Rare Cancer Diagnosis

BriWri
BriWri Member Posts: 8
edited March 2014 in Rare and Other Cancers #1
I just signed up and it is really great that I finally have a place where I can talk about my diagnoses without having to go into a ten minute explanation. Cancer is a very alienating experience as it is, having a rare diagnoses is even more so, I feel. I have not only never met another person with my diagnoses (Mixed-Cell Mediastinal Germ Cell Tumor), I have never met another doctor who has treated it. I know everyone going through cancer is in the same boat on some level but it would have helpful to feel like I wasn't such an anomaly. I hope I don't come across wrong but there isn't going to be a "Mixed-Cell Mediastinal Germ Cell Tumors Walk-A-Thon" any time soon. Has anyone else felt this way? I don't mean to belittle anyone else's story and I certainly don't wish there were more people with this diagnoses (just typing that gives me the willies), I just feel this could be something that other people have felt.

Comments

  • LindaDawn
    LindaDawn Member Posts: 27
    #2
    Rare may not be worse
    I have felt exactly like you have described. I swear I will scream iif I hear "I have never seen this before" one more time. With no protocols in place for my cancer (undifferentiated embroyanal sarcoma of the liver) the Docs are making their best guess. I would have preferred to use my one long shot to win the lottery. What I have come to is; that rare does not necessarily mean worse, it means unknown. I have chosen to believe that I will be a case study that will provide hope for the next unlucky patient that trips into this diagnosis.
  • bangormom
    bangormom Member Posts: 58
    #3
    Hi,
    I think I can understand
    Hi,

    I think I can understand what your thinking, I have a rare form of kidney cancer, it called renal cell carcinoma papillary type 2. 85% of rcc is clear cell, and such treatments are targeted to clear cell as opposed to papillary type 2. The doctors haven't found anything that is going to work for me, and to top it off know one has heard of it. There are no 'pink' ribbons or 3 day walks, there isn't t-shirts or or companies that donate a portion of their profits to research. So even tho your cancer is more rare then mine I can understand. I wish all research $'s could be devided up equally so we could all stand a chance for a cure. How ever I am glad for the advances they have made in research for other cancers, less children losing their mom or dad to cancer is always a good thing. My daughters friend lost her father in november to pancreatic cancer he was only 48, but her other friends mom had breast cancer and she is a 5 yr survivor. So I have seen both sides and I pray they can find something that will work for you and others like us, after all we are all gods children, and we have families that love us too. I just don't think one cancer should be deemed more important then another one. I pray for all who are fighting this battle and may we all win.

    Maryann
  • lupeann
    lupeann Member Posts: 9
    #4
    Hang in There!
    I hear you and I understand. I had ovarian cancer. Seems simple enough to find information, right? Wrong! I have the rare unusual type - dysgerminoma, mixed germ cell. Even with the support of fmaily and friends I feel like no one understands. Have you tried the rare cancer alliance? Hang in there! E-mail me if I can help. lupe_ann@yahoo.com
  • BriWri
    BriWri Member Posts: 8
    #5
    lupeann said:

    Hang in There!
    I hear you and I understand. I had ovarian cancer. Seems simple enough to find information, right? Wrong! I have the rare unusual type - dysgerminoma, mixed germ cell. Even with the support of fmaily and friends I feel like no one understands. Have you tried the rare cancer alliance? Hang in there! E-mail me if I can help. lupe_ann@yahoo.com

    Thanks
    It's great to have a forum like this. It's nice to know somebody else is out there who I can talk about these things that might be too uncomfortable for other people to hear. I really appreciate it.
  • RichOK
    RichOK Member Posts: 8
    #6
    BriWri said:

    Thanks
    It's great to have a forum like this. It's nice to know somebody else is out there who I can talk about these things that might be too uncomfortable for other people to hear. I really appreciate it.

    Best to you
    I also have a rare cancer, although not so rare as yours. My surgeon, with 18 years in practice, had seen only two other cases. Very comforting, huh? And, not only is it rare, it's in a place where it almost never is.

    I wish you the best. It's a different feeling, having something rare, rather than something far more common; my wife is a 4 year survivor of thyroid cancer.
  • AustinMyAngel
    AustinMyAngel Member Posts: 2
    #7
    I get that
    I felt the same way when my husband was diagnosed. Started out as "a mass", then went to "I think it's sarcoma" then "Well, maybe Lymphoma", then "You had a better chance of winning the powerball than getting this...it's malignant paraganglioma and we have never heard of it before." Great. My husband was 29 years old when he was diagnosed and I was 25.

    It'll be 4 years this coming December since we heard those horrible words. Passed around to different doctors. Even had one doctor say "I don't know what to do, so we'll try this." No, we won't TRY anything unless you know what you're dealing with.

    One thing I've learned through the battle with my husband's cancer is no matter how rare, no matter how difficult...just no matter what, don't give up and don't let the cancer win by letting it take over your life. Yea, we see doctors all the time, and our doctors probably have more money than Fort Knox with all the bills we've had to pay...but even if my husband died tomorrow we'd be survivors because we don't let it own us.

    Cancer does suck. Rare cancer sucks (quite possibly) even more. But I've come to feel that even though I've only met 2 other people, and have spoken with one other person other than that, with my husband's cancer, they're all so different and yet so much the same. All have different degrees of disease, different symptoms, and even more important different outlooks. We even have to fly from Indiana to California just to see a doctor who knows something lol We just try not to think of how much it sucks and how much we want to scream. We just try to remain somewhat normal for our kids and ourselves, and go through the ropes of everyday life. Cancer is just another hurdle.

    And for the record, I will say that I still get irritated when I go to buy one of those rubber bracelets and can't find a bracelet that even slightly would relate to my husband's cancer lol
  • bangormom
    bangormom Member Posts: 58
    #8
    AustinMyAngel said:

    I get that
    I felt the same way when my husband was diagnosed. Started out as "a mass", then went to "I think it's sarcoma" then "Well, maybe Lymphoma", then "You had a better chance of winning the powerball than getting this...it's malignant paraganglioma and we have never heard of it before." Great. My husband was 29 years old when he was diagnosed and I was 25.

    It'll be 4 years this coming December since we heard those horrible words. Passed around to different doctors. Even had one doctor say "I don't know what to do, so we'll try this." No, we won't TRY anything unless you know what you're dealing with.

    One thing I've learned through the battle with my husband's cancer is no matter how rare, no matter how difficult...just no matter what, don't give up and don't let the cancer win by letting it take over your life. Yea, we see doctors all the time, and our doctors probably have more money than Fort Knox with all the bills we've had to pay...but even if my husband died tomorrow we'd be survivors because we don't let it own us.

    Cancer does suck. Rare cancer sucks (quite possibly) even more. But I've come to feel that even though I've only met 2 other people, and have spoken with one other person other than that, with my husband's cancer, they're all so different and yet so much the same. All have different degrees of disease, different symptoms, and even more important different outlooks. We even have to fly from Indiana to California just to see a doctor who knows something lol We just try not to think of how much it sucks and how much we want to scream. We just try to remain somewhat normal for our kids and ourselves, and go through the ropes of everyday life. Cancer is just another hurdle.

    And for the record, I will say that I still get irritated when I go to buy one of those rubber bracelets and can't find a bracelet that even slightly would relate to my husband's cancer lol

    You have a great attitude, I
    You have a great attitude, I love it. I let get me when I was first dx'd and sometimes still do, it's a tough battle to stay positive. This is a good place to come if you ever need to vent. The irritation over the bracelets wears off after a while, espeacily if you realize they're going out of style!lol

    Maryann
  • waspcracker
    waspcracker Member Posts: 8
    #9
    BriWri, how are you doing?
    I have anal cancer (uncommon). I want to start a brown ribbon campaign.

    After 4 months of grueling treatment, I'm in the 15% who were not cured. Sucks big time. I also get the "Wow, your condition is really rare! Let's try this...." I'm on my way to Sloan-Kettering in NYC for a 3rd opinion. I wish you the best.
  • BriWri
    BriWri Member Posts: 8
    #10
    waspcracker said:

    BriWri, how are you doing?
    I have anal cancer (uncommon). I want to start a brown ribbon campaign.

    After 4 months of grueling treatment, I'm in the 15% who were not cured. Sucks big time. I also get the "Wow, your condition is really rare! Let's try this...." I'm on my way to Sloan-Kettering in NYC for a 3rd opinion. I wish you the best.

    Glad to report
    Had my quarterly check up and I'm clean as a whistle. I love your ribbon campaign! I hope NYC works out for you. I guess I had the good luck (?!) of living just outside of Boston. You know, you go to Texas for BBQ, Colorado for skiing and Massachusetts for medical treatment!!! I am all for finding the best and the brightest working on you. Even in Boston I had a half a dozen doctors scratching their head before giving me a diagnosis. The doctor who finally diagnosed me did it by giving me a PREGNANCY TEST!?!?!! The tumor I had gives off the same hormonal markers as a growing fetus (?!?!) So now you all can say you know of a man who passed a pregnancy test!

    Best of luck to you. I found my sense of humor helped me through a lot of my darkest days. Life is bizarre enough WITHOUT cancer, you really need all of the help you can get once you've joined this crappy ol' club of ours. Keep checking in, OK? It's a complicated thing and being able to gripe about this stuff without worrying about your audience's response is a pretty helpful thing.

    On a final note, one of the most useful thing my onc ever said to me (The same guy who gave me the pregnancy test) was that you shouldn't get too caught up in statistics because in every person's experience things are either 100% of 0%, everything else is speculation. Every case is unique and you never know what the future holds. I guess this is something we should all know in the first place but some of us need a little less subtle reminders than others! ;)

    -B
  • harleyrider
    harleyrider Member Posts: 6
    #11
    waspcracker said:

    BriWri, how are you doing?
    I have anal cancer (uncommon). I want to start a brown ribbon campaign.

    After 4 months of grueling treatment, I'm in the 15% who were not cured. Sucks big time. I also get the "Wow, your condition is really rare! Let's try this...." I'm on my way to Sloan-Kettering in NYC for a 3rd opinion. I wish you the best.

    I love the brown ribbon
    I love the brown ribbon campaign idea. I too had anal cancer - it was grueling and so far cancer free (1.5 years). Check up again in June - terrified - but I live one day at a time. Never know what will happen.

    There is no "group" there is no "click" and frankly - the other day when I saw a bottle of wine with a pink ribbon on it called Hope I thought - well now I can drink myself through everything if there really is "hope in a bottle!" LOL Not really going to do that though.


    Brown ribbon - how appropriate.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #12
    harleyrider said:

    I love the brown ribbon
    I love the brown ribbon campaign idea. I too had anal cancer - it was grueling and so far cancer free (1.5 years). Check up again in June - terrified - but I live one day at a time. Never know what will happen.

    There is no "group" there is no "click" and frankly - the other day when I saw a bottle of wine with a pink ribbon on it called Hope I thought - well now I can drink myself through everything if there really is "hope in a bottle!" LOL Not really going to do that though.


    Brown ribbon - how appropriate.

    wierd stuff
    I had Difuse Large B-Cell Lympohma. A rather common form of cancer. Except it was in my face traveling along the facial nerves and bones. All my teeth felt like root canals were needed. It took the removal of a mass with tenticles, 7 biopsies and 4 months to figure out what the heck was going on. The doctors thought it was cool because they could write about it in a medical journal. A facial mass with veins, bone fragments, fatty tissue and tenticles seemed rather gross to me and special to them. My wife thought I had passed away when my biopsy turned into a 3 1/2 hour operation. They used it to train new Oncologists about not always looking for a certain type of cancer in specific parts of the body. At least some good came of it before they hit me with massive doses of Chop+Rituxin and 25 radiation treatments to my head. My head looked like a burnt up pumpkin when they were finished with me. But 6 years later I am still here and I agree that a sense of humor is a great thing. I would like a red bracelet that would match my face. Slickwilly
  • wishing_onstars
    wishing_onstars Member Posts: 18 Member
    #13
    BriWri said:

    Glad to report
    Had my quarterly check up and I'm clean as a whistle. I love your ribbon campaign! I hope NYC works out for you. I guess I had the good luck (?!) of living just outside of Boston. You know, you go to Texas for BBQ, Colorado for skiing and Massachusetts for medical treatment!!! I am all for finding the best and the brightest working on you. Even in Boston I had a half a dozen doctors scratching their head before giving me a diagnosis. The doctor who finally diagnosed me did it by giving me a PREGNANCY TEST!?!?!! The tumor I had gives off the same hormonal markers as a growing fetus (?!?!) So now you all can say you know of a man who passed a pregnancy test!

    Best of luck to you. I found my sense of humor helped me through a lot of my darkest days. Life is bizarre enough WITHOUT cancer, you really need all of the help you can get once you've joined this crappy ol' club of ours. Keep checking in, OK? It's a complicated thing and being able to gripe about this stuff without worrying about your audience's response is a pretty helpful thing.

    On a final note, one of the most useful thing my onc ever said to me (The same guy who gave me the pregnancy test) was that you shouldn't get too caught up in statistics because in every person's experience things are either 100% of 0%, everything else is speculation. Every case is unique and you never know what the future holds. I guess this is something we should all know in the first place but some of us need a little less subtle reminders than others! ;)

    -B

    my fiance has extragonadal mediastinal germ cell tumor -yolk sac
    He was diagnosed with extragonadal mediastinal germ cell tumor (yolk sac) 4 weeks ago. They said he had a high level of HCG which is the hormone that pregnat woment produce. So I can understand that. So far the chemo has not worked, the tumor in his chest is the size of a grapefruit, it collapsed his left lung and is putting pressure on his heart and causing him to have pericardial effusion (fluid around his heart). I was wondering how your cancer reacted to chemo, if it took a little bit or not. I don't know about the mixed cell but everything else you said is the same as my fiance's. He is on a ventilator now and has been in the hospital for 4 weeks. They are starting him on a new regiment tomorrow where he takes 5 days of vinblastin sulfate, cisplatin, mesna and ifex then waits 20 days and does 5 more days.

    Hope you still check this post... I was hoping I could find someone that I can get to relate to his cancer. They say it is really rare.
  • Chibshman
    Chibshman Member Posts: 2
    #14
    wishing_onstars said:

    my fiance has extragonadal mediastinal germ cell tumor -yolk sac
    He was diagnosed with extragonadal mediastinal germ cell tumor (yolk sac) 4 weeks ago. They said he had a high level of HCG which is the hormone that pregnat woment produce. So I can understand that. So far the chemo has not worked, the tumor in his chest is the size of a grapefruit, it collapsed his left lung and is putting pressure on his heart and causing him to have pericardial effusion (fluid around his heart). I was wondering how your cancer reacted to chemo, if it took a little bit or not. I don't know about the mixed cell but everything else you said is the same as my fiance's. He is on a ventilator now and has been in the hospital for 4 weeks. They are starting him on a new regiment tomorrow where he takes 5 days of vinblastin sulfate, cisplatin, mesna and ifex then waits 20 days and does 5 more days.

    Hope you still check this post... I was hoping I could find someone that I can get to relate to his cancer. They say it is really rare.

    wow finally someone
    who had something similar to me. mine was not differentiated but i did do almost the same routine and it gets brutal. etoposide 800 mg, ifosphomide 2400, and cisplatin 400 and mesna running in the other 21 hours of the day. i did six rounds of it with one week in and then two weeks off. then i did 35 days of radiation and a one day a week chemo during that time. It did work pretty well for me, i am still here and i get scanned on black friday 2009. I have been out of treatment since Dec 08. but they want to watch me closely because it's unique and they never knew which kind of cells it was. i guess i'll find out what happens next, but i can only worry about now and that is i can leave work today and meet my brother for a jog.
  • lopezsantana
    lopezsantana Member Posts: 2
    #15
    wishing_onstars said:

    my fiance has extragonadal mediastinal germ cell tumor -yolk sac
    He was diagnosed with extragonadal mediastinal germ cell tumor (yolk sac) 4 weeks ago. They said he had a high level of HCG which is the hormone that pregnat woment produce. So I can understand that. So far the chemo has not worked, the tumor in his chest is the size of a grapefruit, it collapsed his left lung and is putting pressure on his heart and causing him to have pericardial effusion (fluid around his heart). I was wondering how your cancer reacted to chemo, if it took a little bit or not. I don't know about the mixed cell but everything else you said is the same as my fiance's. He is on a ventilator now and has been in the hospital for 4 weeks. They are starting him on a new regiment tomorrow where he takes 5 days of vinblastin sulfate, cisplatin, mesna and ifex then waits 20 days and does 5 more days.

    Hope you still check this post... I was hoping I could find someone that I can get to relate to his cancer. They say it is really rare.

    UPdate on your fiance and info on MY fiance
    You are not alone as I too am caring for my fiance that was diagonsed with extragonadal germ cell tumor in his chest originally in Feb 2009. He went through 6 months of chemo and then a major surgery that affected his lungs and had to be partially removed. The surgery was im September 2009. By his first check up that following November 2009, they saw his tumor growing again. It took them exactly 1yr to determine that it was cancerous, so November 2010 he started chemo again and this time it is worse. His doctor is a very good doctor, but doesnt have much expierence with this rare cancer. He even consults with Cancer Care Alliance and the Doctor in Indiana that specializes in this. He agreed to do the stemcell treatment in order to give him very high doses of chemo at once if that is what we really wanted but he said that all the other doctors said to not do it because they feel its not worth putting him through that suffering with only a 1% chance of survival because this is a relasps and the cells are resistant to chemo. He said he wanted it and is now in the process of preparing for his stemcell transplant. We choose this regardless of the 1% chance because when we asked his doctor what the other options were, he said 0% chance of survival and they would just maintain it until it took over his body and spread......well we would rather go through hell for that 1% chance then none!

    I just wanted to see how others were treated and if they relapsed and if so did they survive and for how long???? How is your fiance???

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