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

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.

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?

TeddyandBears_Mom said:

Doctor's Roles

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

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 said:

Tikvah - Please don't give up!

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?

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. 

NoTimeForCancer said:

Well, I am not married and

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. 

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

TeddyandBears_Mom said:

you are an inspiration...

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

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

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

Editgrl said:

Very interesting

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.

Thinking of you! Glad to see your post.

molimoli said:

A bunch of ladies sounding like a bunch of ladies.lol

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

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

TeddyandBears_Mom said:

Humor

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

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.