Mass Found Needing Immediate Surgery (6.5 yr. survivor)

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pinky104
pinky104 Member Posts: 574 Member

I did a hemoccult test a few weeks ago, and my doctor's office called me to tell me that 1 of the 3 smears I'd done showed bleeding.  They set me up for a colonoscopy and an endoscopy a week ago Wed.  No cancer was found inside the areas the gastroenterologist checked. However, he told me he'd found something he'd never seen before in all his years of practice (and he has to be close to 70).  It was a mass that was on the outside of the colon pressing inward.  He took pictures of it with his scope, and he pressed on the mass to find that it was hard.  No joke, it actually looked like a pair of testicles.  Now, my husband and I are telling friends that I've "grown a pair."  Things went downhill for me after the colonoscopy.  It's a long story, but I had diarrhea, bleeding (which I now think was external), and horrible abdominal pain after the colonoscopy. I was scheduled for a CT scan which would have been yesterday, but I ended up in the ER two days after the colonoscopy and had the CT scan there instead. The diarrhea was stopped with a dose of Dilaudid for the pain.  I gave a urine specimen for a culture (which later showed an e Coli infection from all the diarrhea I'd had).  I was asked to give a stool culture, but in 6 hours of being there, the diarrhea had totally stopped.  I was given two collection containers to use to bring back stool samples. Of course, when I was heading upstairs to the bathroom to pee when I got home, diarrhea let loose with no warning.  I got to the bathroom and tried to collect what was still coming out of me in the "hat" I'd been given to put over the toilet in the ER.  It wasn't enough of a specimen to fill the bottle up to the line, which meant I'd contaminated the bottle, as it needed a date and time on it.  The next day, I didn't go at all.  I was worried about possibly having a bowel obstruction.  I kept getting small samples, but not enough at a time for the bottles.  It took until Monday afternoon, after taking Mira Lax twice, to get the sample I needed.  I ended up having to take one sample to the hospital and get another container for the other one.  The baby food jar I'd put it in wasn't sterilized, so they didn't want it.  The smaller bottle they'd given me had a red preservative liquid in it, and they told me that since I'd contaminated that bottle, I had to get another one.  These two trips took two hours of driving back and forth twice to the hospital, the same place I used to work. The ER doctor had wondered if I'd gotten a C Diff infection from the colonoscopy, but in the end, the cultures were negative.

I saw my oncologist on Wed.  He brought up the CT scan pictures on the screen, said he didn't know what the mass was, but it was cystic.  He called the GYN/onc. who had done my surgery back in May, 2010, at another hospital and asked the guy to get me in a.s.a.p.  He scheduled a PET scan for the next day, which I got done.  The GYN/onc's office set me up with an appointment for Monday morning, which was nice since they were booked heavily for that morning already.  My GYN/onc's partner was retiring last fall, and I don't know if he's been replaced or not by now.  It was always a very busy office with the two docs, so it's probably even worse now. 

I'd had abd. pain back in 2014.  My PA at my family doctor's office scheduled me for a CT scan then, which had shown a small (1.0 x 1.4 cm.) mass in the paracolic gutter (it's between the back abdominal wall and the ascending colon, and carries infectious fluids, blood, and bile out of the body).  My GYN/onc saw me and said if he tried to biopsy the mass by going through my side, he wasn't sure he could even find it because it was so small.  I had a PET scan, which showed the same thing.  He said he didn't know what the mass was, but he wanted to keep a watch on it. I had a CT scan at 3 mos. out, then 6 mos. out, then a year out.  None showed any growth in the thing.  If anything, it was a couple of tenths of a cm. smaller.  One of the women working alongside him in his office told me it could be a collection of fluid after lymph node removal.  I got pains once in awhile after that.  A couple of times, I had bad pains getting into bed.  I thought my incisional hernia I'd had back in 2012 was coming back.  The pains were in the same spot.  I wondered about whether the mesh (which has been the cause of lawsuits mentioned on TV) was failing and that was the problem, but I didn't know what brand of mesh I'd had.  My family doctor's PA had told me to pay attention to when I got the pains, whether or not I was moving at the time.  He said that if I was constipated, I might get pain in the intestines as stool rounded various bends there).  Sometimes I was moving, sometimes I was just sitting still.  I'd mentioned the pain to my oncologist, my urologist, etc. to have them look for something but nobody had found anything.  My PA at my family doctor's had examined me thoroughly, talked to me, then double-checked again as if he'd possibly missed something,  All had said they couldn't find anything.  I had my yearly exam at my GYN/onc last summer. My GYN/onc had let another employee do my exam.  She asked me if I'd had any pain.  At that point, the pain had stopped for months, so I told her "no."  I had a little more pain a month after that, but still nothing bad.  I still wondered if it was my hernia.  So I've been doing my due diligence these past years, going to every scheduled appointment, and this was still missed. I am being diagnosed in the same month of the year as my stage IVb UPSC was discovered (back in March, 2010).  My surgery was in May, 2010, and I had chemo from June through Sept. of that year.  I wasn't asked to have any other treatments (no radiation was given). 

The radiologist who read my CT scan taken in the ER said he couldn't be positive that this is the same paracolic gutter mass found in 2014, but it's in the same general area.  He said the mass has grown significantly.  My CA-125's went from 7's,  down to 6's over the years,  and up to 9's last spring at my GYN/onc's testing.  I had testing again this Feb. in my oncologist's office in early Feb. which showed my level at 14, which really scared me, but both doctors' offices assured me I was still in the normal range.  My ferritin level had also jumped significantly at that time (I have hereditary hemochromatosis).  My oncologist (who is also my hematologist) scheduled me for a 6 month follow up instead of a yearly one at that point. 

I had to pick up my 2014 CT report and CD for my PET scan on Thursday.  It specifically had said the small mass was suspicious for a mets to the peritoneum.  Now I wonder if I've had that all along.  I could also possibly have a new primary peritoneal cancer, or it could be something besides cancer, but I doubt that with the numbers going up over time.  People with peritoneal cancer generally don't even live as long as I have so far, although I found one 12 year suvivor of stage IV on this website.  Funny, I felt fine before my colonoscopy.  I hope I just have a large, extremely fast growing cyst, but I'm highly doubtful of that.  I've lost 10 lbs. in less than 2 weeks, although part of that is from the liquid diet and then the bland diet I was having.

I was in the hospital for 6 days with my last cancer surgery (which also involved having my gallbladder and appendix removed for other reasons).  I just hope I can get out of there much faster this time. I'm not too fond of that place, even though it gets high grades locally.  I'm not sure how soon I'll have my surgery or how soon I'll be able to write back on here after my GYN/onc. appointment on Monday.  I just wanted to let you know what's happening.  I know several people have written me to say I've been an inspiration to them in my long survival.  I probably won't be anymore.

I hope things go smoothly for the rest of you.

Comments

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Hang in there Pinky104

    You've been through a lot and look how far you've come!  You are still an inspiration and will continue to be.  This sounds like suspicious news for sure but we never really know so just keep on keeping on and we'll be here cheering you on and walking along with you.  Keep us posted and we'll keep up the good thoughts and sending (((HUGS)))

  • derMaus
    derMaus Member Posts: 558 Member
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    Oh Pinky, I'm so sorry to

    Oh Pinky, I'm so sorry to this --- but remember, you don't know what it is yet. As Nellasing says, we're all there with you. I'm definitely hoping and praying that it is indeed cystic in origin and not anything more. B

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Pinky

    you are still an inspiration and still a survivor. I am sorry you are having to deal with all of this but you have beaten the odds to this point and I am hopeful that you will continue to do so. You and Lou Ann show all of us what surviving and thriving is all about. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
    edited April 2017 #5
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    pinky, I am sorry to hear

    pinky, I am sorry to hear about everything you are going through and have no doubt that the things you describe are why you have lost so much weight.  Like you, I hope it turns out to be nothing more than a cyst that some out got 'annoyed' during the colonoscopy.

    Please let us know what goes on.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Pinky, thanks for posting and

    Pinky, thanks for posting and I'm sorry that it was necessary! Like the other ladies have said, I also hope this is nothing but an annoyed cyst. We will all be waiting to hear from you when you feel up to updating us. Sending you loads of support, love and hugs, Cindi

  • SandyD
    SandyD Member Posts: 130
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    Pinky you're in my thoughts

    You're one of the ladies on this board who inspired me and made me believe I can get through this and still live my life. Stay strong and keep us updated. We're all here rooting for you and sending vibes of hope, peace, and healing energy.

    Sandy

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited April 2017 #8
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    Pinky

    i am so sorry to hear this news.  My heart goes out to you.  You are strong and you can make it through whatever this tuns out to be, and maybe it will just be a cyst

    Hugs and prayers, Lou Ann

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited April 2017 #9
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    What an ordeal! You've went

    What an ordeal! You've went through a lot, Pinky, and I admire your strength and hope you will beat the odds. Prayers that whatever that mass is something that can be removed without any further repercussions.

    Love,
    Rebecca

  • pinky104
    pinky104 Member Posts: 574 Member
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    Thank you

    Thank you all for your positive comments.  I feel like I'm getting stronger day by day.  I'm also having a lot of side effects from a cream for skin cancer, so it's hard to sort out exactly what has made me feel so lousy some days.  I have my GYN/onc appointment tomorrow morning and hope to know more then about what will be done.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Thinking of you

    Pinky, I can't imagine what you must feel going through all of this.   (((Hugs))).    I too have a mesh from a hernia.  I also have a soft tissue mass (perirectal area) which has been there for five years and is PET positive albiet low end but still positive.   I had a biopsy once and it was negative.   Then I had surgery for my ureter reimplantment and they were going to biopsy it again but the doctor said it fell apart.  However, my recent PET scan after that surgery indicated that the mass grew slightly. (5.4 cm x 2.2 cm)  

    Hang in there Pinky.  I hope all goes well for you Monday.  It is frustrating going from doctor to doctor trying to get to the bottom of things.  I just had an EUS, then a colonoscopy and most recently on Friday I had my gallbladder removed because I keep getting pancreatitis.   But finding a doctor to treat was one of the hardest things to do.

    With regard to your CA125, please note that earlier testing may be different than the recent testing so the numbers can be off a bit.   I read somewhere in one of my records that they changed to a different testing system.    Mine was never an indicator and my recent one was a 11.

    My best to you.  Sending positive thoughts your way.

    Kathy

  • Soup52
    Soup52 Member Posts: 908 Member
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    Pinky, I hope everything goes

    Pinky, I hope everything goes well for you! I had an incomplete colonoscopy on Friday, so I can relate that something is up with my colon also. Prayers for you! Keep us posted:)

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited April 2017 #13
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    Growth

    Pinky, Thank you so much for posting a comprehensive chronological account of your current health. I am forever humbled by the inexactness of the science and art of medicine. I am keeping up in my prayers that you have a cyst and not more cancer...

  • sunflash
    sunflash Member Posts: 197 Member
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    Pinky, I'm so very sorry that

    Pinky, I'm so very sorry that you're having to deal with all of this. You, dear lady, are still an inspiration. Your strong spirit and positive outlook can't be beat. Please keep us updated and let us know when you have any more information. You're in my prayers. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    Pinky, I know you check in

    Pinky, I know you check in every now and then.  You can see we are all thinking of you and sending you lots of our love.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited May 2017 #16
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    Wow. What a story!

    Thinking of you.  What is the latest?  Best wishes -

    Suzanne

  • Big Sister 5
    Big Sister 5 Member Posts: 18
    edited May 2017 #17
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    Praying

    Pinky, praying for you. God will give you strength to get through this.

    Lynn