I got my diagnosis on April 15 and I need your help

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Cucu me
Cucu me Member Posts: 213 Member

 


Hi everyone!

On April 15 I was diagnosed with Endometrial adenocarcinoma after D&C.
Reading this forum is giving me hope.
I want to thank you for sharing and helping and to wish you success in this fight.

My few questions are:

1. Do I need another referral from my Gynecologist if I decide to go to another Oncologist? She gave me one, but I'm thinking of going to different Hospital. The whole situation with referrals is not quite clear for me yet.

2.I quit my job on Friday and now I'm waiting to receive the papers from Cobra in order to get Continues Health Insurance. I'm just afraid not to have a gap between the recent one I had and the continues one. Also are the insurances cover most of the expenses. I guess I'll have plenty of it.

3. Is it normal to wait for days, weeks or months for appointments,treatments, surgery......

I don't have experience with Hospitals. I thought I'm in good health. I had and I guess still have few myomas(Uterine fibroids) and I was thinking that my complains (spotting, bleeding not much or often, pain during sex...) are caused by them. Last Pap test and ultrasound I had about an year and half ago. The Doctor then said that the myomas are smaller, than the previous year. I'm 51 years old and in menopause, so I was thinking, that the fibroids could shrink with the years and the complains will stop as well. I was very wrong...

I appreciate any word from you and thank you so very much.



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Comments

  • DrienneB
    DrienneB Member Posts: 182
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    April 15 Diagnosis

    Cuculigata,

    I'm sorry for the diagnosis. I am 53 now, and my diagnosis of uterine carcinosarcoma came at age 51. It's a shock, for sure. 

    I also took advantage of COBRA for a couple of years after I left a job. it is probably good not to burden yourself with the additional stress of finding a new insurance provider at this time. If your med. insurance is good, it will probably pay for much. I have a PPO that I pay for out of pocket as I am self-employed. It is expensive (I guess everyone's insurance IS!), has a high deductable, and pays 70% after deductable is met. What I didn't know a couple of years ago, is that if I use "preffered" or in-system doctors, many of the expenses are taken care of completely by the insurance company.

    I also don't know everything about the issue of referals. I believe you should choose any specialist or surgeon you want and try to drop the feeling of being bound by the process. If you know in fact that you want to see a different specialist, you might want to just ask your insurance provider directly about its provisions regarding the particular hospital or doctor.

    Appointments can take a long time to get. Don't panic, though, about getting your surgery immediately. (That is what the American Cancer Society advises.) Just do the best you can to set your appointments and get your records and lab results to the specialist. Also, I personally wish I had taken the time to get another opinion from a second gynecological oncologist before rushing into surgery.  I had a lot of trust and was not informed of all of the risks or another surgical approach (a quarter mile away at Stanford Med. Ctr.).

    You're wise to reach out and talk to others. I am very private and it has not served me very well as far as health issues go. Wishing you grace and calm to meet each challenge as it comes.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    cuculigata, please take a

    cuculigata, please take a breath. 

    First, I think any of the women here would recommend getting treated by a gynecological oncologist.  They specialize in 'below the belt' cancers and you will want the name of one of these types of doctors. 

    I am sorry I can't help with any information on Cobra.  Even with insurance I think we have all experienced different things covered.  PET vs CT. Wigs vs. no wigs....I thought it all comes down to what was negotiated with the company.  I really don't know a LOT about it but have spoken to our benefits office on some of the complexities out there. 

    Finally, I don't think waiting a few weeks is unusual.  I know back in 2012 I found out on 4/5, was supposed to see the gyn onc on 4/17 but was able to get in on 4/11.  Surgery wasn't until 4/29 and then there were tests and a CT before the surgery.  That was my experience.  I know when I DID meet the doctor on 4/11 I asked him "what are you doing tomorrow?"  I know I was ready to go to surgery immediately.

    Again, take the second opinion if it is with a gynecological oncologist. 

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Cuculigata, I am sorry to meet you under these circumstances.

     

     

    You have come to the right place, as there are women here who can help you through this process . I am so very sorry that you had to find this board.  When I was told that I had adenocarcinoma following a Pap test, my gynecologist referred me immediately to a gynecologic oncologist. I had an appointment when I left her office as she made the arrangements for me (I was in a state of shock). These specialist are trained to treat below the belt female cancers. It is a must that you see one. You will likely have a hysterectomy to remove your uterus and further surgery to remove your Fallopean tubes, ovaries and a sampling of your lymph nodes. A pelvic wash will be done as well to see if there is cancer in your peritoneal cavity. From the time that I discovered minimal spotting to my hysterectomy was only 1 month. I was diagnosed with metastatic uterine papillary serous adenocarcinoma, a grade 3 cancer, stage 3a. This was followed with 6 chemotherapy cycles of carboplatin and taxol. You should not be waiting weeks or months to get treatment.

    Given the type of uterine cancer I had plus the advanced stage in which I was diagnosed, I sought not just one opinion but ultimately three opinions. I am glad that I did so. You must be your own advocate!

    The Affordable Care Act changed how insurance companies treat customers. They can't discriminate against you because you have had a gap in insurance coverage nor can they refuse to cover a pre - existing condition. I always thought that was wrong!

    When I was first diagnosed, my BCBS did not cover all the treatment expenses, including surgery, labs, CAT scans, doctor's appointments and chemotherapy. I'm not sure how much my first year of treatment cost me out-of-pocket but it was probably about $3,000. Since my chemo treatment ended 13 months ago, My medical expenses have dropped significantly. 

    I hope this is helpful. After surgery, you will meet with your doctor to review the pathology report. That's when you will be told details about your cancer, including type, grade and stage. Take someone with you, especially in the beginning, to all your doctor's appts and write your questions down and bring that with you as well. I suggest that you get a copy of both your operative report and your pathology report for your own records.

    Being diagnosed with cancer was a traumatic experience but as time has gone by I have learned to cope. I am in remission ( called NED for no evidence of disease) and hope it will last a very long time. 

    I am praying that treatment goes well for you, cuculigata.

    Cathy

  • Cucu me
    Cucu me Member Posts: 213 Member
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    DrienneB said:

    April 15 Diagnosis

    Cuculigata,

    I'm sorry for the diagnosis. I am 53 now, and my diagnosis of uterine carcinosarcoma came at age 51. It's a shock, for sure. 

    I also took advantage of COBRA for a couple of years after I left a job. it is probably good not to burden yourself with the additional stress of finding a new insurance provider at this time. If your med. insurance is good, it will probably pay for much. I have a PPO that I pay for out of pocket as I am self-employed. It is expensive (I guess everyone's insurance IS!), has a high deductable, and pays 70% after deductable is met. What I didn't know a couple of years ago, is that if I use "preffered" or in-system doctors, many of the expenses are taken care of completely by the insurance company.

    I also don't know everything about the issue of referals. I believe you should choose any specialist or surgeon you want and try to drop the feeling of being bound by the process. If you know in fact that you want to see a different specialist, you might want to just ask your insurance provider directly about its provisions regarding the particular hospital or doctor.

    Appointments can take a long time to get. Don't panic, though, about getting your surgery immediately. (That is what the American Cancer Society advises.) Just do the best you can to set your appointments and get your records and lab results to the specialist. Also, I personally wish I had taken the time to get another opinion from a second gynecological oncologist before rushing into surgery.  I had a lot of trust and was not informed of all of the risks or another surgical approach (a quarter mile away at Stanford Med. Ctr.).

    You're wise to reach out and talk to others. I am very private and it has not served me very well as far as health issues go. Wishing you grace and calm to meet each challenge as it comes.

     

    I got my diagnosis on April 15 and I need your help

    DrienneB,

    Thanks so much for your prompt replay. It helps me for sure.

    I'll post what I'm doing next as soon as I know.

     

  • Cucu me
    Cucu me Member Posts: 213 Member
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    cuculigata, please take a

    cuculigata, please take a breath. 

    First, I think any of the women here would recommend getting treated by a gynecological oncologist.  They specialize in 'below the belt' cancers and you will want the name of one of these types of doctors. 

    I am sorry I can't help with any information on Cobra.  Even with insurance I think we have all experienced different things covered.  PET vs CT. Wigs vs. no wigs....I thought it all comes down to what was negotiated with the company.  I really don't know a LOT about it but have spoken to our benefits office on some of the complexities out there. 

    Finally, I don't think waiting a few weeks is unusual.  I know back in 2012 I found out on 4/5, was supposed to see the gyn onc on 4/17 but was able to get in on 4/11.  Surgery wasn't until 4/29 and then there were tests and a CT before the surgery.  That was my experience.  I know when I DID meet the doctor on 4/11 I asked him "what are you doing tomorrow?"  I know I was ready to go to surgery immediately.

    Again, take the second opinion if it is with a gynecological oncologist. 

    I got my diagnosis on April 15 and I need your help

    NoTimeForCancer,

    Thank you for your responce.

    I'll listen to all of you and hope for all of us.

  • Cucu me
    Cucu me Member Posts: 213 Member
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    Abbycat2 said:

    Cuculigata, I am sorry to meet you under these circumstances.

     

     

    You have come to the right place, as there are women here who can help you through this process . I am so very sorry that you had to find this board.  When I was told that I had adenocarcinoma following a Pap test, my gynecologist referred me immediately to a gynecologic oncologist. I had an appointment when I left her office as she made the arrangements for me (I was in a state of shock). These specialist are trained to treat below the belt female cancers. It is a must that you see one. You will likely have a hysterectomy to remove your uterus and further surgery to remove your Fallopean tubes, ovaries and a sampling of your lymph nodes. A pelvic wash will be done as well to see if there is cancer in your peritoneal cavity. From the time that I discovered minimal spotting to my hysterectomy was only 1 month. I was diagnosed with metastatic uterine papillary serous adenocarcinoma, a grade 3 cancer, stage 3a. This was followed with 6 chemotherapy cycles of carboplatin and taxol. You should not be waiting weeks or months to get treatment.

    Given the type of uterine cancer I had plus the advanced stage in which I was diagnosed, I sought not just one opinion but ultimately three opinions. I am glad that I did so. You must be your own advocate!

    The Affordable Care Act changed how insurance companies treat customers. They can't discriminate against you because you have had a gap in insurance coverage nor can they refuse to cover a pre - existing condition. I always thought that was wrong!

    When I was first diagnosed, my BCBS did not cover all the treatment expenses, including surgery, labs, CAT scans, doctor's appointments and chemotherapy. I'm not sure how much my first year of treatment cost me out-of-pocket but it was probably about $3,000. Since my chemo treatment ended 13 months ago, My medical expenses have dropped significantly. 

    I hope this is helpful. After surgery, you will meet with your doctor to review the pathology report. That's when you will be told details about your cancer, including type, grade and stage. Take someone with you, especially in the beginning, to all your doctor's appts and write your questions down and bring that with you as well. I suggest that you get a copy of both your operative report and your pathology report for your own records.

    Being diagnosed with cancer was a traumatic experience but as time has gone by I have learned to cope. I am in remission ( called NED for no evidence of disease) and hope it will last a very long time. 

    I am praying that treatment goes well for you, cuculigata.

    Cathy

    I got my diagnosis on April 15 and I need your help

    Thank you Cathy,

    Everything you say is very helpful for me.

    I hope I'll see Oncologyst soon and go from there.

    When I got my diagnosis the Gynocologist did not mention any grades and stages and I read that other women were told about this after their D&C.

    But anyway I'll know later.

     

    Thanks so much, stay well.

  • DrienneB
    DrienneB Member Posts: 182
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    Cucu me said:

    I got my diagnosis on April 15 and I need your help

    Thank you Cathy,

    Everything you say is very helpful for me.

    I hope I'll see Oncologyst soon and go from there.

    When I got my diagnosis the Gynocologist did not mention any grades and stages and I read that other women were told about this after their D&C.

    But anyway I'll know later.

     

    Thanks so much, stay well.

    Knowing Your Data, etc.

    What Cathy says is fantastic as far as advice. You MUST keep your own records of all of your test results.

    I just wanted to add that one of my best friends got an ovarian cancer diagnosis about a year after I got my uterine cancer diagnosis. When she met with her gynecolocial/oncologist at Univ. of Cal. San Francisco for the first time, she brought another friend (who'd survived bone cancer), and who suggested that they tape everything the doctor said on her iPhone. They asked the doctor's permission, of course.

    I thought that was a great idea. You can be in a kind of haze that doesn't allow you to pick everything up, even if you're trying to write it down. And even friends aren't always viewing things critically. I did not even know how to spell lymphadenectomy - nor did I know that the term can mean taking 2 lymph nodes or taking 100.

    Best to you,

    j

  • Cucu me
    Cucu me Member Posts: 213 Member
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    I got my diagnosis on April 15 and I need your help

    Thank you, I will do everything you are suggesting.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Cucu me said:

    I got my diagnosis on April 15 and I need your help

    Thank you, I will do everything you are suggesting.

    Great advice!

    Drienne and No Time have given you great advice.  I know that you had a D & C, not sure if that is the same thing as a uterine biopsy or not.  I had a uterine biopsy and it came back indicating a grade 2 cancer. I wish! My subsequent pathology report following surgery showed that I had a grade 3-aggressive- cancer.  It is not uncommon to have more than one type of uterine cancer, say endometriod and uterine papillary serous or sarcoma.  If a woman has at least 10% UPSC, I've read that she would than be diagnosed with UPSC given how aggressive this form of uterine cancer is. 

    Wishing you the very best outcome,

    Cathy 

  • Cucu me
    Cucu me Member Posts: 213 Member
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    I got my diagnosis on April 15 and I need your help

    Thank you Cathy,

    Good to know.

    Today I'm trying to get in tuch with the Oncologist. No luck yet.

    I'll post later again

     

     

  • Cucu me
    Cucu me Member Posts: 213 Member
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    I got my diagnosis on April 15 and I need your help

    I have my first appointment with Oncologist this thursday. OMG.

    I'm so scared.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Cucu me said:

    I got my diagnosis on April 15 and I need your help

    I have my first appointment with Oncologist this thursday. OMG.

    I'm so scared.

    cuculigata, we will support you.

    cuculigata, we will support you.  I know how frightening this is and how much of a shock it is.  Believe me, the beginning is the worse.  Think about going to your appointment tomorrow with a friend or relative.  Have a list of questions ready to ask.  This helped me feel more in control.

    You can do this!

    Hugs,

    Cathy

  • Cucu me
    Cucu me Member Posts: 213 Member
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    I got my diagnosis on April 15 and I need your help

    Thanks so much for the support, yeah I'm nervous, but in control, my daughter will be with me, I should be strong in front of her.

    Thank you

  • patelaja
    patelaja Member Posts: 4
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    new dx

    1. it depends on insurance. If requires referal than ask PCP to write one. Oncology office should able to take care of this.

    2. you should not wait days and weeks for oncology appt. u need to see them very soon.

    3. when they do surgery, make sure that they do pelvic and para-arotic lymph node disection

  • Cucu me
    Cucu me Member Posts: 213 Member
    Options
    patelaja said:

    new dx

    1. it depends on insurance. If requires referal than ask PCP to write one. Oncology office should able to take care of this.

    2. you should not wait days and weeks for oncology appt. u need to see them very soon.

    3. when they do surgery, make sure that they do pelvic and para-arotic lymph node disection

    I got my diagnosis on April 15 and I need your help

    Ok, I will.

    I don't know are they going to ask me for the lymph nodes, recommend or force me somehow.

    I think testing first is better, than removing right away, but who am I to give opinions....

  • Hybridspirits
    Hybridspirits Member Posts: 209
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    Cucu me said:

    I got my diagnosis on April 15 and I need your help

    Ok, I will.

    I don't know are they going to ask me for the lymph nodes, recommend or force me somehow.

    I think testing first is better, than removing right away, but who am I to give opinions....

    lymph nodes etc

    when you get an appt with I am thinking a gyno/oncolgoist who specializes in woman's below the belt cancers and does surgery you will sit and talk about what to expect.  Typically an oncologist treats the cancer and doesn't do surgery.  Maybe in your case the oncologist will decide on order of treatment/surgery.  for me personally and what I have read here I had surgery, pathology and then treatment.  When you finally sit down with a surgeon you will want to know the process and what to expect.  Having questoins in advance is helpful.  Some are:

    type of surgery - traditional or robotic.  Risks of each, benefits of each

    what will be removed - full hysterectomy,  omentum,  some even might have had their appendix.  Ask why for each and what is the reason

    when they do the surgery they will want to find out if the cancer has spread to local lymph nodes and will remove during surgery. You will want to find out how they will go about that to detemrine extent and how the process is complete

    they will check the fluid and determine if there are any cancer cells

    ask if anything else

    they typically have a pathologist there during surgery doing review so they know how to continue.  Ask this.

    After the surgery you surgeono might give you first indications of what they saw but know that final report could change

     

    I know how you feel as you just want answers and waiting to find these out.  It is also stressful as many times we rely on our Dr's to help us through and this time we have to take more control and drive the process.  This is frightening and overwhelming.  What I found is that if you take one step at a time and organize your approach and not worry to far forward it does all end up coming together.

    you are very lucky that your daughter is coming with you.

     

    let me know if i can help out any more

     

     

  • Cucu me
    Cucu me Member Posts: 213 Member
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    I got my diagnosis on April 15 and I need your help

    Thank you so much.

    Absolutely helpful comment as all.

    I'll do everything you advise me ladies, thanks to all.

    I'll keep you posted.

  • Hopeful162
    Hopeful162 Member Posts: 82
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    Cucu me said:

    I got my diagnosis on April 15 and I need your help

    Thank you so much.

    Absolutely helpful comment as all.

    I'll do everything you advise me ladies, thanks to all.

    I'll keep you posted.

    Choosing a doctor

    Just another comment. I was referred to a gyn/oncologist/surgeon which meant that after my surgery he also handled my chemo and is now doing my surveillance exams (which include a pelvic). This has simplfied things for me as I only have to deal with one doctor who is a specialist in this field. Some oncologists who oversee chemo will not do the follow-up for female cancers I was told. I certainly think it is important to see a gynecological oncologist for the surgery as well. Good luck with your appointment.

  • hermothersdaughter
    hermothersdaughter Member Posts: 29
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    Cucu me said:

    I got my diagnosis on April 15 and I need your help

    Thanks so much for the support, yeah I'm nervous, but in control, my daughter will be with me, I should be strong in front of her.

    Thank you

    i am glad you will have your

    i am glad you will have your daughter for support.  alos glad you are checking in here with these woman. i have found them to be really comforting. good luck

    blessings, j

  • Cucu me
    Cucu me Member Posts: 213 Member
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    I got my diagnosis on April 15 and I need your help

    The Oncologist said my cancer is grade 3, agresive, no stage yet, robotic surgery or regular if something goes wrong, send me to CT scan of pelvic, abdomen with infusion.

    Date for surgery May 11.

    Good luck to all of us my friends.