Cancer Survivors Network

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.

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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.

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.

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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!

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!!!

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.)

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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.

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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

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.

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.

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..

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

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!

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

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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.

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

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

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!

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.

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.

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

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

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).

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.

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

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

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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Linda- I have been out of touch for over a month- my mom was ill.She passed away on November 1. I went to Florida to be with her. I think I just couldn't handle her illness and cancer world so I didn't check the group till tonight. I am so sorry for the rollercoaster you are on right now. I so wish I could offer up something wise and wonderful- I understand you are in an awful place tonight. Breathe in breathe out and move on to a happier place soon- okay? Love, Barb

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My sympathy. It is hard to deal with cancer and an ill Mother. In peace and caring.

Sorry for your roller coaster day. I hope that the lymph node turns out to be nothing.
Worry does not change anything other than rob you of time to enjoy yourself.

I know what you mean about your husband being so stressed out. Mine was too when I got the news of my CA 125 going up. You feel so bad for them, that you are putting them through this stress. I wish I could make it better, but unfortunately we have no control over it. I am just so thankful that I have him here.

I hope all goes well on Wednesday. Be thankful for those "cautious angels". In peace and caring.

All, this has been one torturous ride today. We're waiting on pins and needles. We're insanely happy. We're not sure if we're happy or not any more. Then Barb's sobering news.We all deserve a good night's sleep. Maybe tomorrow we'll wake up and this will have been a crazy dream and life will be good again.

Barb, so very very sorry about your mom. Really sorry.

Claudia

Patricia, you've come a long way. Look at all your URL postings. And then there's the poetry. Love you.

Thank you all for your kind words of condolence. My mom had lung cancer but that's not what caused her death. I was her cancer support group, she would have really benefitted from such strong honest women but the internet was not her thing. I am so lucky to have you in my life. When I was first diagnosed (in 2007) it was so lonely. Of course, we will need to change the name of this group at some point - How about the "We Used to Have Cancer But Now We are Just Chillin"Sisters?"
By the way- in my photo I'm the old lady of 60 having fun with my daughter at a friends wedding.

Hi Linda - I haven't been on this site in a few weeks - I read all your messages and was amazed. You're right - it's a roller coaster! I've been through similar results lately and still don't know what's what! But I do know that I have radiation damage. Thickening of the rectal wall - which sounds like something you mentioned. Basically, my ass is killing me! I had a PET last week - my tumor "seems" inactive - tell that to the pain in my ass! The area around my viginal cuff (wherever that is) lit up - but they were not sure that meant anything???? I don't understand them. And I never can get two doctors to agree. Man.... they are just out there in unknown territory - doing the best they can. I just hope you are okay! Day by day - you'll get to wednesday - then you'll have some new info - and go day by day again. It may be a good idea to stop all the on-line research for a bit. Research can sometimes give us information that is not really accurate. Take care - I'll be thinking of you on Wednesday. Kiss your husband - have sex - and enjoy the sun.
Mia

Hey, nice to hear from you. Because UPSC and other uterine cancers recur in the vaginal cuff-which is just referring to where they stitched the top of the vagina together after removing the uterus and other bits and pieces, and your's shows metabolic activity in the PET, I would highly recommend that you have someone of your doctors take an actual look up there with a very bright light. I have internal bright light exams every 4 months or so, and even though I have asked for a pap test, which I do get, my doctor assures me that he can actually see the evidence of cancer's return long before a pap comes back positive. It can show up as little white areas on or near the spot of closure. Actually, from what I've read, this cancer shows up on it's return most often in the vaginal cuff, so make someone look, okay? And, metabolic activity usually needs to be fairly large to show up on a PET so no dilly dallying. Call tomorrow and whine big time for an appointment. And yes, I do sound like your mother. My daughter is very ill and I've given up being tactful with her and just started telling her what needs to be done, otherwise, she doesn't do things cause she's just too down about the whole situation. This attitude has spilled over here I guess. So eat your veggies and go to the doctor!

On a more positive note, PET will also show just a general infection, but in any case someone needs to actually look and see what's going on, and make sure they use a very, very bright light and a magnifier if possible.

Claudia

So sorry about the butt issues, they can be sooooooooooooooooooooooo annoying!

I have two appointments coming up in the next two weeks. I'll make sure to mention the very bright light - I mean DEMAND the very bright light. I'll also eat my veggies - thanks. How old is your daughter? Mine will not take any advice from me no matter how much I try to take charge.

I had my meeting with my Gynecologic Oncologist, who did a pelvic/rectal digital exam and a PAP, and he couldn't feel or see any abnormalities. He said that if it was just the 1 enlarged node in the pelvic region, he'd agree that this is most likely the inflammation from the radiation making my CA125 rise and that node to swell, and initially wanted to set me up with a nutritionist so that I could change my diet to ease my bowel distress.

But then he opened my CT-scan 'addendum' that also notes an enlarged node in my lung and one somewhere in my midriff area. He was unable to FIND either of the enlarged nodes on my actual CT-slides, but he said that unless they are pointed out with an arrow by the radiologist in the slide, he is out of his expertise "about the waist", and him not seeing them doesn't mean they aren't there. (But my DIL didn't see any enlarged nodes anywhere but that one in the pelvis when she did the CT-scan & she was really looking for something in the lungs! & neither did the 1st board-certified radiologist who thought I was NED.)

Soooooo, I just have to wait until Monday for my PET scan. When I pressed him, my gyn-onc said that with the rise in CA-125 and the enlarged nodes in distant areas, he believes I have a 95% chance that the lymph nodes will light up and I will be back in chemo before Christmas. He doesn't think the nodes are in a place where surgery or a needle biopsy are a further diagnostic option but didn't totally rule that out, saving that discussion until after my PET-scan. If there is surgery and fresh tissue, he will do an assay to help make the chemo drug decision. He said the choice of chemo would be up to my chemo-onc but probably carbo-taxol again. (bald again!)

When I pressed him, he acknowleged the statistical 15-month average survival rate after UPSC recurrance, but gave me a big hug and said that even if I've recurred and a 'cure' is now out of the cards, he has had patients who go in and out of chemo and remission and still travel when they feel well, and live a good life for 10 years. I am not going to dwell on this until after my PET scan results are in. I still have a chance of the PET NOT lighting up and me NOT having a recurrance. A small chance, but a chance.

Deal Linda,

Didn't you tell him it was the Thanksgiving Holiday and you had things to do other than worry some more over this. I have been waiting all day for good news. This is not good news. Well, now wait, maybe it's just inconclusinve news. Everything could be fine. Sorry, I am just so saddened for your sorta news, I am at a loss for words. I know you believe in God, so there must be enormous comfort there for you in times such as these. You will be in my thoughts often over the next few weeks. Let's all work together to see if we can't do something to take charge of getting well and whole again and beating this thing. I was telling Jana(culka) earlier that I had stopped paying so much attention to what I eat as though I didn't have a care in the world. I'm over that now. This is very, very serious if someone as diligent as you, has a possible recurrence. You are my bright shining hope.

You have my number if you want to discuss anything further. Call anytime. I'd like to work with you to figure out what we two can do.

Love to you and your family and friends ,

Claudia

Linda,

I agree with Claudia that it is more of an inconclusive update than a realistically sad one.

Sometimes when we press the docs when all the facts are not in, we get the glass half empty response....why do we do this to ourselves??

I can imagine how you are feeling today...one minute fine, one minute crying while peeling the onions....

TRY to focus on the day and remember today you get to eat the WHOLE Pumpkin pie. May you feel our arms all around you giving you a big Turkey hug...

Keep us posted....sending you prayers girlfriend!

Laurie

It is way too soon for reoccurance! I refuse to believe that... I think they are preparing you for the possibility of the worst. I think they are going to find that this is inflammation from some sort of viral infection. I hope so!!
My heart breaks with you... we are going to continue to fight this beast and we are going to beat it. That's all there is to it!!

I'm with Deanna... No No No No Noooooo... It's Inflammation! My prayers are with you!! Sending you big cyber hugs and hopefully someday soon they will be in person!

I love the song by Bomshel - Fight Like a Girl:

"Oh, with style and grace, Kick ass and take names... Fight like a Girl" - Bomshel””

MIND, BODY AND SOUL!

Marge

I'm so sorry that you received this lousy news, but I would still not jump to any hasty conclusions based on the interpretation of the CT results. I went to the ER in late summer for a bad cough and was told I had metastatic cancer to the lung. They also diagnosed me with pneumonia. I am a 10-year endometrial cancer survivor and my cancer history was listed on the CT report. I asked the ER physician for the report to which he was referring, and he gave me the CT report which said "suspicion for metastatic cancer." He presented the cancer diagnosis to my husband and myself as a done deal. They wanted to admit me for a PET/CT, bronchoscopy and lung biopsies. I declined to be admitted and had the CT report faxed to my gyn-onc who I still see twice a year. My gyn-onc advised me to work with a pulmonologist to get the pneumonia, or whatever other acute process was occurring in my lungs, cleared up so they could see if anything else was going on.

After blood tests, a repeat CT, a bronchoscopy, lung wash and lung biopsies (and a lung puncture thrown in just to make things interesting), it is now believed I have a rare condition called eosinophilic pneumonia. While the experts disagreed on most things about treating me, they did agree that I needed steroids. After a week on prednisone, the latest x-rays of my lungs are substantially clear, not showing any nodular areas which started this 3 1/2 month roller coaster ride in the first place.

Incidentally, about those percentages: I went in for the bronchoscopy on an out-patient basis and was informed there was a 1% chance that my lung could get punctured during the procedure. Well, you guessed it; I won the lottery, and ended up spending a few days as an in-patient. Since that experience, I look at these percentages in a new light.

The point of my story, Linda, is that things are often not what they seem, especially for cancer survivors. I think they look at our scans differently than they do for the rest of the world. I am working with two pulmonologists since my disease is so rare. One says I have no lung damage and the other says I do, based on the same CT scan. I think they are really afraid to miss things with cancer survivors, and will automatically err on the side of over-reporting.

How much are they saying the node in your lung has enlarged? Is the change in size significant? My original CT had a preliminary report (done in the middle of the night) and a final report done locally later in the day. The two radiologists reported the same thing, with different measurements.

I'm hoping that the PET scan on Monday brings nothing but good news for you.

Happy Thanksgiving,

MoeKay

Linda did you ask him what he thinks about the bowel inflammation? Infection is a good reason for lymph node enlargement. Remember: my mom's lesion in vaginal cuff (where recurrence usually happens), did light up on PET scan. But it was inflammation (6 months after radiation). And still in the PAP tests they see inflammatory cells. I think they will only do chemo if there is persistent rise in CA 125. I hope you won't read my post today, because you will be so busy and happy with your family. Happy Thanksgiving Day!!

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Your story is fascinating. You have good advocacy skills and are being very proactive with your health care. I'm glad you have docs that listen to you and help you get what you want. My PCP is a DO - I think they are in every discipline. I wonder if there are GYN/ONCs - if so that would be the very best since they look at us more holistically though they are still very much part of the western medical world.

Back to you - Did they confirm that the enlargement of nodes was cancer spread or something else?? If it was definitely cancer, then the diet theory seems to be validated.

Mary Ann

So, how are you? Re your question.

Nothing definitive re the nodes. I have no way of knowing if they were originally a symptom of spreading cancer. I know that diet effects this cancer. After a number of years, that's right years of mild spotting, where doctors just put me off and did paps to check for cancer, (I knew very little and I too trusted my doctors to do the best for me), I ate a nice big steak, something I hadn't done for years, and woke up in the morning to a great deal of--ah--female period type stuff- don't really want to say the b word on Thanksgiving. Tried the meat again the next day just to be sure there was a causal relationship and the same thing happened. The only other time there was anything other than spotting was the day I had a second pot of coffee. Those two things are HUGELY ACIDIC.Those two incidents made me a believer and that is the week I started my research, because the doctors obviously were letting a diagnosis slip through their fingers. Everything I've done, every test I've had, I've had to investigate for having it done. Quite frankly, I'm getting tired of being in charge. I'm not a doctor. I'm just having to learn as fast as I can though. My OD is a dream. The first time I met her and told her what had been going on with my "treatment", she cried and hugged me. Gotta love that kind of doctor. She couldn't order the PET/CT fast enough and ordered some other tests she thought were relavant. My CRP in very high at 9.8. So far no one has been able to tell me why it's off the chart. I have read though that the CRP is the most reliable predictor of a poor result in cancer. Eat more ginger etc...

Let's get a cookin' and kissin' those we love. Enjoy the heck out of your day for tomorrow back to the raw ginger and all the other anticancer stuff.

I have no intention of going over the edge without one hell of a fight! Turkey today though.

Ah, Jill, you're so lucky to be able to enjoy this day in the city.

Love and kisses to all,

Claudia

It is not diet theory, it`s fact and frankly only thing what we can do. Together with positive thinking and exercise and I`m talking exercise not just gentle walking. We have to get rid of toxins and skin is the largest organ. So let go ladies start sweating.

Claudia, you are your own doctor. Nobody love you more than you and only you know what is going on, just listen to your body.

And finally to Linda, if it is true I`m sorry, but everything is happening so fast, all these tests, which not showing anything for sure. Look, it is like House every Monday. 45 minutes show and 16 diagnoses. If you are able don`t eat anything acidic like meat, sweets, coffee,...Acidosis = inflammation, make ginger tea or green tea. We are still breathing and life is awesome.

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Thinking of you-So thankful for you. I am going for a walk with my daughter and then on to the pie-for our moms and for each other. Sending you love and strength.
Barbara

What is CRP??? Never heard of it.

I am still waiting for pap test result. Since it's been over 2 weeks let's hope it's negative. I will call them Monday.

I feel good and I'm working out big time - I've dropped a pants size and building some stamina. Preparing for my big Feb trip.

Take care everyone. Mary Ann

Stands for C-Reactive Protein, it's one of the body's inflammation markers. It has become a valid marker for prediction of heart disease. Doctor's would like to see it as close to "0" as possible. Anything greater than 1 is considered a flag for future heart disease. They hate a 3. So, when mine came in at 9.8 and I knew of the cancer link, I was very concerned. I still haven't found the cause. Sometimes it's elevated if there is some sort of autoimmune disease, but that has come back negative so far. Should you do some research and find out something that might shed some light on this anomaly, please let me know. That goes for anyone else out there that finds any info, good or bad, although I don't think reading that it is, "the most reliable predictor of a poor prognosis in UPSC" can get any worse.

I am very full and very envious of your one size pant loss. I would recommend anyone with any questionable heart issues have one, C-RP test. It's a blood test and costs in the neighborhood of twenty dollars, so even if the insurance company tells you it's a no go, most people can afford one on their own. When it's low, it's very comforting. My daughter's is only .8. She thinks she's sooooooooooooooooooooo special doncha know? They talk like that around here.

Love and kisses,

Claudia

This is just something I found right now that referenced the c-rp/cancer connection:

CONCLUSION: Our results suggest that elevated serum CRP levels are associated with a less favorable prognosis in patients with surgically treated endometrial cancer. LEVEL OF EVIDENCE: II.

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