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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....

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

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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Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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.

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

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.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

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.

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

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 *** is killing me! I had a PET last week - my tumor "seems" inactive - tell that to the pain in my ***! 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

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

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!

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

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.

bonniesue
Posts: 126
Joined: Apr 2009

My thought and prayers are with you and I am glad your DIL can help in her department to make sure you are NED. Always helps to have a second pair of eyes to be sure all is ok.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Linda:

Just wanted you to know my thoughts are with you. Sometimes it would be nice not to wait for the phone to ring, not to go for tests, etc., holding back emotions to keep are families happy. I guess I just want you to know that there are others out here thinking about you. From all of the threads I have read, you are a very positive person. Don't let this get to you. Remember, you are in control here.

Sending hugs your way!

Kathy
(Pennsylvania)

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

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.

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

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

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

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

deanna14
Posts: 743
Joined: Oct 2008

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!!

shortmarge
Posts: 296
Joined: Nov 2008

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 *** and take names... Fight like a Girl" - Bomshel””

MIND, BODY AND SOUL!

Marge

MoeKay
Posts: 261
Joined: Feb 2004

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

thank you
Posts: 77
Joined: Jun 2009

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!!

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

To the cute little red-haired girl,

Happy Thanksgiving---but, the comment about the node size reminded me of something. Four months after I had the operation, I had a PET/CT. Since they had taken out none of my lymph nodes and I decided not to get chemo or radiation, I had to go around and beg for a PET/CT. Anyway, the scan showed two enlarged nodes. They were in the area closest to the first nodes a wayward cancer cell would enter when leaving the uterus And were both 1cm, give or take a few mm's.

That was not the best news I'd ever had. So, I went to my gyno, the doctor whose opinion I respected and asked his opinion. He said a node measurement is a very inaccurate thing and that there could be other reasons for any enlargement. Wait, I've lost my train of thought. Ah, okay. That was in the beginning of August. So I did the diet thing with a vigorous attention to anticancer strategies. In February of this year, I had a CT scan, which showed both nodes had grown .5 centimeters each. Well this was to say the least not thrilling to hear, so I went back to the gynecologist asking the same questions. But I also realized that there was a growth of less than 1mm per month over the six month period. He again said, room for error, don't panic. My oncologist wanted to just have me get a CT every two months. That sounded unsound to me, and when I talked to the gyno he said that's way too much radiation and could cause cancer in it's own right down the road. I asked if he would order a PET/CT so we could check for metabolic activity.* Because he worked in the same facility as the oncologist and I had an oncologist, while he felt the PET would be reasonable for determining what was happening, felt my cancer care was the oncologist's domain. Sorry this is so long.

So I went to my general doctor who is an DO. OD? Doctor of Osteopathy. She listened to my dilemma and had a fit, ordered the PET/CT. And I know I've mentioned this before numerous times but, I reasoned that if any rapidly growing cells would light up on the scan and I had the enlarged nodes for some reason, that taking an antibiotic for two weeks to knockout any possible infection type cause, and waiting an extra week for good measure would lessen the likelihood that an infection would be the cause of the activity. She agreed to my reasoning and ordered the antibiotics to help stave off a needless biopsy down the road.

Good grief. Anyway, in the end after the anti's and then the PET/CT, not only was there no activity, but the nodes according to this reading were the same size they were on the original scan in August of the prior year. This scan was done in the middle of June of this year.So apparently over the course of nearly a year, things were unchanged.

The short thing is don't panic and since you show signs of an active infection, why not ask for a stool culture and take the appropriate antibiotics prior to the PEt/CT. This will eliminate the need for a biopsy should activity show up on the scan. Again I apologize for the length of this thing. Enjoy your Thanksgiving. It's most likely just a very bad infection.

Love ya,

Claudia

*For those of you confused by my asking for a PET/CT when I had just been told there was danger from radiation in the CT use, the radiation used in the CT part of the PET/CT is much, much less than that in a regular CT, and is used for accurate positioning of body parts mostly. PET uses no radiation, but detects heat signatures instead. Well, I gotta get a goin' on the turkey and the happy times and at least I've convinced myself that Linda is going to be just fine and dandy. ; ~ )

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daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

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

culka's picture
culka
Posts: 161
Joined: Oct 2009

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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barb55's picture
barb55
Posts: 91
Joined: Jan 2009

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

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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livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Linda...what sad, happy, confusing, troubling news; my heart stopped when I read your first post about possible recurrence; best wishes for strength and peace; you know how to get there cause you've been there before; you once asked me if that was how it would be eg living three months at a time...; keep the joy of being alive in your heart and count all those blessings over and over again

sincerely with thoughts and prayers
Marie

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