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It happened to Me's picture
It happened to Me
Posts: 118
Joined: Apr 2014

My story:  Feb. thru May, 2013, I was either spotting or bleeding and I had been tracking it for another health condition I was suffering at the time.  My PCP sent me to an ob/gyn. She did a pap test and it came back with two different atypical cells.  Had a colposcopy in June, 2013 and they diagnosed it as endometrial cancer.  I was sent to an oncologist Ob/gyn on July 1.  The ob/gyn here in town said that they thought is was caught in time and I would have a hysterectomy and "maybe" radiation.  When I went for my first consultation and he said, "you have a rare type of cancer".  Mouth dropped.  He told us that it was UPSC and it was rare for someone my age (51) to have this type of cancer and it's rare that it's found on a pap test.  Thus, the journey of UPSC began.  I, too, started reading online about it as well as some other folks in my world.  I got scared and quit reading.  July, 2013, I had a radical hysterectomy and they took lymph nodes and found a pea sized nodule on the back of my pelvis.  They did a pelvic wash.  They took the ovaries, tubes, and cervix.  Results showed it had already spread.  Back of pelvis, small tumor in uterus, some on the ovary and some on the paracholic gutter.  Stage 3A, close to Stage 4.  The doctor doesn't feel like radiation would benefit me based on the something or other.  He explained it but I forgot what he said.  I had 6 rds. carboplatin/Taxol every three weeks.  That started in August, 2013.  I finished Jan. 2, 2014 because between rd 4 and rd 5, my numbers were too low and I ended up giving myself shots for 5 days to jumpstart the baby white blood cells.  I am a massage therapist and have been out of work since just before my surgery.  I started in March, doing 1 - 30 minute massage and now am able to do 2 - 30 minute massages, three times a week.  Chemo. effects were: hair loss, neuropathy in hands and feet, Day 5 and 6 were my worst days.   Most people tell me I did really well with chemo.  Had my 1 month check up and a couple nodes in my chest lit up.  they took it again on my 3 month check up (May, 2014) and told me I was in NED.  Hooray.  In April, 2014, I was looking online for hopefully someone who had the same thing I did.  I found Lindaprocopia.  Wow. I read and read and read this thread.  I've had trouble with user names and login's and now csn has helped me with that.  Not sure who is still online from the linda posts except for Debrajo and Ro10.   My question is:  how long does it take to get my stamina and energy back?   Thanks to all who have posted.  You guys are a wealth of information.  I was so relieved that someone else had my kind of cancer.  Thanks for letting me share my story.

Kaleena's picture
Kaleena
Posts: 1199
Joined: Nov 2009

Dear It Happened to Me:

Sadly, Linda is no longer with us, but she has left us quite a journal to view if you can read her previous posts.   She was always positive person and wanted to give us all the information that she could gather to help everyone.  You will find that many women on this site do the same. 

I bet Debrajo and Ro will respond to this post.   It takes awhile to get used to how to use this site but once you are on, it will become easy for you.  Sometimes when women are NED, they will go away from the site for awhile to get a break from thinking of cancer and then they will pop back in and say hi and check in.

Anyway, I want to welcome you to this site.   You already found the first step of not looking on the internet because it is full of outdated information.   As you will see, there are many women with your type of cancer.   For me, I was diagnosed with Endometrial Adenocarcinoma Grade 2, Stage 3 at age 45.   I was treated as ovarian because they were unable to determine the origin and they found it both in my uterus and my ovary.  They thought it might be MMM but that was ruled out.

I am so glad that you are NED.  It does take some time getting your stamina and energy back.   But as you can see, changing your diet and getting exercise adn thinking positive is the best thing to do if you can.   Sometimes after treatment, you can get rouge pains here and there.   I would get a funny vibration through my body at night and realized that I was cold.   It was my body regenerating.

Again, welcome and sorry you had to go through this journey.  Thanks for sharing your story.

Kathy

ConnieSW's picture
ConnieSW
Posts: 609
Joined: Jun 2012

So glad you found us.  Being alone is hard.  You don't have to fret about that anymore.  We're here to help, support and educate each other.  Like you,I was led here by Linda.  She is my hero and I think of her often.

sunflash's picture
sunflash
Posts: 156
Joined: Aug 2011

Welcome to the board........the place nobody wants to be but we're all glad we found each other. I'm a fellow UPSC warrior, diagnosed in 2011 and doing fine so far. 

We all go through the initial shock of finding we have cancer. Mine was also found due to atypical cells on my pap smears........and 58 years old at the time. I took it hard, and my doctor later told me that she felt like she was hitting me over the head with a 2X4 as she discussed my pathology report. I told her that was a pretty accurate description. But after the news begins to sink in you move forward one day at a time, and before you know it treatment is behind you. Good for you being NED!  

I remember being quite fatigued after chemo, but it won't take you too long to build your strength back up. I agree that a healthy diet, exercise and positive thinking are the key factors to life after chemo. I'm a teacher and continued teaching through my treatments, taking 5 days off for treatment weeks but for the last two treatments I took off a full seven days each. 

We're all different, but I believe I was back to full steam @ 3-4 months post treatments. But don't know if that's the norm or not. 

Good luck in your journey and glad you found us!

Ro10's picture
Ro10
Posts: 1458
Joined: Jan 2009

Welcome to this site.  So sorry you have to be here. My cancer was also found with a PAP test.  I was 60 at time of diagnosis.   Because I had no symptoms the doctors felt I would only need the hysterectomy.  It was quite a shock to find out I had UPSC   Stage 3-C.  I had never heard of it.  I am a nurse, but worked mostly in Med - surg.  So I was familiar with chemo.  I was pleasantly surprised how well I did with chemo.  The meds they give you to combat the side effects are wonderful.  My blood counts always stayed good even with chemo.   

Linda P and I were diagnosed about the same time.  She was such an inspiration and a wealth of knowledge.  We certainly had different paths with our disease.  I  miss Linda and am grateful for every day I have. 

I think I read it takes 6 months to a year to totally recover from chemo.  Sorry you have neuropathy in your hands.  That makes it hard to do massage therapy.  I have been lucky to have only minimal neuropathy.  

As others have said good nutrition, exercise and a positive attitude are very important.  Try to find some joy in ever day.  come back often to this site.  In peace and caring.

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hello and welcome,

Sorry you have to be here, but glad you found this discussion board.  Hurray for NED.

I was also diagnosed with UPSC, Nov 2012, stage 4 due to spread to paraortic lymph nodes and a tumor on the bladder. I had surgery, chemo, and radiation, and am NED.

It does take time for your body to recover. You will.  

I hope you have someone who can nurture you with massages also.  They certainly are healing.

Sara

debrajo's picture
debrajo
Posts: 786
Joined: Sep 2011

I'm still here, too!  Just had  my four year NED in May.  One dr. wants me to have a node on thyroid checked out, so off I go to MD Anderson this Friday.  I was never staged since they had to get me off the table ASAP.  I had had an aeortic heart valve replaced 8 weeks before hysterectomy,  But one of my reports asid 1a, grade c.  I was 57 at diagnosis and it was found on a routene   Pap as well.  I have never gained my full  strenght back and probably never will, but I am "normal", good day s and bad, and some inbetween,just like all of us are who are blessed to be growing older! I never had any energy, maybe due to the heart defect, maybe due to the bad thyroid, who knows.  You should talk to Nancybee...that girl HIKES miles in the mountains!  I do good to walk from the back door to the mailbox, but I'm thankful for that!  As one of my dr.s said"you had four strikes against you before you started chemo and radiation"!  Guess God's not done with me yet! Come on back an talk to us, UPSC is not as rare as they make it out to be.  We all are a special sisterhood and all the boards cross over with encouragement and news.  Ask us anything, nothing is out of bounds for us!  Best, Debrsjo  
"

Abbycat2
Posts: 137
Joined: Feb 2014

Dear It Happened to Me,

Although it is terribly unfortunate that you had to find us here, it is a great place to come to for information and support.  The women here are extraordinary!  I, too, was diagnosed in November, 2013, with stage 3A UPSC. I am 61-years-old.  I had slight vaginal bleeding one day only and went immediately to a gynecologist.  Oddly, my PAP test showed that I had cancer because it captured some of the residual blood. As you know this usually doesn't happen with UPSC.  My ultrasound came back as being normal!  My cancer had spread to a fallopian tube, an ovary, to the outside of the ovary and I had positive washes.  Were your washes positive for cancer?  I finished 6 rounds of Carboplatin/Taxol in March, 2013 and my treatment ended there.  My gyn/onc doctor did not recommend radiation (a type called brachytherapy).  I sought a second opinion at Moffitt in Tampa, Florida, and this gyn/onc basically agreed with my other doctor.  I had no evidence of malignancy in my cervix and all my margins were clean. So, I decided that I would seek brachytherapy radiation only if cancer should show up on my vaginal cuff area.  A PET/CAT Scan done in November, 2013 and a CAT Scan done in April, 2014, showed no evidence of disease.  I too have neuropathy- in my feet only.  I swam long distance throughout much of my chemo treatment, although I lacked energy and my breathing was somewhat affected.  My feet still have neuropathy and I am taking L-Glutamine, vitamin B complex and Zinc to treat it.  I am almost three months out since my last chemo and I am slowly regaining my stamina.  The worse thing I experienced while on chemo was severe lower back pain that was crippling.  After two epidural shots and now three months out from chemo, my back feels great!   My hair started growing in a month after chemo and is now about 1/2 inch long.  I hope this information is helpful.  Have you had a CA-125 done and if so, what were the results?  My numbers have been in the normal range so I am not sure this is a good marker for me. 

I wish you the very best in your continued recovery from treatment.  We are here if you need us!

Cathy

 

Lisa 00
Posts: 109
Joined: Jul 2009

Regarding stamina and energy. 

I had lost a lot of muscle mass and strength during my chemo treatment with carbo/taxol.  My thighs looked somewhat like an 80 year old's.  I couldn't lift my carry-on into the overhead bin and almost beaned some poor woman on the way to Hawaii (I learned to ask the stewardess or another traveller for help on that one).  And I couldn't hardly get up off the floor if I had been sitting on the floor.  I was really weak.  I would say that it took a year or more before I realized that I had pretty much gotten back to normal in the muscle department.  Give yourself time.  It takes a long time to recover from something as brutal as this chemo. 

It happened to Me's picture
It happened to Me
Posts: 118
Joined: Apr 2014

I feel very welcome to this sisterhood.  Thanks for the information as well.  That makes me feel better. Guess I don't give myself time to recover.  Just want to get back to "normalcy" or as close to normal as I can get soon.  Feels like it's been long enough and I should be getting better.  I'll try to answer some of the questions (the one's I remember).  I think the wash showed some stuff but doesn't seem like it was much, not real clear on that though.  My CA125 at the time of diagnosis was 9, the one month check-up after chemo. was 5 and the 3 month check-up was 4.  CA125 is not a good marker for me.  I'm trying different things for the neuropathy and will let you know when I decide which route I'm going with.  The tingling in hands and feet are subtle, but when I get up from sitting, my feet hurt until I walk around a bit.  The hands hurt off and on but the last couple days it's been worse.  I praise God that there was no lymph node or omentum involved with cancer.

I knew that Linda has passed and was heartbroken.  I find it amazing the ages, the diagnosis', how different it affects everyone.  I'm glad to know there are people like Debrajo, Ro10, kaleena and others that have been on the discussion board since Linda's diagnosis.  Thanks for staying with this discussion board. 

I will be on this discussion board often.  Thanks again.  Oh, my name is Jeanette.

ConnieSW's picture
ConnieSW
Posts: 609
Joined: Jun 2012

showed UPSC cells for me, also, and saved my life or at least has given me a fighting chance (am currently NED ) with an early diagnosis.  Funny so many of us had that happen since it isn't supposed to work that way.  Hope you are feeling stronger soon.  My stamina and energy were back 90% within a couple months despite my age ( 65 at the time) so I was lucky.  I was so relieved when my shortness of breath resolved.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 516
Joined: Mar 2013

Welcome, Jeanette.  Linda brought many of us together via online searches and I am forever grateful to her. 

I would agree with the 6 months to a year 'recovery', although for me I think there are some residual effects that may be around for the long haul.

It is a great group of women here and there are many more you will run across in your readings.

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