Mom newly diagnosed grade 3 stage 4 endometrioid adenocarcinoma

jakstra
jakstra Member Posts: 4
edited March 2014 in Uterine/Endometrial Cancer #1
Been lurking here over the last few weeks as our family has begun to come to terms with our mothers dx. It's been a blessing reading through so many wonderful stories of hope.

My mom begun with some spotting and cramps in the late summer and into Oct was her first trip to the Dr when she realized things weren't right. Some bloodwork, a CT scan, colonoscopy, and initial visit to the obgyn seemed to have everyone thinking cancer was a possibility, but also things never seemed to move quick enough that it was a major concern. Her colonoscopy was clean, bloodwork wasn't alarming, but the scan did show a 'mass' around her uterus and some 'spots' outside of it.. one on the liver, and it sounds like now around the stomach. At this time though the spots weren't an immediate red flag. She had a d&c completed and the Drs reaction to my brother after the procedure wasn't good. He said we'd have to wait for the results, but things didn't look good and it appeared to have spread to the stomach (could they tell that from that procedure?). At this point he still wasn't discussing the correlation to the scan.

My wife and I went along to her follow up visit a few days to discuss the pathology results. At that point they called it stage 3, but the Dr didn't going into detail about the relation on the CT scan or what he mentioned to my brother after the procedure. He recommended her to Lehigh Valley Hospital (Allentown PA area) as they have a obgyn oncology group there specialized in this. He advised we would probably be looking at surgery.

We went today to meet with the Dr for an initial exam and consult. We brought her lab results with us and obviously he had all her other various test results.

I was a little shocked when he said it was at stage 4 because of the spreading to the liver and stomach as a result of the CT scan findings and also that he didn't recommend surgery. She is 75, has type 2 diabetes, and had quadruple bypass surgery 10 years ago. After her heart surgery, she had a pretty good lifestyle change and has been in great health considering everything.

Over the last 2 months she has had increased pain in the pelvic/abdominal area and has been taking vicodin for at least the last month and a half regularly, now every 4 hours. Discussing with the Dr today he prescribed dilaudid as I think she was beginning to struggle as the vicodin seemed to be losing it's effectiveness.

He believes radiation and chemo are the better option first to control the spreading and then we could determine if effective if surgery is worth the risk, as he has concerns with her other health conditions.

I understand the severity of the news we received, but am I being naive questioning the Drs recommendation? My mother was anxiously awaiting having a hysterectomy done quickly. The Dr even gave her an alternative as some people wish to fore-go any treatment to just focus on quality of life. She laughed at not trying to fight and has an outstanding attitude about everything right now which I am thankful for.

I questioned the Dr on how we can be sure about the initial CT scan, and was a little concerned that we were foregoing surgery. My mother doesn't need the stress now of getting a second opinion as she wants to get on with treatment quickly but of course I'm stressing about making sure we are taking the best approach. I did ask the Dr about a follow up scan prior to starting any treatment and thankfully he ordered a pet scan that she will have Monday.

We go to her first radiation and chemo consults next week as well.

I guess with her prior conditions a full hysterectomy could be risky, but right now I'm feeling that not getting everything out with grade 3 cells leaves the outlook even bleaker than it is. So many other experiences I've read had staging done during surgery. No feedback from any Drs on the initial CT scans led us to believe there was any 'major' signs outside of the pelvic area. At least having the pet scan should at least help us feel more confident in the approach. Sorry for the novel but it feels good sharing. Looking forward to some feedback. It's overwhelming right now thinking about everything she is going to go through over the next couple months. I'm so glad there's forums like this to learn from everyone's experiences and to be able to share our own.

Comments

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #2
    Jakstra, sorry to hear about your Mother
    I know you and your family must be very anxious over the news you have received. Hopefully you will get some answers to some of your questions when you get results of her PET scan.

    Many times people are given chemo and radiation prior to surgery to shrink the tumors. Usually when the cancer has gone outside the uterus to a vital organ it is stage 4. When it goes to the lymph nodes it is stage III-C, which is what I have. Staging is usually done with surgery, but since the CAT scan showed tumors in various places that is how they were able to stage with surgery.

    I hope your Mother gets pain pills that are taking care of the pain for her. Sometimes when the tumors get smaller due to chemo or radiation, the pain gets better too. Have her be persistant with the doctor to get something to help with the pain. If pills do not work, there are patches that can be worn for pain.

    Asking for copies of lab work and scans can keep you informed of what the tests are actually showing. Your Mother will need to ask for these, as she is the only one they will release the information to.

    Come back with any questions or concerns you have, or if you just need to vent. All the feelings you have are okay. Talking about your fears and frustrations can help. In peace and caring.
  • jakstra
    jakstra Member Posts: 4
    #3
    Ro10 said:

    Jakstra, sorry to hear about your Mother
    I know you and your family must be very anxious over the news you have received. Hopefully you will get some answers to some of your questions when you get results of her PET scan.

    Many times people are given chemo and radiation prior to surgery to shrink the tumors. Usually when the cancer has gone outside the uterus to a vital organ it is stage 4. When it goes to the lymph nodes it is stage III-C, which is what I have. Staging is usually done with surgery, but since the CAT scan showed tumors in various places that is how they were able to stage with surgery.

    I hope your Mother gets pain pills that are taking care of the pain for her. Sometimes when the tumors get smaller due to chemo or radiation, the pain gets better too. Have her be persistant with the doctor to get something to help with the pain. If pills do not work, there are patches that can be worn for pain.

    Asking for copies of lab work and scans can keep you informed of what the tests are actually showing. Your Mother will need to ask for these, as she is the only one they will release the information to.

    Come back with any questions or concerns you have, or if you just need to vent. All the feelings you have are okay. Talking about your fears and frustrations can help. In peace and caring.

    Thank you for the thoughtful
    Thank you for the thoughtful reply Ro. I appreciate it. There's so many questions you have after the fact. There was never a mention of how large the tumor on her uterus is, nor did anyone ask. The thing that just kind of stunned me was the correlation after the fact to the earlier CT scan from Nov. Like I said initially the same results they are staging off of now didn't seem to cause tremendous concern then.. although I wonder how much info she didn't share or didn't think to after her earlier visits.

    I appreciate the points about requesting a copy of her various results.

    I think the thing that frustrated me the most is I almost felt like she was written off today. The Dr was very straightforward, which don't get me wrong, I truly appreciate that as a family (mother included) that we can come to terms with this, but his explanation for not doing surgery seemed more to dwell on the stage the cancer was at, and I took it like the surgery wouldn't help at this point. The way he discussed hospice as another choice only strengthened that feeling. She is dealing with pain, knowing her probably more than she is sharing, but otherwise she seems to be doing very well. She has lost some weight, but her appetite has been ok and there hasn't been any other complaints.

    I have to trust that this is one of the best Drs in the area for her to see, and her ideals would never question what a Dr tells her. Just have a lot of different thoughts going on now... is 75 too old for another surgery? Is her heart condition that much of a risk factor to push aside other benefits of surgery? He talked about even doing surgery that they wouldn't be able to deal with anything outside her reproductive organs that doing any removal around the liver is complex, however the indication from the CT scan was a 'spot' which at the time didn't seem that threatening. I feel so lacking in knowledge about everything right now. I guess seeing some of her test results will help me cope in my own way. I guess if she did have surgery there's a period of recovery she has to have prior to any additional treatment? I guess that would make sense wanting to control some of the spreading quicker without the delay and other possible risks of surgery.
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #4
    Hi
    Hi. Sorry you have to be here for you Mom but this is a great place full of wonderful patients and caregivers who are kind, hopeful and always willing to share experience and opinions. I wasn't going to post (I lost my mother to Stage IVB end. adeno. June 09 and still dealing with some anger and other issues) but there are a lot of similarities in our mother's situations. My mother, like your mom was old to be diag. with this disease. 78 at time of diag. and 79 when she passed, 4 mos into treatment. Like yours, she was tired and sick of tests and didn't want a second opinion. We desperately wanted surgery, wanted dr. to just cut this horrible alien out of her. She was staged based only on tests.. biopsy, ulstrasound, cat and then pet scan. They poo poohed surgery up front, never be able to remove all the cancer. They said at midpoint cat scan, they would "Revisit" surgery if her final cat scan was clean. Stage IV means it has mets to other organs or distant lymph nodes. They did the standard treatment of Carboplatin (1x a month) and taxol (1 x a week, 3 wks on, 1wk off) We were told up front her liver was fine, it wasn't. The story changed after she passed. Anyhow, my advice is yes, get copies of all of her records as you go. So you can read and understand and ask intelligent questions. Yes get a pet scan. Understand that at this stage, her cancer isn't curable (though my mother's gyn/onc. said that 10% were), that any treatment is basically palliative. Be thankful your doctor is up front and truthful, ours wasn't. And understand that these type of cancers, uterine, ovarian have high rates of recurrence, something that wasn't stressed to us.If it had been, my mother probably would have opted out of treatment due to age and QOL issues. I do wish you well and I will keep you and your Mother in my thoughts .
    Hugs, Cindy
  • nancygt
    nancygt Member Posts: 86
    #5
    jakstra said:

    Thank you for the thoughtful
    Thank you for the thoughtful reply Ro. I appreciate it. There's so many questions you have after the fact. There was never a mention of how large the tumor on her uterus is, nor did anyone ask. The thing that just kind of stunned me was the correlation after the fact to the earlier CT scan from Nov. Like I said initially the same results they are staging off of now didn't seem to cause tremendous concern then.. although I wonder how much info she didn't share or didn't think to after her earlier visits.

    I appreciate the points about requesting a copy of her various results.

    I think the thing that frustrated me the most is I almost felt like she was written off today. The Dr was very straightforward, which don't get me wrong, I truly appreciate that as a family (mother included) that we can come to terms with this, but his explanation for not doing surgery seemed more to dwell on the stage the cancer was at, and I took it like the surgery wouldn't help at this point. The way he discussed hospice as another choice only strengthened that feeling. She is dealing with pain, knowing her probably more than she is sharing, but otherwise she seems to be doing very well. She has lost some weight, but her appetite has been ok and there hasn't been any other complaints.

    I have to trust that this is one of the best Drs in the area for her to see, and her ideals would never question what a Dr tells her. Just have a lot of different thoughts going on now... is 75 too old for another surgery? Is her heart condition that much of a risk factor to push aside other benefits of surgery? He talked about even doing surgery that they wouldn't be able to deal with anything outside her reproductive organs that doing any removal around the liver is complex, however the indication from the CT scan was a 'spot' which at the time didn't seem that threatening. I feel so lacking in knowledge about everything right now. I guess seeing some of her test results will help me cope in my own way. I guess if she did have surgery there's a period of recovery she has to have prior to any additional treatment? I guess that would make sense wanting to control some of the spreading quicker without the delay and other possible risks of surgery.

    hope,right doc,second opinions
    I am so sorry for what you and your mom are going through.Hopefully the PET scan will show even more as it can show smaller tumors as well as how aggressive the growth rate. Also the suggestion that surgery could follow initial radiation/chemo shrinkage is a good one.And if they are able to do surgery with DaVinci robotics, surgery is much less stressful on the body (espeially recovery time) although I am sure anathesia for 3-4 hours is a concern and might warrant second or separate discussion with ansthesiologist.
    I do believe thast doctors opften fail to factor in the patients desire to fight-it has been so surprising to me that doctors won't fully discuss that option. I have changed oncologists after the cold monosyllabic answers from first doctor-further confirming the fact that not all oncologists know how to deal with patients, he is joining a practive where all he does now is surgery.
    While I don't know about the stomach-although I marvel at my 83 year old uncle who has completed 6 weeks of combined radiation and chemotherapy for stomach cancer.I do know the liver is variable. My best friend was diagnosed with Stage 4 Squamous cell lung cancer five years ago, was told she had a year or two and has been told to get her affairs in order at least 5 times. Her spread was in the liver and those mets have never grown-even now during a very aggressive growth period in her lungs. Her current doctor is deemed to be brilliant but she still sees her original oncologist who moved to New York as he is empathetic and supports her fight. However he has told her he will be honest when it is time to quit fighting and seek palliative or comfort care. She takes daily timed release morphine for pain as they could not remove large tumor that had partially eaten away her breastbone and has never been tumor free.In August they told her again to "get her affairs in order" and she and I flew to M.D. Anderson together to get her second opinion . While MDA doc did not deny serious turn of the disease, he did recommend 2 different drugs and she is on one of them now.Whenever I feel whiney or sorry for myself, I use her as my inspiration. But the point is find a doctor who will talk to you and your mother and who will explain tests,treatment (both short and long term). And do consider a second opinion- most insurance will pay, mine only took one day as my doctor sent pathology and scans ahead of time and I feel better that the doctor at MDA I saw will remain on my medical team as long as I see her every two years (something I value as we move through recurrences and treatment options)
  • jakstra
    jakstra Member Posts: 4
    #6
    Cindy Bear said:

    Hi
    Hi. Sorry you have to be here for you Mom but this is a great place full of wonderful patients and caregivers who are kind, hopeful and always willing to share experience and opinions. I wasn't going to post (I lost my mother to Stage IVB end. adeno. June 09 and still dealing with some anger and other issues) but there are a lot of similarities in our mother's situations. My mother, like your mom was old to be diag. with this disease. 78 at time of diag. and 79 when she passed, 4 mos into treatment. Like yours, she was tired and sick of tests and didn't want a second opinion. We desperately wanted surgery, wanted dr. to just cut this horrible alien out of her. She was staged based only on tests.. biopsy, ulstrasound, cat and then pet scan. They poo poohed surgery up front, never be able to remove all the cancer. They said at midpoint cat scan, they would "Revisit" surgery if her final cat scan was clean. Stage IV means it has mets to other organs or distant lymph nodes. They did the standard treatment of Carboplatin (1x a month) and taxol (1 x a week, 3 wks on, 1wk off) We were told up front her liver was fine, it wasn't. The story changed after she passed. Anyhow, my advice is yes, get copies of all of her records as you go. So you can read and understand and ask intelligent questions. Yes get a pet scan. Understand that at this stage, her cancer isn't curable (though my mother's gyn/onc. said that 10% were), that any treatment is basically palliative. Be thankful your doctor is up front and truthful, ours wasn't. And understand that these type of cancers, uterine, ovarian have high rates of recurrence, something that wasn't stressed to us.If it had been, my mother probably would have opted out of treatment due to age and QOL issues. I do wish you well and I will keep you and your Mother in my thoughts .
    Hugs, Cindy

    Thanks everyone
    Especially Cindy.. thanks for posting. As Nancy stated despite the prognosis I think this Dr is underestimating the spunk my mom has, but at the same token I guess we have to be realistic if rads and chemo will really help or possibly take away from her QOL at this point.

    I guess a pet scan is a good place to start, along with getting some records to review.

    The Dr recommended rads 5 days a week for I forget how long.. I know it was at least 4-6 weeks.

    As far as the chemo, he wants 6 treatments, one every 21 days. The first 2 only a single agent, then adding a 2nd in for the last 4. Forgetting which med when (should of wrote stuff down!), but pretty sure he mentioned Carbo and Taxol.
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #7
    jakstra said:

    Thanks everyone
    Especially Cindy.. thanks for posting. As Nancy stated despite the prognosis I think this Dr is underestimating the spunk my mom has, but at the same token I guess we have to be realistic if rads and chemo will really help or possibly take away from her QOL at this point.

    I guess a pet scan is a good place to start, along with getting some records to review.

    The Dr recommended rads 5 days a week for I forget how long.. I know it was at least 4-6 weeks.

    As far as the chemo, he wants 6 treatments, one every 21 days. The first 2 only a single agent, then adding a 2nd in for the last 4. Forgetting which med when (should of wrote stuff down!), but pretty sure he mentioned Carbo and Taxol.

    Sorry for the reason ur here
    Sorry for the reason ur here, but this is a most supportive and Erudite group.
    I am 65, diagnosed in July stage after surgery IV B. Finised four rounds of Taxol Carboplatin and now doing two rounds of Doxil.

    During weekly chemo of Taxol and every fourth week adding Carbo, I was able to get three or four days before each treatment to continue working- I'm a psychologist in a hospital, and see family. I went from working a nine hour day to a four hour day. I also learned how to titrate my pain meds,
    I am 65, a g.mother, diagnosed in July and staged after surgery with Stage IV B ( pT3b No M1).
    No other illnesses, had everything out, started chemo, taxol weekly carbo once every three weeks in August about a month after surgery.
    I was,am bake to work and see and be with family on the three four days before chemo. Used to work, I'm a psychologist in a hospital, eight to nine hour days, now I work four hour days. I learned to titrate my pain meds so as not to be out- of- it, but also in a pain management state.
    I finished four rounds and now on a more experimental protocol of two rounds of Doxil and then Anti Hormone pills. We'll see and hope and pray for the best under the circumstances.

    I am telling you all this, that if your Mom wants QOL, things need to be reorganized, time to rest during the day etc, but it is indeed possible and the sense of being in-there fighting AND living is empowering.
    She's lucky to have a son like you in her corner for the fight and not hiding in one way or another.

    Always:
    Get second opinions
    Read
    Bring a notebook or (concealed or not) mp3 to record what docs say to go over it at home and make more notes.
    Ask if docs will accept email questions.
    Make your own copies of every blood test etc and scan them in so you can send en off for second opinions
    Talk to others who are in the same boat
    Pray

    Good luck, we are all statistics of one, all outliers.

    Sara Zipora
  • jakstra
    jakstra Member Posts: 4
    #8
    Sara Zipora said:

    Sorry for the reason ur here
    Sorry for the reason ur here, but this is a most supportive and Erudite group.
    I am 65, diagnosed in July stage after surgery IV B. Finised four rounds of Taxol Carboplatin and now doing two rounds of Doxil.

    During weekly chemo of Taxol and every fourth week adding Carbo, I was able to get three or four days before each treatment to continue working- I'm a psychologist in a hospital, and see family. I went from working a nine hour day to a four hour day. I also learned how to titrate my pain meds,
    I am 65, a g.mother, diagnosed in July and staged after surgery with Stage IV B ( pT3b No M1).
    No other illnesses, had everything out, started chemo, taxol weekly carbo once every three weeks in August about a month after surgery.
    I was,am bake to work and see and be with family on the three four days before chemo. Used to work, I'm a psychologist in a hospital, eight to nine hour days, now I work four hour days. I learned to titrate my pain meds so as not to be out- of- it, but also in a pain management state.
    I finished four rounds and now on a more experimental protocol of two rounds of Doxil and then Anti Hormone pills. We'll see and hope and pray for the best under the circumstances.

    I am telling you all this, that if your Mom wants QOL, things need to be reorganized, time to rest during the day etc, but it is indeed possible and the sense of being in-there fighting AND living is empowering.
    She's lucky to have a son like you in her corner for the fight and not hiding in one way or another.

    Always:
    Get second opinions
    Read
    Bring a notebook or (concealed or not) mp3 to record what docs say to go over it at home and make more notes.
    Ask if docs will accept email questions.
    Make your own copies of every blood test etc and scan them in so you can send en off for second opinions
    Talk to others who are in the same boat
    Pray

    Good luck, we are all statistics of one, all outliers.

    Sara Zipora

    Thanks Sarah
    Thanks for sharing your story and your advice is very helpful.

    Last night she got her Dilaudid rx filled. She was never a fan of pain meds, but as I stated earlier has been taking Vicodin around the clock over a month now. I told her if she has been doing ok with it that she could hold off taking the Dilaudid until she needs it. Last night she said she wanted to try it so I know the Vicodin must not be cutting it.

    My 10yo son wanted to play cards so we decided to go to her house to play and that way we'd be there to see how she did the first time with it. She did great and it seemed to help more. I'm a little concerned with her getting to the point of taking that around the clock, and worried about it losing effectiveness further down the road and dealing with withdrawal if she has to change to something else.. guess it shouldn't be a big concern considering everything else.

    She goes for her PET scan next Monday. I've read that with medicare there could be coverage concerns with this cancer, but both the Dr and nurse said not to worry that they would get covered. Wed she goes for rads consult, then Thursday chemo consult. I'm still a little confused how all this info and test results are going to be communicated between all these Drs and ourselves. It's funny as the last 2 Dr appts we had 4 people in addition to mom at the office. The staff has been very supportive that we all want to be involved.

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