Coping with Adenocarcinoma

jldbarbe
jldbarbe Member Posts: 9
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I am 30 years old and was diagnosed 2 months ago with endo-cervical cancer and had a radical hysterectomy 6 weeks ago. I was able to keep my ovaries and no chemo. I have stage 1B. It all happened so fast and I am still trying to process everything.
I am looking to get info on the odds of it coming back after my hysterectomy. Also my insurance company declined me getting a PET scan and I am in the process of fighting it. Is there a chance that I have it any where else in my body if they caught it early in my cervix? I can't sleep at night knowing that it might be somewhere else in my body. Please help me on what to do.

Comments

  • kmygil
    kmygil Member Posts: 876 Member
    #2
    Hi. I'm so sorry this happened to you. And from my perspective I find it grossly wrong that young people like you have to deal with this. But cancer doesn't discriminate and it impacts everyone, from the patient to the family, to the caregivers. It's true that you don't really have time to process everything when it happens so fast. I'm so glad that you are early stage and that your medical team acted swiftly.

    You are right to fight your insurance company regarding the PET scan. Also, check into your family medical history; a lot of cancers would indicate that you should get a genetics test to see if you are carrying any gene mutations which would indicate more stringent monitoring. Then the insurance company would have to cooperate with more scans.

    That said, the best advice I can give you is to try to think positively. It is useless to stress about IF it is elsewhere or IF there will be a recurrence. LIVE your life! You cannot live it if you are in fear all the time. Talk to someone about your fear; it could be someone close to you, a pastor, a support group or anyone.

    I am on my second go-round (colon cancer last year and endometrial cancer this year), but it is due to a gene mutation my family carries. After surgery and chemo the first time, I am just happy that I probably won't have to have chemo this time, because it was caught early.

    This website has been a wonderful support to me, and I'm sure you will find that true as well. Just know that everyone on this site is pulling for you. It is good to be able to ask anything and to be able to vent in a way that those closest to you might not understand.

    Lots of HUGS! God Bless.
    Kirsten
  • tlva
    tlva Member Posts: 56
    #3
    So sorry to hear your news, but sounds like you have a great prognosis! I am an endometrial cancer survivor, which is also an adenocarcinoma. There is another type of uterine cancer which are sarcomas of the uterus that form on the outside rather than the lining of the uterus. I'm not very familiar with your type, but you can go to the M.D. Anderson Cancer Center site and research the protocol for your cancer.

    My doctors have told me that the government has not yet approved a reliable PET scan that will detect a recurrence in it's ealy stage, so they are virtually useless and expensive, and hard on your body to boot. My sister has them for her breast cancer, but it is proven that they are somewhat reliable for early detection of breast cancer recurrence.

    Are you fighting this because it has been recommended or because you think it's necessary? If your doctor ordered it, try to get a letter from him to your insurance company. There are also information lines that you can call to get more information on wether this is called for or relative to your cancer. Try the NCCN, National Comprehensive Cancer Network, to verify the standards of followup or recommendations.

    Good luck with your health, and belive me it takes a lot of courage, prayer, and research to finally understand everything and come to terms with it all, but it will happen and your will realize what a blessing every day on this old earth really is!

    Love and hugs to you!
    Tammy
  • groundeffect
    groundeffect Member Posts: 639 Member
    #4
    Hi,and welcome to the network. You've gotten some great advice from Kirsten and Tammy-they've expounded more than I could on adenocarcinoma. I, too, was diagnosed with 1B almost five years ago, and was not treated further than surgery for that cancer. It helped me to read Fran Drescher's book "Cancer, Shmancer", mostly for the parts about her decision not to have further treatment. I believe she was staged as 1B, also.

    Please don't worry about cancer cropping up elsewhere in your body. If a person is alive, there's a chance they may develop cancer somewhere. Focus more on your good fortune of having it found with such a low stage, and maybe try to make yourself as healthy as possible.

    If you find yourself worrying excessively, you might want to talk to your doctor about it. There's no shame in taking something like a mild anti-depressant to help yourself for a while. My doctor prescribed Zoloft in a low dose form, and I think it's helped me tremendously without some of the bad side effects I had taking a different drug some years ago.

    This is a great sounding board, but don't hesitate to find out if there's a "live" support group nearby that you could meet with-your nearest American Cancer Society could refer you to one, I'm sure.
  • jldbarbe
    jldbarbe Member Posts: 9
    #5
    kmygil said:

    Hi. I'm so sorry this happened to you. And from my perspective I find it grossly wrong that young people like you have to deal with this. But cancer doesn't discriminate and it impacts everyone, from the patient to the family, to the caregivers. It's true that you don't really have time to process everything when it happens so fast. I'm so glad that you are early stage and that your medical team acted swiftly.

    You are right to fight your insurance company regarding the PET scan. Also, check into your family medical history; a lot of cancers would indicate that you should get a genetics test to see if you are carrying any gene mutations which would indicate more stringent monitoring. Then the insurance company would have to cooperate with more scans.

    That said, the best advice I can give you is to try to think positively. It is useless to stress about IF it is elsewhere or IF there will be a recurrence. LIVE your life! You cannot live it if you are in fear all the time. Talk to someone about your fear; it could be someone close to you, a pastor, a support group or anyone.

    I am on my second go-round (colon cancer last year and endometrial cancer this year), but it is due to a gene mutation my family carries. After surgery and chemo the first time, I am just happy that I probably won't have to have chemo this time, because it was caught early.

    This website has been a wonderful support to me, and I'm sure you will find that true as well. Just know that everyone on this site is pulling for you. It is good to be able to ask anything and to be able to vent in a way that those closest to you might not understand.

    Lots of HUGS! God Bless.
    Kirsten

    Thank you so much for your kind words. I will definetly take your advise.
    Thanks
    Jessica
  • jldbarbe
    jldbarbe Member Posts: 9
    #6
    tlva said:

    So sorry to hear your news, but sounds like you have a great prognosis! I am an endometrial cancer survivor, which is also an adenocarcinoma. There is another type of uterine cancer which are sarcomas of the uterus that form on the outside rather than the lining of the uterus. I'm not very familiar with your type, but you can go to the M.D. Anderson Cancer Center site and research the protocol for your cancer.

    My doctors have told me that the government has not yet approved a reliable PET scan that will detect a recurrence in it's ealy stage, so they are virtually useless and expensive, and hard on your body to boot. My sister has them for her breast cancer, but it is proven that they are somewhat reliable for early detection of breast cancer recurrence.

    Are you fighting this because it has been recommended or because you think it's necessary? If your doctor ordered it, try to get a letter from him to your insurance company. There are also information lines that you can call to get more information on wether this is called for or relative to your cancer. Try the NCCN, National Comprehensive Cancer Network, to verify the standards of followup or recommendations.

    Good luck with your health, and belive me it takes a lot of courage, prayer, and research to finally understand everything and come to terms with it all, but it will happen and your will realize what a blessing every day on this old earth really is!

    Love and hugs to you!
    Tammy

    Hello Tammy,
    My doctor told me the same thing about my cancer and a PET scan and that it is hard to detect early stages of that cancer. I guess the reason for my wanting a PET scan is because cancer runs in my family and because I already have bad cells in my body, it could be somewhere else. I don't know much about cancer, but I would think if you have it in one place that it could come up somewhere else. I don't understand why any doctor wouldn't want to double check.

    Thanks for your support. I need plenty.
    Jessica
  • jldbarbe
    jldbarbe Member Posts: 9
    #7
    groundeffect said:

    Hi,and welcome to the network. You've gotten some great advice from Kirsten and Tammy-they've expounded more than I could on adenocarcinoma. I, too, was diagnosed with 1B almost five years ago, and was not treated further than surgery for that cancer. It helped me to read Fran Drescher's book "Cancer, Shmancer", mostly for the parts about her decision not to have further treatment. I believe she was staged as 1B, also.

    Please don't worry about cancer cropping up elsewhere in your body. If a person is alive, there's a chance they may develop cancer somewhere. Focus more on your good fortune of having it found with such a low stage, and maybe try to make yourself as healthy as possible.

    If you find yourself worrying excessively, you might want to talk to your doctor about it. There's no shame in taking something like a mild anti-depressant to help yourself for a while. My doctor prescribed Zoloft in a low dose form, and I think it's helped me tremendously without some of the bad side effects I had taking a different drug some years ago.

    This is a great sounding board, but don't hesitate to find out if there's a "live" support group nearby that you could meet with-your nearest American Cancer Society could refer you to one, I'm sure.

    Thanks.
    I will go get the book this week. I was thinking about getting it.
    Also I have contacted a support group in my area and will start in 2 weeks.
    Thank you for your support.
    Jessica
  • tlva
    tlva Member Posts: 56
    #8
    jldbarbe said:

    Hello Tammy,
    My doctor told me the same thing about my cancer and a PET scan and that it is hard to detect early stages of that cancer. I guess the reason for my wanting a PET scan is because cancer runs in my family and because I already have bad cells in my body, it could be somewhere else. I don't know much about cancer, but I would think if you have it in one place that it could come up somewhere else. I don't understand why any doctor wouldn't want to double check.

    Thanks for your support. I need plenty.
    Jessica

    Hi Jessica,

    You might be better off, for your peace of mind, to go the route of genetics counseling. My family is also full of cancer, but the only three alike, were my mother, grandfather and a cousin who all died of lung cancer. But they were also heavy smokers. Only if there is a thread of similar cancers, will the doctors have a justified reason to look further.

    My family was full of sporadic cancers, mostly related to advanced age or enviroment...hence the smoking... so that was at least calming to me to know that I wasn't genetically predisposed to be at greater risk for other cancers. I did have my colonoscopy early since my cancer is related to colon cancer, but it was fine.

    Please know that cervical cancer is highly treatable when deteced early as yours was and try not to worry so much. I had absolutely no symptoms or signs so my diagnosis floored me. I guess the best way to put it is, that no one is guaranteed tomorrow. We could be hit by a bus stepping off the curb. But you at least have the opportunity to do something about this and a lot of people aren't that lucky. Keep doing your research and asking questions. You will find peace, just don't waste energy trying to change things we have no control over.

    Love to you,
    Tammy
  • jldbarbe
    jldbarbe Member Posts: 9
    #9
    tlva said:

    Hi Jessica,

    You might be better off, for your peace of mind, to go the route of genetics counseling. My family is also full of cancer, but the only three alike, were my mother, grandfather and a cousin who all died of lung cancer. But they were also heavy smokers. Only if there is a thread of similar cancers, will the doctors have a justified reason to look further.

    My family was full of sporadic cancers, mostly related to advanced age or enviroment...hence the smoking... so that was at least calming to me to know that I wasn't genetically predisposed to be at greater risk for other cancers. I did have my colonoscopy early since my cancer is related to colon cancer, but it was fine.

    Please know that cervical cancer is highly treatable when deteced early as yours was and try not to worry so much. I had absolutely no symptoms or signs so my diagnosis floored me. I guess the best way to put it is, that no one is guaranteed tomorrow. We could be hit by a bus stepping off the curb. But you at least have the opportunity to do something about this and a lot of people aren't that lucky. Keep doing your research and asking questions. You will find peace, just don't waste energy trying to change things we have no control over.

    Love to you,
    Tammy

    Tammy,
    You are so right. Thanks for the wonderful advise. I need to have peace about this whole situation, and thank God that I made it through this alive. I am seeing a therapist for this, and it is helping cope with it. I wish you a peaceful and happy life too.
    Jessica
  • Felixthecat
    Felixthecat Member Posts: 37
    #10
    Endometrial Cancer Trial Drug Now Free
    http://www.cancerwise.org/may_2005/display.cfm?id=1A29F5A7-F64B-4656-9FF3A93B491655CF&method=displayFull&color=green
    Women with endometrial cancer will no longer have to pay for a drug being studied in a hormonal therapy clinical trial. Thanks to funding from a $10.4 million Specialized Program of Research Excellence (SPORE) grant, M. D. Anderson study investigators hope to recruit more women in a Phase II clinical trial for Mifepristone as a treatment for specific types of endometrial cancer. Before the SPORE funding became available from the National Cancer Institute, study participants had to pay $500 a month to cover the costs of the drug.The goal of the study is to determine the potential benefit of Mifepristone for recurrent or advanced endometrial cancer patients with tumors that are sensitive to estrogen (progesterone-receptor positive) or patients with low-grade endometrial stromal sarcoma (LGESS), a less common cancer that develops in the supporting connective tissue of the endometrium....(more info via link above).

    Details of the Clinical Trial:
    Mifepristone for Patients With Endometrial Cancer and LGESS
    This study is currently recruiting participants. Verified by M.D. Anderson Cancer Center, July 2007
    http://clinicaltrials.gov/ct2/show/NCT00505739?cond="Carcinoma,+Endometrioid"&rank=3
    Phase II Study of Mifepristone (RU-486) in the Treatment of PR Positive Advanced/Recurrent Endometrioid Adenocarcinoma and Low Grade Endometrial Stromal Sarcoma (LGESS)
  • Unknown
    Unknown
    #11
    Hi, I too just had a radical hysterectomy 1-29-08. I had a pet/ct with great results so there is hope.I hope you are doing well now. I'm 39 years old and this is my first time on csn. I was diagnosed with squamous cell carcinoma and adenocarcinoma. Did your stomach feel like a achy numb sometime spasms? Its such a weird feeling I was wondering if it is normal.

    Thanks Donna
  • KellyDMB
    KellyDMB Member Posts: 5
    #12
    jldbarbe said:

    Thanks.
    I will go get the book this week. I was thinking about getting it.
    Also I have contacted a support group in my area and will start in 2 weeks.
    Thank you for your support.
    Jessica

    Jessica,
    How are you doing
    Jessica,
    How are you doing now?
    -Kelly

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