Newly Diagnosed as Stage 4

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Severe abdominal pain sent me to emergency room on 11/19/16.  CT showed some " spots" on liver.  Biopsy indicated cancer and was told it was ovarin and had sigmoid colon perforation.  Had radical hysterehysterectomy and bowel resection on 12/13/16.  After surgery was told cancer was actually uterine.  Sent home and appointment with oncologist set for 1/23/17.  I have been pretty calm and pragmatic up to now, but thoughts of treatment are freaking me out.  All stats give Grim prognosis for stage 4 and I am reluctant to give up what time I have left to suffering through chemo and radiation.  What if I refuse treatment?  Or only Accept targeted low dose.  Drs sell chemo but I do not trust Drs unquestionably.  I want to live as long as I can but I do not want to sacrifice quality.  I mean I do not want to extend my life if that time is spent suffering through painful treatment.

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  • ConnieSW
    ConnieSW Member Posts: 1,685 Member
    edited January 2017 #2
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    Kinkymarie

    I'm sorry you need to join our group but so glad you found us.  We can help.  You will learn a lot by going back and reading old posts while you wait for the rest to answer your specific questions.  To start let me assure you that there IS hope.  As far as treatment goes,  I would dare to say most of us found chemo very doable and worth it.  I didn't have radiation except for brachytherapy so I can't speak to that.  Things won't be the same but its possible to have a good quality of life and the timeline is unknown, just as it is for everyone.  its not time give up.

  • MAbound
    MAbound Member Posts: 1,168 Member
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    Hi Kinky Marie, I'm so glad

    Hi Kinky Marie, I'm so glad you found us but very sorry that you needed to. This is the place to be to get information and support from ladies who really "get" your fears and concerns.

    You've been through an awful lot already and it's understandable that not knowing how much more you need to go through is scary, but I would suggest you put away most of your preconcieved notions about what treatment going forward is going to be like and not give up on it just yet. The science has really come a long way in just the past 5 years or so and how you experience it probably won't be anything like any of the stories you're probably being told by friends and family about people they've known having cancer. There's a lot of variables involved so each of us is unique and all of the statistics you've probably read or heard about are just numbers that really don't mean anything. It's a lot more doable than you think it is; the biggest thing is that it's done over a period of months and you and your family need to be prepared for this taking up a big part of your life for awhile. 

    You are not alone with being diagnosed with stage 4 cancer and I'm sure there will be other ladies coming along in a while who were similarly diagnosed who will share their stories and advice with you. My first piece of advice would be to get and keep copies of your medical records since you went to the emergency room. They'll come in real handy as time goes on, so it's good to get them ahead of time.

    As to your mistrust of doctors, it's not a bad thing because it's not realistic to expect any one doctor to know it all. That's one of the reasons you want your records. You will probably be asking for 2nd and even 3rd opinions, see more specialists than just your surgical oncologist, and possibly even look into integrative medicine as time goes on. It takes a village and now you have us to be a part of yours. 

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    KinkyMarie,

    KinkyMarie,

    Welcome to our board. So glad you found us. You will find loads of information, support and understanding here. The ladies are very helpful and knowledgable.

    So sorry you are having to deal with this. Please don't give up. There are lots of ladies with stage 4 that have gone through treatments and are thriving. As well as others being treated as a chronic disease. So much progress has been made in treating the side effects of chemo. And, I believe we are getting closer to actual "cures". 

    There is a thread titled 'Ladies Going Through Chemo'. 

    I hope you take the time to read it. There is a wealth of information where ladies documented their chemo journey as they were going through it. I hope you get the answers you need to make the best decision for you. Love and Hugs, Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited January 2017 #5
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    Welcome to the club no one

    Welcome to the club no one wants to belong to.  I am glad you found us.  This is a group of well informed ladies who will give you advice, information,  and support.  Ask questions about anything, no topic is off limits.  

    I understand your worry.  I am also stage IV.  I have been though many different treatments over the last 4 1/2 years.  I have had some times that were not good, but I have had many more good days.  I have been able to welcome 4 great grand babies.  My life is different from what I imagined it was going to be, but it is still good in many ways.  Treatment has come a long ways in the last few years.  Don't believe all the statistics out there.  You are a statistic of one.  Don't give up, there is always hope.  I have been blessed with good doctors from the beginning, but even with that, I still look for a second opinion if I have any doupts at all.

    Hugs and prayers, Lou Ann

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Welcome Kinkymarie,

    I echo what each lady has said so far and want you to know you are not alone.  My best advice and the thing that has helped me is to not run to far ahead in your thoughts.  Try and live in today because this is the only day each one of us really has.  Be thankful for the simple things, for they really are the fabric of our lives and most of the time we are rushing along so fast we don't stop to see how amazing those things really are. 

    Taking that position allowed me to take each day as it came and to move along one foot in front of the other and I got through diagnosis, surgery, staging, treatment, all of it just that way.  If my mind started racing ahead I had to remind myself that I had TODAY and ask what was I going to do with it.  It helped me.  I hope it helps you too.  The answers you are seeking will come and you will deal with them one at a time.

    I have stage 3a, grade 3 endometroid adenocarcinoma and had 6 rounds of carbo/taxol along with neulasta when my white blood cells dropped for the last 4 treatments.  I chose to work with a naturopath who specializes in oncology and together with acupuncture, supplements, iv therapy etc. I think we headed off the worst of the "side" effects.   I eat organic, drink 1/2 my weight in ounces of water each day, exercise (yes, as much as I could during treatment) and leave sugar, gluten, pre-packaged foods, meat and dairy out of my diet.  I finished treatment Sept. 21st and am feeling a little stronger every day.

    There is HOPE and there is LIFE.  You will find what is right for you but do remember, no one can tell you how long you have because as the others have said, you are you, a statistic of one.  (((HUGS)))

  • derMaus
    derMaus Member Posts: 558 Member
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    Stage IV Is Not A Death Sentence !!

    You'll find a wonderful group of people here, along with lots of other Stage IV survivors. Per my other readings, the traditional Stage I-IV model is less useful than a regional model: located in the same area, spread to related areas (I'm assuming yours falls into this category), and spread to distant areas. I'm Stage III, Grade 3 myself, and in the middle of chemo. I've had 2 treatments, with 4 more to go, and I can certainly tell you that it's do-able. They give you a bunch of buffer drugs up front, then ease the chemo into your system slowly to watch for reactions. Some folks on this board have had bad reactions but many have not. The infusion center staff are very, very careful and monitor you every second, so if something starts going wrong they shut it down immediately. I had very minor shortness of breath on my first infusion and nothing on my second, in fact, I haven't even had bruising on the veins they used (I now have a port but have yet to use it). I haven't had the deathly exhaustion some do, just some lassitude and tiredness for a couple of days after each treatment. My strongest side effect has been nausea, but that's only occurred with the tiredness, hasn't lasted past 72 hours, and is managed with medication. Fortunately I've had no smell-induced nausesa, odd tastes or metallic aftertaste issues. I don't have a lot of appetite but I eat whatever strikes my fancy - yesterday it was two of those horrible Jack in the Box tacos, a favorite hangover food of my college days. What sounds appetizing shifts from hour to hour, but thus far I've been fortunate in that nothing is making me sick to just think of it. 

    Of course my hair is almost entirely gone, but you know that'll happen. I had mine cut super short and it held up pretty well until right before the second treatment, when it all let go in a few days. That said I still have dandelion fluff all over, which some people also keep. I'll get back to you on how much longer mine hangs on, but for me I think the short cut made it easier: I wasn't losing "my" hair, I was losing some ugly haircut that wasn't me anyway.

    This is perhaps too much detail, but when I was first diagnosed I found great comfort in copious information, especially details from people in the same situation. This board has been a godsend for me, and I'm sure you will find great comfort in it yourself. Hand in there, once you're in full-on treatment mode you'll feel better emotionally because you'll actually be *doing* something. The waiting for treatment to start was the worst for me, but now I feel better that's actively engaged in this fight. Hope that makes sense...

  • kinkymarie
    kinkymarie Member Posts: 2
    edited January 2017 #8
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    iSecond opinions

    How do you find second opinions and how does the insurance look at them?  Do they pay?  I already have a smell induced gag reflex without having any treatment.  I also don't really have any family and therefore no people to hang on for.  That is one reason I am leaning towards quality not quantity.  I do the enjoy simple things be here now thing but this cancer is just the icing on the cake of crap that has been my life and I am finding myself numb to everything shutting down in order to go on.  It seems that every time I get past one disaster another pops up.  I was at my limit before cancer.  I would like to live in but I don't have the motivations. Most of y'all have.  There are no stats about not receiving chemo and you people are from that 17% or whatever that made it.  I am touched by your posts and teared up but I can't cry. I don't remember the last time I cried - not even when my parents died.  I don't know if I have the drive to do this.  I don't want to be in pain any more.

  • Soup52
    Soup52 Member Posts: 908 Member
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    Kinky, I'm so sorry that your

    Kinky, I'm so sorry that your life has been difficult in addition to the cancer. My only suggestion is to go to the appointment with an open mind and do what you feel is best for you. I was diagnosed stage 3C grade 3 and so far after survery, radiatio, and chemo I am NED. I just have some neuropathy in my feet and a little stomach issues from time to time. I'm enjoying life.

  • MAbound
    MAbound Member Posts: 1,168 Member
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    ((kinkymarie))

    I am so sorry that you are in such a difficult place right now. A lot of us have felt alone on this journey until we found this forum because even though we may have the support of family and friends, their perspective and fears are different from ours and they don't alway quite understand  what we're feeling or what our needs are. They don't always let us express what we need to because it scares and upsets them. This is a safe place to do that. You are not alone. We may not always have answers for you, but you never know if what gets shared here will help you or someone else. What's going on with you matters. Never doubt that. Some of us even find having our diagnosis a blessing because through it we find new friends and a strength we didn't know we had. I hope that happens for you. I know it all seems so overwhelming in the beginning, but most of us get through it by just focusing on what we need or want to do one day at a time. It is doable and you've already made a good deal of progress towards the prize. 

    As regards your questions, first of all, stop looking at or worrying about stats. Numbers are too generalized and too easy to manipulate to carry a lot of weight when things get personal. We like to think we are all a statistic of one because we are all unique in what we are dealing with and with what we bring to the table. Statistics just don't matter or apply to us as individuals.

    Insurance companies all differ from each other in coverage, so you need to start querrying yours as to what it will cover and perhaps they would also help with suggestions of who you can go to for outside opinions. Your primary care doctor may be another good source and if you are willing to share what area of the country you are in, there may be ladies here who could point you towards doctors to see for 2nd or 3rd opinions that they think well of.

    As regards issues in your life that have you in a difficult place, it wouldn't be a bad idea to share this with you're primary care doctor. He/she could refer you for professional support that would really help you to cope with all that you have on your plate right now. 

     

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    iSecond opinions

    How do you find second opinions and how does the insurance look at them?  Do they pay?  I already have a smell induced gag reflex without having any treatment.  I also don't really have any family and therefore no people to hang on for.  That is one reason I am leaning towards quality not quantity.  I do the enjoy simple things be here now thing but this cancer is just the icing on the cake of crap that has been my life and I am finding myself numb to everything shutting down in order to go on.  It seems that every time I get past one disaster another pops up.  I was at my limit before cancer.  I would like to live in but I don't have the motivations. Most of y'all have.  There are no stats about not receiving chemo and you people are from that 17% or whatever that made it.  I am touched by your posts and teared up but I can't cry. I don't remember the last time I cried - not even when my parents died.  I don't know if I have the drive to do this.  I don't want to be in pain any more.

    Second opinions

    Hi Kinkymarie, so sorry to hear about your diagnosis and that you are in pain. Here is my experience with second (and third) opinions. I hope this information is useful to you.

    Once I received my diagnosis from my local gynecological-oncologist (carcinosarcoma aka "MMMT"), I called the nearest Cancer Center (Moffitt in Tampa) and asked them if they'd be willing to look at my case. They agreed and I made an appointment with them. They took all of my insurance info and handled all of that part for me. They also contacted the hospital where I had my surgery and asked them for some of the tumor slides. At the appointment, they talked to me about the original pathology report and what it meant regarding treatment (their take on the treatment was different than the original gyn-onc).

    A few days later, they called to tell me that their pathologist had come back with a completely different diagnosis for me (high-grade endometrial stromal sarcoma). Well, as you can imagine, it was quite a surprise so I asked them to send me and the original gyn-onc a copy of that new pathology report. I then made an appointment with the original gyn-onc to discuss this controversy.

    At that appointment, the original gyn-onc contacted one of the leading gynecological-pathologists in the country (Robert H. Young, MD of Harvard/Mass General Hospital) who agreed to look at my case. Ultimately, he sided with the first pathologist's opinion (MMMT) - although he indicated some reservations about it.

    Subsequently, the original gyn-onc sent a piece of the tumor out to be tested against various chemo combos. We used the one that worked the best against the tumor in the petri dish along with external radiation as my front line treatment. I've had no evidence of disease or "NED" since the end of front line so it looks like we made the right decisions (at least so far).

    The insurance company (United Health Care) never blinked when the charges for the pathologists and office visits were submitted. They did fight the charge for the different chemo tests but my gyn-onc's office did their magic and I never received a bill for it.

    I hope this information helps you but please don't hesitate to ask if you have any additional questions. No subjects are off limits here. Good luck to you in whatever you decide. 

    Wishing you strength and peace,

    Kim

    Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor - Sept 2015; 47 years old

    Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3

    Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016; Radiation - external, 28 treatments, completed Mar 2016

    NED: June 2016

     

     

  • pinky104
    pinky104 Member Posts: 574 Member
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    A stage IVb survivor

    I am one of the people that survived against the odds.  I had stage IVB UPSC, a very aggressive cancer, yet I am still here after 6-1/4 years, and as far as I know, I am still in remission.  I have another routine check-up in early Feb. I always face the possibility that it can come back at any time, so I try not to brag about it too much.  I just like to give people some hope for their own cases.  My cancer was in my uterus, both ovaries, the omentum, and the small intestine.  I had cancer surgery, gallbladder surgery, and an appendectomy all at the same time, and I didn't feel too good after all that.  I underwent 6 chemotherapy treatments of carboplatin and taxol.  The worst part of it for me was losing my hair plus being a little short of breath when walking.  I didn't have any radiation treatments, just the surgery and chemo.  I wouldn't be here today if I hadn't gone through them.  Don't give up because of all the bad things you've read.  Everyone is different, and you might be one that gets through it all relatively easily.  Give yourself a chance on life!