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CA 125 contines to rise

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

Went to doctor today and got lab and CAT scan results. It's been 7 weeks since my last CA 125. It went from 84 to 344. Luckily the CAT scan is stable though. Although he says it is just a number, he still thinks I should go on chemo again. It has been 4 months since my last chemo. He said I could wait until after the first of the year to start chemo.

He says that the cancer can spread even though the CAT scan does not show anything. He said the cancer can be like a film spreading inside. That's very discouraging to me. Has anyone else's doctor told them anything like this?

My doctor in Florida said he would wait to start treatment when the CAT scan shows something. I will be anxious to get my Florida doctor's opinion. He is a gyn/ono and the one in Illinois is a med/ono.

I asked about a PET scan and he said the PET only lights up what shows on the CAT scan, and the "film" would not show up on the CAT or PET.

I am feeling good and less tired than I had been. My hair has grown in enough I don't need my hat anymore.......except for warmth when the temperature is 39 degrees.

We are headed for Florida on October 29th, so I will see what my doctor there recommends.
We had a great time in New Mexico and it was amazing to see 500 hot air balloons in the air at one time.

You all remain in my prayers. In peace and caring.

JoAnnDK
Posts: 276
Joined: Jun 2011

Ro, I am sorry you got this news. It is all news to me.

My doctors HAVE told me that a tumor must be a certain size to show up on a CT scan. So having a "clear" CT scan does not mean there is nothing there. My tumor did not show up on a CT scan but since an endometrial biopsy had shown cancer, we knew what we were dealing with.

I have no idea about a PET scan ——thought it showed up any cancer.

Keep us posted.

Where in FL do you go?

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

I am so sorry to hear this news. I think you have an amazing attitude. I am curious what your Florida doc will say. Can you consult via phone???? You might consider a consult with my doc here.

You are in my prayers. The sun will great you soon. Love, Mary Ann

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Ro

I too am sorry to hear of your latest news/results. Even though I haven't posted much I have been following the journey of those who do write in. This sisterhood has helped me understand and accept the developments in my life. Marianne's recurrence in the supra-clavicular nodes foreshadowed mine as did your 'observation' period and subsequent return to chemo.
Just to recap - my Dx was December 2009, the usual chemo and radiation from January to July 2010. CT scan in November 2010 showed a very small para-aortic node, no change in February 2011 but some growth and a second node in May. Then a CT scan of the thorax (never done before) showed a couple of small nodes in neck, needle biopsy in August and Dx of recurrence. Chem (same regimen so I would not lose eligibility for clinical trials) started last Friday. 3 sessions for sure then a CT scan and decisions to be taken following the results.
Did someone tell me that the cancer could well be there even if it doesn't show up on CT - Yes!! Will they treat until they can see or detect it - No!! My 'team' won't do PET scans either and I suspect for two reasons. #1 - I am in Canada and the protocol for uterine cancer doesn't allow for PET scans. But I could have one done privately for $3,000. The doctor said he wouldn't recommend it because PET scans have too many false positives and negatives and they know that there is something there already.Also Ca125 is not a marker for me at all - it has never been above 27. My gyn/onc says that although they are similar, UPSC and ovarian are still two different cancers and it would be easier to treat me if I had the latter.

I too am curious about the Florida doctor's opinion. It seems soon for another round of chemo. Would it be the same drugs and regimen? Einstein's definition of insanity comes to mind - doing the same thing and expecting different results. No matter what, the Florida sunshine should boost your spirits and make you more comfortable - I know that is always my reaction when I can escape south. Of course that is not possible while I am in treatment unless I want to gamble a lot because no none will give me any kind of travel insurance.

All of this to say that I feel a kinship with you and am sending every good vibe and wish your way.

Suze

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Sorry - posted on wrong page.

Cindy Bear
Posts: 560
Joined: Jul 2009

I am so glad you got to enjoy your summer and have had a chemo break. You are feeling well and have more energy, that has to be a good sign. I have not heard of cancer "film" but I have heard that cancer has to be a certain size to show up on cat scans..Keeping you in my thoughts and hoping for better news.
Hugs,
Cindy

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

Personally I would wait until a CT or PET scan verified what the CA125 MIGHT be indicating. Because CA125 is a notoriously unreliable indicator. Many many studies have shown that chemo can kill a 1-cm tumor as fast as a smaller tumor and there is no overall survival advantage to jumping the gun and treating on CA125 alone. & If your oncologist is talking about possible 'seeding' of tiny cancer cells, then a PET scan wouldn't be helpful. Although PET scans are something like 97% accurate at diagnosing cancer in a tumor larger than 1-cm, when a PET lights up anything smaller than that, the 'false positive' and 'false negative' percentages are inacceptably high when tested against a needle biopsy for confirmation.

You did so good, Ro, riding out your risng CA125 before without too much anxiety. I hope you can relax and enjoy your life and believe in your CT-scan and enjoy yourself until your next scan. Love you, Ro. We've traveled this journey together almost from the beginning.

I had labs and an endoscopic ultrasound today, but I am not ready yet to talk about the results. I may be in real trouble here, and I am just too tired to go there tonight. My oncologist is supposed to call tonight when he gets the results back on the fluid they removed. If this does turn out to be an 'end of days' liver failure scenario for me, I'm curious whether this Board wants the blow-by-blow, or whether that would be too haunting for some of you. We had a couple of posters on the OVC Board that posted almost until the very end, and that glimpse of how it might be was strangely comforting to me, horrible but so much less worse than my imagination. Anyhooooo, I hope I am just being dramatic tonight because I have been too uncomfortable to sleep the last few nights, and will feel silly when I start getting better to have worried. I came home with a script for some oxycodone so I know I will sleep tonight.

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

Linda you are right that we have traveled this journey together almost from the beginning. Your road has been much more difficult than mine has been. I feel so bad for you for all you have been through. You are such a warrior and I admire your fight and determination so much.

Sorry if you did not get good results from your endoscopic ultrasound today. I was hoping they could do the paracentesis today, too. I hope the diuretics are helping to make you more comfortable, and the fluid is not building up greater than the pills can handle.

I pray it is not "end of days liver failure" for you. You have shared so much of all your experiences with us, and we appreciate it. Whatever you feel you want to share, we will be happy to hear. We want to continue to offer support for you, as you have supported so many of us. We don't expect every post to be a good day for you, we know we all have bad days, too.

You definitely are not "silly" because you are worried. I know when you don't get sleep everything looks so bleak. I hope you get a good night sleep tonight and are more comfortable with your oxycodone.

You are my hero and I pray for peace and comfort for you. In peace and caring.

paris11
Posts: 132
Joined: Oct 2010

Sweet Girl,

All my thoughts and prayers are with you tonight.

Sleep well, my dear friend.

Connie

JoAnnDK
Posts: 276
Joined: Jun 2011

I am so sad that you are going through such a bad time. My heart aches for you....you really are our hero.

Hugs,
JOANN

HellieC
Posts: 428
Joined: Nov 2010

Ro - I am so sorry that you are going to have to dive in to treatment again. I hope and pray that they can knock this back again for you.

Linda - from the day I joined these boards, I have been impressed and humbled by your whole approach. I agree with Ro in that whatever you want to share, we will be happy to hear and, I hope, support you. I do hope that you are comfortable and remain so.

Ladies, I can't find the words to say what I feel for you, but you are both in my thoughts and prayers.

Helen

Kaleena's picture
Kaleena
Posts: 1016
Joined: Nov 2009

Ro & Linda:

Ro I am sorry to hear about possible chemo again. As Linda said, you are doing so well riding out your rising CA125 and with a good CT scan, let the anxiety go. I am praying for you that all will be good. (((Ro)))

Linda, I do not have the words that I wish to say to you other than you are always in my prayers and that no matter what you are going through, you are a real inspiration to others. You are one person who really knows what life is about and loves to share it. I think if you do not post, it would be more of a shock than not. I hope you get a restful sleep tonight and you start to feel comfortable again. (((Linda)))

Kathy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Ro and Linda....

Because I'm new to this board I've been hesitant to respond to some of these more emotional threads, lest my expressions of sympathy sound superficial, but I want you both to know that you are in my thoughts.

Cindy

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Sorry...duplicate

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

You have given hope and support to so many here. I don't really know what to say except that I am thinking of you and praying for you.
RO I am also thinking of you too. Wish I had the right words for both of you. Funny how people you meet on the internet become a part of our lives. I feel like I know a lot of the ladies on this board. And I care about what happens to each one.

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

I'm sending big hugs and prayers to both of you.

So sorry you're facing this...........keep up your faith!

Wish I had words to express what I'm feeling.....you are both such lovely ladies who have given so much!

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

Linda,

You remain a strong dose of inspiration, motivation and reality check-ness all rolled into one for us on this board...

Stay strong and let us be there for you..

Wishing you the best results possible. I hope you are getting some much needed rest this weekend...

Stay in touch...

Laurie

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

Linda-Just thank you. Please don't feel you need to edit for us too much- it is your warmth, intelligence and great honesty that got me into this blog in the beginning. I 'm sending my love and wishing you a good nights sleep- hope the oxycodone helps with your pain. Barb

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

Ro,

I was so sorry to hear about your rising CA125....but I hope it means absolutely nothing. It is hopeful that you are feeling good, less tired, more hair and much more energy. That is GOOD news!

Will be anxious to hear what your oncologist in Florida has to say.....You are always such an inspiration and I wish you only GOOD NEWS!!

Hugs, Karen

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Hi, Ro, Annie here. So sorry to hear your CA 125 is creeping up so soon after your chemo. Mine has behaved similarly as well, creeping up after stopping chemo. You asked about 'normal" CAT scan results. When I commented to my doctor recently 'well at least there is no evidence on scans (PET/CT) of organ involvement, just in my lymph nodes,' he seemed surprised at my naivety and indicated that if it is in my lymph nodes, then it is everywhere in my body and that 'scans don't show everything.' I was hesitant to relate this info as we all are so excited with 'clean' scans. I guess that is why we are considered NED (No Evidence of Disease) rather than 'in remission.' Even back in January when I had clean PET/CT and normal CA 125, my gyn onc noted that the cancer was in no way 'gone' just not evident - I just chose not to deal with this info at that time.

Unfortunately, our papillary serous cancer has a tendency to be more like a 'film spreading inside' than forming solid tumors. My doctor is leaving chemo up to me noting he is hesitant to start without symptoms if the patient is basically feeling well and enjoying quality of life. I have an appt. in a few weeks to consult with another gyn onc that will hopefully elicit more info on managing this disease. Likewise, I will be interested to hear what your Florida doctor has to say.

My thoughts and prayers are with you to continue to feel well and enjoy life.
Annie

sleem
Posts: 92
Joined: Feb 2010

Thank you for adding info about film spreading & nodes. This is new term for me even with all the research I've done.

Kaleena's picture
Kaleena
Posts: 1016
Joined: Nov 2009

Funny you bring this up, Annie. All throughout my treatment from the get go my scans were negative. I had a laparscopy and an internal ultrasound prior to my original hysterectomy. The only thing they saw was severe endometriosis (not cancer) and that my uterus was tilted. After hyterectomy, they found the cancer so I had staging surgery. All was negative. From there I have had many CT scans. In 2009, I was told I had a recurrence. I had a CT scan, PET/CT and a MRI within weeks of each other because they were all negative. But I did have a positive biopsy. When I had surgery, everything was negative. However, they removed lymph nodes and one node tested positive for microscopic cells.

I had originally pushed my doctors in finding something due to pain that I thought was not normal. I even had a colonoscopy which was good. For my recurrence, I had been having pain for over a year and although it was on a CT scan from day 1, it never changed. In fact, the last scan it had reduced in size.

Like you said, my doctor only said that it is treatable.

Thanks for posting this.

Kathy

Bluebird Bush
Posts: 28
Joined: May 2011

Ro, I am so sorry about this latest development. Even though the CA125 has risen I take it that it is heartening that the CT scan report appears to be good. I hope the "stable" means no evidence of anything large enough to appear on the scan. It just seems like it would be easier for the chemo to kill off smaller clusters of cells.

Your trip out west sounds like it was really great. Hope your time in Florida will be good too, and lots of fresh Florida salt air will feel terrific. Please keep us posted, Geni

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

Dear Ro,

You are in my heart; the recurrances are so hard. You have been brave and strong. My Doc doesn't really like PET scans; he prefers the pictures he gets with CAT scans. My Gynonc prefers PET scans. I have had both close together and really can't tell the difference in diagnosis. My Doc treated me years ago for breast cancer and he believes in hitting the cells when they are seeding. He also told me no one can tell you how long you have to live.

I hope you enjoy this trip. I am have surgery Nov 2 in which they "paste" the lining of my lungs together. I am doing well after the pulmonary embolus.

You show the world and have a great trip. Our Love is lifting you up!

Diane

JoAnnDK
Posts: 276
Joined: Jun 2011

.....from the beginning that CT scans only show growths of a certain size. One of my best friends is the radiologist who did my first CT scan and she told me this just to warn me against euphoria because it was clean. She was right. So I try to temper my joy when I have a "clean" CT scan and a good exam. My CA 125 has never been elevated even the day of surgery. There is just not much else anyone can do as far as diagnosis.

I have never heard this cancer described as a "film" spreading inside us. Will have to learn more about that.

JoAnn

california_artist
Posts: 850
Joined: Jan 2009

size--1 cm--it's the PET that has these limitations.

That is one reason why it's relatively easy to have a CT and can be very difficult to get a PET, in addition to the cost of the PET being higher than the CT it is not always accurate at detecting smaller size tumors.

CT's detect turmors at sizes well below the 1cm size.

JoAnnDK
Posts: 276
Joined: Jun 2011

The size of the smallest tumor picked up by CT varies with the machine...later models do 1/2 cm cuts instead of 1 cm cuts, but tumors of up to a centimeter can be missed if they happen to fall between the cuts.

CT scan can miss a lot of pelvic pathology. If your pelvis is a primary site, you might want to use ultrasound scans as well, and MRI if there are any suspicious lesions.

PET scans will highlight a high grade, active metabolizing tumor that is 7mm or larger. Low grade tumors will not pick up enough radioisotope to distinguish themselves against background, nor will very small tumors.

——from a radiology site

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

I wondered how you were doing after your pulmony embolus. That was serious stuff. I am glad you are doing well. Sorry to hear you are going to have surgery to "paste" the lining of your lungs together. Is this to keep the fluid from building up? I hope that all goes well for you with the surgery. You remain in my prayers. In peace and caring.

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

Sending you healing thoughts...mind, body and soul....

So much uncertainty, worry and stress....sorry you are having to live thru this tough time.

Keep us posted on what the Florida docs have to say...why can't they conference with each other....

Keeping you close in thoughts and prayers...

Laurie

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

sisters,

i'm so sorry you're having to go through all this worry and angst, though i do appreciate you both posting. you've both been inspirational to me, and i can't say enough about how much that means to me.

my doctor compared upsc to parmesan cheese the way it spreads..been hard to eat parmesan after that. i had half a dozen ct scans and ultrasounds before i had a d&c and was diagnosed, and nothing showed up expect a couple of fibroids and a cyst on my ovary. i don't know what to make of pet vs ct. i do know that it's harder for my doctor to get a pet scan authorized than a ct scan.

in any case, i'm thinking of you both and holding you close to my heart. sometimes there's unexpected good news, too.

sisterhood and hugs,
maggie

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

Thank you so much for your encouragement and comments. They mean so much. I do apprecaite all the support that everyone gives.

I am of the mind-set that the CA 125 is "just a number" and I continue to enjoy each day. Will make my appointment when we get to Florida and find out what "the plan" will be. My onocologist here did not fax my records to the Florida doctor. He only sent it to my primary care physician. I was glad that others have heard of "the film" and how the cancer can spread. Not that I like it, but glad others have heard it from their doctors.

My doctor in Florida also believes in quality of life and not starting chemo and depleting the bodies defenses before you really need to. I hope I hear those same thoughts again.

Keeping you all in my prayers. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Gosh, I can't begin to express my admiration for you women! I don't have the words, but please know that you're all in my heart and prayers - and I hope you will continue to post to let us know of your health status, and mostly to seek our support and comfort, which I know we all give with love.

Suzanne

Cynthia Rose's picture
Cynthia Rose
Posts: 35
Joined: Apr 2011

How are you doing? My Mom had her CA 125 done 2 Months Ago And It was 66, Now 2 months later It is 192. Her scan Is clear! Its hard not to worry. The Dr. said it could be her cyst causing the number to rise.Its a sensitive test.

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