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Cervical ca HELP my spinning head. Does my ureter mean it's really back?

Cakiller
Posts: 5
Joined: Sep 2011

i have NOT posted my entire story, which began with breast in 2011, because every time I have come here it is in such a state of distress that I can barely formulate a thought. 

 

Most recently I was not easily diagnosed with cc the week I finished my radiation for my second BC!!  I had no gyn and I had befriended a Cancer Navigator locally. She encouraged me to find someone when I told her of my vague, but certain, pelvic discomfort. I went promptly to my first choice and a good one as I happened. My pap was normal. She wasn't really sure I knew what I was talking about but she agreed to scope me. Everything looked nor,al.... except a little squishy region on the way out. Well that was the SCC. She was upset about the outcome but glad, I'm sure, to send me down the road. 

 

Next stop top was a gyn onc who was terse, at best.  I knew he and I were going to hit a snag at some point. Second opinion was the only other gyn onc in town. She was better but delivered the news of my PET indelicately. OK. She sent me to the best thing that has happened to me. My radiation oncologist and his resident were immediately critical thinkers with patient care as a foremost concern. The piece of colon that lit up with one lymph node were of little concern. I was actually scheduled to begin the radiation for the cervix in a week. These kind men took my PET further. They sought radiologists' input until one said get that girl a colonoscopy. when they told me that would be five weeks I played all the proactive cards I had. A week later, despite his assurance that these rarely amount to anything, a nice gastroenterologist told me of the 4cm tumor in my sigmoid colon. Here goes. 

 

The rad oncs were the ones who kept it together for me. This all began in October and it was February before I could get the players together to get this done. February 4 2015 I had a hyster salipinngoophorectomy robotically. Remarkably easy recovery. From there until December 2015 I endured horrific radiation, brachytherapy and chemo. I survived and was glad to be done. Details only shared upon request. 

 

Approximately three weeks later I developed horrible sudden pain in my hip and buttock. I always think cancer. My medical onc dismissed it, as he does far too much. A month later my one year CT occurred with only my rad once to discuss it with me. No signs of malignancy. YEA!! But there's hydronephrosis. Could be cancer. We don't know. Go see urologist.  Within a week it was done with a function test the same day and a neph tube the following day. She also said it could be cancer but not as likely. She just wanted to remove the kidney. We agreed to wait four weeks and recheck function. Now it's April. Funny how time gets away when you are doing everything in logical sequence but at one a week months fly. 

 

Enter gyn onc. Dr C immediately said "this is cancer! and where have you been?" She advised waiting two months because CT was not revealing and repeat CT PET. I couldn't do that. Beloved rad onc saw my plight and scheduled an MRI. That was last Friday. Meanwhile, gyn onc called with pap findings.....___ grade squamous intraepithelial lesion. Let's do colposcopy and biopsies. Well, urologist picked up the MRI with the function test and called to tell me. I had to hear it from rad oncs. THERE IS A 2x2x4cm MASS AT THE VAGINAL CUFF that is behind the bladder and obstructing the ureter and probably causing the butt pain. 

 

We did biopsies yesterday and there is NOTHING ANYONE can do to soothe me. I think we did a horrible job of treating this the first time. No investigation into HPV or tumor profile or genotypes. I'm appalled. I'm scared to death. Is this my sentence? I have seen much info here. Most second sounds less than encouraging. I cannot process this. I am alone. No kids. No sibs. No man because the rotten b ran as soon as he heard cancer in 2011. I moved the same year so I am 90 miles from work, flat broke, workin as much as possible through these years of treatment. I have told only two people about this because the disregard is staggering and emphasizes how alone I truly am. 

 

Since thE MR and cytology I have developed edema at my ankle and prepubic. In the past it has resolved. Not as much this time. WHAT DO ALL OF MY SISTERS KNOW??? Thanks for reading and please help. 

Cakiller
Posts: 5
Joined: Sep 2011

Yes....I had the cervical AND colorectal cancer. Why? Why me?

ccfighter
Posts: 476
Joined: Jan 2012

I'm so sorry that you have had to deal with so much in the cancer world.  As if one type of cancer isn't enough for a lifetime.  Know that you are never alone here.

did the biopsies reveal that the mass by your ureter is cancer?  Recurrence of cervical or colon?  Hopefully your doctors are formulating a good plan for you.  Remember, you are your own best advocate.  Make them listen, understand, and tell you everything.  

Good luck.  Keep us posted.

hugs.

Cakiller
Posts: 5
Joined: Sep 2011

I question everyday how I can be given breast twice, colon and cervical in a short span. I want answers. I'm so weary of useless Drs who only plug me in and watch me spin. This has come fast. Hip pain began in January. My med onc dismissed it. Rad onc was more concerned with hydronephrosis. Nephrologist was bent on getting my kidney out of there. Gyn onc condemned me with cancer but said to wait two months!!!

 

Now I see that these are common signs of a recurrence. I have developed edema in the past two weeks. This seems to be moving in on me. I'm scared to tears and alone. I just keep keeping on. PET is 5/18. Did biopsy two days ago. Of course, I'm praying for a miracle. Let it be the OTHER. The edema actually scares me the most. CT showed nothing. MRI showed 2x2x4cm mass on vaginal cuff behind bladder. Please tell me it could be something else. PET and biopsy will define. I dislike my gyn onc. And med onc. Rad oncs are wonderful. I suspect I will be elsewhere where they will think in my favor of tumor profile and HZV genotype. Never did anything to see if platin would kill anything but my kidneys. 

 

Im scared and need insight and prayers. I'm tough but this one is hurting. 

ccfighter
Posts: 476
Joined: Jan 2012

Of course you are scared, the unknown is always scary.  Hopefully the biopsies will prove benign.  My gyn onc did not do a tumor profile initially, but did on my recurrence.  With cervical cancer, platinum is usually the most effective.  My tumor profile found platinum to be the most effective, and the others such as taxol, Gemzar, toptecan to be of little effect.

hopefully the Edema is just lymph edema from having lymph nodes removed and radiation.  Manual lymph drainage may help, as well as compression stockings.  If this is indeed a recurrence, a pelvic extenteration may be an option which can be curative.  

Keep believing in the future and thinking healing thoughts.  You are a true survivor and will stay that way.  Hugs.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2714
Joined: Mar 2013

Cakiller, I am sure their are people out there who see your post and are praying for you as I am.  I think "tough" is all relative - huh?  We all have our tipping point when we are afraid, and it's ok to be afraid.  

Please let us know what they find.  As for the gyn onc, I know they aren't everywhere, but is there anyone else you can meet with?  It always helps to have doctors you feel are in it with you.

Hugs sweetie!

EZLiving66's picture
EZLiving66
Posts: 1400
Joined: Oct 2015

(((Cakiller))) my heart just breaks for you.  Have you contacted the American Cancer Society to see if they can hook you up locally with a cancer buddy?  I have found my regular doctor has been a great sounding board and advocate for me because she's concerned about my whole health - not just the cancer.  Please let us know how you're doing.

Love,

Eldri

MrsBear1983
Posts: 1
Joined: May 2016

My heart breaks for all of you. I came to cancer dicussion boards 6 years ago and was devestated. My sister was diagnosed with Stage 4B cervical cancer and given a 15% chance to live for 5 years. All I read in the boards were devestating. She had a 9 Cm tumor behind her cervix that ate into the bladder and 3 lymph nodes were positive. She had chemo/radiation/ and brachytherapy.
Her radiologist told her he has treated many many stage 4 Cervival cancers for decades (plural). He told her most reoccurrances come in the first year post diagnosis. Every body reponds to treatment differently.

My sister is alive and well and cancer free 6 years later. Yes. Stage 4B. Don't let a prognosis define you. You are unique and special to the One who made you. HOPE is real. LIVE! God bless you all. The first year of treatment and recovery were rough. She has lost the function of one kidney due to the radiation but other than that suffers no others effects.

 

ccfighter
Posts: 476
Joined: Jan 2012

Thank you mrs bears.  Hope breathes eternal.  Your words will lift so many spirits.  warm wishes for continued health to you and your sister.  Hugs.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2714
Joined: Mar 2013

I agree with ccfighter, THANK YOU MrsBear!  Warriors need to hear your sister's story.  

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