?'s about Endometrial Stage 3C, Uterine & Breast Cancers

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I was diagnosed with Endometrial Stage 3C on the 7th of December 2015. In the meantime, I had a mammogram which cameback with several abnormal spots. Biopsies were preformed & results came back on 1 that it is cancer. Met with the Gyn-Oncologist towards the end of December & was told that the cancer had also spread into my Uterine & Lymph Nodes. I haven't been called back as of today. I've been told that I will have a radical hysterectomy & since the cancers are not confined I will have to have open surgery & Chemo afterwards. I have high blood pressure along with uncontrolled diabetes. 

My 1st question is:  How long does it take to hear back & for something to happen?

2nd question:  How long does it usually take for the cancers to spread?

3rd question:  What are my survival chances for having the 3 cancers at once. I've tried to research this & haven't found any info.

 I'm getting very emotional, mad & bursting with crying. All I can think of is my children & grandkids, I'm 51 years young.  Any & all replies would be much appreciated at this point. Thanks for letting join this board. I don't know where is else to turn.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    13S, I am very sorry to hear

    13S, I am very sorry to hear all of this.  Please know that if they women here have any information, they are going to help.

    How long does it take?  My advice would be your own advocate.  A few years ago I was dealing with a public topic and asked a very good PR friend how to handle it.  He told me, don't be emotional, they just dismiss you as crazy.  Calmly call and ask who can help you and that you need some answers.  Do not give up until you  have a date of someone to talk to, and that it has to be sooner rather than later.  Frankly, it is appalling that a dedicated time to talk to you has not been arranged.  Get on the phone today and tell them you want to know when you are going to meet with someone and that it has been over two weeks already.  I always like to turn it back on people and ask, "is this what would happen to someone in your family?"  The answer is always NO. 

    How long to spread? Good question.  I think we think it goes from zero to 60 is .5 seconds, but I don't believe that is really true.  You indicate a later stage cancer, but that doesn't mean something can't be done.  

    Survival chances?  The "rates" out there are based on OLD information and a lot of things have changed since those have been posted.  Besides, you are a statistic of one.   Everyone is different.  

    As hard as it is, please try to take a breath.  Get in to the doctor, get some answers, get a plan, and don't be afraid to ask for something to help calm you down.  It is overwhelming, and that word can't even begin to describe it all.  

    You are not alone.  

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    13S, you came to the right place

    for advice. I am sorry that you needed to join this group, as it is such a terrible shock to learn one has cancer. You mentioned endometrial (or uterine) and breast cancer. What is the 3rd cancer you were told that you have? Did you have a cat scan and/or pet scan? Staging for uterine cancer usually follows an analysis of your excised tissues (uterus, Fallopian tubes, ovaries, omentum and lymph nodes) following a hysterectomy. How was it determined that you have stage 3C uterine cancer prior to surgery? This is the first time I have heard of a woman receiving this diagnosis without scans or surgery. As No Time said, be your own advocate and request a follow up appt soon. Don't hesitate to get a second or third opinion if need be. Let us know how you are doing. Take care.

    Best Wishes,

    Cathy

  • Editgrl
    Editgrl Member Posts: 903 Member
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    13S

    I am sorry to hear of your diagnosis.  We here understand how you feel.  It all seems overwhelming at first. Please take a deep breath. First of all, call your GYN/ONC and find out when your hysterectomy is going to be scheduled and ask for another appointment so you can ask questions.  I am surprised that this hasn't happened already.  Be calm but be firm about getting some answers.

    Second, not all cancers spread at the same rate.  Some are more aggressive than others.  One of the questions to ask would be what grade your cancer(s) are.  Also ask for copies of your pathology reports.

    There are many women on this site who were diagnosed Stage 3C and are still around years later.  And there are a few who have had both breast and uterine cancer.  It is NOT hopeless.

    It is normal to get mad, cry, scream, and rage against the diagnosis.  I did it, and I'm sure many women here did it.  But then we got a plan and worked our way through it.  You can do this, too.  You are not alone...  we are here with you.

    Chris

     

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    So sorry

    So sorry that we had to meet his way and that you had to come to this site, but this is a good place to be.  You will find comfort, support and information here.  You have already recieved somefrom these other ladies.  I know it is hard not to panic, but try not to get too upset yet. You don't know all the details yet.  1st you do need to get that Dr. Appointment.   Most cancer is staged and graded after surgery.  You will surprise yourself with your strength.  We are all stronger than we ever thought we could be.  Come here to ask any questions, someone will have an answer for you, or advise on where to go for for advise.  My cancer is stage 4 high grade and I have been around for 3 1/2 years.  I have many more good days than bad, and I plan to be around for a long time.  Hugs and prayers to you, Lou Ann

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    I'm so sorry you have to go

    I'm so sorry you have to go through this.  I agree with the advice you've been given.  I know how hard this journey is but once you find out exactly what you have you can come up with a plan to fight it.  We're here for you!!

    Love,

    Eldri

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    So sorry for what you are

    So sorry for what you are going thru.   As the others have said you came to the right place.  You can gather a lot of information here.

     

    with regard to your questions 1. It can depend on what plan they are devising for you.  The doctors meet with a board of doctors to discuss your particular case.  With regard to spread there really isn't a cut and dry answer for that

    3 question.  You may not have 3 cancers.  You may only have one primary cancer that had spread.   For example you may have started out as breast cancer that spread to utter us and node.  Or you have uterine cancer that spread to breast.  you will need to discuss that with your doctors because that will depend on the action they will take

    some posters here have had two primary cancers (breast and uterine). The lymph node involved could be one or the other and may not be another primary cancer

     

    when you hear you have cancer you feel that action should be taken immediately but that's usually not the case. But is scary and frustrating. But hang in there!

    i hope this helps.   I was diagnosed in 2005 at age 45 With stage 3a uterin cancer.  II am now 55.   Several ups and downs and a couple of surgeries.

     

    my best to you

    kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    Kaleena said:

    So sorry for what you are

    So sorry for what you are going thru.   As the others have said you came to the right place.  You can gather a lot of information here.

     

    with regard to your questions 1. It can depend on what plan they are devising for you.  The doctors meet with a board of doctors to discuss your particular case.  With regard to spread there really isn't a cut and dry answer for that

    3 question.  You may not have 3 cancers.  You may only have one primary cancer that had spread.   For example you may have started out as breast cancer that spread to utter us and node.  Or you have uterine cancer that spread to breast.  you will need to discuss that with your doctors because that will depend on the action they will take

    some posters here have had two primary cancers (breast and uterine). The lymph node involved could be one or the other and may not be another primary cancer

     

    when you hear you have cancer you feel that action should be taken immediately but that's usually not the case. But is scary and frustrating. But hang in there!

    i hope this helps.   I was diagnosed in 2005 at age 45 With stage 3a uterin cancer.  II am now 55.   Several ups and downs and a couple of surgeries.

     

    my best to you

    kathy

    Welcome to my world (sort of)

    I had both endometrial and breast cancers at the same time.  So did a very good friend of mine.  Try and convince me this is so rare!  I did ask about this at one of my early on visits and I was told that it is not unusual for a woman to have both breast and endometrial cancers over the course of her lifetime.  Both at once?  Well . . . unusual.

    I had Type I endometrial cancer which is usually associated with estrogen.  It was also Stage 1, grade 1 and had a very good prognosis.  No necessary treament for me on this end other than surgery.  It doesn't sound like that's the case with you.   My breast cancer was estrogen receptor positive, and it was more aggressive than the endometrial cancer.   The two surgeons put their heads together and this was my course of action:  (I think it was for their convenience mostly, but well, that's just what I think).

    Lumpectomy

    Recover

    Hysterectomy (DaVinci robotic - there was no evidence prior to surgery that indicated the need for open surgery, but I was told it would be a possibility if more extensive staging was necessary)

    Recover

    Chemotherapy (for breast cancer, I did not require chemo for endometrial cancer)

    Radiation (for breast cancer).

    Followup for both.

    My good friend with the same diagnosis, had her hysterectomy first, and lumpectomy second.  She did not require chemotherapy for either cancer.  Her endo cancer was really early and her breast cancer was also early and small and low oncotype test score.

    All you can do is keep nagging the surgeons for a plan and insist that they each know what the other is doing.   See a gynecologic oncologist for the endo cancer and make sure you get a surgeon who does breast cancer surgery, not a general surgeon.  Have medical oncologists for EACH (one who specializes in gyn cancers and one who specializes in breast cancer) and make sure they talk to each other.  There are chemotherapies that are used for both endo cancer AND breast cancer but not all of them.   I know my medical oncologist who prescribed the chemo for breast cancer did not do so until she knew the stage and grade of my endo cancer.  I don't kow if my oncologists and surgeons ever actually talked, but I do know that with the electronic medical record the right hand knew what the left was doing every step of the way.  Be your best advocate.  Don't be afraid to ask lots of questions.  Those folks are smarter than we are and they've heard dumber questions that I asked I'm sure. 

    Good luck to you.  It is really frightening to have a "double whammy".  I remember one of my biggest questions was and still is "if I grew two, how do I know I won't grow another one".  And, of course, there is no answer.

    Suzanne

     

     

  • cindy0519
    cindy0519 Member Posts: 173
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    I too am sorry you were in a

    I too am sorry you were in a circumstance to warrant finding this board.  I know this can all be so overwhelming that it quite literally takes your breath away. But try to take a deep breath and step out of panic mode.  VERY HARD to do I realize but it will help you to conserve energy and feel better I promise!

    I too am 51 and have both Invasive Ductal Carcinoma (IDC) and Uterine Papillary Serous Carcinoma (UPSC).  In my case, I have two separate cancers, not one type that is metastatic to the other locations - and this is a VERY GOOD THING!  I am just "lucky enough" to have to differeent cancer occurances at the same time.   I was diagnosed with IDC four days before my 51st birthday.  Intially I was clincally staged at IIB due to the size of the tumor as it appears on ultrasound and MRI images.  I choose to have a unilateral mastectomy of my left breast with immediate reconstruction. I had the mastectomy and the reconstruction (Alloderm and tissue expander) performed on June 4.  Once the mastectomy was performed and the cancerous parts of my tumor were measured - my Stage was adjusted to 1A.  This meant that I required no futher treatment other than taking Tamoxifen for five years to block estrogen since my cancer was estrogen and progestrogene postive. I began taking Tamoxifen in July.  I experienced a number of issues with my reconstruction over the summer and eventually it was all surgically removed in late Aug. 

    At my medical oncologist visit in mid Sept she insisted that I visit an OBGYN to have my annual PAPs rather than my primary care doctor since I was on Taxmoifen and it has a high risk of uterine cancer associated with its use.  She referred me to a OBGYN and I scheduled a visit and my PAP that was due.  I had that visit on Sept 25.  During the PAP the OBGYN found a polyp hanging out of my cervix.  She quickly hit off while informing me it was there.  I hit panic and she assured me it would be fine... "these things are rarely cancerous."  Two days later while at a conference in CA she called to tell me it was indeed cancerous and was an agressive grade 3 cancer.  I had to come in ASAP to get a biospy of my uterus done and talk about next steps so we made an appointment for two days later when I could be home.  The intital pathology report showed grade 3 uterine cancer with high suspision of almost 90% of the myometrium and was also found in one of the pelvic lymph nodes that was removed.  The remaining 46 lymph nodes that were removed were clear as was the pelvic wash and omentum.  I was stage IIIC1. 

    I write all this so you can see... I understand and have also lived the panic but things might not be as bad as they seem at first blush.  Get the right doctors - a breast surgeon for the breast cancer, a medical oncologist for the breast cancer, a gyncological oncologist for the uterine cancer (who might also be able to do the hysterectomy - mine was) and let them do what is needed to properly determine what type(s) of cancer you have and if one is metastatic to the other.  During this process you will get a few pathology reports and other test like xrays, MRIs, and CAT scans - get a copy, review them with the doctors, and ask question until you have the information you need and are able to find some comfort level with the treatment plan they are recommending.  Also, getting a second opinion might not be a bad thing. I felt much better about my treatment plan and team as a whole after a second opinion.

    A word of caution/bit of advice that my breast surgeon gave me - try your best to stay away from "Dr Google" until you have pathology and can discuss it with your treatment team.  Most of what is on the internet will be hard to understand and will simply end up scaring the pants off you.  I didn't heed this advice very well and will agree....just scared the crap out of me!!

    Hang in there! It's hard to wait for answers but they will come when the testing is completed and the full picture is understood.  There are others of us here is the same or very similar vote we will offer our experiences and support to help you along as best we can.

     

     

     

  • pinky104
    pinky104 Member Posts: 574 Member
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    13S

    I had to have a D&C first, as my ob/gyn thought I had a benign polyp.  I think it took about a week to get that done.  Next, I got an appointment three weeks later to go to another city and meet with a gyn/onc.  Then it took another 4 weeks before I could get into the hospital there for surgery.  Ten days later, after biopsies of the cancer spots from the surgery, and after my gyn/onc met with a tumor board at the hospital to discuss my cancer, I was told it was stage IVb (the worst stage) UPSC, a very aggressive cancer.  I set up an appointment for my chemo at the hospital where I worked, closer to home.  My oncologist there wouldn't discuss my odds.  He told me that it doesn't matter if 9 people out of 10 survive a cancer if you happen to be in the other 10%.  I also talked to another employee in the cancer center (not a physician) who researched publications and medical websites and found my survival odds in only one place, on a website called oncolink.com.  I'd had my first CT scan by then and I knew I had cancer in the uterus, both ovaries,  the omentum, and small intestine.  She and I guessed it would probably turn out to be stage IV, which is exactly what it was.  She told me that for stage IV, my odds of survival would be about 15%.  Of course, I psyched myself up worrying and expecting to die, so much so that I had an abnormal EKG when I went in for surgery.  I was eventually cleared by a cardiologist a few hours later  I had surgery and 6 rounds, three weeks apart, of chemo (carboplatin and paclitaxel ("Taxol"), which is the standard chemo for my type of cancer.  I  had my gallbladder and appendix out in the same surgery because gallstones had also shown up in my CT scan (the appendix is often taken out routinely).  I had a huge incision.  I finished chemo in late September of 2010, so I'm now five and a quarter years out, with no evidence of disease.  At some point, I found a link on this site that went to a study on UPSC done by a society of gynecological oncologists.  That said that I was supposed to have had only a 9% chance of survival if I followed the recommended protocol (0% if I didn't), but here I am, still alive and kicking. 

    I'd suspected I had something wrong with me for years, but I had almost no major symptoms.  i did have diarrhea every morning before I went to work, and one doctor had told me that I had irritable bowel syndrome about 15 years back.  That seemed to fit, since I dreaded going to work every day.  At one point, my mother was diagnosed with celiac disease, so I thought I'd inherited that, but I was tested twice with negative results.  I didn't start bleeding (lightly) until a couple of months before I was diagnosed, and I blamed it on an estrogen cream I'd  recently been given to help with the irritation from a pessary that I was using for a slight uterine prolapse.  I'd looked the cream up in a drug reference I had at my desk at work and found it could cause bleeding.  But when I went back to my ob/gyn to have my pessary removed and cleaned three months later, I mentioned it to him, and he'd told me that I wasn't on a large enough dose of the cream to cause bleeding.  He scheduled me for an ultrasound, and the large polyp was found then, leading to my cancer diagnosis.  I'm really not sure how many years I'd had the cancer.  I did have a procedure 10 years before that for another uterine polyp that had turned out to be benign, so I'm guessing it developed sometime after that.  I'd also had cervical polyps removed 6 times over the years, and all had been benign. 

    Is your gyn/onc. going to remove all three cancers, or could he be trying to coordinate surgery dates with other surgeons?  He could be worried about the risks of uncontrolled diabetes and high blood pressure.  Did he recommend getting treatment for either of those things in the meantime?  There's also a chance he got backed up on his appointments due to a Christmas vacation, although he should still be scheduling you in the meantime or at least letting you know why he isn't. And doctors are human. They get sick themselves at times.  Who knows what's going on with him?  I've had to wait to be booked several times because the doctor's office needed new software for each quarter's schedules.

    Don't get ahead of yourself and assume you're doomed.  I had my cancer in five sites and I'm still here.  My cancer spread laterally, not thru the lymph nodes.  Yours could have spread thru the lymph nodes or you could, as someone else said on here, have different cancers in different sites.  Wait for the biopsy results to see what's going on.  If you expect the worst, things will either be what you expect or they will be better.  Personally, I worried a lot more than I needed to.  I hope that's what happens with you, too.  Good luck. 

          

  • BC Brady
    BC Brady Member Posts: 70
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    pinky104 said:

    13S

    I had to have a D&C first, as my ob/gyn thought I had a benign polyp.  I think it took about a week to get that done.  Next, I got an appointment three weeks later to go to another city and meet with a gyn/onc.  Then it took another 4 weeks before I could get into the hospital there for surgery.  Ten days later, after biopsies of the cancer spots from the surgery, and after my gyn/onc met with a tumor board at the hospital to discuss my cancer, I was told it was stage IVb (the worst stage) UPSC, a very aggressive cancer.  I set up an appointment for my chemo at the hospital where I worked, closer to home.  My oncologist there wouldn't discuss my odds.  He told me that it doesn't matter if 9 people out of 10 survive a cancer if you happen to be in the other 10%.  I also talked to another employee in the cancer center (not a physician) who researched publications and medical websites and found my survival odds in only one place, on a website called oncolink.com.  I'd had my first CT scan by then and I knew I had cancer in the uterus, both ovaries,  the omentum, and small intestine.  She and I guessed it would probably turn out to be stage IV, which is exactly what it was.  She told me that for stage IV, my odds of survival would be about 15%.  Of course, I psyched myself up worrying and expecting to die, so much so that I had an abnormal EKG when I went in for surgery.  I was eventually cleared by a cardiologist a few hours later  I had surgery and 6 rounds, three weeks apart, of chemo (carboplatin and paclitaxel ("Taxol"), which is the standard chemo for my type of cancer.  I  had my gallbladder and appendix out in the same surgery because gallstones had also shown up in my CT scan (the appendix is often taken out routinely).  I had a huge incision.  I finished chemo in late September of 2010, so I'm now five and a quarter years out, with no evidence of disease.  At some point, I found a link on this site that went to a study on UPSC done by a society of gynecological oncologists.  That said that I was supposed to have had only a 9% chance of survival if I followed the recommended protocol (0% if I didn't), but here I am, still alive and kicking. 

    I'd suspected I had something wrong with me for years, but I had almost no major symptoms.  i did have diarrhea every morning before I went to work, and one doctor had told me that I had irritable bowel syndrome about 15 years back.  That seemed to fit, since I dreaded going to work every day.  At one point, my mother was diagnosed with celiac disease, so I thought I'd inherited that, but I was tested twice with negative results.  I didn't start bleeding (lightly) until a couple of months before I was diagnosed, and I blamed it on an estrogen cream I'd  recently been given to help with the irritation from a pessary that I was using for a slight uterine prolapse.  I'd looked the cream up in a drug reference I had at my desk at work and found it could cause bleeding.  But when I went back to my ob/gyn to have my pessary removed and cleaned three months later, I mentioned it to him, and he'd told me that I wasn't on a large enough dose of the cream to cause bleeding.  He scheduled me for an ultrasound, and the large polyp was found then, leading to my cancer diagnosis.  I'm really not sure how many years I'd had the cancer.  I did have a procedure 10 years before that for another uterine polyp that had turned out to be benign, so I'm guessing it developed sometime after that.  I'd also had cervical polyps removed 6 times over the years, and all had been benign. 

    Is your gyn/onc. going to remove all three cancers, or could he be trying to coordinate surgery dates with other surgeons?  He could be worried about the risks of uncontrolled diabetes and high blood pressure.  Did he recommend getting treatment for either of those things in the meantime?  There's also a chance he got backed up on his appointments due to a Christmas vacation, although he should still be scheduling you in the meantime or at least letting you know why he isn't. And doctors are human. They get sick themselves at times.  Who knows what's going on with him?  I've had to wait to be booked several times because the doctor's office needed new software for each quarter's schedules.

    Don't get ahead of yourself and assume you're doomed.  I had my cancer in five sites and I'm still here.  My cancer spread laterally, not thru the lymph nodes.  Yours could have spread thru the lymph nodes or you could, as someone else said on here, have different cancers in different sites.  Wait for the biopsy results to see what's going on.  If you expect the worst, things will either be what you expect or they will be better.  Personally, I worried a lot more than I needed to.  I hope that's what happens with you, too.  Good luck. 

          

    OMG Thank you

    You are exactly who I needed to read tonight. Thank you. My dx is very similar as is my prognisis. 5+ years gives me hope. I'm onto the 2nd  recipe in the cookbook, Doxil, and started having some pretty rough skin issues after 3 rounds. I will find out on Jan 25th if it's working - if it is, a few rashes and mouth sores will all be worth it. Less sick than the carbo/taxol, so that's good at least.

    Blessings to you and your continued recovery!

    Billie