question for those who have had reoccurrence

lindaprocopio said:

Just like my initial diagnosis, I had NO SYMPTOMS for recurrence
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!).

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

I have never had any symptoms either
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.

No symptoms during chemo
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 said:

lymph node and CA125
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

Mary Ann how is the radiation going?
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 said:

Ro,
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

mary ann
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

daisy366 said:

Ro,
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

Mary Ann,
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

cathyK said:

thank you for all your answers
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

Kathy
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

cathyK said:

thank you for all your answers
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

Good luck tomorrow
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

woofgang said:

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....

Woofgang- Sharon
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 said:

PET scan results are only truly reliable for tumors 1cm +
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!

1st Time Poster - Mom has METS (long post)
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