Newly Diagnosed as Stage 4

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. 

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

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...

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.

kinkymarie said:

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.

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