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Reoccurance Rates

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

While I am still going to chemo to even make it to surgery to even get past my first discovery of the cancer, I am wondering what kind of chances of reoccurance people were given by thier doctor for various stages of Endrometral cancer? I wonder how much this study vs what doctors told people. I also wonder if Uterine vs Endometrial cancer has different rates, but they are so close to being the same thing so might be close.

Seeing this small study I found from 2002 to 2010 ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987371/ ), this gave the following percentages per stage of chances of reoccurance but also notes the lower the grade, helped the chances. From the link above "The recurrence rate was significantly different between patients within different FIGO-stages; 6.5%, 20.0%, 37.5% and 66.7% in FIGO-stage I, II, III and IV respectively ".

Being probably stage 4 (I am crossing my fingers that I will be stage 3 upon surgery but it is likely wishful thinking), I might be thrilled even if I have a 33% chance I might not reoccur even being stage 4. I wonder if this board has had anyone at a high stage (4)  not reoccur in 7 years, but I am assuming they likely lost contact over time.

 

 

Jairoldi's picture
Jairoldi
Posts: 202
Joined: May 2017

LadyMox, I was diagnosed with Stage 3B UPSC in May of 2017.  My doctor said my first goal was to get to 2 years without recurrence.  I was told that I had a 20% chance of getting to 2 years without recurrence.  I asked again after all treatment and my doc's PA said the same thing 15-20% chance of not recurring before 2 years...translated 80% chance it would rear it's ugly head.  If it hasn't recurred before 2 years then there is a good chance I can get to 5 years. At least that's how I interpreted what I was told.  My PA said we can let out a small breath at 2 years from diagnois, let out a little more breath at 5 years.  There is a reason we are seen so frequently the first 2 years ;).  I'm almost 1.5 years our from diagnosis.

MAbound
Posts: 854
Joined: Jun 2016

I know this is asking a lot, but please stop looking at statistics. They are meaningless as you are your own statistic and none of that nonsense really applies to you specifically.

The only thing those numbers do is give false security or despair. When you are in the midst of treatment they are really counter productive to what you have to accomplish. I understand that you are in a scary place right now without the certainty of what you get from the pathology report after the hysterctomy, but while you are getting chemo you are still moving in the right direction.

Whatever the stage of cancer you end up at, there will still be much that can be done to beat this beast back and it is so worth it to do what you have to do. Attitude is a big part of having the resolve to get where you want to be, so you need to focus more on what inspires you rather than what pulls you down. You can do this!

As to chances of reoccurence, we all have to live with that cloud hanging over our heads for who knows how long...probably the rest of our lives. All one can do once treatment is over is live one's life as best you can and only think about it when there is no other choice.

Things you can do for yourself proactively now is to ask for a tumor assay when you have your surgery so you get a treatment plan that will be the most effective for you. Also, since you have the hormone driven version of uterine cancer, ask if they will test your estrogen and progesterone receptors for activity and strength to find out if hormone therapy like megace after treatment would be an option for you. Educate yourself about genetic and genomic testing. These tests give your oncologist more tools in his chest for treating you, but they aren't always covered by insurance, so you'll need to decide for yourself if they'd be worth the cost out of pocket for you. 

There are so many more positive and practical options for you to research and learn about rather than statistics. It's natural to want to have some assurance that you are going to be ok, but what you are going to find online and even what your doctor may offer is so meaningless that I just wouldn't do it anymore if I were you. Nobody can know what your outcome will be, but you can put yourself in the best positive position by adopting the mindset that you are going to throw the ktichen sink at this thing. We'll be here to help you through that. 

oldbeauty
Posts: 189
Joined: May 2012

Please don't do this to yourself. I was told in 2005 that I was cured of my Stage IC Grade 2 "garden variety" endometrioid adenocarcinoma.  Since then, I've recurred two times at approximately 5-year intervals.  What does this mean for you?  Absolutely nothing.  What does it mean for me?  It's more likely than not that I will recur again but who knows when...or if?  I've worked hard this year to regain my health following chemo and I feel great, I'm physically fit, I'm the weight I last was 15 years ago and I'm doing a home renovation.  I try to focus on the right now and enjoy myself.  I just ordered a pair of eyeglasses in a wild abstract art pattern!  Who cares what people think?  My husband likes them and they look happy. In the intervening time, there are further advances in treatment.  I could be hit by the proverbial bus tomorrow!  Who knows?  Like MABound suggests, it would be far more productive for you to focus on taking care of yourself during chemo and doing whatever may be necessary insurance-wise or fund-raising-wise to secure genetic testing of your tumor tissue when you have surgery.  This may be the one and only opportunity you have to obtain sufficient tissue for testing that may help you in the event you do recur.  Please don't go looking for reasons to add to your anxiety and despair.  A cancer diagnosis is hard enough to cope with in the here and now.  Please refocus your efforts and ask for professional help if your mental health is unhealthy.  My husband and I met with a counselor at the diagnosis of my first recurrance.  It was very helpful for both of us.  Best wishes to you, Oldbeauty

Donna Faye's picture
Donna Faye
Posts: 233
Joined: Jan 2017

Listen to the wise ladies here - concentrate on staying strong and doing what you need to do to get to surgery. I had stage 3 BC 25 years ago with 21 involved nodes and they gave me - Maybe 2 years ! Boy did I fool them  Now that I have had UPSC and a small recurrance, I am doing fine and enjoying every day. Do not worry about what you cannot change - just fill every day with love, laughter and happiness. Read the blogs of us who are warriors and make every day count. xoxo

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I've got too much time on my hands and ready access to the internet lol. I work in IT and always am near tech. I am well aware these stats are not only a tad old but a small group and of course can't account for so many personal variables plus a number of you have beat the beast back even when reoccurring.

I do want to get that tumor testing.. Maybe even paying out of my pocket if I can and it's needed but not sure the cost but hoping my insurance covers it. I will meet with my doctor right before my 3rd chemo and I can ask about the tumor assay. My tumor was 5x5x4 inches before chemo so should be plenty to go around even if it shrunk by half. 

I'm sorry, I didn't mean to upset anyone.  I'm a person who likes to plan ahead, so while not possible here.. my brain wants to try.

MAbound
Posts: 854
Joined: Jun 2016

I had Independent Health when I went through treatment and they assigned me a case manager for asking when I had questions. If you have this insurance (It's a major insurer in Buffalo) and haven't had a call from one yet, maybe call the number on your card to ask if you are supposed to have one so you can ask testing coverage questions.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I have had my insurance company call me twice, I never knew exactly why except they asked me how I was doing maybe I can ask them about the tumor assay once I figure how to contact them back exactly lol (I'm sure I can call thier generic number and get the info) . My insurance is Blue Cross and my husband is a Buffalo school teacher so our insurance is pretty good as far as we can tell so far. This year is really the first year we really put it to the test.

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