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Cancer cells in urine

davevg
Posts: 114
Joined: May 2011

So my wife has been having blood in her urine. They tested and found found a UTI. After 2 rounds of antibiotics she was still having problems so they tested for it again and it came back negative for a UTI but positive for ovarian cancer cells. Prior to these findings her Dr had already decided she should see a urologist which by the way moved up her appt a day and broke all this news to us. I went in with her for the procedure and during it he said the bladder looked suspicious but there were no obvious tumors showing. Little disappointed in the onc at the moment. She will go for a biopsy on Tuesday. Funny threw all this her CA 125 has been at 7.5 for months and that has always been a good marker for her. We were beyond shocked to say the least and still are. Anyone ever had or heard of this?????

Dave VG

mopar
Posts: 1950
Joined: May 2003

And I'm sorry I can't offer any info on 'cancer cells' in the urine. But I will be keeping both you and your wife in prayer. Please let us know after her biopsy Tuesday, when you have a moment.

(((HUGS))) & Prayers,
Monika

davevg
Posts: 114
Joined: May 2011

She was scheduled for her last chemo in a couple of weeks and we were both so so confident that the chemo was working due to her low CA 125. That said she is extremely devastated by this news. She has not even gotten out of bed today. I was texting her from work and she seemed like she wanted to talk but did not want to bother me at work so I surprised her and came home from work to spend sometime with her. We talked and she cried quite a bit and I think it helped because she is finally getting some sleep. So I figured I would check back here.

mopar
Posts: 1950
Joined: May 2003

I wish I could offer more consolation for you both. But there is still a chance that all will be okay - please hold on to your faith and hope.

What exactly will they be doing a biopsy on? I hope the procedure goes easily for your wife.

That was so sweet of you to come home from work. You sound just like my husband - that's something he would do for me. So maybe between now and Tuesday you can both take your minds off of this and do some things that you both enjoy.

Hugs and Prayers to you both.
Monika

davevg
Posts: 114
Joined: May 2011

They are doing one on her bladder. But I just got off the phone with her onc and he says she needs to get right into her onc/gyn now as in next week I'm thinking. If I sound a little lost and all over the place its because I am. The urologist set an appt up with her onc/gyn up for April. Her onc was pissed as I said he wants her in now and is calling her personally.

mopar
Posts: 1950
Joined: May 2003

Sometimes these doctors have you coming and going. Both of you must be so frazzled, and now with this new development, even more concerned.

We recently had a situation with my husband and the doctors had us so bewildered and concerned. They just couldn't all seem to be on the same page, and in three days time we got 4 different answers from 4 different doctors. The same thing happened about 3 years ago. I think part of the problem is that the medical field is so 'specialized' that you may see 2 or 3 doctors for the same problem, and you can never get them to communicate together.

Sure wish I could say or do something to ease this situation for you both. Just know that my prayers continue. And although I know your wife must be so physically and emotionally tired, please tell her we're here for her if she'd like to chat.

Till later. . .
Monika

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

It is so nice to see how much you love and are caring for her. As a person with cancer (stage 4 overian cancer) we could not make it without our supporters. I will be keeping you ande your wife in my prayers. Thank you for being so good to her. She will need it for a while as she works throught this.

Love, Hugs, and Prayers
Anne

davevg
Posts: 114
Joined: May 2011

Talked with the onc Friday and he already had a call into my wifes onc/gyn. She called my wife at 9:00 this morning and shoe horning her in today at 2 for an internal exam. Hopefully we get some answers today. I'm thinking second look surgery depending on what they find today. According to the onc this appointment was more important than the one for the biopsy's at the urologist. Not sure why. He expressed to me that he is very concerned. I did not tell my wife that part. I knew it was going to be a very difficult weekend for her as it was. Shame on me I know just couldn't bring myself to tell her that part.

davevg
Posts: 114
Joined: May 2011

So I'm also going to assume that this is rare due to very few responses.

mopar
Posts: 1950
Joined: May 2003

I'm sure you're wife is already agonizing over the possibilities, so telling her the doctor is 'very concerned' would not help her. Unfortunately, you are bearing this burden alone. But hopefully, coming to the board to 'vent' will help a little.

Don't know what time zone you're in, but keep us posted once you have something to tell us. I know sitting at a computer will not be priority for you, so I'll try to be patient.

Prayers.
Monika

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

This does not seem to be the usual course of things but everyone is different. Maybe it wont turn out to be as bad as imagined. I know it is hard to wait for answers but they will come soon and then you can process the info and develop the best plan. You are doing an outstanding job as caregiver and advocate. Do keep us in the loop as to what is going on. Prayers and hugs

mopar
Posts: 1950
Joined: May 2003

I'm sure you're wife is already agonizing over the possibilities, so telling her the doctor is 'very concerned' would not help her. Unfortunately, you are bearing this burden alone. But hopefully, coming to the board to 'vent' will help a little.

Don't know what time zone you're in, but keep us posted once you have something to tell us. I know sitting at a computer will not be priority for you, so I'll try to be patient.

Prayers.
Monika

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I've been following your thread and am waiting to hear what your wife's biopsy shows. I wish I had expertice I could pass along, but I don't. I'm hoping that her excellent CA-125 marker continues to be the good indication that it has been in the past.
(((HUGS to you both!))) Maria

davevg
Posts: 114
Joined: May 2011

So the gyn could not feel any masses and did do a pap smear. She told us there are only a handful of areas the cells could be coming from, the bladder, vagina, colon or ureter. Biopsies on the bladder later today. She is not looking forward to that. Thank you all for listening to my ramblings and thank you for responses. Will keep you posted.

Dave vg

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I am having a hard time following your wife's story. I looked up "ovarian cancer cells in urine" online & it doesn't look like that is even a standard lab test.

Is it possible the hematuria is from a kidney stone or even that the blood in the urine is a chemo side effect? I am following this story like it is a great mystery. Yeah, it is mysterious.

davevg
Posts: 114
Joined: May 2011

I'm kind of lost as well and can find nothing on it.Thats why I'm asking here.

Dave VG

mopar
Posts: 1950
Joined: May 2003

Thoughts and prayers are with you and your wife, Dave.
Monika

Tethys41's picture
Tethys41
Posts: 1056
Joined: Sep 2010

I'm under the impression that most people with cancer have caner cells in their blood, even after treatment ends. So, if there is blood in her urine, there would also likely be cancer cells. Sure, it is important to find the source of the blood, but the cancer cells could just be carried into the urine with the blood.

davevg
Posts: 114
Joined: May 2011

If it was indeed normal I'm not sure they would be making such a big deal about it but maybe. Like I said I'm lost as well and can't find anything on this. The biopsies are done. He took like 6 or seven samples. There were a few spots one in particular that looked funny and he took 2 samples from there. Her urine sample taken directly form the bladder by catheter during the last visit was not in yet which the Dr made it sound like that was not a good thing. Hard to get a good read on this guy but it seamed obvious. On a good note her pap came back negative. We see her onc next Tuesday and should get many of these questions answered hopefully.

Dave vg

mopar
Posts: 1950
Joined: May 2003

Now you have to wait through another weekend PLUS. So sorry, Dave. But that is very encouraging that the Pap test is negative. And that is something to hold on to. So, once again sending prayers to you both, and I'll be exercising much needed patience. Hang in there.

Monika

davevg
Posts: 114
Joined: May 2011

Monika... my wife is holding onto the pap test as a good sign but still realizes the cancer cells are coming form somewhere. I'm thinking the bladder from what I saw during the biopsies but then again I'm no Dr just know the spots he was concentrating on were not consistent with the rest of the bladder. I'm hoping I'm wrong. And yes it seems like Tuesday is a year away and is going to be an excruciating wait. You know its not like its bad enough women have to go through all the woman things in life but then to get thrown into a mess like this. My heart goes out to each and every one of you going through this and also to the care givers. Prayers to you all.

Dave VG

davevg
Posts: 114
Joined: May 2011

We see him Tuesday. Thanks for the response Tethys41.

tmpage1273's picture
tmpage1273
Posts: 93
Joined: Feb 2012

........what you find out today. You're both in my prayers.

antcat
Posts: 272
Joined: Jan 2011

I'm sorry to hear about your wife. I know what it's like when a CA 125 is low and then there's the dread cancer may be back. I wish drs. didn't use that marker because my marker went down 6 points a couple of months ago despite a CT scan showing progressing. Anyway, I hope everything goes good with your wife and I pray for her.

davevg
Posts: 114
Joined: May 2011

We did not find out much other than the bladder biopsies came back negative. He could not find any report on the urin sample from the uroligest the other week. They did another urine sample anyway so we should find out about that today or tomorrow. Ovarian Cancer cells in the urine is very rare according the Dr. He is at a loss at the this point in time as to where they are originating from but he assured us that we'll get to the bottom of it. He did say another way they could have made it in her urine is through the blood she was passing and if I heard him right he is not ruling out the limphatic system but even these systems still needs an orgin though. These two sanareios would not be good at all as it could spread anywhere and everywhere. For now he said go get your treatment and see ya in three weeks and we'll talk about scans things more in depth and set up a scan to try and figure out where to go from here he said. Bottom line the chemo is not working completely. He mentioned sending her to Johns Hopkins being that we went there for a second opinion and are in there system. I was thinking Sloan guess we'll see.

Prayers to everyone.

Dave VG

mopar
Posts: 1950
Joined: May 2003

I've been checking almost hourly to see if there was any word. It sounds as though you are still 'up in the air', 'dazed' as you put it, and rightfully so. I know you had hoped for some definitive answers... and the waiting continues. Your wife (and you) must be so exhausted from this merry-go-round. That is very good news that the bladder is negative - I'm so glad to hear that. But now I know you have other hurdles to surpass. And 'waiting' another three weeks is torture. wish they could have set up a scan in the meantime instead of waiting.

You and your wife continue to be in my thoughts and prayers, Dave. May you find the strength and hope you need continue from moment to moment, day to day. Send prayers that you WILL find strength and peace through all of this.

Monika

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Your wife's situation typifies the current mindset that ovarian cancer is a "local disease" when it is probably a systemic disease from the beginning. Even when there is a low CA-125 number and scans show "no evidence of disease," microscopic cancer cells can still be circulating in the blood & lymph.

The "systemic disease" paradigm is the opinion of those who do integrative and natural medicine. The Greece blood test (done for chemo sensitivity/resistance) cultures cancer cells from a blood sample. They can find cancer cells in the blood of people who are otherwise declared NED.

I think Tethys already mentioned that the ovarian cancer cells got into the urine just because there was blood in the urine. I think she is right. I reckon if I had blood in my urine, I would test positive for ovarian cancer cells, too.

I would not think that your wife's chemo isn't working just because ovarian cancer cells were found in her urine. If there are other indicators (such as rising CA-125 or disease progression on scan) that the chemo isn't working, then that is a valid assumption.

In my opinion, your wife was subjected to additional and unnecessary medical treatment AND both of you went thru additional worry because someone decided to look for ovarian cancer cellsin her urine. But what do I know? That's just my opinion, and I am full of them.

Tethys41's picture
Tethys41
Posts: 1056
Joined: Sep 2010

CarolenK, there's not doubt there would be ovarian cancer cells in a patient's blood. I'm pretty surprised this has turned out to be such a quandry for her doctors.

davevg
Posts: 114
Joined: May 2011

Ok... so your what you are saying and I'm trying to understand and not being sarcastic here is that with a CA125 at 6.5 and tumors shrinking there would still be live cancer cells in the blood. Where are they coming from?? According to him and maybe I'm the one mis quoting him there has to be an origin for the cells to be in the blood or lymph system.

Dave VG

Tethys41's picture
Tethys41
Posts: 1056
Joined: Sep 2010

Chemo does not kill all of the cancer cells. This is why there are so many recurrances. If the organ (ovaries) are gone, and if chemo killed all the cancer cells, no one would have a recurrance of ovarian cancer. I've even read a statistic stating that chemo tends to kill only 70 to 80% of cancer cells. It is up to the body to take care of the rest. That's why it is so important to continue supporting the immune system and keeping the body clean even after chemo. Taxol is known for causing cancer cells to slough off of the tumor during treatment and that is why they are seeing more cases of mets to the brain. So, yes even with low CA-125 and no indication of disease on her scans, there are still cancer cells. I had a blood test, similar to the one CarolenK mentions from Greece, that was supposed to test for sensitivities of cancer cells extracted from my blood with regard to chemo and integrative therapies, like IV vitamin C. This was 5 months after my last chemo, and I was considered NED. Remarkably, they could not find any cancer cells in my blood, but both my practitioner and the lab in Germany expected that there would be some.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I think Greg (gdpawel) posted the information about taxol blasting cancer all over the place.

Not convinced? Why do you think some women are on "maintenance" therapy? Usually using Taxol or Avastin for about a year. These are women who are declared NED who have low CA-125 levels.

There's the theory about cancer stem cells--supposedly the cancer stem cells are not killed by chemo. The cancer stem cells are probably influenced by the "micro-environment." The cancer stem cells produce "daughter cells" who mututate & become chemo resistant.

I think most gyn-oncologist agree that ovarian cancer is not a homogenous type of cancer. Some of the daughter cancer cells are susceptible to some chemo & other daughter cancer cells are susceptible to other chemo.

Ovarian cancer is a really complicated disease & there is still a lot unknown about it--until more is understood, more of us will die from it. Thank God it is considered to be a rare disease but that's also why we lag behind in the research funding, too.

JoWin615's picture
JoWin615
Posts: 136
Joined: Feb 2011

I just read this whole thread, and it is fascinating. I don't really have anything to add, except to say that if Tethys and Carolenk got together and gave an ovarian cancer workshop somewhere, I would sure as heck sign up!

Cheers, Jo

Tethys41's picture
Tethys41
Posts: 1056
Joined: Sep 2010

What do you think, CarolenK?

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

I am not up for putting on a workshop at this time. It would probably be a different story once I get my situation stabilized. Maybe Tethys naturopath could be recruited--she's the one who is a long-term OVCA survivor!

davevg
Posts: 114
Joined: May 2011

And thank you ladies. Very good info lots to digest.

Prayers to all

Dave vg

kayandok
Posts: 1223
Joined: Jun 2008

I have no insight about this subject, but do know for sure that you are an AMAZING husband! Together you and your wife will clear this hurdle.
Praying for strength and wisdom for both of
you.
Warm hugs,
Kathleen

davevg
Posts: 114
Joined: May 2011

You know those words in sickness and in health... I took them very seriously 30 years ago this April. I'm trying my damdist with this disease but it just seems like I'm spinning my wheels. When I look at my wife I cannot imagine my life without her. All the other hurdles in life up to this one have paled in comparison and there have been some big hurdles. But those we faced together equally. This one is so lopsided to the point I can't even imagine how she feels or any of you fighting this monster and I think that is what is eating at me the most. I'm always up beat for her encouraging her that there is a lot of things treatment wise but I can tell as of late she knows better. I check the news every day believe it or not hoping for some amazing breakthrough in the fight against cancer. I'm beaten down but not down and out and still have plenty of hope but I can see that hope fading in my wife's eyes as time goes by. Thank you all for listening to my wining. I know you all have your own fights going on.

Prayers to you all

Dave VG

kayandok
Posts: 1223
Joined: Jun 2008

my husband has said many times all that you have articulated so well, in your post. All the other hurdles you have cleared, in the past, was just training to fight this battle, and you will come through. I say that after going through a lot of tough things together, AND a killer almost 5-year battle! I know I would have thrown in the towel a long time ago, if it hadn't been for my amazing husband never giving up, and always encouraging me.
Whine away anytime. That is what this board is for.
kathleen

undertreatment2012
Posts: 126
Joined: Mar 2012

how long have you had this awful disease? You are extremely informative and tell it without the sugar coating. That's what I like. I have read this year 22,000 will be diagnosed and 15,000 will die. Not good odds. Which is why when people get excited about my ca-125 coming down from 236 to 119 after one treatment, I can't partake in their excitement. Anyway, love reading your posts and insights.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

undertreatment

Thanks for the appreciation. I know the ACS doesn't want us giving out advice so I hope I don't get asked to leave the discussion board for some of the things I write. : ) I try to write from my own experience & make sure it's clear when I am just expressing my opinion.

Boy, I would get excited if I had your CA-125 number--I tend to make a lot of CA-125 and I was diagnosed around Labor Day (late summer) 2010. I had a rough start and didn't turn the corner until a C. diff infection was diagnosed & treated. The cancer went into an indolent phase during the Spring of 2011 (the CA-125 was very low but the scan wasn't NED) but then the CA-125 started rising again.

I am back on chemo now using carbo/Gemzar & not seeing the same response that I did with the first-line chemo. That's kind of typical.

I know Maria (Mwee) has been on carbo, then cisplatin w/Gemzar for maybe a year or more and is not complaining too much. Maybe she is too exhausted to complain. Gemzar just wipes me out!

I know how you feel and the info about clear cell on the Internet is depressing. I do believe there is a lot of outdated info online & there are certainly women on this discussion board with clear cell who are NED.

I wish Dave would get back on here and update us on his wife's situation.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

too much :).... my husband might disagree (just kidding). I've been chemoing now for 28 months and on the carbo/then cisplatin w/ gemzar for a year and a half. The gemzar does wipe me out also. This just seems to be my fate. The chemo is keeping me stable and reduced my tumors by 2/3 so.... as my ONC says " I just keep trucking".
(((HUGS))) Maria

davevg
Posts: 114
Joined: May 2011

I check this board at the least once a day but most of the time 3 or 4 times to see how things are going with you ladies. As for my wife they decided to do a CT with contrast this past Wednesday. She has not had one with contrast sense diagnoses due to her badly damaged kidneys from her fist battle. We go tomorrow morning to find out the results and were to go from here. She has a big lump on the inside of her upper leg in the pelvic area. We are really concerned its a lymph node. That would most likely explain the cancers cells in her urine I think. I'm more scared than usual to hear what he has to say and I can't even fathom how she feels.

Prayes to you all
Dave

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

we certainly realize that you both have your hands full. We'll be waiting to hear the results of the CT scan.......... hugs to you both, Maria

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dave

If your wife does happen to have a cancerous lymph node, you might want to as about having that surgically removed or zapped with targeted radiation. Thanks for keeping us posted. Our prayers are with both of you.

davevg
Posts: 114
Joined: May 2011

She has had radiation in her lower abdominal area around her vaginal cuff and was told she could not have any more in that area not even targeted radiation like cyber knife etc. This was confirmed during our appointment at Johns Hopkins as well. The radiation did a number on her bowels and bladder and she is still having problems from it. Nasty stuff!! If it is I will ask if getting surgically removed would be an option. If it is in her lymphatic system everything I have read says its very bad with this type of cancer. She just can't seem to catch a break. On a side note its funny that on my member page it says My Favorite CSN Content is the ovarian cancer forum when in reality its my least favorite place if you know what I mean. I see no favorite places on this site at all.

davevg
Posts: 114
Joined: May 2011

Scan looked ok still some residual cancer but no progression. The lump on the inside of her leg is most likely a lymph node and if found cancerous could be the origin of the cancer cells still present in her urine. Her onc called two surgeons while we sat there and one (one of the best in our area and the one that resected her colon in the first surgery) is fitting her in this afternoon so I'm thinking biopsy today. And yes Carol it is possible to surgically remove it and they will if it is cancerous thanks for the heads up. Her onc does not like to wait and most of the time its zip zip. She is very well liked among them all and most remember her by name at this point.

Prayes to you all
Dave

Tethys41's picture
Tethys41
Posts: 1056
Joined: Sep 2010

I hope the surgery goes well and the news is all good.

mopar
Posts: 1950
Joined: May 2003

I'm so glad that there has been no progression. Equally as pleased that the oncologist is right on top of this, Dave. As always, my prayers continue for you and your wife. Thank you so much for keeping us updated. You are both always in my thoughts and prayers.

Monika

davevg
Posts: 114
Joined: May 2011

Yeaaa its not a lymph node phew!!!!! He was going to biopsy it but after checking it carefully he could not tell if it is just a cyst or tumor so he decided that it should come out so Friday afternoon is the day. Just a snip snip as he said no biggie. Obviously he has never had cancer. Oh and she will continue her chemo.

Prayers to you all.

Dave

mopar
Posts: 1950
Joined: May 2003

I know your wife must not be looking forward to more surgery, but this will be one thing less to deal with and get off her mind. Prayers for a quick surgery and speedy recovery. I truly appreciate that you take the time to update us.

:)

Monika

davevg
Posts: 114
Joined: May 2011

We are both keeping our fingers and toes crossed. Been down this road to many times and we're not going to get our hopes up this time around till the path comes back. Our youngest's prom and our anniversary is right around the corner so I'm praying extra hard that this turns out well and not bad and turns into a downer for ether us or our daughters.

Prayers to you all

Dave

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