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CAT Scans and CA125 testing for follow-ups for advanced cancer

Tikvah
Posts: 24
Joined: Apr 2014

Hi,

I just elected not to have a CAT scan.

I'm 1-1/2 years from my radical hysterectomy (stage 3 -- spread to nodes, 93% through uterine wall, positive washings)

and 1 year since I finished treatment.  Often, my oncologist forgets to order CA-125 and he said that CAT scans do not really change overall prognosis, that often they will pick up something else that requires follow-up, fear, and turns out to be nothing.

I elected not to have a follow-up CAT scan.  Got no results of my blood work (outside of CBC, which is practically on the spot), so I think he forgot, again, to order CA-125.

Do you have follow-up CAT scans?

I'm unsure I made the right choice, sort of feel like I'm giving up or just letting fate take its course.  Don't know.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

CAT scans and CA125 monitoring are TOOLS.  I think from what I have read from the other ladies, even when their CA125s rise they aren't automatically whisked off for a CAT scan.  A cold or slight infection can make the CA125 pop up a little little, but again, it is just a tool in the toolbox. 

I see women on here getting CAT scans quite a bit.  I think that is all over the board.  Some get them and others don't.

I asked my doctors, "What am I looking for?"  I was told nausea, bloating, diarrhea.  Obviously bleeding is also an immediate concern, but I still get some on my dialator after almost 3 years, and I know it is because of that damg internal radiation. 

I would be concerned with a doctor who "forgets" to order part of a test.  I hate getting poked so they better be sticking me for a good reason. I would recommend verifying with the onc's office before I got a blood draw again.  For some women the CA125 is a good indicator.

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

I do not get a CA-125.  I haven't had one for several years.  Mine was never an indicator.   With regard to Scans, only recently I have been getting a lot of them, mainly PET scans.   It also depends on insurance companies.   I was denied a PEt but had to have a repeat Ct first then get a PEt.   Makes no sense.

I went several years without get scanned.   I became nervous about it because really why the need to see my oncologist.  He asks a few questions gives you and internal and sends you off.   My blood work always was within normal limits and even when it wasn't no one was concerned.   It is really confusing.

I am only getting scanned now because I have a 6 cm mass which is mild to moderately PET active.   If you are not having any problems like that then I probably wouldn't get them either.   Prior to that, I was only getting them once a year after my initial treatment.

Kathy

(Diagnosed Stage 3a, Grade 2 endometrial adenocarcinoma)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Kaleena, I'm confused on the roles. I'll be asking my GYN-ONC when I see him but thought I would throw this at you now....

I thought the role of the GYN-ONC is to do the exams, surgery and determine the course(s) of treatment. Then, the local Oncologist administers the chemo, etc.  So, based on what you are saying, the local Oncolgist does internal exams too? Good grief.  I probably sound really dumb but I just don't get it.  Appreciate any insight you can provide. Cindi

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

TeddyandBears:

My gyn-onc does everything.  I didn't have a separate oncologist for chemo.   I have a gyne/oncologist (who does the work as a gynecologist and oncologist)(I had my chemo through him also), and my radiation/oncologist (he performed the radiation and follow-ups)

Also, my gyne/onc is also a surgeon.

Hope I wasn't too confusing!  lol

Kathy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

You are not confusing at all!  Thanks for the response. I suspect it is my situation that is different. Since I am 80 miles from Moffitt - where my surgery will be done; there is a local Oncologist  that will partner with my surgeon to do the chemo. It is much more convenient for me. I just will make sure we all have an understanding of who will do what to me. I'm a bit particular when it comes to who I will put my feet in the stirrups for!  ha!  Thanks again Kaleena.  Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'm finding the different approaches as far as which doctor does what very interesting.  My gyn/oncologist, who did the surgery, told me that I would have a team of doctors coordinating my treatment.  He for surgical, a medical oncologist, and a radiation oncologist.  I am also investigating whether my HMO has an integrative oncologist on staff.  I know there is one within another health care system locally who I would be willing to pay for out of pocket if my HMO does not have that option.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Thinking of you! Glad to see your post.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I think.  I am walking 20+ minutes at least twice a day and could do more, but I am trying to be good and not push it.  I have been out of the house to lunch, grocery shopping, a trip out to the barn. I was taking Norco only at night occasionally for pain once I got out of the hospital and haven't taken it for the last few nights at all.  Finally, that gas has completely dissipated and I am almost back to my normal sleeping pattern, except for having to get up at night to pee.  

I had my BF bring my bike in and set it up on the trainer and will try to get on it sometime this week.  I do have a swollen tummy which I guess takes quite a while to go down, but no pain in the incisions.  However, bike shorts are out of the question for the time being lol. The worst thing has been a water blister the size of Chicago which is now diminishing.  

I am trying to keep myself hydrated and to gain back the weight I lost pre/post surgery with the clear iquid diet.  The morning of the surgery I was below 90 pounds!  My fighting weight is 95-96. I think I have the metabolism of a hummingbird, so today I am planning on having something in my piehole almost every waking moment.  I don't own a scale, but I can tell by the way my body looks that I still have several pounds I need to gain.  Not the usual problem, I know, but there it is.

You will sail through your surgery, Cindi.  Make sure you take some sort of lipbalm.  The hospital was very dry.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

I have zero experience with this at this time. But, it sure seems like a second opinion on your care is needed. Is it your GYN-Oncologist that is forgetting? Or, a local Oncologist? My local oncologist has ordered a CA125 for me two times already and I haven't even had my surgery yet. He is comparing it before and will do so after as well. I had a D&C and polyps removed which got me on this cancer path. And, my introduction to the local Oncologist. You answered one of my post and I feel like we are all in this together! Sooo, I wanted to reach out to you even though I don't have information to offer up.  :-( 

 

No Time for Cancer - You said something that enlightened me.... After 3 years you STILL have to use the dialator? Does that mean that once we have that internal radiation we will always be scarred and have to do that?

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

teddyandBears:

It was my understanding that you either had to use the dilator or if you were sexually active (at least 3 times a week) then you didn't need to use the dilator.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

I'm sure my husband will be HAPPY to help out!  Laughing  Let's not share that information though.  lol lol lol

AWK
Posts: 364
Joined: Mar 2013

When the radiation nurse went through the whole talk with me about scarring etc due to the brachytherapy and talked about the dilutator she ended it with - there is an easier way to go - sex with your husband at least three times per week.  I was beet red but managed to tell her that I was pretty sure she just became his favorite person on my medical team.  We still laugh about it.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Anne, great story. I think we have to try and find humor whenever we can. Life is just too precious to be sad.

While I know it is unrealistic to expect all good days, I want to do whatever I can to maintain my "normal".

Thanks for sharing.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Well, I am not married and telling a guy you had uterine cancer is a real downer :)  Internal radiation causes your vagina to shrink.  I asked the doctor HOW LONG do I have to use the dialator and was told, "for the rest of your life".  Ok then. 

It breaks my heart to hear women say that internal exams leave them having to be practically peeled off the ceiling because of the pain.  The dialator isn't so bad.  It makes for HYSTERICAL experiences at the TSA screening at the airport.  :)  Yes, I have had them stop and look.  Fortunately, I am NOT embarrassed having battle this beast and any chance I get to talk about it, even to the TSA screeners - I will!

To all the newbies - it took me awhile to get here in my mind.  Please don't get too far ahead of yourself on things.  Take things a step at a time and ask all the questions you want.  A dear, sweet, lovely lady, Jan, posted the need to use the dialator everyday.  She was a blessing to all of us who met her through this site, and I would agree with her. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

I asked my OBG/ONC's nurse why the heck GYNs don't use some kind of numbing cream for women that have pain. She said that it is too high up to help. I think I will continue to ask that question because pain management in this day and age is available. We should not have to hurt. When I had my bladder camera, the doc used the cream in my urethra. I just don't see the difference. Seems like the DISTANCE to the goal would be similar!  Sorry for the tangent!

Anyway... I appreciate your candor and input and always look forward to your responses. As I'm sure you know... it is hard not to skip ahead to the next steps. What I find very helpful is the advance on information so that I have a better starting place on what to ask the doctor.

OK, so my goal is to reach my 85th birthday. Using a dialator every day is a small price to pay in the overall scheme of things.

Thanks again for your continuous support.

Cindi

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

Cindi:

Here's another thing - if you use any types of creams, KY jellies, etc., and you still get PAP smears (I got them each time until last year with my new doctor), sometimes you can get an abnormal reading on PAPs if you use jellies a day or two before being tested.

Also, just to let you know, I decided not to use the dilator after about a year.   The big thing about that is that scarring or thickening can occur by the vaginal cuff sometimes making it difficult to see if anything is developing there.   I just took my chances so I haven't used one since 2007. 

Kathy

molimoli
Posts: 514
Joined: Aug 2014

Ladies, today you are all informants,consolants, advisers and a raunchy bunch to boot. I feel like I am in a room full of buddies.Love it ,love the thought of you all out there, love the comradeship.

Nuff nuff love my sisters with pained bodies, we'll be each other's  tylenol , (raunchy ole bunch)

Renewed health -my wish for all.

                                            Moli

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Moli, So glad you replied! Being new to this board, I wasn't sure how well my humor would be received.

What I know for myself.... I want to maintain my positive approach to life. I think that is what scares me the most... Possibly losing my even keeled personality and appreciation for all living things. I do much better when I smile and push forward than when I give into the fears of the unknown.

To all ladies on the board - Once again... thanks for being here (and sorry!) ... And for letting all of us be who we are and for being able to ask the questions. I think we have to leave embarrasement out of this and get on with things. Easier said than done for me but I'm trying hard to do that. The discussions on the most personal levels is very helpful! No Time for Cancer-I hope I get to the level you are on that front!

Love to all!  Cindi

molimoli
Posts: 514
Joined: Aug 2014

Cindy my humourous sister, my posts are usually about living today as if tomorrow is a pipe dream ,be yourself always  bring the laughter forward  all the time,everytime, we all can do with it. It's not written any where that cancer 'must' take fun and laughter out of our lives,Then Cancer will have won even before it fulfills it's nasty plan for us, plans we are fighting daily ,we will fight with determination and humor,raunchy or not we are big girls , and if a few guys are on ,then God help them, if they read the postings here they already know much more than we would have disclosed ,willingly. It's a good thing. Any shame and inhibitions I had was left on the operating room table, with all the other parts they took from me , leaving me with this room with all the furnitures missing, and I am going to worry about a joke, Naah!!

Keep it coming,Nuff love.

molimoli
Posts: 514
Joined: Aug 2014

We must never succumb to fears of the unknown .It's a waste of preious time that we can hardly afford. I  'got' it ,hope all of you will get it in a hurry,Fear kills off fighting spirit.

I've been there ,done that, never again, life's happenings can't frighten me again.I lost too much letting it. I have fast tracked my catching up and there is no stopping me. I am pumped.

                                                                                From me to you all with your best interest in mind.. Moli.

 

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

Bravo Moli!   My kind of gal!  My husband and I learned early in this that you must continue to laugh at stuff.  If not it could drive you crazy.

Get this mental image (i am at an appointment to see about a recurrence and this occurs).  My radiologist oncologist does an internal to "feel" the mass, then the gyne/onc does the same thing.  Then a group of medical students come in to my room and they let one of them do an internal.  So here I am laying on the table with my legs apart, my husband beside me in a room with my radiologist oncologist, my gyne/oncologist and a group of medical students.   I looked at my husband and said - Really?   And we have to pay them to do this?   I don't even think anyone will ever believe this - lol   And to boot, the gyne onc said he couldn't operate because it would be too long a surgery and he wouldn't do it and he just got up and left without even discuss chemo or anything, the radiation oncologist said if he radiates I couldn't have any more radiation and eventually it could be fatal.

Believe it or not, my husband and I left and looked at each other and said this is so messed up.  But by this time, we had our plan in place that if it doesn't seem right, feel right, then get up and leave.   I went to another provider in a totally different state with great success.  That was over fives years ago.

Thanks Moli, for all the encouragement you give me and to the ladies (and gentlemen) on this board!

Kathy

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

Kathy, I can't imagine what you went through! Incredible! 

Tikvah, it seems that we uterine cancer patients have similar treatment, but not always. I did not have a Ca-125 prior to my hysterectomy, as my uterine biopsy did not indicate that I had UPSC, a grade 3 cancer ( i.e., aggressive).  it is not uncommon for UPSC not to show up on a biopsy, but after surgery and after analysis of the tissue does it raise it's ugly head.  I have 2 oncologists- my gynecologic oncologist in Melbourne, FL, who is located 30 miles from my home.  He does my internal exams and has been the "leader" in my treatment which also included 6 rounds of Taxol and Carboplatin. I also have a local oncologist who provided the chemo. He never does internal exams and like my other oncologist, orders the CA-125 test. Since my stage 3a diagnosis 1 year and 9 months ago, I have had 1 Pet scan and 2 Cat scans- all clear. My gyn onc told me that Cat Scans do not provide a survival benefit as symptoms occur about 3 to 4 weeks after a Cat scan reveals a recurrence. Cat scans produce a lot of radiation exposure, but I can tell you that I am more likely to die from UPSC than cancer caused by too many Cat Scans. 

Cindi, you mentioned that you go to Moffitt. What town do you live in if you don't mind me asking? I live in FL as well and have been to Moffitt, too ( for a 3rd opinion).

Wishing you all peace in your lives,

Cathy

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

Cathy,

I guess it comes with the territory.  We should all right a book (comedy trama - lol)     They found my cancer too after my hysterectomy so I didn't have a CA-125 either.  After my staging surgery which was a month later, it was a 21.

You are right about the CAT scans.   They do have more radiation exposure but insurance companies don't allow PET scans as frequently.   Even if your oncologist orders it they can deny it as it not being "medicallly necessary" - which is the pits.

Hoping you are having a fantastic day!

Kathy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Hey Cathy, I live in Inverness.  About 75 or so miles North of Tampa.

I have to say, I highly recommend Moffitt to anyone looking for cancer care. 

My doctor is the best. He is funny, humble and down to earth. I have never been so comfortable with a doctor in my life. And he knows his stuff.

I'll be posting a new thread in a few minutes on my experience.

Take care,

Cindi

molimoli
Posts: 514
Joined: Aug 2014

I am paying  back Kathy, just paying back for all the lifting you  'guys' did  when I happened by crawling on all fours with my grief ridden, broken spirit and pained body.With your support I stayed the course and found my lost self again. Thank you ,Thank you ,Thank God for you my sisters ,one and all.  Nuff love  Moli.

 

Kathy ,Your post cracked me up,I promise I will wipe the image out of my mind's eyes when I am done laughing,  You must have been in that god- awful position just thinking ,here comes the butcher, the baker ,the candle stick maker and my poor  husband can't do a darn thing about the trespassing.  Oh,Cancer you sh..ty bugger ,you have humbled us, women and men alike.

I hope we live to see the last of this beast,if even for the next generation.

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

I know what you mean about this site Moli.   Sometimes I am really down and I tend to stay away from posting.  Other times I will look on and will get a new look on things.   When I feel I can't talk to anyone else, this is the best place to be.   I know I don't like to bother my husband or family members when I tell them I don't feel good.   They don't understand and when you look good the the doctor says your are fine, they think you are just being over dramatic.   So then we have to laugh through the tears and keep on going.

Kathy

molimoli
Posts: 514
Joined: Aug 2014

I understand Kathy my sister,but hope and pray that your up days will out-weigh your down ones ,you have been through a lot and still manage to encourage, share  and educate,daunting task to pull off but you do it well, Thank you.

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

Each and everyone of you lift my spirits with your wisdom, strength, advice, stories and sense of humor. I have often wondered how I would've put one foot in front of the other without the support of CSN and this group. 

Warm Wishes,

Cathy

molimoli
Posts: 514
Joined: Aug 2014

The laughter balances the tears so we don't tip over ,every minute ,every hour,every day.

We love you Cathy thanks for the warm wishes.

Moli

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

I wish they would put a like button on this site.   Sometimes I don't have the words but like what people are saying.

Love you girls!   May you all smile and laugh today.

Kathy

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