Carcinoma of Unknown Primary

kgilbert
kgilbert Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
I am looking for anyone out there who has been diagnosed with a carcinoma of unknown primary ruled out as a germ cell tumor. Also we have been through treatment with taxol, carboplatnum, and etopiside which has failed to work. now we are going trough treatmnt with irinotecan and gemcitibean. I am looking for someone with experience in this diasease where you were treated and what type of treatment you received as well as outcome. My husband's age is 33. Thank you
bryanandkiminfla@webtv.net
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Comments

  • mhwow
    mhwow Member Posts: 1
    #2
    I realize that it has been a long time since you wrote your message, however I hope that your husband is still here. I was diagnosed with squamous cell carcinoma of unknown primary last February. The tumors were in the pelvis in two lymph nodes, one on either side. They are retroperitoneal. The one on the right is very close, and actually invested in my sciatic nerve, and the left one is wrapped around my ureter and very close to important blood vessels. When they opened me up last year, they closed me back up without doing anything but taking samples. I underwent radiation combined with cisplatin. The radiation was very helpful for the tumor on the right. It reduced the pain significantly.About two months later the tumor on the left which had been quiet began to grow. I looked into surgery again but the risks and consequences were greater than the benefits. I went to Mass General and had a GYN oncologist recommend cisplatin/gemcitabin together. I started in November, had 8 treatments. My tumor shrunk about 25%. It was a difficult regimen, but I am willing to stick with it for another round to see if it continues to help. Where is the carcinoma in your husband? At what cancer center is he being treated? These are strange types of cancer, and there are no set protocols. It's somewhat trial and error. I was 39 yo when diagnosed and turned 40 in May. I had been very healthy. Anywway, I hope this email is helpful in some way.
  • RLinn50667
    RLinn50667 Member Posts: 3
    #3
    In September,2001, I was diagnosed with Mucinous Adeno Carcinoma with unknown primary. In December , 2001, I was operated on and had 25lbs of tumor removed. My spleen was encased in a tumor and a couple of other smaller tumors were left. I then signed up for a trial and had I had Gemacitabine on day 1 and 8 of each cycle and carboplatin on day 1 of each cycle. I also took Xeloda twice a day from day 1-14 of each cycle. Cyclles lasted 21 days and this went on for 6 months. I was treated at the University of Michigan Cancer Center. Although it did not shrink the tumors< I had left, it prevented them from growing. I have been out of treatment now for 9 months. Although I understand there is a Dr. Mansfield, at MD Anderson Cancer Center, in Houston , Texas, that is a specialist in this type of Cancer and I plan on getting a second opinion from him to see if there is anything more that can be done.
  • APatient
    APatient Member Posts: 5
    #4
    mhwow said:

    I realize that it has been a long time since you wrote your message, however I hope that your husband is still here. I was diagnosed with squamous cell carcinoma of unknown primary last February. The tumors were in the pelvis in two lymph nodes, one on either side. They are retroperitoneal. The one on the right is very close, and actually invested in my sciatic nerve, and the left one is wrapped around my ureter and very close to important blood vessels. When they opened me up last year, they closed me back up without doing anything but taking samples. I underwent radiation combined with cisplatin. The radiation was very helpful for the tumor on the right. It reduced the pain significantly.About two months later the tumor on the left which had been quiet began to grow. I looked into surgery again but the risks and consequences were greater than the benefits. I went to Mass General and had a GYN oncologist recommend cisplatin/gemcitabin together. I started in November, had 8 treatments. My tumor shrunk about 25%. It was a difficult regimen, but I am willing to stick with it for another round to see if it continues to help. Where is the carcinoma in your husband? At what cancer center is he being treated? These are strange types of cancer, and there are no set protocols. It's somewhat trial and error. I was 39 yo when diagnosed and turned 40 in May. I had been very healthy. Anywway, I hope this email is helpful in some way.

    Hello, When they found the tumors in the
    pelvis, did they do M R I's or what? What
    made the doctor go to the pelvis, pls
    respond. I had m r i of abdomen and mass
    was found on spleen. also i hurt , have
    pain in my pelvis near where yours was.
    Had hysterectomy in 99 and it was begining
    stages of cancer. Currently have melanoma
    found in the scalp may be a mest. to spleen.
    pls answer the question. thank you
  • APatient
    APatient Member Posts: 5
    #5
    RLinn50667 said:

    In September,2001, I was diagnosed with Mucinous Adeno Carcinoma with unknown primary. In December , 2001, I was operated on and had 25lbs of tumor removed. My spleen was encased in a tumor and a couple of other smaller tumors were left. I then signed up for a trial and had I had Gemacitabine on day 1 and 8 of each cycle and carboplatin on day 1 of each cycle. I also took Xeloda twice a day from day 1-14 of each cycle. Cyclles lasted 21 days and this went on for 6 months. I was treated at the University of Michigan Cancer Center. Although it did not shrink the tumors< I had left, it prevented them from growing. I have been out of treatment now for 9 months. Although I understand there is a Dr. Mansfield, at MD Anderson Cancer Center, in Houston , Texas, that is a specialist in this type of Cancer and I plan on getting a second opinion from him to see if there is anything more that can be done.

    Did they take out your whole spleen? Was
    a cat scan done or m r i of the spleen?
    Did they find the tumors only after they
    opened you up or did they show up on film?
  • RLinn50667
    RLinn50667 Member Posts: 3
    #6
    APatient said:

    Did they take out your whole spleen? Was
    a cat scan done or m r i of the spleen?
    Did they find the tumors only after they
    opened you up or did they show up on film?

    They told me about the spleen after I was opened up. Although it does show up on the catscan also. They did not remove the spleen because they felt it would be too much of a bloody mess.
  • Denise6
    Denise6 Member Posts: 6
    #7
    i know a little bit of that my husbands was told this on 1/2/03 happpy new year for us all in all he has been through 8iv chemo and his is all contanned in the liver may be we can help each other my husband just turned 52
  • Denise6
    Denise6 Member Posts: 6
    #8
    Denise6 said:

    i know a little bit of that my husbands was told this on 1/2/03 happpy new year for us all in all he has been through 8iv chemo and his is all contanned in the liver may be we can help each other my husband just turned 52

    his cancer was called neuroendoctrine tumor of unknow primary and is a neuroendoctrine carcinoma
  • EGCsurvivor
    EGCsurvivor Member Posts: 2
    #9
    Denise6 said:

    his cancer was called neuroendoctrine tumor of unknow primary and is a neuroendoctrine carcinoma

    I had a yolk sac extra gonadal germ cell tumor primary to my prostate. The doctors didn't want to believe it was primary to the prostate, but nothing else was found. I underwent 4 cycles of BEP and a radical prostatectomy. After the surgery, pathology revealed that the tumor had formed a foci of primitive neuroectodermal tumor as well as a low-grade sarcomatous component showing rhabdomysoarcomatous features. Indiana University believed that foci did qualify for residual yolk sac tumor having both microcystic and glandular arrangements. There were also solid foci, but it was unclear without additional studies whether these corresponded to yolk sac tumor or primitive neuroectodermal tumor.

    That was in Jan 2004. So far I am cancer free.
  • RachelleMarie
    RachelleMarie Member Posts: 6
    #10
    EGCsurvivor said:

    I had a yolk sac extra gonadal germ cell tumor primary to my prostate. The doctors didn't want to believe it was primary to the prostate, but nothing else was found. I underwent 4 cycles of BEP and a radical prostatectomy. After the surgery, pathology revealed that the tumor had formed a foci of primitive neuroectodermal tumor as well as a low-grade sarcomatous component showing rhabdomysoarcomatous features. Indiana University believed that foci did qualify for residual yolk sac tumor having both microcystic and glandular arrangements. There were also solid foci, but it was unclear without additional studies whether these corresponded to yolk sac tumor or primitive neuroectodermal tumor.

    That was in Jan 2004. So far I am cancer free.

    I am 39 year old single mom and was diagnosed with adenocarcinoma with unknown primary 6 mos ago. My doctor tells be that CUP (and I) have a very poor prognosis. I am searching for people who have survived or are surviving this. I am looking for as much hope as possible. My boys are only 6 and 8 yrs old and I can't stand the thought of dying. Are there any happy endings out there???? rachelle@total.net
  • lleever
    lleever Member Posts: 1
    #11
    RachelleMarie said:

    I am 39 year old single mom and was diagnosed with adenocarcinoma with unknown primary 6 mos ago. My doctor tells be that CUP (and I) have a very poor prognosis. I am searching for people who have survived or are surviving this. I am looking for as much hope as possible. My boys are only 6 and 8 yrs old and I can't stand the thought of dying. Are there any happy endings out there???? rachelle@total.net

    Rachelle, My husband is 44 and has CUP. Diagnosed two weeks after we returned from our honeymoon. I wish that I could tell you that all of the research that I have done has helped. Most of what you read will depress you...I,too am looking for happy endings -- if you find any, please share. What I can tell you is that the doctors made me believe my husband would be dead in only 6 months...and now it has been nearly 9 months and other than suffering when in chemo, he is doing really well. You would never know he is so sick. My heart is with you -- stay strong and don't give up the fight. If you find any good news or stories, please share and I will do the same.
  • pchappel
    pchappel Member Posts: 1
    #12
    RachelleMarie said:

    I am 39 year old single mom and was diagnosed with adenocarcinoma with unknown primary 6 mos ago. My doctor tells be that CUP (and I) have a very poor prognosis. I am searching for people who have survived or are surviving this. I am looking for as much hope as possible. My boys are only 6 and 8 yrs old and I can't stand the thought of dying. Are there any happy endings out there???? rachelle@total.net

    I realize that it has been a few months since you posted this msg. My daughter-in-law, 38 yr. old dx with adenocarcinoma of unknown primary-currently in treatment with taxol, carboplatinum, and etopiside - how did your husband respond to the irinotecan/gemcitibean (sp??) Hate having to see her go through the side effects - she is down to 101 lb. also has two small children - prognosis is grim but we are determined to investigate other options. Are you familiar with anything out there that could possibly work. She has metastasis to the liver, lymph sys. and lungs. Thank you for your feedback.
  • RachelleMarie
    RachelleMarie Member Posts: 6
    #13
    lleever said:

    Rachelle, My husband is 44 and has CUP. Diagnosed two weeks after we returned from our honeymoon. I wish that I could tell you that all of the research that I have done has helped. Most of what you read will depress you...I,too am looking for happy endings -- if you find any, please share. What I can tell you is that the doctors made me believe my husband would be dead in only 6 months...and now it has been nearly 9 months and other than suffering when in chemo, he is doing really well. You would never know he is so sick. My heart is with you -- stay strong and don't give up the fight. If you find any good news or stories, please share and I will do the same.

    Hi, How are you doing? How is your husband responding to chemo. I've been on a taxol, carboplatimum and gemzar mixture. It's hell but the tumours are melting away. I guess for how long is the question.Where are your husbands secondary tumours? I know what you mean in that one would never know he was sick. Except for being bald, apparently I look great. My kids had a bit of a time adjusting to it (they are 6 and 8) but I try not to make a big deal of it. I heard from one lady who's mom was diagnosed with cup and given 2 months to live and that was 10 years ago! So there is at least one person out there beating the odds, and me and your husband will be the next two. Please update me on how everything is going and I am praying for the best for you.
    Rachelle
    rachelle@total.net
  • RachelleMarie
    RachelleMarie Member Posts: 6
    #14
    lleever said:

    Rachelle, My husband is 44 and has CUP. Diagnosed two weeks after we returned from our honeymoon. I wish that I could tell you that all of the research that I have done has helped. Most of what you read will depress you...I,too am looking for happy endings -- if you find any, please share. What I can tell you is that the doctors made me believe my husband would be dead in only 6 months...and now it has been nearly 9 months and other than suffering when in chemo, he is doing really well. You would never know he is so sick. My heart is with you -- stay strong and don't give up the fight. If you find any good news or stories, please share and I will do the same.

    Hi, How are you doing? How is your husband responding to chemo. I've been on a taxol, carboplatimum and gemzar mixture. It's hell but the tumours are melting away. I guess for how long is the question.Where are your husbands secondary tumours? I know what you mean in that one would never know he was sick. Except for being bald, apparently I look great. My kids had a bit of a time adjusting to it (they are 6 and 8) but I try not to make a big deal of it. I heard from one lady who's mom was diagnosed with cup and given 2 months to live and that was 10 years ago! So there is at least one person out there beating the odds, and me and your husband will be the next two. Please update me on how everything is going and I am praying for the best for you.
    Rachelle
    rachelle@total.net
  • u2lins
    u2lins Member Posts: 1
    #15
    RachelleMarie said:

    I am 39 year old single mom and was diagnosed with adenocarcinoma with unknown primary 6 mos ago. My doctor tells be that CUP (and I) have a very poor prognosis. I am searching for people who have survived or are surviving this. I am looking for as much hope as possible. My boys are only 6 and 8 yrs old and I can't stand the thought of dying. Are there any happy endings out there???? rachelle@total.net

    Hi RachelleMarie
    I too have cup with mets in the liver the liver has 5 tumors in both lobes and I am being treated with irinotecan/gemcitibean I have had 11 treatments with little side affects (I am very tired and a little nausea and I have gained 20 lbs since I started treatment I am huge lol) a quick story I am waiting for my 1st ct scan after 6 weeks of treatment and I am talking with this man age 75 and he says to me "I have liver cancer and its been 7 years how great is that do you know anyone who has lived that long?" and I responed yes I hope me. At my 6 week ct scan it showed a 25% shrinkage and at 12 weeks it showed a small percent and 1 lymph node clear of cancer. I am 42 and have 3 children ages 5,5 & 11 so I know how you feel. Just know that god does not give us anything we can't handle. Remember that the prognosis your doctor gave you was his opinion he can not predict the future. My doctor would not give a time limit and told me that this can be controlled. My good friend was diagnosed 2 weeks before me and we have a saying we tell each other " you have two choices you can live or you can live there is no other choice" You need to stay positive and laugh a lot. I am truely blessed with great support from my family and friends. I will keep you in my prayers and if there is anything I can help you with please email me. I dont know where you are being treated but if you dont like what your doctor is telling you then maybe look for a new doctor I know my friend did and he is very happy.
    Linda
  • RachelleMarie
    RachelleMarie Member Posts: 6
    #16
    u2lins said:

    Hi RachelleMarie
    I too have cup with mets in the liver the liver has 5 tumors in both lobes and I am being treated with irinotecan/gemcitibean I have had 11 treatments with little side affects (I am very tired and a little nausea and I have gained 20 lbs since I started treatment I am huge lol) a quick story I am waiting for my 1st ct scan after 6 weeks of treatment and I am talking with this man age 75 and he says to me "I have liver cancer and its been 7 years how great is that do you know anyone who has lived that long?" and I responed yes I hope me. At my 6 week ct scan it showed a 25% shrinkage and at 12 weeks it showed a small percent and 1 lymph node clear of cancer. I am 42 and have 3 children ages 5,5 & 11 so I know how you feel. Just know that god does not give us anything we can't handle. Remember that the prognosis your doctor gave you was his opinion he can not predict the future. My doctor would not give a time limit and told me that this can be controlled. My good friend was diagnosed 2 weeks before me and we have a saying we tell each other " you have two choices you can live or you can live there is no other choice" You need to stay positive and laugh a lot. I am truely blessed with great support from my family and friends. I will keep you in my prayers and if there is anything I can help you with please email me. I dont know where you are being treated but if you dont like what your doctor is telling you then maybe look for a new doctor I know my friend did and he is very happy.
    Linda

    Hi Linda,
    Thanks for replying. I found your message very encouraging and uplifting and I thank-you for that. I feel we have something in common, besides cup, being both young and with young children. It sounds to me that your cancer is responding to the chemo and that is always good news. I have just finished my first chemo protocol, and my ct scan showed that the tumors are virtually all gone! Tomorrow I start my second round of
    chemo, sometimes called maintence chemo, for another 3 months. My ocologist (mister worst case scenario) feels like the disease is under control and that I could be in remission but when I stop chemo it will grow back. That really depresses me, cause I'd like to be cured and would like life to go back to the way it was. I find living with the unknown very difficult. I have gotten a couple of other opinons, and they both agree with my drs. recomandations, so I will stick with him, he's gotten me this far and so far so good. He's just not a great communicator, I love information! In the meantime, I find it very helpful to be in contact with people like you who are so positive, you really help me feel like I am not alone and that somehow life will be ok. I am happy that you have a good support system around you. How are your children handling the situation? How long have you had cancer. I will hope and pray for all the best for you.
    Please email back at my direct e-mail, rachelle@total.net.

    Take care,
    Rachelle
  • RachelleMarie
    RachelleMarie Member Posts: 6
    #17
    u2lins said:

    Hi RachelleMarie
    I too have cup with mets in the liver the liver has 5 tumors in both lobes and I am being treated with irinotecan/gemcitibean I have had 11 treatments with little side affects (I am very tired and a little nausea and I have gained 20 lbs since I started treatment I am huge lol) a quick story I am waiting for my 1st ct scan after 6 weeks of treatment and I am talking with this man age 75 and he says to me "I have liver cancer and its been 7 years how great is that do you know anyone who has lived that long?" and I responed yes I hope me. At my 6 week ct scan it showed a 25% shrinkage and at 12 weeks it showed a small percent and 1 lymph node clear of cancer. I am 42 and have 3 children ages 5,5 & 11 so I know how you feel. Just know that god does not give us anything we can't handle. Remember that the prognosis your doctor gave you was his opinion he can not predict the future. My doctor would not give a time limit and told me that this can be controlled. My good friend was diagnosed 2 weeks before me and we have a saying we tell each other " you have two choices you can live or you can live there is no other choice" You need to stay positive and laugh a lot. I am truely blessed with great support from my family and friends. I will keep you in my prayers and if there is anything I can help you with please email me. I dont know where you are being treated but if you dont like what your doctor is telling you then maybe look for a new doctor I know my friend did and he is very happy.
    Linda

    Hi Everyone in this Rare Cancer sub-group.
    First of all, thank-you Linda and Yvonne for emailing me directly. You helped out so much in a time of absolute dispair. Sadly, this doesn't seem to be a very active group. I can not help but to wonder why. But I do hope that anyone that reads our stories finds some sort of solace and support. If you have read this thread you will know that I was diagnosed with adenocarcinoma of unknown primary origin 13 months ago. Facing the grim prognosis alone with 2 young children was/is the hardest thing I have ever faced. Luckily I have many careing and generous friends and family members that shared the burden with me. Because of the unlikely-hood that this type of cancer would respond to chemo, and given the fact that I was more or less asymptomatic, treatment was delayed 6 months, until I was is so much pain I could not sleep.

    What happen next is nothing short of a miracle. A 3 month protocol of gemzar, taxol, a carboplatinum produced a complete response. A maintenence dose of taxol was started but aborted after only 1 cycle of the 6 month regime. Stopped because my ct scans continued to be normal and the blood tumour marker (ca-125) remained normal as well. (Plus the quality of my life SUCKED on chemo). So after another presentation to the tumour board (13 oncologists of various specialties) it is deemed that I am in remission.
    They don't know for how long. But, I'll take this result and run (far,hard and fast) with it. I want to share this with anyone who has this diagnosis, to give hope. That what you read on the internet is only a generality, not your future. I recommended articles by Hainsworth and Greco (researchers in unknown primary....google their name) as hopefull and positive information. I pray daily for my continued health, and will for you too. (If God's not your bag, that's ok, I'll just do some creative visualization for you).

    I am interested in hearing from anyone who would like to share their story and I am willing to share more to anyone who is interested. I send you all my support and good wishes and wish you nothing but happiness and good health.

    Rachelle

    rachelle@total.net
  • bball3dad
    bball3dad Member Posts: 1
    #18
    RachelleMarie said:

    Hi Everyone in this Rare Cancer sub-group.
    First of all, thank-you Linda and Yvonne for emailing me directly. You helped out so much in a time of absolute dispair. Sadly, this doesn't seem to be a very active group. I can not help but to wonder why. But I do hope that anyone that reads our stories finds some sort of solace and support. If you have read this thread you will know that I was diagnosed with adenocarcinoma of unknown primary origin 13 months ago. Facing the grim prognosis alone with 2 young children was/is the hardest thing I have ever faced. Luckily I have many careing and generous friends and family members that shared the burden with me. Because of the unlikely-hood that this type of cancer would respond to chemo, and given the fact that I was more or less asymptomatic, treatment was delayed 6 months, until I was is so much pain I could not sleep.

    What happen next is nothing short of a miracle. A 3 month protocol of gemzar, taxol, a carboplatinum produced a complete response. A maintenence dose of taxol was started but aborted after only 1 cycle of the 6 month regime. Stopped because my ct scans continued to be normal and the blood tumour marker (ca-125) remained normal as well. (Plus the quality of my life SUCKED on chemo). So after another presentation to the tumour board (13 oncologists of various specialties) it is deemed that I am in remission.
    They don't know for how long. But, I'll take this result and run (far,hard and fast) with it. I want to share this with anyone who has this diagnosis, to give hope. That what you read on the internet is only a generality, not your future. I recommended articles by Hainsworth and Greco (researchers in unknown primary....google their name) as hopefull and positive information. I pray daily for my continued health, and will for you too. (If God's not your bag, that's ok, I'll just do some creative visualization for you).

    I am interested in hearing from anyone who would like to share their story and I am willing to share more to anyone who is interested. I send you all my support and good wishes and wish you nothing but happiness and good health.

    Rachelle

    rachelle@total.net

    Rachelle

    Are you still lookng at these boards. I've just been diagnosed with adenocarcinoma of an unknown primary. I'm 51 with 3 small kids. Your story provides a measure of hope for me. I've only presented in the neck lymph nodes. I'd like to hear how you are doing.

    Thanks,
    Paul
    bball3dad@optonline.net
  • RachelleMarie
    RachelleMarie Member Posts: 6
    #19
    bball3dad said:

    Rachelle

    Are you still lookng at these boards. I've just been diagnosed with adenocarcinoma of an unknown primary. I'm 51 with 3 small kids. Your story provides a measure of hope for me. I've only presented in the neck lymph nodes. I'd like to hear how you are doing.

    Thanks,
    Paul
    bball3dad@optonline.net

    Hey everyone,
    So far, so good. In remission for 10 months now.
    Freaking out about my next doctors appointment.
    They really are life and death meetings.
    In the meantime, LIFE IS GREAT!!! I have been having
    the best best best year of my life. LIve large, that's all I can say.
    I have a new email
    rachellelapointe@sympatico.ca

    Cheers
  • jensaavedra
    jensaavedra Member Posts: 3
    #20
    RachelleMarie said:

    Hey everyone,
    So far, so good. In remission for 10 months now.
    Freaking out about my next doctors appointment.
    They really are life and death meetings.
    In the meantime, LIFE IS GREAT!!! I have been having
    the best best best year of my life. LIve large, that's all I can say.
    I have a new email
    rachellelapointe@sympatico.ca

    Cheers

    CPU
    Well, no one has posted on this for a while- hopefully that means everyone is in remission.... I am a 35 year old female that has been diagnosed with Squamous Cell Carcinoma- primary source unknown. I was 34 when I was diagnosed, very healthy, and have 3 small children 6, 3, and 1. Here's my story:
    I started back to the gym when my youngest daughter was 6 months trying to lose the baby fat, but when I would run on the treadmill my leg would swell and go numb (also I was short of breath but at the time I just chalked that up to being out of shape). My dr sent me to get ultrasounds of my leg to see if I had blood clots, then for a CT scan, then for a biopsy of a lymph node in my abdomen area, then for a PET scan, then a biopsy of a lymph node in the left side of my neck. At first they thought I had lymphoma, but once the biopsy came back I was diagnosed with squamous cell. I went through tons of testing to find the primary source both at my local oncologist and at MD Anderson Cancer Center, but we didn't find it. I have cancer in my lungs, in my lymph nodes in my neck(left side) abdomen and pelvic area, as well as some noduals in my chest.
    I have had 4 chemo treatments with taxol and carboplatin which knocks me on my butt for 5 days following the treatment, then I am fine- you wouldn't know I am sick aside from not having my hair. Honestly, I try to stay upbeat and determined, but it is hard because I am having a hard time finding anyone else out there with this type of cancer, because my children are so small, and because everything you read out there gives a very bad prognosis. So... I am looking for anyone that is or has went through the same thing I am so we can "share" info on this battle- anything that helps.

    Thanks!

    Jenn
  • myrosielife
    myrosielife Member Posts: 1
    #21
    jensaavedra said:

    CPU
    Well, no one has posted on this for a while- hopefully that means everyone is in remission.... I am a 35 year old female that has been diagnosed with Squamous Cell Carcinoma- primary source unknown. I was 34 when I was diagnosed, very healthy, and have 3 small children 6, 3, and 1. Here's my story:
    I started back to the gym when my youngest daughter was 6 months trying to lose the baby fat, but when I would run on the treadmill my leg would swell and go numb (also I was short of breath but at the time I just chalked that up to being out of shape). My dr sent me to get ultrasounds of my leg to see if I had blood clots, then for a CT scan, then for a biopsy of a lymph node in my abdomen area, then for a PET scan, then a biopsy of a lymph node in the left side of my neck. At first they thought I had lymphoma, but once the biopsy came back I was diagnosed with squamous cell. I went through tons of testing to find the primary source both at my local oncologist and at MD Anderson Cancer Center, but we didn't find it. I have cancer in my lungs, in my lymph nodes in my neck(left side) abdomen and pelvic area, as well as some noduals in my chest.
    I have had 4 chemo treatments with taxol and carboplatin which knocks me on my butt for 5 days following the treatment, then I am fine- you wouldn't know I am sick aside from not having my hair. Honestly, I try to stay upbeat and determined, but it is hard because I am having a hard time finding anyone else out there with this type of cancer, because my children are so small, and because everything you read out there gives a very bad prognosis. So... I am looking for anyone that is or has went through the same thing I am so we can "share" info on this battle- anything that helps.

    Thanks!

    Jenn

    CPU, too
    I am 45 years old and have two daughters (21 and 14).I was diagnosed recently with metastatic adenocarcinoma. I've spent the month of December searching for a primary. My only clue to any illness was that I had some enlarged nodes on the right side of my neck. I thought I might need antibiotics so I went to the doctor. We did an Ultrasound which showed several very large lymph nodes. I had a positive biopsy. I've had a CT of my neck, chest, abdomen, pelvis, PET scan from skull to femurs, MRI of the brain, gastroscopy, and colonoscopy. Bronchoscopy is scheduled for tomorrow. The only things showing up abnormal are the right side lymphnodes going towards my breast bone. My lungs, abdomen, etc. are clear. It's very frustrating not knowing where the cancer is coming from. Even my lab work looks good. As my oncologist said, "On paper, you look like the perfect patient". My slides were sent to Mayo Clinic for a second opinion and they agreed with the pathologist here (Indiana). However, they thought the cells favored lung as a primary. My oncologist is going to treat it as such after I have my bronchoscopy. I stopped reading the stats and focused on finding positive stories. I have always been a person that focused on the positive. But reading all the medical articles had me focusing on the 50% mortality rate instead of the 50% that survive! I want to know what the survivors did so that I can be one of them. I'll let you know the regimen that my oncologists puts me on as soon as she tells me. My prayers and good wishes go out to you and your family!

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