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Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

I am new to this blog and needing advice and information and anything anyone with this cance is willing to share.  I was diagnosed in December.  My original cancer was misdiagnosed in 2010 and I was not treated correctly then so my options are limited now since this is bing view as a recurrence and not tthe first time treatment, even though it sort of is.  I am hoping to get information about what to expect from those of you who have been down this road before me.  I am on the chemo treatment only and my 4th round will start next week.  When we started my CA125 was 2276 and went down to 476 after just two treatments.  I am choosing not to believe all the information as the stats for this cancer seem to be dated and I have to believe that there has to have been some progress with treatments in the last 3 to 4 years.  I have many questions about life after chemo and what to watch for and how to beter live.  Anyone out there who is willing to share I am willing to listen..Lesa   

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

Hi Lesa, Sorry to meet you like this, but will try and help if I can.  I am UPSC also, dx. in July 2009, finished six rounds taxol-carboplatin and five rounds of internal radiation.  I was caught early and have been blessed with no recurrance.  If you would like to ask me anything I will be more than glad to answer.  It would help to know the stage you are and what treatment you are getting.  Nothing is out of bounds or too personal here, but if you had rather, you can CSN privite messange me.  Try to breath and stay calm...you are not alone and everyone here has your back!  If I don't know the answer, someone else here will!  Best, Debrajo

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

Debrajo,

They will not stage me since this is a recurrence.  But I have it on my plura cavity, abdomen and pelvic floor.  Not good when I see it in writing.  I am only getting chemo at this time since it is in so many places.  If they had diagnosed me correctly the first time I should have had the same treatment you did and my likely hood of recurrence would be less than 20%.  This is just such a mess to have been missed by the pathologist like this in 2010.  Mine was originally caught so early in 2010 that it was not even a stage one.  My former oncologist did not even have the guts to tell me that it was misdiagnosed, I found out when I went to get a second opinion.  I feel like it was such a betrayal by the original Dr.  I want to write them a letter and ask did they even care it was a life at stake on the slide or were they just hung over or worse yet didn't care.  And how many other women have they done this to?

Enough venting.  I just want to know if I even have a little chance of living past the 3 years in the stats...

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

Debrajo,

They will not stage me since this is a recurrence.  But I have it on my plura cavity, abdomen and pelvic floor.  Not good when I see it in writing.  I am only getting chemo at this time since it is in so many places.  If they had diagnosed me correctly the first time I should have had the same treatment you did and my likely hood of recurrence would be less than 20%.  This is just such a mess to have been missed by the pathologist like this in 2010.  Mine was originally caught so early in 2010 that it was not even a stage one.  My former oncologist did not even have the guts to tell me that it was misdiagnosed, I found out when I went to get a second opinion.  I feel like it was such a betrayal by the original Dr.  I want to write them a letter and ask did they even care it was a life at stake on the slide or were they just hung over or worse yet didn't care.  And how many other women have they done this to?

Enough venting.  I just want to know if I even have a little chance of living past the 3 years in the stats...

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

Hi. Although my story is a little different to yours, I do understand about "recurrence" when you didn't know you had the original!  I had a hysterectomy in 2001 and they didn't find any cancer.  But I had a "recurrence" 7 years later.  I am now on my third recurrence (so far, I've had radiotherapy, more surgery followed by chemo and I am now on hormone therapy).  But life does go on and the "new normal" is to be in and out of treatment keeping this beast under control but to live a pretty much normal life apart from that.  I don't have UPSC - I have the more common adenocarcinoma, but the rules of the game are pretty much the same.  I know that there are other ladies here who have fought recurrences of UPSC, so we are all here to help and support you.

Hope your remaining chemo goes through without any problems.

Kindest wishes
Helen

 

NorahS
Posts: 93
Joined: Dec 2012

On the positive side, your CA125 is coming down nicely - from 2276 to 476 after 2 treatments! Well done!

My assumption is that your chemo is taxol/carboplatin. If you're not sure what chemo drugs you are having, be sure to ask at your next appointment and let us know.

Next, you don't say whether you had a hysterectomy.  Again, I'm going to assume that you did - perhaps in 2010?  My understanding about UPSC is that it spreads in much the same way as ovarian cancer does. I have read/heard the description of how UPSC spreads as 'laterally'- which, I guess, is as good as a description as any. Anyway, this is why many of those with UPSC sometimes read at the Ovarian Cancer board - it's because both of these different cancers spread in much the same way.

If, when, and how UPSC spreads and recurs is the big unknown of this cancer - and why it is sometimes called a "crapshoot cancer". I visual this as everyone with UPSC has to win each battle on the way to winning her own war. Some of us are sometimes engaged in the same battle, sometimes we are in a different battle - but we all want to win the war.

So stay positive. Don't look back - you're not going that way.  Live in the here and now, but don't forget to look forward - that's the way you're going. Go to your chemo treatments, but also keep making plans for the future.

 

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

Complete hystorectomy in 2010 with no cancer in the lymp nodes at all.  Yes you are correct the chemo is taxol/carboplatin, which I have not had too many side effects from other than tired and a few nausea bouts.  Of course the hair is gone but that is just hair and I don't even care about that, other than the cold head :-) hats are our friends.  I am just looking for those of you who have been down the road to tell me exacly what you are so that I can breathe again and know there is a future however troubled it may be. 

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

Next week I have my fourth round of chemo (Carbo and Taxall) at MD Anderson.  They will do blood work and a CT scan first and then the next day I meet with the Dr. and get my fourth round of chemo.  My CA125 has dropped after two rounds from 2276 to 476 which I want to believe are good results.  I know that CA125 number is not supposed to be an indicator of how much cancer there is but it would seem that the drop in the number would indicate that the chemo is working.  Dr. says surgery is not possible since this is a recurrence.  She has not mentioned radiation.  I have cancer in my abdomen( pelvic floor, on my bowels and stomach) and in my plural cavity.  I collapsed from not being able to breathe since the cancer had filled my chest with 5 liters of fluid and my abdomen with 3 liters.  That is how we found the cancer.  I just thought I hadIBS and never thought of cancer since my oncologist (old one not new one) kept telling me I was fine at each 6 month check up for 2 years. :-(  Good news is I have lost 38 pounds (no wonder I was dieting like a nut and could never lose weight since it was all going to cancer fluid.)  I want to believe in a miracle that it will go into complete remission and I will live with checkups and tests all my life.  That is the goal, I know reality will not be so but we all have to have a lofty goal and HOPE!  So tell me your experiences and let me get my head wraped around this and prepare my husband for what is to come.  Are your doctors quoting a life expectancy and if so how long?  What are you doing outside of treatment to change lifestyles or support your treatments?  Just tell me everything you can and then some.

NorahS
Posts: 93
Joined: Dec 2012

 

There is a recent roll call thread here:  http://csn.cancer.org/node/251620 

It contains the stories of a number of women here on the board. There are several women who are high Stage 3, even Stage 4 who have been living for many years with UPSC. There are also some inspiring stories over on Eye On The Prize. 

As I have said, it's a crapshoot cancer. Chemo is a systemic treatment and it's unknown if you will respond to it enough to get your CA125 marker low enough and your CT scans clear enough to be considered NED (No Evidence of Disease).  

Right now, I would tell you to ignore the statistics of "how long you have". Forget them, they do not apply to you - particularly with this cancer.  

I am sad and angry for you that UPSC was not diagnosed back in 2010. You should have been offered the chemo that you are now going through when the initial pathology report came back. 

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

Lesa Honey, you ALWAYS have hope!  I was shocked to find i had this "rare, bad luck only"cancer.  It is what it is and we can't go back.  None of us has a "do over button"!  Do not let yourself be a victum to UPSC!  We only have THIS VERY MOMENT to live.  My fear has always been to do really well with the stupid cancer, then get killed on that D@$m Houston Freeway!(I am at M.D. Anderso also, who is your dr?).  There are a lot of things you can do to help yourself.  Get your body in shape(I am BAD about this one!), exercise gently, eat a diet all natural as possible, no sugar or carbs, Super Curcurim(tumeric) and Bioperine(black pepper)Vitamine D3, and get a positive attitude!  Is all this going to cure you?  NO, but it will help your body fight and be strong.  You have OPTIONS.  Do not be a victim!  Get mad at the cancer...yes you were terrible treated, but this will just make you more than depressed.  Get some meds for that, I take Prozac and Xanax and I am not the least bit ashamed to say this.  Whatever it takes to get you through the night and day.  There are a lot of ladies here who can tell you about diet better than I.  A lot here are smarter than me about treatments and meds.  I think it's Ro10 who has UPSC and has been fighting it for years. You will be here for a long time....I am 35 months out of chemo.  Cancer can be treated as a chronic diease now, like diabetis(which I have) or heart conditions(which I have, a birth-defective aortic valve I had replaced six weeks befor my hysterectomy).  We will not any of us be "cured" in our life time, but we can LIVE.  Breath and smile...God's not through with you yet!!!  Best Debra

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Lesa,

Our situations sound pretty similar.  I was filled with ascites (fluid buildup in the abdomen) and that's how this damned thing was discovered after a clear gyn check 7 months prior.  Staging is a number but IV is about as high as it goes.  My CA125 was at 9100 and after 6 rounds of carboplatin and taxol it dropped to 56 and stayed there for a whole 2-1/2 months.  Had 3.5 liters of fluid drawn off after my hysterectomy and debulking (omentum).  Instant tummy tuck.  Started up on Carbo/Gemzar in January but my platelets and WBC took a nosedive so my protocol time schedule has been expanded.  Last scan showed lymph node involvement and CA125 had shot up to 314. I refuse to be a statistic.  If I could only get my diet on the right track!  Locally, Levine Cancer Institute has a program called Integrative Oncology and all survivors - yes, you are a survivor from the moment you get your diagnosis - are encouraged to participate.  There is nutrition, psychological support, massage and a variety of wellness programs.  I went to Duke for a second opinion and was told I had a chronic disease, not unlike MS or any other chronic disease and to treat it as that.  Don't give it more credit; cancer doesn't deserve more credit.  Exercise, diet, positivity are all the right direction for traveling this road.  Make your plans!  Tell doctors to keep their statistics!  Mine wanted to discuss this and I told him we could do that in a couple or three years.  Do whatever it takes to support yourself - read (just finished a book on Visualization and Meditation), exercise, travel, take up something new.  This coming weekend I'm enrolled in Healing Touch - an alternative support modality.  Enjoy every day.  Yesterday can't be recalled or repaired so don't waste time on that!  Tomorrow is a mystery for everyone.  We have TODAY. 

 

 

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Hi Lesa,

I, too, have UPSC diagnosed in June 2011. It was presumed to be a 1a, even though I had no lymph nodes sampled due to prior radiation from another cancer (6 years ago) and the doctor didn't want to cut into my abdomen more than necessary. Cancer was not suspected, but was found during the pathology. It was a very small nodule, only 4mm in size. My pelvic wash came back clear.

I went through the standard 6 rounds of taxol/carboplatin, and have been out of treatment for 15 months. So far so good. One of my favorite phrases is, "you are a statistic of one." I don't think anyone can determine your life span after being diagnosed with this cancer, and you're correct about the stats being old when you read about them on the internet.

When I ask my doctor how her other patients are doing that have been treated for UPSC, she simply says "good!" When I ask about 5, 10, or more years down the road, she still says "good!" She seems very optimistic that I'll be fine, so I've chosen to believe that too.

I'm so sorry you were misdiagnosed at first. Was your surgery performed by a gyn/onc, or a gynecologist? It seems like your CA125 numbers are reason to be hopeful! You know you're responding to the chemo, for sure. If this chemo fails, there are other options out there for you.

Hang in there! Glad you found your way here!

 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

I, too am sad and angry that this happened to you.  Somebody in the system really betrayed you.  I don't really have anything to add to what the others have said except I'm glad you found your way here and you betcha, we're all here for each other.  I wasn't sure I'd need a group like this but my daughter insisted I give it a try.  I am so glad I did and so grateful to the wonderful women on this site. 

be sure to look at old posts.  They are a wealth of info about LIVING with our disease making lifestyle changes to help our bodies fight The invader.

 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

For several weeks this site sometimes refuses to let me edit or even keep typing.  I get tired of just not submitting and starting all over again.  It surely does keep me short and sweet.

Ro10's picture
Ro10
Posts: 1481
Joined: Jan 2009

I too have had problems with my posts.  I thought maybe it was my I- pad.  It is so frustrating to not be able to continue typing your post, or to ba able to edit it.  Sometimes I have been able to back out and come back in and type.  Earlier on Mar Ann's note, I submitted it and then after it posted it I edited it.  Very frustrating.  I can't tell you the number of posts I have lost.

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

Had my scans last week and cancer is moving OUT!!  Almost gone from my lung area and smaller everywhere else.  CA125 down another 305 points for a total of 2105.  So now I'm at 171!  Danced a jig down the chemo hall at MDA.  You ladies have all given me hope and I will beat this if only to live a long life with this inconvenience.  i have to say I am lucky so far with the chemo, I have had hangovers in my 20's worse than this mess.  Never put a period where God inserts a comma!  I am trying hard to get all my excess weight off so that I can manage the future better and I am determine this will not define my life.  It may add to it with the little gifts of more awareness and appreciation but it will not take from me my blessings.  No way!!  And you are all now part of that circle of blessings.  I hope all of you have a blessed day and week and as we will all march on to this new jazz music in our lives that we get to conduct the band and not just dance to it.  :-) 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

I'll do a jig with you, Lesa.  I'm delighted at the progress you are making.  Keep it up!  You know, I have found that oddly enough there have been some silver linings to the cloud I am living under.  This group is one of them.

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

So happy for you Lesa!  I know the weight off the shoulders feeling when you get great news!  I've danced that same jig down the same halls!   I almost had a religious experance when I got to ring the "All Finished Radiation Bell"!  I still get goose bumps when I hear someone else ring the bell!  Keep the good attitude...we all only have the moment we're in.  Maybe we will meet up at M.D. Anderson one day...I go back May 22.  Best, Debra

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Do tell about the bell. Sounds interesting.

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

On the Radiation floor at M.D. Anderson they have a brass bell about 10 inches long that hangs on the wall.  When you finish all your radiation they take you to the bell which has a silk cord and a brass clapper.  They tell you to ring the bell for "all done,all others, and all cure".  I actually gave that bell a couple of extra pulls just for the heck of it!  It is a sign of passage through one door into another round of healing.  Like I said, whenever I hear the bell I know another person is one step closer to being well and going on to the next phase of healing.  Very clever and positive!  Best, Debra

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Love it.  Brings tears to my eyes to think about it.  I wonder if other places do something similar.  If not , wouldn't it be great if we could spread it around the world.  I did my chemo in my dr's office instead of the cancer center so there were just a few of us(6-8) on any given day.  We got to know each other well and I wanted to do something to celebrate people's last sessions.  My chemo brain didn't come up withanything great, so I brought a mini cupcake in for the woman on her day.   I know, I know, sugar, flour,etc.  but it was something I could pickup atthe bakery and it had the "birthday" connection.

Ro10's picture
Ro10
Posts: 1481
Joined: Jan 2009

It was special to ring  that Gong when I finished chemo and radiation in 2009.  The chemo staff and radiation staff gathered around and they read a poem about celebrating that the treatment was over.  They took my picture and gave me a certificate?  It was a moving ceremony.  I too celebrate when I hear someone ring the Gong.

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