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Does it get easier to go for your doctor appts?

NoTimeForCancer
Posts: 440
Joined: Mar 2013

Ladies,

I am hoping you, and anyone from any board can chime in, does going to the doctor ever get easier?  I am only in about 6 months of the monitoring now and get very anxious when I have to go see the surgeon for my follow ups.  I am not talking about the physical exam, I am talking about the unknown.

My next visit is Tuesday, and while I feel fantastic, I wait for the CA125 to come back and get all wound up.  Since this is just the first year after diagnosis, surgery and all the treatment, there are a lot of "anniversaries" for me.  You all know what I mean but I was hoping some of you can share your thoughts. 

Thanks in advance and thank you ALL for all the help you don't even know you give!

 

Kaleena's picture
Kaleena
Posts: 1070
Joined: Nov 2009

Yes and no.   I was diagnosed in 2005 and since then I still go every 6 months for check-ups.    I only got real nervous when for about two years they stopped doing the scans and I felt like I was having symptoms.    I always get nervous when I get a new doctor for various reasons (retired, moved,) so then the nerves take over again.   Although it is not bad, it is always in the back of your mind.   

 

You just have to go with it.    Your feelings change all the time.  Congrats on another "anniversary" six months!.

 

Kathy

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

From April to August 2011 I was at the drs a lot during surgery and then follow up chemo treatments.  Then I started the follow up visits with CT scans and CA125 test.  Sep, Nov, Dec 2011 then it started every 3 months, Mar, Jun, Oct 2012 and Jan, Apr 2013.  I go for another follow on visit today.  I am worried a bit but I already know that my CA125 will be higher because I am very sick with sever sinus infection and cold.  I am taking some heavy duty antibiotic so that will probably throw my system off some.  My CA is not a good indicator but at least it is something.  I started the journey at 15 before surgery. After surgery it went to 169 and slowly came down from there to now it averages around 12-13.  I still worry but if I have any pains anywhere she will run test (CT scan and others)  But in Jan my Pap she did was clean and I have not had any problems except this cold that will not get better.  So while I worry that something will show up I do not let it control me.  I live my life the best way that I can and if something shows up again I will deal with it and try to keep a positive attitude. trish

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I had my CA125 go up a bit for the first time at last appt (January '13).  We attributed it to fluid spot on my lung and I was fighting allergies and a cold.  Great that you can already read into what is a possiblity at this next appt.  Still tends to bring us back down until the next appt.  

My oncologist has always told me, THE MAN UPSTAIRS IS IN CONTROL, NO MATTER HOW MUCH WE TRY TO CHANGE AND THINK INTO OR SITUATION!!

Good luck on your appt...do come back and let us know the GOOD NEWS~~~~

 

Sending you lots of positive vibes~~~~

Jan

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Funny that you should post as tomorrow I have my 6-month check.  FYI I completed treatments 4 years ago and I'd agree with others, comes and goes with worry.  Cancer is more about the "unknowns" and we all know it's a huge indicator of life and living and being in control.  We loose so much of that after a diagnosis!! CANCER SUCKS

So yes today I'm a bit more apprehensive and thinking more about it, but I've total trust in my doc and his staff which calms me.  As with all my prior appts, I do lots of mind over matter thinking and keep busy.  

Wish I could make it all go away and our lives would be back to the "old" normal, but this is reality.  So...we all pick ourselves up and keep on moving forward.  Try to do some deep breathing exercises and visual the doc telling you the CA125 is same as last and your overall physical exam is excellent.  As my oncologist always tells me after a good exam...AS USUAL I SIMPLY CANNOT FIND ANYTHING WRONG WITH YOU....SO GET OUT OF HERE AND CONTINUE TO ENJOY LIFE!!!  At least you know we all have those "uneasy" thoughts prior to our doc appts.

WE ARE A STATISTIC OF ONE!!!...on wall in my oncologist's office~

Best to you and I wish you GREAT RESULTS FROM THE APPT....

Jan

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

My gyn onc dr is great and she knows that I worry about it but she told me that unless it goes up double digits from the last not to worry aobut a whole digit or the little percents like the first time it went up from a 12.1 to a 12.3, she said she did not want to post it because she knew that I would freak out and I did but that is when she told me the double digit thing.  She also explained that if anything is going on in the abdominal area that it could affect the number.  So here I am on a very stronger antibiotic, which has caused some diarreah (?) and my food intake is way down to just mainly hot and sour soup from chinese place every night at least for the last month because of being sick and that is the only thing that sounds good, I expect the number to be around 13.4 this time around.  But when she posts the results I will let ya'll n=knew what it is. trish

NoTimeForCancer
Posts: 440
Joined: Mar 2013

YOU LADIES are the only ones who can tell me what is what and you never disappoint.

While the CA125 is just a number, it is the only thing I have besides what my gyn onc would find during a pelvic exam.  Let me quickly add, I had papilary serous (sp?!) was at stage 1A, he took a ton of samples - all negative, and the chemo/radiation/chemo was more preventative since I had the bad type. 

The CT after treatment ended showed nothing and CA125 was 8. In April it dropped to 5 and now it is up to 9. Needless to say, I freaked but I talked to the nurse and she said not to worry about that. Everything you say really helps me to calm down.  I am way to stressed out over this.  

Again, you ladies truly ROCK! 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

We must remind ourselves this is only a number...we shouldn't create our livelihood around this one simple number.  Heck it sounds good so why don't I always follow what I post...darn it!  Just part of the stressers with our cancer journey, another doc appt.  I want my old life back...lol~

Going up one digit isn't a big deal, heck mine doubled but to start was a whopping 4...had some inflammation going on.  

Good luck tomorrow and lets come back here and compare notes as my doc appt is tomorrow late afternoon.....breathe in deep and let 'er rip!!  Show the cancer who's boss....

 Hugs and good luck~

Jan

ConnieSW's picture
ConnieSW
Posts: 573
Joined: Jun 2012

I'll cross my fingers that both your appointments go well tomorrow.

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

It rose again but then I was expecting it to.  In previous message I said that I thought it would be around 13.4.  My appointment went good, the dr was pleased and the exam did not turn up anything new.  She said she thought everything was OK and would move me to every four months instead of three after I had another round of CT scans just to make sure.  So I will get the CT scan Oct 4 then see her again Oct 7.  The CA125 results have been posted to My Chart and drum roll please 13.3.  I was just about right on the number.  Wishing you all success. trish

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You know your body and sure undestand a bit more about the CA125 and how it fluctuates.  Good for you!

You have MMMT as well as I do...correct?  I was diagnosed Jan '09, stage 3C and if memory is correct you were diagnosed in '11?  Mine was found in 1 lymph node (pelvic area) and had the chemo (carbo/taxol) and sandwiched 33 external radiation.

Congrats on appt well done!!!

Jan

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

MMMT stage 3c in 1 lymph node.  Although my dr did not give me any radiation saving it for later if needed.  Just had 6 rounds of carbo/taxol in 2011.  So far so good.  Aug 22 is my 2 year mark after last treatment.  I have to admit I was going by everyone's post on here that made me ask if I could go to 6 months since I am fixin to come up on the 2 year mark.  But my dr said no until she sees the CT scan in Oct and then she said she would compromise by letting me go to 4 months.  At least it is better than every 3 but I will wait and see what the results are.

 

So you go to the dr today and let us know what they say.  Wishing you good luck today. trish

NoTimeForCancer
Posts: 440
Joined: Mar 2013

Ladies,

Yes, I always feel better after seeing my gyn onc.  He said if they took two viles of blood, one vile could be a "5" and the other could be a "9".  Unless it keeps climbing, it is not a worry. 

He did wonder if it was just scar tissue damaged by the radiation and decided to take a biopsy.  Think colposcopy.  Ugh...I had to come home and pour myself a little wine.  Thankfully I was able to go home after the appointment and not back to work.  Geez, I really hate the way this feels.  Oh well.

He did say only to see him 3 times a year and go back to my regular gyn for an annual visit which was interesting.  I owe her a huge HUG anyways!  If she didn't say "Let's find out what is going on" and schedule me for the D&C I don't know what I would be facing.

Look forward to hearing from "Jazzy" but again, THANK YOU ladies.  You are so awesome, you have helped me like you can't imagine.

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Well it was a good appt.  Only thing I was concerned about is the CA125 has gone up a bit more since last appt.....from 11 to 17 (generally around 6 or 7).  Note the last appt in January we did a CT scan which was fine except for a "1 cm small ill-defined ground glass infiltrate on the upper lobe, likely inflammation". Doc showed me today how small it was and said it's nothing for concern.  We spoke of the  higher marker and he told me it will move around a bit especially if sick or have any inflammation going on in your body.  I've been having lower back issues due to my bulging disk as I've reinjured it, so have lots of inflammation in pelvic/stomach area, and a new diagnosis of allergies and they're really bad.  Plus let me add I'm wondering how stress reacts to the marker? I've been under some huge stress with family issues and hubbie's business.

I have lots of comfort with my doc so have no concerns with what he tells me.  He must have felt I was concerned as mentioned an option to do a chest xray in 2 weeks and another CA125 in 3 months and then for my next 6-month checkup.  He's not one to jump to zillions of tests, as likes more the wait and see attitude....same way I think.

Know a few of you have had issues with up/down CA125 as love to hear your stories.  As doc told me, don't live with concern over this number as I could take this number in 2 weeks and it might be back down....does fluctuate and yes under the radar for having concerns.

That's my story and happy to say I'm feeling good as trying to not rely on that damn number...must practice what I preach!!!  Any stories of their journey with the ups/downs with their marker??

Hugs to all the warriors!

Jan 

 

 

Double Whammy's picture
Double Whammy
Posts: 2277
Joined: Jun 2010

I don't have that test because I had endometriod adenocarcinoma, early stage low grade.  The first two years I was pretty nervous whenever I had an appointment, tho. It got much much better for me after 2 years when the appointments were changed to every 6 months.   It's now been 3 years for me and I'm feeling so confident that I  tried to get out of any more followups.  I said "Really?  Do you really see recurrences of this type of cance after this long?".  He said yes, but very rare, and the longer it gets, the lower the odds.   I was hoping he'd say it was up to me to continue or not.  I agreed to keep showing up until I hit the 5 year mark. 

I've often thought about you ladies with the Type 2 endo cancers and your tumor marker tests.  I imagine it is encouraging to get good results, but it also must be incredibly nerve wracking to see even the slightest increase in levels.  My good friend who has UPSC and has had a recurrence that was picked up by elevated CA125.  In hindsight, she recognized that she actually had vague symptoms - abdominal fullness, lack of appetite.  Her recurrence was considered regional and her levels dropped to single digits after another unslaught of chemo.  That was a year ago and they still remain in the single digits. 

Wishing you all to remain cancer free.

Suzanne 

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

Before cancer, I did not tune into my own body but cancer has changed that.  Not to say I worry more but I do pay closer attention to when something feels off.  Did not use to do that. Glad to know that Dr. has a plan and is not concerned, wait and see attitude.  Like you said it is just a number and it goes up and down depending on what’s going on in our bodies at the time. 

I am glad that most drs do tell their patients about this but nice to come here for reassurance when needed.  My dr told me up front that the number will swing when there is something going on in the pelvic/stomach area and not to worry about it.  That is so easier said than done, I know, but I do not worry about it so much anymore.  

Wishing you the best and no worries and prayers for all the warriors. trish

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Oh my yes the number is frustrating, but one must try to look at it as a number.....sorta like my employer looked at me -- as a number!! lol! have to laugh or at times I'd cry.

Had a nice lunch with some friends whom I meet with once per month -- all were in my original cancer survivor group.  We all exchanged stories of our lives and can'[t help but to think how much each of us must endure to have a good quality of life.  If I'd go around the table to each one, they all have some health side affects from treatments or basically getting older.  As I always tell myself, the alternative is much worse!!

CT of lungs will be next Tues so happy to have that off my to-do list and onto other goodies in life!!

So appreciate all the wonderful support from all the worriers on here....you gals are simply amazing!!!Kiss

Jan

 

 

NoTimeForCancer
Posts: 440
Joined: Mar 2013

Ladies, I wanted to share some good news with all you warriors.  I expected to hear something after two weeks but got a great call today for the gyn onc office.  The biopsy is benign!  I guess it was just the scar damaged by the radiation.  He didn't think it was really anything but wanted to make sure, and I am glad he did. 

Stay strong lovely ladies!  and thank you.

Ro10's picture
Ro10
Posts: 1402
Joined: Jan 2009

I am so glad it was just scar tissue.  Glad you got the good news early.  In peace and caring.

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