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Survival with UPSc stage IV

pinky104
Posts: 574
Joined: Feb 2013

After reading the UPSC roll call, I'm now wondering how many of you have survived with stage IV of UPSC longer than I have.  I had my surgery May 11, 2010 and I remember seeing some people in the past who had survived it longer than I had, but I haven't seen any recently.  Are there any others left who have survived longer than the four and a quarter years I have?  I should know in Sept. whether or not it has come back (a mass was found in my peritoneum in late May but my CA 125 was only 6.3, so my gyn/onc is ordering another CT scan to see if it's grown).  Seeing how few other stage IV survivors there are on the roll call is making me a bit nervous.

anam2012
Posts: 7
Joined: Jun 2014

I've been lurking for a couple of years and have always read your comments with interest.  i had surgery October 2012,, pathology report showed cancer had spread to the bladder and the perotineal wall plus of course on the uterus. Diagnosis UPSC stage IV.No cancer found in lymph nodes.  i went through chemo and pelvic radiation but no brachytherapy. unfortuanely I've had two recurrences and am currently in treatment with Doxil for the second recurrence.  I haven't survived longer than you, but I am hopeful that with time and new research there will be many of us surviving longer. 

artist49
Posts: 87
Joined: Oct 2011

Pinky,  as you see on the roll call, my surgery was September, 2010 and I'm getting just as nervous as you about

the lack of long term survivors on this  site.  I have an upcoming CT scan on September 4 so pray for me

and I'll pray for you. I also had 40 cancerous lymph nodes so what are my chances anyway?

pinky104
Posts: 574
Joined: Feb 2013

Thanks for your comments.  You probably already know that mine was in the uterus, both ovaries (but interestingly, not the tubes), the omentum, and the small intestine.  I only had chemo, so I guess I've been lucky to have survived as long as I have with just that.  Where were your recurrences located?  My possible recurrence (which may or may not be cancer) is in the peritoneum, in the paracolic gutter, wherever that is.  All I know is that it's on the right side.  The gyn/onc never found any in my lymph nodes, either.  I guess it's just spread laterally, as someone once told another person on this site that UPSC does.  I have labwork this week, a CT scan on 9/8, and I'll find out if I need surgery again on 9/15.  If I need that, I'm wondering if it's going to interfere with the incisional hernia repair I had in 2012.  I did fairly well with my chemo in 2010 (Carbo and Taxol), so I hope I don't need a change to another type.  I'm sorry you've had two recurrences so soon.  It sounds like that may be the norm for our cancer.  It's a bit scary, especially after hearing about the others who didn't make it, like Jan.  I'm not really having much in the way of symptoms.  Once in awhile, I get a pain here or there in the abdomen.  The pain might be due to cancer or it might be because I have diverticulae.  I have had a couple of black and blues on my legs, which I used to get often when I had the last bout of cancer.  I had wicked hot flashes the last time around but I haven't had many of them lately, except on hot days.  I'm really feeling fine, so I hope I haven't had any growth of the mass on my next scan.  

Good luck to you.  I hope all goes well with the Doxil.  Let me know how it goes.  Do you lose your hair with the Doxil?  I've grown mine out long and I'm really going to miss it if I have to lose it again.  My wig was really uncomfortable. 

Where do you live?  Are you in the northeast by any chance? 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Ladies,

I want to tell you that I am hoping all goes well with your CT scans in September.  I pray that you have good results.

Warm Wishes,

Cathy

anam2012
Posts: 7
Joined: Jun 2014

My recurrence ct scan showed slight pleural effusion right lung, trace ascites, soft tissue nodularity of the peritoneal surface,several enlarged retroperitoneal lymph nodes.  Started treatment with carbo/taxol and Avastin, did six rounds and started Arimidex when I finished chemo. Unfortunately, within six weeks of finishing chemo my CA125 started rising pretty quickly, started Doxil when it went to 1100 and at my second Doxil treatment this week it was at 1177.  So Avastin and Arimidex didn't do anything for me and although carbo/taxol brought my numbers down, they didn't stay down so doctor says the cancer has become resistant. I'm hoping Doxil gets me into remission, it sure would be nice. In answer to your question, I live in Northern California. I haven't lost my hair with Doxil, but it's still very short since it just started growing back from the carbo/taxol combo. It came back very curly last year, still waiting to see if it will be curly or straight this time around. :)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

Thank you for sharing with us anam2012.  I am sorry you are experiencing another difficulty, I pray for those I "know" and the others I don't know who are fighting.

pinky104
Posts: 574
Joined: Feb 2013

Thank you to everyone who replied with their well wishes.  I'll be praying for all of you, and for those of you who need prayers the most, like Cathy (AbbyCat 2) and anam 2012,  I'll ask for a miracle.  And thanks for the info. about hair loss with the other type of chemo.  I hope I won't need it.  One thing the roll call is showing me is that we have this cancer from one end of the country to the other.  From reading the comments over the last several years, I was under the impression that Texas was particularly hard hit with uterine cancer.  Now, I'm seeing several people from New York state and Pennsylvania.  In my area of upstate NY, there has been a higher incidence than normal of some cancers.  Some of them have been attributed to nuclear fallout from the testing that was done in the Nevada desert in the 50's.  I've heard that torrential rainstorms forced the radiation down which had been expected to go out to sea. There were also several manufacturers that polluted the environment locally, like GE with its PCB's that it dumped in local rivers.  I don't know if any of these things contributed to my cancer or to anyone else's uterine cancer but I find the studies interesting.  I know of two other UPSC cases within my vicinity.  I don't think either of these people have answered the roll call yet.

It really is getting a little scary that nobody seems to be replying about longer term survival.  I'm hoping it's because they don't get on here anymore, and not that they've all passed on.  Does anyone know any UPSC survivors who had stage IV longer than I have who haven't replied to the roll call yet?  I know there are people on here who read the comments but never reply.  There are also a lot of people who don't use computers, especially in the older generations. 

As long as we're alive, we can still have hope.  Most of the research seems to be done on breast cancer, but maybe somebody will stumble on a cure for uterine cancer when they're trying to find one for breast cancer.  Stranger things have happened. 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

Pinky, thank you for your kind words of support. I am really glad that I decided to be a member of this forum.

Cathy

anam2012
Posts: 7
Joined: Jun 2014

Thank you for your prayers and support.  I've wondered in the past if stress brought this on for me and the fact that when you are under a lot of stress you don't take care of yourself as you should. I've had a genetics doctor tell me that most cancers are 95% environmental and @ 5% are genetic.  I don't know what research she was quoting or what the details were. One of my questions is how long does it take to get to a stage IV,  if I could figure that one out maybe there would a clue to the trigger?  Or maybe not. :) I too hope that no replies mean that stage IV women are still out there but living their lives and moved on from these boards.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Don't know the answers either, but a much wiser cousin of mine{who has three of her four kids on the Autism Spectrum}says," Genetics loads the gun, envionment pulls the triger".  Think this applys to all diseases!  Debrajo

pinky104
Posts: 574
Joined: Feb 2013

Stress definitely plays a part in getting this.  I had a stressful job for years and I have a friend on here who was also under a lot of stress at her job when she got UPSC.  My mother had breast cancer twice and the second time she got it, she was evicting my brother and his no-good girlfriend (later wife) from her house.  My brother's girlfriend was calling her a lot of four letter words, and my mother never did anything to the woman except take her in when she was pregnant with twins.  The woman even tried to trip my mother when she was going down stairs.  She was nasty!!  No wonder my brother's marriage to her was her fourth marriage!  It didn't last long, but she made the rest of his life a living hell.  My brother has since died of a heart attack at 57 (while I was undergoing chemo) and I'm sure she was partially to blame for that.  I've since read that stress can cause cancer (and heart attacks) in several places.

I think there were a number of factors in my having gotten UPSC, and stress was just one of them.  I had thyroid disease and gained too much weight.  Fat messes up estrogen levels and makes a person more likely to get cancer.  I was drinking lots of Mountain Dew and craving candy.  Cancer feeds on sugar so that's probably why I was craving it.  I lived on a farm as a kid where my father used DDT on the crops, and we had asbestos on the pipes in the cellar and in the siding.  I could go on and on.  I can think of more reasons why I got cancer than why I shouldn't have.

I actually think I had cancer for at least 5 years, maybe more.  I read a magazine article about celiac disease and recognized symptoms my mother had as that.  Her doctor agreed.  Since celiac disease can be hereditary, I kept thinking some minor abdominal pain I had was that.  I was tested three times, but each time the tests came out negative.  So did my yearly pap smears.  I should have suspected something one year when my family physician had trouble finding my cervix for my pap smear.  I knew I had a tipped uterus, so I just thought it was that.  Now I wonder if the cancer was pushing things around in there.  My CT scan described my omentum as having a cake-like appearance, with layers of cancer built up in it.  I didn't bleed until a couple of months before my surgery, so I'm sure I was stage IV by then.  I did have lots of hot flashes.  I'd been in menopause for 8 or 9 years before I had a hot flash, but my doctors didn't question why I was suddenly getting them.  They went away after my surgery. 

A few days ago, I read an old comment that someone had put on this site, and she said she'd gone from stage I to stage IV in one month.  I know everybody's different, but I wondered if that happened or if her doctor missed something the first time.  I guess there's no way to know.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Pinky,

 I have wondered, too, about what causes cancer.  I think stress definitely plays a role in the development of cancer, as does exposure to toxins, cigarette smoking and obesity.   I know for myself, the two years leading up to my cancer diagnosis I was trying to cope with a loved one's diagnosis of bilateral breast cancer.  I was her support and advocate throughout the initial biopsy, diagnosis, 4 surgeries, and chemo plus 36 radiation treatments.  I thought she was going to die.  I tried to become an expert on her specific type of breast cancer - Her 2 Nu positive. a grade 3 cancer.  Little did I know that all that studying would help me with my own diagnosis!

No doubt, genetics play a nasty role in the develoment of cancer.  In my case, there was a great deal of cancer on my Dad's side of the family.  My father and his three siblings all had cancer. My father's mother and her 8 siblings all died of cancer.  My father died at nearly 98-years-old and it wasn't cancer that killed him, although at the time he died with Lymphoma. My Dad died two weeks after I learned that I had UPSC.   He had also been diagnosed with 4 other separate cancers: prostate, urinary bladder, basil cell carcinoma and squamous cell carcinoma (the last two are skin cancers). My paternal grandmother died of uterine cancer and my father's sister either had ovarian or uterine cancer which killed her.  I guess I always figured I would get cancer but not until I was in my 80's like what happened to my aunt and uncles!  Instead, I got cancer at age 60.  Incidentally, my 32-year-old nephew was diagnosis in 2012 with Lymphoma. My father's brother also had Lymphoma.

As you can imagine, my two older sisters and my older brother are understandably nervous about their health.  

Take care,

Cathy

pinky104
Posts: 574
Joined: Feb 2013

Wow, Abbycat2, your family history is just unbelievable!!! I thought I had a lot with my mother and grandmother's having had breast cancer and my father's having had prostate cancer.  My father's daughter by his first marriage had lymphoma and died about 2 months after being diagnosed when she was around 79 or 80.  Her only symptom was leg pain.

I actually had basal cell carcinoma on my neck at one point and had it removed.  That was probably about 2005 or so. 

I have an unusual form of hemochromatosis, diagnosed when I was still short of breath 3 mos. after chemo.  That can cause cancer in some organs and it's hereditary, but the uterus isn't one of the places that it normally causes cancer to develop.  I don't think the places your relatives had it are places that it causes cancer to develop, either.  I think I've figured out from talking to the wife of my uncle's great great grandson on ancestry.com (I had my DNA tested there) that it came down through my father's side of the family.  There are a number of deaths on that side of the family due to heart attacks at an early age.  Now I'm wondering if my father's daughter developed lymphoma because of that.  I'll have to check out my book on hemochromatosis and see if the blood is one of the places in which it can cause cancer.  I'll let you know if I find anything on that.

It certainly seems like there must be some kind of disease in your family that is causing so much havoc with everyone's lives.  It's no wonder your sisters and brother are worried.  My sister wanted me to get a genetic test to see if she could get UPSC, but my oncologist told her that there was no pattern of genetic problems causing UPSC.  I'm not so sure he's right after reading about the people on here that have Lynch Syndrome, but my cancer started at 61, so I guess I probably don't have that.  Apparently, Lynch Syndrome starts at an earlier age.  I still wonder about the connection between breast cancer in the family and my cancer. I'm not sure what has been found out by the medical community since I was diagnosed over 4 years ago.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I believe that genetics do play a large roll in many diseases including cancer, but that there are also environmental triggers, stress being one of the greatest. I too was under a great deal of stress for several years before being diagnosed with UPSC. As far as I know, no one in my family on either my father or my mother's side have had cancer. I was also diagnosed with thyroid disease a year or two before my cancer diagnosis and I was overweight as well (although I don't know how much the thyroid had to do with my weight!).

I have also noticed that several women on this discussion board have mentioned having a tipped uterus. I also have a tipped uterus. It would be interesting to see if this is a common occurrence for uterine cancer victims. If others could let us know perhaps we will se a relationship.

Sandy

ConnieSW
Posts: 1574
Joined: Jun 2012

We can do our own research.  My uterus wasn't tipped.  Have you found any statistics for ratio of tipped uteri population wide?

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I had a tipped Uterus.   Dx June, 2014.  UPSC Stage IIIA  Grade 3.

Jeanette

anam2012
Posts: 7
Joined: Jun 2014

Pinky,  I Also  grew up on a farm and didn't leave until I was eighteen. I worked on the farm so I'm sure I was exposed to a lot of fertilizers and chemicals.  I am 59 and was diagnosed when I was 57, so we are pretty close in age.  I also think my cancer was triggered about four years before I was diagnosed. Hindsight being 20/20 I can see that my stress levels were at an all time high back then. I even had my doctor suggest I take time off work and take care of me. I was concerned about cancer but my body wasn't providing any warning signs Other than a swollen lymph node behind my left ear.  I was treated and a biopsy was done but everything was benign.  Later I had a skin condition on my face that was treated. My pap a year and a half before diagnoses was clean.  Go figure.

Cancer tends to run in the family maternal (9 siblings) and paternal (3 siblings). There's been uterine (not UPSC), liver, kidney, mouth, bone, lung, breast, leukemia,  and prostate.  So no surprise, genetics loaded the gun as was quoted earlier.

Ana

marieinlv
Posts: 47
Joined: Aug 2011

I was Dx with UPCS stage IV after exploratory surgery on 11-17-2010. Yep, very happy to report we can go into remission for a valuable time to gain strength and learn how to better deal with stress. I am not comitted to wellness(wanna be), however i certainly have learned alot about the value in not stressing in the max, eating alot more nutritiously, eating alot less wasted calories and horrible waste of our $, and risky to our health.

I have briefly filled out the info area on our site that tells a bit of the history at the begining of treatment. I did get another remission confirmation 3/14. I understand the doubt, worry, uncertainty, and lots of other emotions. I have a good imagination on my own, that is why i can't feed it by staying close to my great cancer group at The Caring Place, or this wonderfull discussion board. I have been more informed by this site than any other. The folks that can continue to keep in touch and encourage are an awesome Blessing to me.

I do come back to see how you all are doing, and I'm sad to see a few beautifull ladies struggling but not giving up ever. I pray for the families that have lost this struggle.  I'm a Believer and lean into my Faith to help with all that we continually learn from this time in our Long Life :).

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Congrats on remission.  I, too, have learned more on this site.    I'm glad that you posted today.  Check in once in a while for us.

I, too, am a believer in Jesus Christ and He has been my strength.  Take care Marieinlv

Jeanette

pinky104
Posts: 574
Joined: Feb 2013

I saw your comment, anam2012, about your pap smear's having been negative.  I always had yearly pap smears and was very surprised my cancer hadn't shown up on them, but when I commented to my doctor about it, he said that uterine cancer doesn't normally show up in pap smears.  It's only found in pap smears when a few cells happen to migrate out of the uterus and end up there.  I have seen comments from a few people on this site that had that happen, but it's the exception, not the rule.

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