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Terrifying news: my CA-125 went up to 154!! They are calling for hurry-up CT-scan to see if my cancer is back.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

What can I say? I'm devastated. My oncologist even apologized for giving me the news over the phone. The man who thought he 'cured' me yesterday clearly thinks otherwise today. I am still in shock. They'll be calling me with an appointment for a CT-scan within the next couple of days and then my chemo-onc wants to see me to review the scan. ARGH!!!

I'm trying not to freak out until I have something more reliable than a CA-125 confirm that I am in trouble again.

trying not to cry....

Ro10's picture
Ro10
Posts: 1561
Joined: Jan 2009

That certainly is not the news you wanted to hear. Hope the CAT scan does not show any new growth. I will keep the prayers coming for you.

I go to the doctor tomorrow to see what my latest CA 125 was and what the CAT scan showed. I am hoping for no evidence of disease. In peace and caring.

cleo
Posts: 131
Joined: Sep 2009

Linda...don't cry.....all it does is puffy eyes and a stuffed nose. Be angry and determined that everything is going to be fine and that this is one of those abberations that can happen.
Am thinking of you and sending all positive thoughts and vibes your way.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Linda....I am so sorry to hear about the results of your CA-125 and will pray that this is a false alarm! We all know that CA-125's are not always reliable and are counting on that being being true for you. You are such a postive person and have provided encouragement and hope to so many of us....and now you need to know that we are here for YOU! I understand why you feel like crying and that is o.k.!!

HUGE HUGS to you!!!!

Karen

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I am so upset! We have to wait for the scan. My Gyn Onc told me that CA125 elevation means it is spreading in the peritoneum. They do a procedure surgically involving stripping the peritoneum that rids it of the cancer and then healthy tissue grows back. My prayers and hopes are with you. I hate tumor markers. In many ways they are torture markers. With serous they are not always accurate. There is still hope. If you need to cry we are here.

Diane

california_artist's picture
california_artist
Posts: 862
Joined: Jan 2009

Hey, there Girlique,

Let's make believe that this report is not your's, but someone else's on the board for just a moment. Now, take a deep breath, and think what would your heart tell you to tell them? Wouldn't the first thing you do be to reassure them that there are other reasons than a recurrence of cancer for the CA-125 to be elevated??? Wouldn't you tell them to try not to panic til other results are in, well, wouldn't you??? Well, Linda, dear heart, take your own best comforting advice for a little while, I know other's here have, chase the fear out of your mind, and have some tea and hug the nearest person very, very, tightly. don't do this if you are using a laptop on train.

I simply find it hard to believe that with only microscopic cells found in one node and all that you've gone through to get rid of any remaining cancer, that it has returned and so quickly.

Love you to pieces, you will be fine, this will be a infinitesimally small blip on your life's radar. Hang in there. SMILE REAL BIG FOR THE CAMERA. I'm watching and waiting with you.

Claudia

fuzzytrouble's picture
fuzzytrouble
Posts: 211
Joined: Feb 2009

Hey Linda, I certainly know just what you are feeling like most of us here, I can't stand the waiting to find out because our brain is on over drive now and will not stop until you hear the words "nothing to worry about". Your body goes through so much and is still healing from our treatments so please try to not think the worst until you hear it from the doctor's mouth. Our lymph nodes or lack of them can cause a lot of pain and symptoms if fluid gets backed up and boy it has happened to me in my left leg a couple of times. My good vibes are being sent your way.

Big, big hug for you from Oregon,
Sharon

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I never did get to cry because I only had to look at my husband's face and I knew he'd lose it if I cried. He didn't even eat any dinner. So I downplayed the whole thing and worked at convincing him how imperfect the marker is, and that it was premature to start grieving about a recurrance. Meanwhile my DIL who is a CT-technician at the hospital where I go, checked to see if the order was in yet for my scan. It was, so she's scheduling me for Friday and is doing the scan herself. She;s bringing the barium home for me tomorrow so i can fast and be ready for the scan on Friday. Although her 'reading' of my scan as it happens isn't official, she'll be able to tell me if she sees anything as soon as I come off the table. & she's good and I think she can read a scan as good as any doctor. So at least I won't be WAITING all weekend for some kind of news.

I already had a regularly-scheduled 3-month appointment with my new gyn-onc on Wednesday (when I had HOPED tp be home baking pumpkin pies!), so he will be able to give me his recommendations based on my new CT-scan and a pelvic exam and PAP that I know that he will do that day/ & my chemo-onc said he'd also be scheduling me for a consultation again next week after my CT-scan results come in. So it looks to be crazy for a bit until they get to the bottom of this.

Thanks for all your reasurrances. Deep breath.

thank you
Posts: 77
Joined: Jun 2009

You had diarrhea the last days isnt'it? And we know from other women that any inflammation can cause the ca 125 to rise.
Remember: my mom had an MRI 6 months after she completed the treatment which showed a suspicious lesion. PET scan confirmed that this is active. Everybody was sure that this is a recurrence. Had a 2nd surgery and all that the surgeon saw was inflammation. I was reading that you can have post-radiation inflammation for up to a year after you complete treatment.
This is JUST A NUMBER. As a physician - but not an oncologist, I know that we never believe only in numbers.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I did some research last night and couldn't really find anything that showed how accurate CA-125s are as an indicator of recurrance for UPSC. I found a good study on OVARIAN cancer, that showed that a rise of over 80 points in CA125 was a precursor for a recurrance for ovarian cancer 73% of the time. If the blood work was done a second time a month later (to rule out error) and the CA125 continued to rise or stay high, then the precursor for recurrance for OVARIAN cancer was in the 90%. The study also said that, on average, it would be 4 1/2 months until the recurrance could be confirmed with a CT-scan or physical symptoms (apparently the recurrance is usually microscopic when the CA-125 starts to rise.) The other very recent study showed that starting chemo based on CA125 rise alone, and NOT waiting for physical confirmation from a CT-scan or actual symptoms does NOTHING to increase 5-year life expectancy. Apparently chemo kills a 1-cm tumor as easily and quickly as it does microscopic cancer cells. But all of this is about OVARIAN cancer.

I know they are similar, but they are not identical. And some oncologists won't even use CA125 for uterine cancers because it is so unreliable. So does anyone have anything research-wise on how accurate CA125 is for UPSC? I will be grilling my gyn-onc on Wednesday to get answers for us if there are any. Anyone else have anything they've read about the accuracy of CA125 for UPSC? (I'll bet no recent studies have been done. ARGH!)

And I still have watery stools every time I eat. So is that a symptom of recurrance? Or do I have a virus that is causing my CA-125 to rise? Lots of questions, no real answers. But I welcome anything any of you have read, good or bad. Thanks!

thank you
Posts: 77
Joined: Jun 2009

I have done lot of research for CA-125 - long nights. If it is low does not rule out recurrence. If it is high does not mean you have recurrence, but you need a CT to confirm. I bet, I hope, I pray, I am sending positive thoughts that this is gastroenteritis. I think you are lucky you will have CT so quickly. Tomorrow you will know - I have a feeling that you will post good news.
The BEST, Chrysoula

OK. I know that a year from now, when a woman will come to this site and say that her CA 125 is up, we will answer: Don't worry, this happened to Linda and it turned out to be nothing!!!

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

First of all you are in my thoughts and prayers. I'm not sure about the CA125, for me it wasn't accurate, when the number was up I did not show any cancer on the ct when it went down to a normal reading I did have cancer. So not sure what to make of it.

This is such tough stuff to deal with emotionally and physically, but hang in there and it just may all be okay. I can tell that you are a strong woman. Keep us posted as I will be hoping to hear good news!

Love to my UPSC sister
Frances

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks, Fran, for your insights. I really believe that tomorrow's CT-scan will be too soon to show recurrance, that any growing cancer will still be too small to be picked up. At least that's what I gathered from my research into ovarian cancer; it takes on average 4 1/2 months after the rise in CA125 to get a physical confirmation.

I am guessing that my CT-scan will be clear this time anyway, and that will allow my family to have a merry Christmas and not be as worried about me, and that is worth a LOT to me. But I will personally be privately holding my breath until my NEXT CT-scan 3 months out. That will be the one I trust and can take comfort in if it's clear. I've said on this Board that I am prepared and at peace with whatever outcome scenario comes my way. I guess we'll see if I know myself that well as I patiently wait out the 4 1/2 months.....if that stat is even valid for UPSC! (as it's an ovarian stat.)

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have a bunch of various appointments coming up with my 3 oncologists and I'm guessing that they will want to re-test the CA-125 if my CT-scan comes out clear. (It won't much matter if they find something tomorrow during my scan; they'll assume the blood test was a valid indicator and the conversation will switch to treatment options.) My bowels are still not right, with watery bowels within an hour after I eat most of the time, so if it's inflammation causing the number to rise, I would need to wait until that gets better. I think I'll know a lot more after I talk with my new gyn-onc Wednesday. He can probably tell me whether this bowel issue is a symptom of a recurrance or not; and I am anxious to get his plan to monitor/treat me going forward.

Thanks, everyone, for your concern and support. truly.

Katrinka123
Posts: 54
Joined: Jul 2009

Linda, I don't know anything more about CA-125 numbers than what my doctors have told me. They have told me time and time again that they can go up and down for a variety of reasons that have nothing to do with cancer.

I would bet that your number has gone up b/c of whatever is going on with your bowels - and that is unrelated to cancer too. Perhaps something to do with the radiation treatment, but not a return of cancer.

All of these treatments come with a whole host of side effects. I know that certain foods that I eat now make my bowels feel more uncomfortable than they did before I had radiation.

Please know that you drift in and out of my thoughts and I am sending lots of prayers for only good news for you!

-Kat

thank you
Posts: 77
Joined: Jun 2009

I see patients who are referred to me for high ESR (inflammatory marker), and come to rule out rheumatologic disease. If the symptoms, physical exam and imaging does not show any disease, we never treat the number. Numbers are numbers.
Also: check with your radiation oncologist or in the internet if you want about post radiation inflammation (can be acute - at the time of radiation, subacute or chronic). I copy paste something that I found: Radiation colitis can be acute, coming on suddenly or chronic, developing gradually and persisting. With the chronic form of the condition, symptoms may not arise until months or years after radiation therapy is over. Symptoms may include abdominal cramps, rectal bleeding, diarrhea, frequent urges to have bowel movement etc.

I am trying to say that you should celebrate tomorrow when you get the preliminary results of clear CT (we know it will be clear). The studies you read about the ca 125 are studies for ovarian ca (which always recurs). It is too early for you to have the disease back TOO EARLY!!! Also: when studies mention survival, they don't mention the reason that the patient passed away. May of those patients have comorbidities, and don't die from cancer. They also include population from different countries and different socioeconomic status - compliance etc. I believe that the real numbers are much better with the "state of the art" medicine that you all receive nowadays. I know that whatever I say you just want a clear CT and a decreasing CA 125. And this will happen.

thank you
Posts: 77
Joined: Jun 2009

I see patients who are referred to me for high ESR (inflammatory marker), and come to rule out rheumatologic disease. If the symptoms, physical exam and imaging does not show any disease, we never treat the number. Numbers are numbers.
Also: check with your radiation oncologist or in the internet if you want about post radiation inflammation (can be acute - at the time of radiation, subacute or chronic). I copy paste something that I found: Radiation colitis can be acute, coming on suddenly or chronic, developing gradually and persisting. With the chronic form of the condition, symptoms may not arise until months or years after radiation therapy is over. Symptoms may include abdominal cramps, rectal bleeding, diarrhea, frequent urges to have bowel movement etc.

I am trying to say that you should celebrate tomorrow when you get the preliminary results of clear CT (we know it will be clear). The studies you read about the ca 125 are studies for ovarian ca (which always recurs). It is too early for you to have the disease back TOO EARLY!!! Also: when studies mention survival, they don't mention the reason that the patient passed away. May of those patients have comorbidities, and don't die from cancer. They also include population from different countries and different socioeconomic status - compliance etc. I believe that the real numbers are much better with the "state of the art" medicine that you all receive nowadays. I know that whatever I say you just want a clear CT and a decreasing CA 125. And this will happen.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

my acupuncturist just told me yesterday (who is a two time survivor of breast cancer, and who's mother had ovarian cancer and lived 11 years after they told her she didn't have much time), is very knowledgeable about ca 125s, and said aberrations in ca 125s are not uncommon. when she herself had spikes twice in her blood tests, they gave her another ca 125 soon after, and in both cases, her counts the second time were normal. also, in all of her blood tests, they used one particular way of interpreting her tests at the lab. when her scores were higher, she noticed the lab had used another way of reading her tests, and that had made the difference. just maybe that's true for you. there was no particular reason for the lab to have done it differently, they just did, and it made a huge difference.

of course you're shocked and trying not to freak out, though a few tears probably wouldn't hurt, but you don't know anything for sure yet as you say, so try to keep the faith. there are many of us out here also keeping the faith for you. my particular vision is that after your cat scan, your chemo doc will apologize again, this time for scaring you needlessly.

you're certainly in my thoughts, as i've come to so appreciate your informative, and informed comments so much, and your kindness and authenticity.

hoping for the best,
maggie

maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

my acupuncturist just told me yesterday (who is a two time survivor of breast cancer, and who's mother had ovarian cancer and lived 11 years after they told her she didn't have much time), is very knowledgeable about ca 125s, and said aberrations in ca 125s are not uncommon. when she herself had spikes twice in her blood tests, they gave her another ca 125 soon after, and in both cases, her counts the second time were normal. also, in all of her blood tests, they used one particular way of interpreting her tests at the lab. when her scores were higher, she noticed the lab had used another way of reading her tests, and that had made the difference. just maybe that's true for you. there was no particular reason for the lab to have done it differently, they just did, and it made a huge difference.

of course you're shocked and trying not to freak out, though a few tears probably wouldn't hurt, but you don't know anything for sure yet as you say, so try to keep the faith. there are many of us out here also keeping the faith for you. my particular vision is that after your cat scan, your chemo doc will apologize again, this time for scaring you needlessly.

you're certainly in my thoughts, as i've come to so appreciate your informative, and informed comments so much, and your kindness and authenticity.

hoping for the best,
maggie

maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

my acupuncturist just told me yesterday (who is a two time survivor of breast cancer, and who's mother had ovarian cancer and lived 11 years after they told her she didn't have much time), is very knowledgeable about ca 125s, and said aberrations in ca 125s are not uncommon. when she herself had spikes twice in her blood tests, they gave her another ca 125 soon after, and in both cases, her counts the second time were normal. also, in all of her blood tests, they used one particular way of interpreting her tests at the lab. when her scores were higher, she noticed the lab had used another way of reading her tests, and that had made the difference. just maybe that's true for you. there was no particular reason for the lab to have done it differently, they just did, and it made a huge difference.

of course you're shocked and trying not to freak out, though a few tears probably wouldn't hurt, but you don't know anything for sure yet as you say, so try to keep the faith. there are many of us out here also keeping the faith for you. my particular vision is that after your cat scan, your chemo doc will apologize again, this time for scaring you needlessly.

you're certainly in my thoughts, as i've come to so appreciate your informative, and informed comments so much, and your kindness and authenticity.

hoping for the best,
maggie

maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

my acupuncturist just told me yesterday (who is a two time survivor of breast cancer, and who's mother had ovarian cancer and lived 11 years after they told her she didn't have much time), is very knowledgeable about ca 125s, and said aberrations in ca 125s are not uncommon. when she herself had spikes twice in her blood tests, they gave her another ca 125 soon after, and in both cases, her counts the second time were normal. also, in all of her blood tests, they used one particular way of interpreting her tests at the lab. when her scores were higher, she noticed the lab had used another way of reading her tests, and that had made the difference. just maybe that's true for you. there was no particular reason for the lab to have done it differently, they just did, and it made a huge difference.

of course you're shocked and trying not to freak out, though a few tears probably wouldn't hurt, but you don't know anything for sure yet as you say, so try to keep the faith. there are many of us out here also keeping the faith for you. my particular vision is that after your cat scan, your chemo doc will apologize again, this time for scaring you needlessly.

you're certainly in my thoughts, as i've come to so appreciate your informative, and informed comments so much, and your kindness and authenticity.

hoping for the best,
maggie

maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

my acupuncturist just told me yesterday (who is a two time survivor of breast cancer, and who's mother had ovarian cancer and lived 11 years after they told her she didn't have much time), is very knowledgeable about ca 125s, and said aberrations in ca 125s are not uncommon. when she herself had spikes twice in her blood tests, they gave her another ca 125 soon after, and in both cases, her counts the second time were normal. also, in all of her blood tests, they used one particular way of interpreting her tests at the lab. when her scores were higher, she noticed the lab had used another way of reading her tests, and that had made the difference. just maybe that's true for you. there was no particular reason for the lab to have done it differently, they just did, and it made a huge difference.

of course you're shocked and trying not to freak out, though a few tears probably wouldn't hurt, but you don't know anything for sure yet as you say, so try to keep the faith. there are many of us out here also keeping the faith for you. my particular vision is that after your cat scan, your chemo doc will apologize again, this time for scaring you needlessly.

you're certainly in my thoughts, as i've come to so appreciate your informative, and informed comments so much, and your kindness and authenticity.

hoping for the best,
maggie

maggie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Linda,

Sending you hugs, thoughts and prayers....

I have nothing scientific to offer here...just hoping you get some answers soon...

Hang in....we all need your shining smile to keep us going!

Laurie

cookie1948
Posts: 79
Joined: Feb 2009

Remember me, Linda? I'm Linda aka Cookie. I have not been on this site for a month as i've been taking care of grandaughter, daughter and mom who had that hysterectomy at 85. AND have been in the process of remodeling so i've been pre occupied. Something told me to check in here tonite no matter what. I wanted to make sure Ro and you and so many others are doing well. I am in total shock with the radical chemo and radiation you've had. I just cannot believe it's back. I do NOT believe it and will pray for a good outcome. I guess a CA125 is not enough to go on. I wanted to check on Deanna and the many others i've grown fond of. Please know i am thinking of you. You are such an inspiration to others but i surely can understand your shock. Hang in there. I know that's easier said than done. I sooooooooooooo wish you the best. You are a good friend to all here. You have been so much help for me with my 85 now 86 yr old mom. Take care, and i will check in now daily to see how you and the other beautiful women are doing!!
My hugs go out to you Linda.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Since reading your post last night I find myself constantly thinking about you and your CT scan tomorrow. I will be praying that all goes well. In my heart I feel sure everything will be okay. Teresa..

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

Thinking of you and praying that things turn out well for you. You are an inspiration to all of us.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks so much for checking in at just the right time when I need my 'peeps' all around me! I'm honestly okay. I woke up content this morning, almost as if I was counting my blessings in my sleep, feeling at peace with the world, with MY world. I love Thanksgiving even more than Christmas and this weekend started my Thanksgiving preparations, a happy nostalgic time for me to remember myself as a little girl, and as a young mother, and now as a grandmother, repeating these same annual tasks in preparation for the feast. So many happy memories, and a very happy memory made this weekend for my own grandchildren, baking crescent rolls with me.

Life is good!

MoeKay
Posts: 63
Joined: Feb 2004

Linda:

I'm so sorry to hear about the increase in your CA-125. I wonder if you could have picked up a parasite or virus on your recent trip to Greece that could be causing this result. I am being tested for parasites due to another medical condition (not my cancer), so this issue is on my mind right now. One of the questions asked was whether I had any overseas travel, and while I did not, when my doctor heard I had recently traveled to Florida, he said certain parasites are also found in the Southeast United States.

Thoughts and prayers are with you for good CT results today.

MoeKay

kansasgal's picture
kansasgal
Posts: 118
Joined: Aug 2009

You hold a special place in the hearts of those of us who follow this cancer board. You are held in our arms as we travel into the unknown with you.

Sally

california_artist's picture
california_artist
Posts: 862
Joined: Jan 2009

I wish I had asked what time you were coming back. I really need to know what the person you said could read the CT has to say unofficially.

The suspense is killing me.

Love,

Clauida

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Wow! I am so touched that you all are waiting to hear my news. Thank you so much.

I’m just back from my CT-scan this afternoon, with no official results yet. MY DIL Audie did the scan herself and asked the doctor who will later review my scans in more detail to look over them quickly in a cursory way while I was still there. I am to act surprised when I get the official 'news'; this is that UN-official. Prefaced by that caution, here's what I found out:

Audie used a very small grid of 1.2 mm for my scan. There were no masses of any kind, and my lungs and liver looked completely clear. There was 1 lymph node between the aorta and kidney that was visible that hadn’t been visible before, so is enlarged a bit but still very small, on only 2 or 3 of the slides. There was a very small amount of fluid on both sides of my pelvis and a lot of ‘stranding’ and inflammation throughout my bowel areas that had not been there before. I asked what ‘stranding’ is, and Audie said it is like when you have an infected wound OUTSIDE and it is pink & swollen all around it; stranding is sort of what that is like on the INSIDE.

Now this is VERY unofficial, and the doctor that looked at the scan spent less than 5 or 10 minutes on them and did the ‘quick glance’ only as a favor to Audie and so the actual ‘reading’ may be very different. But Audie seems to think that the 1 enlarged lymph node will mean that they will call for a PET scan to see if it lights up. She said it is in a very difficult spot to do a CT-guided needle biopsy like Deanna had (Audie assists with those all the time); and also a dangerous spot for surgery because of the kidney and aorta both so near the node.

She also said that they see lymph nodes enlarged all of the time due to infection and inflammation and she won’t be surprised if they don’t try giving me some anti-inflammatory medications to try and calm down all of the inflammation I’ve got, and then do another CA125. The best case scenario would be if all of this is due to the inflammation, and if the inflammation is a delayed reaction to all of radiation I had or to something I picked up in Greece. If that could account for the rise in CA125 and all of the inflammation in my bowels and that node, and it ISN’T cancer, well,…what could be better?

But I don’t know that yet. But at least that gives me some hope to hold onto until I meet with my gyn-onc on Wednesday or someone calls me to discuss the CT-scan.

I'm thinking that maybe it’s premature to worry yet. It may not be cancer coming back at all. I’ll let you know when I get some more official feedback. But I am so happy to not have my WORST fears confirmed,.. at least not yet.

Thanks again, everyone. It means so much.

shortmarge
Posts: 296
Joined: Nov 2008

I'm thinking you are right about it's premature to worry. Sounds like you have a lot of inflammation to take care of. It's wonderful that you have a very special daughter-in-law...

You have been on my mind and in my prayers the past few days and you always will be.

MIND, BODY AND SOUL!!!

Hugs, Marge

california_artist's picture
california_artist
Posts: 862
Joined: Jan 2009

Linda, sounds great. As I was reading two things came to mind, one that it is very easy to get a test called a C-Reactive Protein test that will be elevated in the presence of any infection or inflammation.

The other is in regard to the PET scan. PET Scans are truly the cat;s meow of diagnostic medicine, in certain situations. To truly rely on a PET, your lymph node would ideally be greater than 1 cm. Below that size PET can report a false negative. That's all I have to say on the matter for suggestions.

Other than that I cannot even begin to say how tentatively relieved I am with the outcome.

One other note of caution. If it possible that the node is enlarged due to an infection in the bowel or elsewhere, I would like to suggest that you take a more cautious approach to the timing of the PET. I took a two week course of antibiotics prior to the PET that was ordered to check on two enlarged lymph nodes that I had, one 1.5 and 1.2cm's. The reason I suggest this is that the inflammation due to its heightened activity will show up as metabolically active on the PET results and will cause yo to go goofy for a bit til they figure out what the problem is. It could also result in an unnecessry biopsy, which I would strongly caution against due to the placement you mentioned.

So, have a CRP to check for inflammation; take antibiotics, wait a few days after you're through, have a PET and call me in the morning. I am not a doctor although sometimes...

I'm just sayin'

Love you to pieces Girlique,

Claudia

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks, Claudia, for the good advice. I'll add that C-reactive protein test to my notes for Wednesday's oncologist appointment. I don't need any more false-positives!

I did some internet research to try and learn more about 'stranding' since I have it, and found something really scary for me:

"Acute perforation of the colon associated with colon cancer may cause fat stranding that is difficult to differentiate from that seen in cases of diverticulitis. Bowel wall thickening may be a helpful feature, as the mural thickening seen in malignant perforation of the colon tends to be more severe and more focal than that associated with diverticulitis. Other helpful clues are shouldering, whether the wall thickening is concentric or not, adjacent lymphadenopathy (which I looked up & is enlarged lymph nodes), and metastases. In some cases, however, differentiation between colon cancer and diverticulitis is not possible with CT alone. Enlarged regional lymph nodes are more suggestive of colon cancer than of diverticulitis."

so scary since I have the stranding, the bowel thickening, and the enlarged node. ARGH! No more research for me until after I get my official CT results!

thank you
Posts: 77
Joined: Jun 2009

Linda, they mention acute perforation of the colon associated with colon cancer: This is not the case for you, since colon perforation is VERY painful, you would be in the hospital. Stranding is a term that is used for inflammation, which is very unspecific. CRP and ESR are also unspecific, they don't add to diagnosis of nothing. A tooth infection can cause both of them to go up. I agree that you should celebrate for now. They saw no tumor, no metastasis. THAT'S WONDERFUL NEWS. Even the lymph node could be due to inflammation. Remember: a cancer patient has the right to have other diseases not only cancer recurrence. I am sure this is late radiation inflammation, or gastritis. (which by the way you took from Italy or Turkey, not Greece.... :-) I am Greek.... :-).
Your case reminds me my mom's inflammation that they saw on the MRI and WAS CONFIRMED BY PET!!!. It is not theoretical, it happens.
Enjoy your weekend.

thank you
Posts: 77
Joined: Jun 2009

Linda, they mention acute perforation of the colon associated with colon cancer: This is not the case for you, since colon perforation is VERY painful, you would be in the hospital. Stranding is a term that is used for inflammation, which is very unspecific. CRP and ESR are also unspecific, they don't add to diagnosis of nothing. A tooth infection can cause both of them to go up. I agree that you should celebrate for now. They saw no tumor, no metastasis. THAT'S WONDERFUL NEWS. Even the lymph node could be due to inflammation. Remember: a cancer patient has the right to have other diseases not only cancer recurrence. I am sure this is late radiation inflammation, or gastritis. (which by the way you took from Italy or Turkey, not Greece.... :-) I am Greek.... :-).
Your case reminds me my mom's inflammation that they saw on the MRI and WAS CONFIRMED BY PET!!!. It is not theoretical, it happens.
Enjoy your weekend.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I think your results of the CT scan sound pretty good if you ask me. Lymph nodes can be enlarged over alot of things; and we know you are having diarrhea and inflammation there. I am thinking maybe you need a colonoscopy. When was your last? I had my colonoscopy about a month after treatment and he told me that part of my intestine had either been scraped by his instrument or was irritated from radiation. Remember I only had brachytherapy - six sessions but part of the intestine had fallen over the uterus and unto the radiation field. It can be inflammed for quite a while. Perhaps you should go into your primary care office and give them stool cultures; particularly after your trip to Greece. Also, during chemo we get so immunosuppressed that it is easy to have infections hiding inside. Your symptoms don't sound like colon cancer to me. I do think you need some stool cultures; they also need to check for parasites, yeast, fungus, etc after all the chemo. And you do like to work in the garden.

I think of you everyday. CA125's don't sound very accurate in our cancer to me; sometimes I wonder why they even follow them. They just make us nuts!
Diane

kansasgal's picture
kansasgal
Posts: 118
Joined: Aug 2009

Have you done a recent stool sample to rule out clostridium difficile (c. diff)? I picked that bacterium up in the hospital while I was being treated for diverticulitis. It took me a while to figure out that I was no longer dealing with just the typical symptoms of diverticular disease. After a couple months of occasional agony and ongoing watery stools, I was at my PCP’s office with a broken bone in my foot when I mentioned my intestinal symptoms. My PCP and her PA sounded like a chorus as they said, “C. diff” at the same moment. My stool test confirmed their suspicion.

Has diverticulitis, itself, been ruled out?

Sorry to pose additional questions when you have so many already swimming in your mind. Of course you know we all want your symptoms to be for something quickly and easily treated!

More hugs from Sally

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My chemo oncologist just called to say that he had the notes from my CT-scan today, and although he hadn't looked at all the notes, the SUMMARY read "No Evidence of Disease"!!

WHOPPPEEEEE!! & WHAT ?????

My husband actually had tears run down his face; he was so relieved. I asked Dr. White on the phone if he had my scan slides open in front of him, and he said "no". He said that the person who reviewed my scan slides summarized with "no visible masses, tumors, or lymph node enlargement". I couldn't tell him what Audie has seen or the cursory 'look' she'd already had done, but I plan to ask Dr. Nash on Wednesday to open up my slides on the computer so that we can discuss the inflammation and bowel issues I'm having; and maybe I can get some more information on that little lymph node that Audie saw that wasn't on the scan last time. Dr. White said the CA125 rise must be from something unrelated or perhaps it was even a lab error, and that he will have Dr. Nash order a new CA125 when he sees me Wednesday.

So, I am thrilled, of course. Confused but thrilled. My DIL Audie is having someone else she trusts review my scan slides over the weekend just to get a second opinion before we ignore the lymph node she saw. And I will make sure Dr. Nash reviews them so that I am sure this isn't a false sense of security I have been given. But for now, for the weekend, I'm DANCING WITH NED!!! (abeit with a questionable CT and a high CA125).

Gunhild's picture
Gunhild
Posts: 37
Joined: Jul 2009

I am an RN and like you have UPSC with the typical treatment. Some times I wish I didn't know anything and could just take each situation as it comes rather than anticipate and make myself crazy. I try not to use the Internet for information as there is a lot of misinformation out there. When I do want to know something I go through the library website to licensed medical information or go through Sigma Theta Tau (Nursing Honor Society) website. I hope that things work out well for you. It's easy to blame every symptom on cancer and/or the treatment received and miss the actual cause of the problem I pray this weekend will not be too anxiety producing for you. I don't think we ever really relax with this diagnosis.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

linda,

i never believed it was a reoccurence, and all the evidence points to no cancer; so as far as i'm concerned you are, indeed, still dancing with ned. i'm following your postings closely like the legions of others, and expect only good news. please keep up with us when you learn something new. we're all right here.

as for me, i finished my 6 rounds of chemo yesterday, thank goodness, and will probably have only the brachy therapy, though not until my partner and i return from two weeks in kauai for rest and relaxation in a little cottage on the water. sitting on the linai having lattes, snorkiling in the ocean surrounded by a reef, swimming, walking along the sand, nothing sounds better to me. then back to radiation and having my port taken out asap. i've definitely decided to do it. i don't want the constant reminder, i don't want to keep it in as if i'm just waiting for a recurrence, and i don't want my body to have to fight this foreign object, plus the risks are clots and infections.

luckily i've been able to go to work one week of each cycle (i'm a psychotherapist) which has been great for me, and good i think for my clients to see me, and see me look fairly healthy. i think my basically strong constitiution has allowed me to weather the chemo as well as i have. i know the upsc diagnosis is a very, very bad one; seems worse than ovarian, though i don';t know about that. a woman filmaker i know, who now lives in n.y. just did a flim callled "a horse is not a metaphor'', about her own struggle with ovarian cancer, stage 3 i think. her name is barbara hammer and she's about 70, and an old time radical feminist, avant guard film maker. this film is about an hour, and well worth watching, especially because she'd doing so well now. also, has garnered a number of awards. for anyone interested, i believe it's possible to view it on your computer.

best as always to you, and everyone who reads this post, we all need a little good luck right now.

maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

dear all

i want to apologize for my posting before this one, that duplicated 4 times; my computer went haywire, and i have no idea why. i will be particularly careful in the future not to punch in the post more than once, even if it doesn't send right away.
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

What a roller-coaster day! AFTER my “NED” phone call from my chemo-onc, I called my DIL with the good news. I know she was happy for me, but I could hear the skepticism in her voice, as she’d seen my scans and that 1 little enlarged node. When we got off the phone, she called her doctor friend that gave the cursory look at my slides while I was still there, the one that said I’d probably need to get a PET scan to see what that lymph node was up to. It turns out this same doctor isn’t the one that gave the formal official Ct-scan slide review; someone else reviewed my scan slides and gave that NED report. My DIL’s friend was surprised at the NED report and said she’d pull my slides and really go over them as a second opinion. After she reviewed my slides, she added an addendum to my file noting the node she saw and recommending the oncology team carefully review my slides personally.

I haven’t told Vic any of this. He is so blissfully relieved that I just want to give him a good night’s sleep and a chance to be happy a little bit longer. My chemo-onc may phone tomorrow about the 2nd opinion, and burst his bubble. Or he may wait and let my gyn-onc handle the mixed review when he sees me for my appointment Wednesday.

It still may be nothing. It’s nice to know at least the one doctor thinks I'm NED, even if the other doesn't. And also good that I have other more cautious angels watching out for me just in case so they can get to the bottom of this.

It’s like a soap opera, isn’t it? You can’t make up stuff this crazy!!

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