempark
    nempark Member Posts: 681
    #5
    So sorry, so sorry!!
    My dear lori: I am so sorry that you are facing such difficulties with this dreaded diagnosis. Off course, it is okay to worry, but I am sure that your life is not over. I would like to tell you about a friend of mine. Hope this will be of some comfort to you. My friend was diagnosed with stage 4 leukemia, she had treatment and is now in remission. That was 18 years ago. Today, medicine is really good and I am sure you too will be able to control this disease and continue to enjoy a good measure of life. I wish I can just give you a big hug and take all your fears away. Keep strong, and do not lose faith. Talk to God and talk from your heart, sometimes it seems that our Great God does not listen or do anything for us, but just as Sharon says "He does things in his own time. Please see if you can get second opinions and keep talking to us. June
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #6
    nempark said:

    So sorry, so sorry!!
    My dear lori: I am so sorry that you are facing such difficulties with this dreaded diagnosis. Off course, it is okay to worry, but I am sure that your life is not over. I would like to tell you about a friend of mine. Hope this will be of some comfort to you. My friend was diagnosed with stage 4 leukemia, she had treatment and is now in remission. That was 18 years ago. Today, medicine is really good and I am sure you too will be able to control this disease and continue to enjoy a good measure of life. I wish I can just give you a big hug and take all your fears away. Keep strong, and do not lose faith. Talk to God and talk from your heart, sometimes it seems that our Great God does not listen or do anything for us, but just as Sharon says "He does things in his own time. Please see if you can get second opinions and keep talking to us. June

    Thank you
    Thank you all very much for your kindness. I had a pap test a couple of weeks ago and it came back with abnormal cells. Very scary, but I guess it is another hurdle to work through or around. I pray everyday pretty much all day long.
  • lociee
    lociee Member Posts: 102
    #7
    Lori_VA said:

    Thank you
    Thank you all very much for your kindness. I had a pap test a couple of weeks ago and it came back with abnormal cells. Very scary, but I guess it is another hurdle to work through or around. I pray everyday pretty much all day long.

    Lori
    Hi Lori - I had a very similar thing happen. I was stage 1 - had a hysterectomy - then two years later they find this big tumor growing along my rectum - and a tumor in my lung - they did a biopsy and confirmed the cancer had spread from my uterus. What uterus??? The uterus was gone! Anyway - after more chemo and radiation here I am two years later in remission. I surprise them all every time I walk in. You will too!
    Mia
  • HellieC
    HellieC Member Posts: 524 Member
    #8
    lociee said:

    Lori
    Hi Lori - I had a very similar thing happen. I was stage 1 - had a hysterectomy - then two years later they find this big tumor growing along my rectum - and a tumor in my lung - they did a biopsy and confirmed the cancer had spread from my uterus. What uterus??? The uterus was gone! Anyway - after more chemo and radiation here I am two years later in remission. I surprise them all every time I walk in. You will too!
    Mia

    There are lots of us out there!
    Similar story - hysterectomy in 2001 for atypical hyperplasia (no cancer), then 7 years later "recurrence" of cancer (what cancer?) at vaginal vault. 60 Gy of pelvic radiation and I was OK for 2.5 years. thought we'd beaten it. Then second recurrence wrapped around colon found in July 2010. Major surgery and 6 rounds of carbo-taxol. Currently NED but very early days (chemo finished in January 2011). The waters can be very choppy but we will make it through.
    Helen
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #9
    HellieC said:

    There are lots of us out there!
    Similar story - hysterectomy in 2001 for atypical hyperplasia (no cancer), then 7 years later "recurrence" of cancer (what cancer?) at vaginal vault. 60 Gy of pelvic radiation and I was OK for 2.5 years. thought we'd beaten it. Then second recurrence wrapped around colon found in July 2010. Major surgery and 6 rounds of carbo-taxol. Currently NED but very early days (chemo finished in January 2011). The waters can be very choppy but we will make it through.
    Helen

    Bone mets
    It looks like I may have mets in my shoulder. I'm having a bone scan next week. I appreciate all of your encouragement.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #10
    Lori_VA said:

    Bone mets
    It looks like I may have mets in my shoulder. I'm having a bone scan next week. I appreciate all of your encouragement.

    I am so sorry to hear this.
    I am so sorry to hear this. Have they ever determined exact histology of your cancer? Are you continuing with the carbo/taxol chemo?

    Sending positive thoughts your way.
    Annie
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #11
    upsofloating said:

    I am so sorry to hear this.
    I am so sorry to hear this. Have they ever determined exact histology of your cancer? Are you continuing with the carbo/taxol chemo?

    Sending positive thoughts your way.
    Annie

    My dr discontinued the
    My dr discontinued the carbo/taxol after the third treatment when the CT showed the mets to my lungs. I'm currently in a trial at NIH. I think my cancer might be resistant to the "platin" drugs. My cancer is classified as undifferentiated carcinoma and unfortunately no one can definitively say if it is cervical or uterine.

    For the most part I feel fine. Do each of you still find it unbelievable that you have cancer? I am continually puzzled by feeling good, but battling cancer.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #12
    Lori_VA said:

    My dr discontinued the
    My dr discontinued the carbo/taxol after the third treatment when the CT showed the mets to my lungs. I'm currently in a trial at NIH. I think my cancer might be resistant to the "platin" drugs. My cancer is classified as undifferentiated carcinoma and unfortunately no one can definitively say if it is cervical or uterine.

    For the most part I feel fine. Do each of you still find it unbelievable that you have cancer? I am continually puzzled by feeling good, but battling cancer.

    Yes, Lori, I quite
    Yes, Lori, I quite understand the disconnect between feeling essentially normal and being told that you have a life threatening disease. I have found it difficult at times to accept having poisons infused into my body that will make me feel bad when without them I feel fine. Don't we take a pill if we are feeling bad, having problems, etc, in order to feel better rather than the other way around??? At times it seems to take a leap of faith to believe I am ill, to have to plan for all the negative possibilities, when I just want to live a normal life like all those other people. I have the added drawback of having been diagnosed Stage IV breast cancer as well 12 years ago and given a rather gloomy prognosis. It didn't pan out as they said it would so I just keep on hoping....
    Annie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #13
    Lori_VA said:

    My dr discontinued the
    My dr discontinued the carbo/taxol after the third treatment when the CT showed the mets to my lungs. I'm currently in a trial at NIH. I think my cancer might be resistant to the "platin" drugs. My cancer is classified as undifferentiated carcinoma and unfortunately no one can definitively say if it is cervical or uterine.

    For the most part I feel fine. Do each of you still find it unbelievable that you have cancer? I am continually puzzled by feeling good, but battling cancer.

    80% of the women respond to
    80% of the women respond to carbo/taxol as a front line therapy. That means 20% of them don't. Some women develop resistance after some length of exposure to the drugs. For some women, the drug does not work from the beginning. It's clear you belong to this 20% group. The drug combo did not work for you FROM THE BEGINNING considering that the cancer spread right from the beginning of the chemo treatment. Given this, I am surprised that our doctor is still keeping you on the same regimen. Maybe there is a very good reason for it, but based on what little I know, this goes contrary to everything I heard and read.

    You may want to consider asking your doctor why he is keeping on the same regimen that obviously is not working, and has not worked from the beginning. Certainly, my doctor wouldn't have. I know this because I had discussion about this possibility. I asked him right before the chemo started "How would you know if the chemo is working and what would you do if there is an early sign that it is not working" His answer was, he would check CA125 from the beginning and see if the number is going down, and he will check the scan after 9 weeks (3 cycles). If the chemo is not working, we do plan B, which includes changing drug regimen.

    So, what I am trying to tell you is, this does NOT mean that you are hopeless - not at all, not even close!!!!! It could very well be the case that this particular drug combo was not right for you. There are LOTS of different drugs. The key is to find what works.

    There are tests to help you figure out which drugs work for you. It's called cell assay testing. They use tumor samples and subject them to all different drug combinations and see which drug(s) kill(s) YOUR PARTICULAR kind of cancer cells. Since you did not develop carbo/taxol resistance after a prolonged exposure (meaning, your cancer cells did not mutate to resist this combo, they were unresponsive from the beginning), your original tumor sample from the surgery is probably still good enough for assay testing (if they are kept frozen, not killed). Or, better yet, if your NEW tumors are accessible to biopsy or if there will be another surgery, you can use the fresh tumor samples to send to special labs for cell assay testing or cell death testing. One of these labs is Rational Therapeutics. There are more. You can do google search.

    Don't give up. You have LOTS of options and potentially a great outcome. I am not saying this out of faith (I am not religious) or wishful thinking (that does not help), or as a pep talk (I don't know you to come up with a good line). I am saying this based on science, reason, and rational assessments of options you haven't explored yet.

    Good luck.

    *** PS: I am UPSC (uterine papillary serious carcinoma) 4B. I was just declared to be in remission against daunting odds - something I was not expecting - I was mentally prepared for continuing treatment. I think I got this results due to some luck (my cancer was responding well to the carbo/taxol combo), good science (a new delivery regimen that is just starting to be deployed by savvy oncologists), and proactive steps I took as a disciplined self advocating patient. I am VERY optimistic about my prognosis, not because I believe in miraculous, spontaneous healing or divine intervention, but based on reason, and rational assessment of the available options.

    I am not a religious person, so I cannot say anything in the realm of spirituality, but something tells me that while you have faith in God, you can also be a very actively engaged, self advocating patient who does everything possible within her power to affect the outcome.
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #14
    evertheoptimist said:

    80% of the women respond to
    80% of the women respond to carbo/taxol as a front line therapy. That means 20% of them don't. Some women develop resistance after some length of exposure to the drugs. For some women, the drug does not work from the beginning. It's clear you belong to this 20% group. The drug combo did not work for you FROM THE BEGINNING considering that the cancer spread right from the beginning of the chemo treatment. Given this, I am surprised that our doctor is still keeping you on the same regimen. Maybe there is a very good reason for it, but based on what little I know, this goes contrary to everything I heard and read.

    You may want to consider asking your doctor why he is keeping on the same regimen that obviously is not working, and has not worked from the beginning. Certainly, my doctor wouldn't have. I know this because I had discussion about this possibility. I asked him right before the chemo started "How would you know if the chemo is working and what would you do if there is an early sign that it is not working" His answer was, he would check CA125 from the beginning and see if the number is going down, and he will check the scan after 9 weeks (3 cycles). If the chemo is not working, we do plan B, which includes changing drug regimen.

    So, what I am trying to tell you is, this does NOT mean that you are hopeless - not at all, not even close!!!!! It could very well be the case that this particular drug combo was not right for you. There are LOTS of different drugs. The key is to find what works.

    There are tests to help you figure out which drugs work for you. It's called cell assay testing. They use tumor samples and subject them to all different drug combinations and see which drug(s) kill(s) YOUR PARTICULAR kind of cancer cells. Since you did not develop carbo/taxol resistance after a prolonged exposure (meaning, your cancer cells did not mutate to resist this combo, they were unresponsive from the beginning), your original tumor sample from the surgery is probably still good enough for assay testing (if they are kept frozen, not killed). Or, better yet, if your NEW tumors are accessible to biopsy or if there will be another surgery, you can use the fresh tumor samples to send to special labs for cell assay testing or cell death testing. One of these labs is Rational Therapeutics. There are more. You can do google search.

    Don't give up. You have LOTS of options and potentially a great outcome. I am not saying this out of faith (I am not religious) or wishful thinking (that does not help), or as a pep talk (I don't know you to come up with a good line). I am saying this based on science, reason, and rational assessments of options you haven't explored yet.

    Good luck.

    *** PS: I am UPSC (uterine papillary serious carcinoma) 4B. I was just declared to be in remission against daunting odds - something I was not expecting - I was mentally prepared for continuing treatment. I think I got this results due to some luck (my cancer was responding well to the carbo/taxol combo), good science (a new delivery regimen that is just starting to be deployed by savvy oncologists), and proactive steps I took as a disciplined self advocating patient. I am VERY optimistic about my prognosis, not because I believe in miraculous, spontaneous healing or divine intervention, but based on reason, and rational assessment of the available options.

    I am not a religious person, so I cannot say anything in the realm of spirituality, but something tells me that while you have faith in God, you can also be a very actively engaged, self advocating patient who does everything possible within her power to affect the outcome.

    Thanks for the encouragement and info
    The bone scan results were good - no "hot spots" except for my shoulder which the ortho thinks is a stress fracture, but I'm still going to get a bone biopsy for my peace of mind. Hopefully it will be good news too! I'm going to pursue the cell assay. I noticed that several folks had mentioned it in their postings. My cancer type is a little unusual, so hopefully this will allow them to pinpoint the combo of drugs that will be the most beneficial.

    Thank you all for your many kindnesses.
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #15
    evertheoptimist said:

    80% of the women respond to
    80% of the women respond to carbo/taxol as a front line therapy. That means 20% of them don't. Some women develop resistance after some length of exposure to the drugs. For some women, the drug does not work from the beginning. It's clear you belong to this 20% group. The drug combo did not work for you FROM THE BEGINNING considering that the cancer spread right from the beginning of the chemo treatment. Given this, I am surprised that our doctor is still keeping you on the same regimen. Maybe there is a very good reason for it, but based on what little I know, this goes contrary to everything I heard and read.

    You may want to consider asking your doctor why he is keeping on the same regimen that obviously is not working, and has not worked from the beginning. Certainly, my doctor wouldn't have. I know this because I had discussion about this possibility. I asked him right before the chemo started "How would you know if the chemo is working and what would you do if there is an early sign that it is not working" His answer was, he would check CA125 from the beginning and see if the number is going down, and he will check the scan after 9 weeks (3 cycles). If the chemo is not working, we do plan B, which includes changing drug regimen.

    So, what I am trying to tell you is, this does NOT mean that you are hopeless - not at all, not even close!!!!! It could very well be the case that this particular drug combo was not right for you. There are LOTS of different drugs. The key is to find what works.

    There are tests to help you figure out which drugs work for you. It's called cell assay testing. They use tumor samples and subject them to all different drug combinations and see which drug(s) kill(s) YOUR PARTICULAR kind of cancer cells. Since you did not develop carbo/taxol resistance after a prolonged exposure (meaning, your cancer cells did not mutate to resist this combo, they were unresponsive from the beginning), your original tumor sample from the surgery is probably still good enough for assay testing (if they are kept frozen, not killed). Or, better yet, if your NEW tumors are accessible to biopsy or if there will be another surgery, you can use the fresh tumor samples to send to special labs for cell assay testing or cell death testing. One of these labs is Rational Therapeutics. There are more. You can do google search.

    Don't give up. You have LOTS of options and potentially a great outcome. I am not saying this out of faith (I am not religious) or wishful thinking (that does not help), or as a pep talk (I don't know you to come up with a good line). I am saying this based on science, reason, and rational assessments of options you haven't explored yet.

    Good luck.

    *** PS: I am UPSC (uterine papillary serious carcinoma) 4B. I was just declared to be in remission against daunting odds - something I was not expecting - I was mentally prepared for continuing treatment. I think I got this results due to some luck (my cancer was responding well to the carbo/taxol combo), good science (a new delivery regimen that is just starting to be deployed by savvy oncologists), and proactive steps I took as a disciplined self advocating patient. I am VERY optimistic about my prognosis, not because I believe in miraculous, spontaneous healing or divine intervention, but based on reason, and rational assessment of the available options.

    I am not a religious person, so I cannot say anything in the realm of spirituality, but something tells me that while you have faith in God, you can also be a very actively engaged, self advocating patient who does everything possible within her power to affect the outcome.

    Question about cell assay
    Did your doctor submit samples of your tumor for the cell assay analysis? Do you know if it works for all types of cancer? Looking on google, but I'm not the best web searcher.

    Thanks!
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #16
    Lori_VA said:

    Question about cell assay
    Did your doctor submit samples of your tumor for the cell assay analysis? Do you know if it works for all types of cancer? Looking on google, but I'm not the best web searcher.

    Thanks!

    Need some encouragement
    I go tomorrow for a CT to see if the clinical trial drugs are working. I am scared to death. My cancer is very aggresive and I think that every little ache or pain is the cancer growing and moving someplace else in my body. I have been praying nonstop. I could use some of your strength and positive outlook!

    Thank you.
  • norma2
    norma2 Member Posts: 479
    #17
    Lori_VA said:

    Need some encouragement
    I go tomorrow for a CT to see if the clinical trial drugs are working. I am scared to death. My cancer is very aggresive and I think that every little ache or pain is the cancer growing and moving someplace else in my body. I have been praying nonstop. I could use some of your strength and positive outlook!

    Thank you.

    {{{LORI}}}}
    Sending you strength and a whole lot of positive wishes for a good outcome for the CT scan. I had a scare a few weeks back for a check up. It really made me worry so much. Every little ache and pain was cancer growing. I understand. Results came back all clear.

    It made it better for me during this time to read the encouragment form the ladies here. Their posts brought my spirits up. I hope this one does the same for you, sweetie.
    All of this is so scary. Feels like there is no control over the outcome. I find that the worst part. Can't look too far in the future. I have to just concentrate on one day at a time. I say to myself, I have today. Tomorrow is going to have to take care of itself. When the worry starts I give it to God. I pray for inner peace. I pray for healing. And I pray for all of us here.
    Please let us know how the tests go for you.
  • kkstef
    kkstef Member Posts: 688 Member
    #18
    Lori_VA said:

    Need some encouragement
    I go tomorrow for a CT to see if the clinical trial drugs are working. I am scared to death. My cancer is very aggresive and I think that every little ache or pain is the cancer growing and moving someplace else in my body. I have been praying nonstop. I could use some of your strength and positive outlook!

    Thank you.

    Supporting you!
    Lori,

    I can understand why you are so frightened and believe, it is normal! However, that does not make it any easier to deal with. Ask the office to call you as soon as they get the reports...Generally it takes 24 hours to have it read and transcribed....It is NOT necessary to wait for days/weeks to get the results, particularly when you are feeling so anxious!

    Take some time tonight to try to relax....do things that you enjoy...listen to music, go for a walk, watch a movie, eat your favorite things! In other words, it is all about YOU tonight!!

    Sending you big hugs!!

    Karen
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #19
    Lori_VA said:

    Need some encouragement
    I go tomorrow for a CT to see if the clinical trial drugs are working. I am scared to death. My cancer is very aggresive and I think that every little ache or pain is the cancer growing and moving someplace else in my body. I have been praying nonstop. I could use some of your strength and positive outlook!

    Thank you.

    Lori
    Sending you encouragement and support....Hang in there and keep us posted...

    Laurie
  • sleem
    sleem Member Posts: 92
    #20
    Much care and support
    I continue to have emotions that come and leave. At first, it was so difficult. Life for me is framed before 'c' and after 'c'. I don't know where you are in your treatment and doctor. Did you have a second opinion and are you seeing a Gyn/Onco? Research demonstrates a Gyn/Onco has better stats than reg. Gyn for life chances. Each person must be their advocate and find who they feel is best for them. All the ladies here and I offer hope and knowledge. I feel that each of us are sisters in helping one another. I too have found so much knowledge and support from the writers.

    Please know that I've been afraid, hopeful, happy,thankful, sad, courageous all sometimes in one day. Be kind to yourself for being human in all of this. I have learned everything I can about this UPSC. It is hard at times to read stuff, but it has kept me in tuned with my own illness and empowered me to ask questions and bring better results to me and for others.

    KEEP your hope and fight. You are not alone. I have my faith which helps me so much.
  • Lori_VA
    Lori_VA Member Posts: 16 Member
    #21
    sleem said:

    Much care and support
    I continue to have emotions that come and leave. At first, it was so difficult. Life for me is framed before 'c' and after 'c'. I don't know where you are in your treatment and doctor. Did you have a second opinion and are you seeing a Gyn/Onco? Research demonstrates a Gyn/Onco has better stats than reg. Gyn for life chances. Each person must be their advocate and find who they feel is best for them. All the ladies here and I offer hope and knowledge. I feel that each of us are sisters in helping one another. I too have found so much knowledge and support from the writers.

    Please know that I've been afraid, hopeful, happy,thankful, sad, courageous all sometimes in one day. Be kind to yourself for being human in all of this. I have learned everything I can about this UPSC. It is hard at times to read stuff, but it has kept me in tuned with my own illness and empowered me to ask questions and bring better results to me and for others.

    KEEP your hope and fight. You are not alone. I have my faith which helps me so much.

    Clinical trial did not work for me
    Thank you all very much for your support and encouragement. I found out on Monday that the trial did not work for me. The lung mets increased in size. I am trying to get an appt with my dr to start traditional chemo again. Any suggestions?

    Thanks,
    Lori

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