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Recurrence of Cervical Cancer

Runnergirl12
Posts: 4
Joined: Feb 2016

Hi all.  I'm a newbie here, just joined today.  Trying to find some friends/resources to help me through this.  I'll share my story in hopes of finding some commonalities with other members.

Around March, 2014 I went to a new GYN, as the one I had gone to for 20 years was an older man, and I figured he'd be retiring soon.  I met the BEST GYN EVER.  It's hard to even imagine, but it's like chatting with your best girlfriend when I go to see her.  She is so amazing.  I told her I had had a cone biopsy back in my mid-twenties due to abnormal pap/coloscopy, but everything was clear after that.  I never missed a year for my exam.  She told me technical due to new guidelines, I didn't have to have a pap every year - it's now advised every 3 years.  But since I was new to the practice, she wanted to do one and baseline me.  I had had some bleeding during intercourse, but that had happened every so often throughout my life.  I thought maybe it was part of getting older/start of menopause, etc (DUMB). Pap came back abnormal, colposcopy ordered, again, abnormal.  Dr sent me to gyn oncologist.  She figured I'd probably just need a lapro hysterectomy, get it out, and I'd be good as new.  I have a daughter and wasn't planning anymore children, so I was totally fine with the planned course of action.  I located a Gynecologic Oncologist, who did another Cone Biopsy.  He didn't want to just do a hysterectomy until he knew what all was going on.  Cone came back without clear enough margins (risk that there was still cancer in there).  PET scan ordered and it showed cancer was confined to the cervical area.  Stage 2B. Hysterectomy, here I come!!  

The plan was to do a radical hysterectomy + move my ovaries out of the way in case radiation was needed later (precautionary).  I had a C-section with my daughter, and when he went in, my bladder was fused to my uterus.  I was a mess of scar tissue, so he ultimately had to do the big cut (plus I had lapro holes too).  2-hr surgery turned into 6+ hour surgery, and included a Catheter bag that I'd have to wear for a month to rest my bladder so it didn't grow back, or get a fissure, etc.  He took out a bunch of lymph nodes as well.  Those tested during surgery were clear.  Then I got the bad news a few days later...  some of the lymph nodes sent out for testing after surgery had small amounts of cancer.

Recovery from surgery was horrible.  Imagine going through all the pain and craziness of a C-Section, and you don't even get a cute new baby out of it.  You get a bloated, fat belly that was collecting lymph fluid (taking the nodes out interrupt the drainage, so the fluid doesn't know where to go).  I wound up having to get my belly drained 2 separate times (big giant needle into your belly that sucks out the fluid - I wanted to DIE it was so horrible... you're awake... just xanax and some hydrocodone... who does that twice??)  I had to wear giant maxi pads because fluid was just flow out of me - I thought my days of maxis were over.  Woke up more often than not in pools of sweat (gross).

Surgery was in September.  October I started Cisplatin chemo 1x per week for 5 weeks + Pelvic Radiation 5x per week for 6 weeks.  Chemo was fine, didn't lose my hair.  I didn't get a port though - figured I'd just IV it since it was just 5 times.  DUMBEST MISTAKE EVER.  Anyone who needs chemo, GET A PORT!!!!  I didn't want to accept that I was a cancer patient.  Going into the chemo room and seeing all these sick people with no hair? Nope, that wasn't me.  I was totally fine.  Just some light chemo for me thanks.  DUMB.  I have crappy veins.  It's hard to get bloodwork done when I'm healthy, let alone when I'm a medical trainwreck.  So, every Monday, I'd wind up crying, we were all miserable trying to get the chemo in me.  We'd have to stop chemo when my vein collapsed, find another one, and start again.  Not fun.  Around Christmas of 2014, I got painful red lumps on my arm.  I couldn't move my wrist.  I had developed Cellulitis in a few places where the chemo had irritated my veins and my blood was so broken down it couldn't fight off infection.  I wound up in the hospital, got a blood transfusion, and a boatload of anti-biotics.  Eventually it went away, but it took a long time.

Somewhere along the chemo path the Dr and I decided maybe I should get a PICC line.  That is where they put the catheter into one of your deep arm veins, then you have 2 little tubes sticking out of your arm where they can put the chemo in.  That totally sucked getting it put in - again, just some xanax and local anesthetic.  When I was done with chemo, they took it out.  I also had a tunnel catheter at some point (can't remember where that was along the way).  That is where there's little tubes sticking out of your chest.  They haze you out more for that, but it still was creepy as heck.  I felt when the catheter tube reached my heart...  so yucky!

I only wound up getting 4 chemo treatments total since it was such a production.  I got through all the radiation - that was easy.  Overall side effects of both (other than cellulitis) was fatigue that got worse the more radiation I got.  At the end of radiation, I was told the Dr wanted to do Brachy therapy 3 times just to make sure.  That requires a cylinder with radiation to be stuck up in your vagina while you sit still holding it in there for 20 minutes.  If any of you have to do this, I recommend Xanax beforehand to relax you.  It is awkward and uncomfortable to say the least.

Fast forward through most of 2015.  CT scans every 3 months - clean.  As they should be since there wasn't anything on the scans BEFORE all the chemo/radiation.  Finally getting back to normal, but couldn't seem to lose any weight - I actually gained 10 lbs in a year, when I was running regularly and not eating bad.  I got my hormones tested and WHOA was I post-menopausal!! Off the charts!  No wonder my husband wanted me to ask the doctor about my hormones! :)  Gyn gave me Evamist - super awesome stuff you spray on your arm once a day.  I think it's definitely leveled me out and helped with some leg edema.

I took a severance package from my job of 18 years when I was asked to relocate out of state.  Totally don't miss the company, and it turned out to be good timing.  In December, 2015, I developed pain in my abdomen, couldn't go to the bathroom (#2) and my belly was bloated.  I was almost due for my 3-mo scan, so it was ordered to see what was going on.  I never expected the results to be "a mass in my abdomen".  It was in my pelvic area, and was pulling on my intestines, so they got crimped up like when you squeeze a waterhose.  WTH?  It was in a difficult place to biopsy.  PET scan was ordered and it lit up - CANCER. AGAIN.  Original treatment plan was to get a port installed and start chemo again to shrink it, but I didn't make it that long.  Sunday night before Christmas, I threw up and we went to the ER.  An IV was placed after 15 attempts (no joke).  I was dehydrated and had crappy veins anyway.  Surgery was done the following morning, another belly slice in the C-Section spot, plus a few lapro holes.  a foot of my intestines was removed along with the mass.  I was able to get out on Christmas Eve day so I could be home for Christmas with my family.

Jan 18, 2015 we started a combination of Carboplatin and Paclitaxil.  I got my port installed the week prior - I may never get that thing removed... it is AWESOME!  No needle sticks in the arms EVER!  All my bloodwork comes out of the port, so it's been great to remove that stress from the situation.  Days 3-5 after the first round were pretty dark for me.  I had a Neulasta on-body injector that put medicine in me 27 hours after chemo.  It helps rebuild your white blood cells so hopefully I won't wind up with another blood transfusion this time.  The bone pain was unreal.  I laid on the couch in tears, feeling the pain move around my body - it was almost like it sparkled all over me.  My oncologist called to check on me Thursday (chemo was Monday).  As she is talking to me through my tears, she said I need some help and called me in an anti-depressant (Effexor).  I told her I didn't want to be fogged out and like a zombie.  She said I wouldn't be - this would help me GET THROUGH the next few months.  She was right.  It took a few days to get working in my system, but between that and the hormones, I feel more like "myself" than I have in a long time.  I also went in on Friday and got a bag of fluids, which totally helped my energy.  I was dehydrated from not wanting to eat or drink anything.

I started losing my hair 2 weeks after the first round.  My head was itchy the day before, and when I got in the shower, I could feel hairs running down my legs.  I got out and as I combed my hair it just.kept.coming.out.  It was pretty traumatic.  I had it cut into a short bob in preparation for this, but nothing can prepare you for this.  It is completely surreal.  I made an appt at the American Cancer Center near me and met a wonderful volunteer who helped me pick out some wigs (free!).  I ordered some hats online too - google "Chemo hats" - there's a great site that has more options than Amazon.  I made it one more week by being very careful with my hair (it was literally EVERYWHERE though).  I had a baseball game for my son and date night with my husband that I was trying to make it through.  That following Saturday after our date night, I got in the shower and SO much hair just slid off my head onto the floor.  It looked like a wig was laying on the drain.  So I got the clippers out, we chopped what was left super short with scissors, and then my husband shaved my head.  I cried. And I cried.  And I cried.  

Round 2 seemed to go much better.  I did have a reaction to the Chemo, so they stopped, gave me a load of benedryl, let it get in my system, then ran the rest along with a bag of fluids.  Not sure if the fluids just helped in general or what, but I didn't have NEARLY the bone pain I had this time.  I was kind of worn out for days 3-5, but nothing bad happened.  I kept waiting for the pain to start and it just didn't.  Maybe the fluids + a better mental state with the anti-depressants?  Whatever, I'll take it!! :)

I go for round 3 on Feb 2, 2016.  That will be me HALFWAY there!  I look forward to putting this past me and getting to go find myself a new job that I love.  My husband has been a gift from God.  We reconnected our high school romance after both of us had married other people, had kids, and divorced over the course of 25 years.  I don't know what I did to deserve him, but I can't imagine going through this without him.  He still thinks I'm beautiful after carrying around my pee in a catheter bag, watching me vomit like the exorcist kid, shaving my head, looking at my gross 3-time-sliced belly that will never see a bikini again, and holding me when I cry uncontrollably.  He is my rock, my best friend, and the love of my life.  

I would hope I don't ever have to go through anything else after this.  It's crazy that some tiny microscopic cancer cell that can't be seen in any scans could lurk quietly and come back to wreak havoc on one's body again.  There could actually be NO cancer in my body - we are doing this aggressive treatment because we don't actually know if there is or not.  I sure as heck don't want to wait around for it to come back, so I'm taking the chemo route.

I plan to watch my daughter grow into a young woman, send her and our son off to college, and sit back with my husband and enjoy life.  I won't let this beat me no matter what hell I've gone through.  

Thanks for reading this - it's a lot longer than I thought it would be.  It feels good to let it out and share my story. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2771
Joined: Mar 2013

Hey runnergirl, there are some terrific women here but sometimes it can be a little quiet.  In addition to this site you might find others at the National Cervical Cancer Coalition chat board.  I see the re-vamped the forums and have to figure out how to use it but they are a great group of women.  At the bottom of their home page is a "Connecting with others" that takes you to their chat.  

Runnergirl12
Posts: 4
Joined: Feb 2016

Thank you! I'll definitely check that out.

EZLiving66's picture
EZLiving66
Posts: 1424
Joined: Oct 2015

Wow, what a story!  I sympathize with your vein issues since I have the same thing - I've been in the teens and they still didn't have that IV in!  I did get a port but it never healed and was infected so it couldn't be used.  Finally my doctor took it out but the wound wouldn't heal - total bummer.  I've been going to wound care the past month and it's finally closing up.  Also had the same reaction to the Neulasta and your description "sparkled" is good - I described it as "vibrating in pain."

I wish the best for you and hopefully none of those microscopic cancer cells are still lurking in your body.

Love,

Eldri

 

Runnergirl12
Posts: 4
Joined: Feb 2016

Thank you, Eldri! I hope your wound finishes healing up for you, that's got to be frustrating!

Best Wishes!!

 

 

ccfighter
Posts: 476
Joined: Jan 2012

Thanks for sharing.  Your recurrence sounds very similar to mine.  I was originally diagnosed in November 2011 with stage 2a with 2 lymph nodes positive.1 year later a recurrence in my abdominal wall adhered to my small bowel and a tumor in my lung.  I had both removed and did more chemo and radiation.  Been clean ever since, over three years.  Keep your spirits high and your hope alive.  You will be fine.  Hugs.

Runnergirl12
Posts: 4
Joined: Feb 2016

I can't tell you how much you've just made my day!! Hearing your good news story from a similar situation is music to my ears! I am so glad for you and hope I can follow in your path!

thank you thank you thank you!!!!!

Jentle8
Posts: 3
Joined: Apr 2016

I was Stage 2B as well.  However I started with Cisplatin and Radiation first.   I just finished treatments on 2/6/2016 and will be having my first PETSCAN in early May.  The waiting is crazy.....   I still fear I have cancer, but remain hopeful that it is gone.    They never did any testing prior to me starting treatment, no PETSCAN, just an internal exam, in which I was told that my tumor was outside of the cervix and spread to mainly the left parametrial wall (almost extended to the pelvic wall).    I knew I had Cancer before i was diagnosed, and I had a feeling then that it was in my lymph nodes too, but again they never tested to know for sure.        Did you have symptoms of lymph node involvement? 

 

tanya1992
Posts: 3
Joined: Feb 2017

hats off lady 

Rubyshoes
Posts: 19
Joined: Feb 2017

Thank you for sharing. Every detail is a help to me.

 

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