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question for those who have had reoccurrence

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

wondering about this as I come up to my 1 year visit,
of those of you who have had recurrence, did you have symptoms that you spotted and went in to the doc to check them out or was the cancer caught through the CA 125
or something else.
I ask this as my first doc did not do a pre operation CA 125 so there is no base number, and my CA 125 numbers have always been 20 or under, during chemo and now.
so is there a chance the CA 125 will not jump if cancer does return .
thanks for all the info you all have been giving , so helpfull!!
cathy k

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

My first hint that I might be recurring was a spike in CA125 from 11 to 155 when I went in for my routine every-3-months monitoring blood work. That spike in CA125 triggered a CT-scan. A slight enlargement in 3 lymph nodes triggered a PET scan. & when those same lymph nodes lit up on the PET scan, recurrence was assumed and I started chemo again. (The next CT/PET after 3 months of chemo showed No metabolic activity and I was again considered NED; but my CA125 spiked again 3 months after that, and a CT/PET showed 2 of the same lymph nodes slightly larger and lighting up again, and a needle biopsy this time confirmed the recurrence. I returned to chemo and have been getting chemo ever since.

I had no physical symptoms at all before my recurrence, either time. In fact, I STILL have no physical symptoms a year after my recurrence was diagnosed, although it is probably all thee chemo I've had since that keeps me symptom-free.

If CA125 wasn't a good indicator for me, I'd want to have CT/PET scans every 6 months (& I'd PREFER to have them every 3 months like I do now!).

hopeful girl 1
Posts: 454
Joined: May 2010

Friends,

I was interested in this same question. I just had my 6th chemo last week, for original treatment protocol and will be going in two weeks for follow up with my oncologist (who was also my surgegon) and my radiation oncologist. I am not aware yet of what tests they will be doing on me to check for recurrences. My oncologist mentioned he is not big on scans, but bigger on symptoms-but I wondered that very question. What if there are no symptoms and then if there was a recurrence it would be caught late in the game.

I know there are symptoms if cancer returns to original area, but what if a different area or lymph node?

I was told the CA125 is a good marker for me, as it was 300 post surgery, and per last test was 5.

I will have to be sure and ask these questions at my follow up in two weeks.

Hugs to all!

Cindy

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

my medical oncologist said a ca 125 and symptoms would be what we'd be looking for. i've always had symptoms, for cancer and for everything else it seems, so symptoms seems a fairly good indicator for me. of course, if cancer returns in some place i've never had it, and i have no symptoms, or strange ones, not clear what would happen. i did have a ct scan after my ca 125 (within normal) after chemo to have something. it showed a slightly enlarged para aortic lymph node, but it was decided to just leave it be.

i'm have another ca 125 later this month after not having one for 6 months. if its normal, i'm not sure whether i want any scans, but if it spikes, i'd have a second lab test to make sure of accuracy, then i'd probably have ct/pet. in fact, my medical oncologist fought for me to be able to have a pet scan, and finally won, but i wouldn't want to have a pet scan just to please her, only if we're all agreed it's necessary. i think the ca 125 has been a fairly reliable marker for me, so between symptoms and ca 125, i feel fairly covered, with scans as needed. it's all so individual...we know nothing, if we haven't learned that.

it turned out i am lactose intolerant, so i was having nausea and stomach aches--definite symptoms of something-- and as i think about it, i believe these symptoms were why i had the ct scan in the first place. once i stopped drinking milk, all was well. i'm not sorry i had that first ct scan, but do not want alot of them--they're so toxic in themselves.

each of us has to look at our own history, and figure out with our doctors and women on this site, what works best for us. we just have to put it together as best we can since no one really knows the "right" way to go.

hope you can figure our what works best for you, cathy, i'm sure you will.

sisterhood,
maggie

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

I never had symptoms before my diagnosis. Just an abnormal PAP test. I have had no symptoms since my surgery either. I did not have a CA 125 done before surgery either. The diagnosis of upsc was a surprise to all. After my first chemo the CA 125 was 428. It dropped as low as 14 during treatment. However my CA 125 has contnued to rise since I finished my chemo and radiation 8/09. My CAT scans have been negative all along. I have had them almost every 3 months. I do not like the CAT scans that often, but the onocologists say the risk of the cancer is greater than the risk of the radiation. My onocologist says he does not treat a number, but only if the CAT scan shows something or if I have symptoms. I will have repeat lab and CAT scan in the middle of December. My last CA 125 was 459 (that scares me.) But both my onocologist in Illinois and Florida do not seem concerned since the CAT scan is negative.

Good luck with your check-up. In peace and caring.

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

thanks everyone, I am seeing this ca125 is very important and I WISH my former (know everything , thinking he is god, ) doctor had done a ca125 , but he said he did not do ca125 because it does not show any thing with cancer. he even went as far as crossing the ca125 totaly out on my blood test requests!
now wondering , since my ca125 has never been over 20 and in range of 15 -20 this from the 3 times I was able to get the ca 125 added to my blood test during chemo (before the doc crossed the option out! ) and after with my new doctor. new doctor says she does not know if the ca125 even registers with my body.
so thankfull I am feeling good, and no cancer to date, ancy about the visit on thursday, and still mad and sad that doc # 1 did not do an original ca 125 I wish all doctors got on the same page!
the only good thing I have to say about the first doc is he had me on a chemo that my new doc said was new and she was just starting people on this chemo mix, cisplatin, taxol, andromisin, (sp)
seems everyone I see is on carboplatin and taxol,
want to have thursday over and behind me ,

thanks again all
cathy k

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

I have heard cisplatin referred to in the studies as the "red death." You may want to a little research on that combo as it sounds like an older mix to me except for the adndromisin, which I know nothing about.

Also, your doctor sounds like an arrogant ***, if you don't mind me saying so. You might take in some of the reams of research papers on the CA-125 and UPSC, since he doesn't sound all that bright.

Claudia

Always Hopeful
Posts: 234
Joined: May 2010

Hey Cathy,

The cisplatin/taxol/adriamicin mix is one of five protocols that was offered to me when I went for a 2nd opinion at Memorial Sloan Kettering. That was after the carbo/taxol regimin.

Wishing you much luck and comfort tomorrow.

Peace and hope, JJ

Always Hopeful
Posts: 234
Joined: May 2010

Unfortunately I had no symptoms DURING my treatments. What a shock for all of us when my post carbo/taxol scan showed that there was huge tumor spread. Because of not having any symptoms, no scan was done midway through the treatments. In addition, my CA 125 have always been low. Just this past Friday my gyn onc told me that she has never witnessed a situation like mine...recurrences yes, but months after treatment, not while treatment is being administered. With UPSC, this all seems to be a crapshoot.

The best thing to do is enjoy your life, go for the recommended testing and be positive!

My best wishes for wonderful news after your 1 year visit.

Peace and hope, JJ

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

Although I felt fine, my UPSC recurrence caught by rising ca125 and a enlarged lymph node that I caught and brought to attention of doc. Followed up by biopsy/removal and pathology. Continued to watch CA125 trends for 6 months and then PET confirmed UPSC still there. I'm in chemo and radiation treatment now.

Mary Ann

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

Have your symptoms gotten better from the radiation? The pain and trouble swallowing? I hope they have gotten better. Hope you are enjoying your time off work, too. In peace and caring.

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

Thanks for asking. I am really enjoying (as much as one can with 8 medical appointments a week) not working FT. I still work a bit PT - just enough right now.

Symptoms: I'm in the homestretch. - 1 more chemo and 6 more radiation tx. The radiation is the toughest - skin burned and itchy and throat holding out amazingly well. Doc said my symptoms 3 weeks ago were typical of what they should have been weeks down the road. So I have decided that the stress of work and the anxiety I projected exacerbated the pain!! My throat is tolerating things much better - evenings and nights are uncomfortable after treatment. I continue doing self chakra exercises, meditating, yoga, healing touch, and babying my throat with soft foods and gargles. Must me helping me.

I get CA125 on Friday - my first since starting tx. Can't wait for results. I'll be in touch with you. Mary Ann

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

so glad ro checked in with you; i have been thinking of you as well, and was going to see how you were doing. so glad you're doing about as well as can be expected, maybe better, and that you're taking such good care of yourself. i bet that ca 125 will hardly register, the number will be so low!!

i'm sure working full time exacerbated all your symptoms; how could it not? great you can just work a little, keep your hand in, so that you're doing some things other than medical appointments. geeze.......8 a week is beyond the pale.

yea! you're in the home stretch now; keep us posted. we're thinking about you and holding out for only the best outcome.

hugs and sisterhood,
maggie

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

So good to get your update. It sounds like you are handling your treatments very well and it does seem like things are going better since you have the time to rest, pamper yourself and do so many wonderful healing practices.

Will pray that your CA125 Friday is nothing but good news! You are in the home stretch....hang in there!

Keeping you in my thoughts and sending positive energy your way!

Karen

Always Hopeful
Posts: 234
Joined: May 2010

Glad to hear you are tolerating the radiation better than earlier in your treatment. It seems you are doing everything right. I wish you wonderful news re CA125 and an easy conclusion to the treatments.

Peace and hope, JJ

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

My email is down, or should say I can't access Yahoo here at the moment, so I don't know what your message was, however, I have been thinking often of what you said about my painting Gwendolynne and how much better she made you feel. I've been meaning to tell you how much those comments meant to me and that I have again pulled out my canvases and paints. There is, or at least I feel an obligation to paint, if those panintings can make someone near and dear to me, as you are, get a more positive hopeful view of life.

Love you as always, talk to you soon,

Claudia

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

Hi, I am concerned too about all the CT scans you are getting. There is a huge difference in the radiation you actually get between the CT scan and the combination PET/CT, as the CT portion of that one is only to place organs and such, it's the PET that does all the detecting cancer part. I would urge you to ask your doctor to a PET/CT combo which may show why you are having an increase in your CA-125. the difference may be 1/500 or more of the amount of radiation you get.

Best of luck in the results.

Claudia

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

I finished the 6 doses of taxol/carboplatin 5/20/2009 and radiation 9/1/2009. My 2/26/2010 CT scan showed a small tumor in the left lung. By 9/15/2010, the CT Scan showed another tumor in the left lung and a very small one in the right. I just had a left VATS thorascopy to remove the 2 tumors. But during all of this, my CA125 has stayed in the 6 to 8 range with very little change - certainly no indicator of recurrence. There were no other symptoms since the lung tumors were so tiny - the largest was 6 mm. Even the PET scan was inconclusive - the cancerous lung tumors didn't register with high metabolic activity.

So for me, all we seem to have now is a CT scan to check for recurrence. By the time we see them on the CT, they've been growing for a while. My lymphadema therapist told my about LSN MRI, a new technology being tested in Boston and Germany. It scans at the cellular level so could be a great diagnostic tool for those of us who are not CA125 sensitive. But who knows if it will be available in our lifetime....

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

I had questions for you that you answered on another thread.

I think it is strange that the PET didn't pick up these - do you think it was the small size?? And strange that CA125 stayed low unless this is not reliable marker for you.

I'm glad you had the brain scan and the biopsy of the lung tissue. It sounds like they are doing everything right.

I'm doing well, you can read my comments above here - thanks for asking. I wish you the best and keep us posted.

Many blessings, peace and joy to you. Mary Ann

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

I read a study showing that anything smaller than 1 cm lights up on a PET scan, it can be a false-positive as high as 40% of the time. (1 cm = 10 mm). But Pet scan are something like 97% accurate in diagnosis cancer activity if the area that is lit up is 1 cm or larger.

It's those false-positives that they insurers cite to justify denying PET scans for various cancers that spread microscopically initially and don't usually 'clump up' very fast. A CT/PET gives you a measurable image of the areas that light up on the PET so that you can determine how reliable the information you are getting is apt to be. I had tissue assays done of 1 of the lymph nodes that lit up last November just to see if hormone drugs were a posibility for me. They aren't really as I am ER-, PR-, and HER2-, so a lot of possible therapys were ruled out for me. Each of you should get tissue assays done if you have any kind of subsequent biopsies or surgeries so you don't waste time trying therapies that don't work for you.

I had my 3rd round of Doxil this morning. I had a CA125 drawn but no results back yet. My CA125 went from 134 to 172 to 155 to 190 while on Doxil, so I have no idea if the Doxil is working. I will have a CT/PET in 3 weeks to see what's up. Carboplatin and targeted radiation may be my next treatment protocol, according to what they said today, dependent on what the CT/PET shows. I'm personally hoping the CA125 is all just whacky\iness and the CT/PET shows good news and I can stay on the Doxil. That's not likely as CA125 has been a relaibel indicator for me. I'll keep you posted!

LesleeInCT
Posts: 2
Joined: Nov 2010

My Mom had grade 3 endometrical cancer (clear cell and another type - both estrogen/progesterine receptors). She went over a year with vaginal bleeding and her PCP said she had a bladder infection and vaginitis! If she had gone to GYN when bleeding started she wouldn't have been a gr 3. Anyway, fast forward almost 5 yrs and mom is bedridden with slurring words/dizziness/nausea/vomiting/blocked ears. I call her doc as soon as I sense slurring in her words and want him to see her asap in case she had a mild stroke. So she goes and PCP diagnoses her with 1) ear infection; didn't get better 2) then allergies (because of all her coughing complaints over the summer); didn't get better with allergy meds so he finally said 3) Vertigo - just deal with it. So after nearly 5 weeks of being bedridden and eventually dehydrated/confused and losing bodily functions I called the Ambulance as she was incapable of even crawling to the car. Once in the ER they found her heart in arrythmia, which prompted a chest xray where they found a huge mass in her lung, which prompted further testing a biopsy. While in the hospital waiting for the results and dealing with the heart rythm issue, the hosp doc thought she had lung cancer. But I still was concerned about her cognitive ability - she wasn't "right". Well 5 days later, she complained of a headache - literally, the doctors all turned at looked at each other - rushed her in for a CTScan and called head of Neurology in on a Sunday. He performed and read the scan and within minutes was rushed in for surgery to removed a 5cm brain tumor that was blocking the passage of fluid thru her brain - she was at risk for herniation and certain death if the surgery wasn't performed. Surgery was text book and there shouldn't be lasting side effects. She immdiately began to improve - her dizziness/nausea and slurring improved right away. It took another few days to get the biopsy results back - but when they did, the cancer was her Endometrial Cancer which mets to brain and lung. Her treatment is 3 weeks of radiation to the head (she ends that on Tues) then the Monday before T'giving begins Chemo (Taxol/Carboplatin)for 3 treatments. She responded well to that cocktail originally so they will attempt again. Now for those who are reading this - my Mom did NOT keep her followup appointments!!! In fact she hadn't seen her Onc for over 2 yrs. Had she gotten her follow up tests, she may not be in this sitsuation. She is a young 72 yr old who takes care of her 92 yr mother - which I have somewhat taken over. Mom was just released from Nursing home back to her house. I take her to treatments and help with meals. I don't have any siblings to rely on and Mom isn't married, so I have alot of responsibility. Luckily I hve a flexible job and live closeby.

The docs have said she has an average of 1 yr survival rate. Anyone else have this happen or have a realistic idea of survival?

Sorry for the long post!
my email is choclabs@sbcglobal.net

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

Leslee, I am so sorry to hear about your Mother's encounters with the medical establishment. Unfortunately her PCP seems to be totally incompetent. In addition, I would have thought she would have inquired about follow-up re: your Mom's uterine cancer! Am hoping that you find a new PCP!

It is unfortunate that your Mom didn't do follow-up with her oncologist, but for whatever reason, she didn't and there is nothing to do about that NOW. Thank goodness you called an ambulance and got her to the hospital and she finally got diagnosed, although the outcome is not so good.

I have no idea how long your Mother has left....no one does. BUT, the best thing you can do is continue your support. You are obviously very committed to helping here and that is the biggest gift you can give your Mom. Just support her through her treatments and try to focus on enjoying each day that you have you together. Laugh, Love and Live!

Please keep us informed about how you are all doing and don't hesitate to ask questions or just use this discussion group to vent.....we all understand!

Blessings to you!!

Karen

LesleeInCT
Posts: 2
Joined: Nov 2010

Oh Yes - we plan on getting a new PCP - he is 85 and even in his early days was never a very proactive doctor, very passive about treatments (even for HBP) and never overly concerned with her being overweight.
She actaually went for her checkups with her Gyn Surgeon but the last couple of years felt "afraid" to go to her Oncologist - it was always one excuse after another and my mom being a bit Agraphobic hated the thought of driving into the city to the appointments, and I couldn't always find the time with a high pressure FT job and 3 small kids at home. I sometimes feel a bit guilty about allowing her to go over a year with bleeding before I demanded her to go to a gyn (and get her first mamogram at 67!). But she needs to take responsibility for herself and be her own advocate. Since this has all happened, I've gotten her legal stuff (and my grandmothers) coordinated with the lawyers (wills, living wills, PAO, Conservator etc) and got appointment with an insurance agent (because she never bothered looking into Medicare Part c/d/g herself) I feel like Im the mother and she sits back and is completely happy with this arrangement. In fact she insists on using a wheelchair at the hospital for her treatments even tho her PT doesn't want her to as she is supposed to be getting her strength back. She also gets severe mood swings which I suppose is due to the diagnosis and her way of fear coming out. She gets bad anxiety too - we (me and docs) trying to get her on an anti-depressent so she doesn't get these radom panic attacks. Im trying to do for her what is "needed" and not just what she wants or guilts me into - because I will lose my job and family and continue to enable her (which is another problem in the family and the reason she still lives with her 92 yr old mother. But thanks for listening while I vent

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

I'm 9 mths out from my initial treatment and have not had a recurrence...to this point. I, too, had no CA125 taken before my surgery so I have no idea if it is a good marker for me. The doctor seems to think it is a good marker & that is what she goes by. I also had her add a HE4 tumor marker in addition to the CA125 for my peace of mind. She wasn't too excited about it at first but looked into it & added that monitoring test as well. She said I was about a year and a half ahead of everyone else requesting that marker. Today I have my 9 mth ckup.

I wish you the best & continued good health!

Becky

Always Hopeful
Posts: 234
Joined: May 2010

Dear Becky,

Hoping your checkup went well. Let us all know.

Peace and hope, JJ

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
cathy k

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

Hi Cathy....such wonderful news! Thanks for letting us know the outcome of your visit with your Dr.

Celebrate and keeping dancing with NED!!

Best wishes always!

Karen

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

Here's to that 5%!!!! Enjoy dancing with NED!!

Mary Ann

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Yep - I'm envisioning you leading the 5% survival group! What great news! I've been watching for your post.

Hugs from Sally

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

cathy,

great news on your tests, cathy. read the anti-cancer book re: statistics; they just don't make sense for individuals. period. so just keep on truckin' like you have been; sounds like everything is going to be all right.
sisterhood
maggie

Always Hopeful
Posts: 234
Joined: May 2010

What wonderful news...you go, Girl! Keep doing what you are doing and lead the way to demolishing statistics!

Peace and hope, JJ

Kaleena's picture
Kaleena
Posts: 1975
Joined: Nov 2009

Hooray for you! I am thrilled with your news and for you. Keep on dancing!

Hugs and prayers to you!

Kathy

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