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Anxiety about my first "3 month" followup

Virgil90012's picture
Virgil90012
Posts: 36
Joined: Feb 2015

i am new to the Board but I have been reading many of the comments from everyone and i see all the support.  I am hoping for some advice.  I was diagnosed with stage 1a grade 2 endometrial adenocarcinoma, endometrioid in late October.  The treatment was total abdominal hysterectomy and bilateral salping-oophrorectomies with no radiation or chemo.  Because of scheduling issues, my first follow-up appointment is 5 months after my surgery which is tomorrow.  I am apprehensive even though I know it will probably turn out fine.  (I took a CA125 blood test in preparation for my appointment and my result was 7.4 which is down from my CA125 test prior to surgery which at that time was 28.2).  

My question is how do I stop being anxious in seeing my Gyne Oncologist?  I know i will be seeing him many times in the next few years and I am not sure I can deal with the anxieties.  How do you all handle it?

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i wish I had a magic fix for you.  I still get anxious every time I go to my gyn-onc and my regular oncologist, and i think it is a normal reaction to something new and out of the ordinary.  With a CA125 as low as yours you are in real good shape and should have nothing to worry about, easy to say but still we worry.  I do try to keep busy the day before to keep my mind off it.  Visiting with friends on the phone is also good for me.  Blessings, Lou Ann

Virgil90012's picture
Virgil90012
Posts: 36
Joined: Feb 2015

Thank you so much for your remarks.  It is very good to know that I am not crazy and others have the same feelings.  I used to not worry about seeing doctors but those days seem so long ago.  

bluesmama
Posts: 124
Joined: Aug 2014

It took me about 4 months to stop thinking about cancer every day since my hysterectomy. Two weeks before my first 6 month check-in, it all started again. A few tears from my eyes. Some anxiety. Etc. I've decided it's all par for the course. Best advice I got was to not be so hard on myself and get on with life. As soon as the pap smear and small talk was over, I was running out of there. My doctor is even letting me see my normal gyno for the next 6 month pap smear. I only need to go back to him yearly for my cat scan. :)

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and hope for the best every three months when I go on line to get the results of my CA-125.  Same goes when I find out the results of a CAT scan. Fortunately, you have a low stage so try to take some comfort in that. It is simply not easy to cope with the unknown and I experience much the same fear and anxiety you do before each test I have.  I am one year out since I ended chemo and almost a year and a half out since surgery. It's still difficult and I have to push myself to see the doctors and get the tests done. 

You can do this. Just remember to take a deep breath!

Wishing you peace,

Cathy

Kathy G.'s picture
Kathy G.
Posts: 228
Joined: Dec 2012

Hi Virgil!

I am surprised that only a few ladies responded to your post as this is a frequent topic. Must have been a busy Monday for many...lol!

I am over 2 years out and onto 6 month visits now. I start getting the anxiety and fear about a full month before my scheduled appointment. I think about changing it as it gets closer...avoiding the inevitable. Then I have to tell myself that it is better to go thru this anxiety and fear then to let things slide and get bad news. At least if there is a reoccurence it will be caught early.

Many of the ladies on here have years more than me and talk about the anxiety you are feeling. It is really about our 'new normal' ...the way we now live our lives after going thru cancer. Every headache, stomach ache, and any other pain becomes a cause for alarm...is it cancer again?

Most of the times it is not!

So keep your appointments and work thru the anxiety. My hisband always goes with me since it is an hour away. We go out for a nice meal afterwards. I've gotten to the point where I try to focus on our 'date' afterwards rather than the appointment.

Good luck!

Kathy

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Scheduling problems?  Really?  Of course, you're neverous.  It's your first follow up and you need reassurance that there is no evidence of anything wonky going on.  And now it's overdue by 2 months.  I'm sure my little pea brain would be telling me that I "needed" that 3-month check and all the what ifs would be lurking. 

The odds are in your favor nonetheless with endometroid adenocarcinoma - even at grade 2.  I was grade 1 and was so nervous and worried about those first follow-ups (mine were every 4 months).  Now, almost 5 years later, I don't worry about them, but those first 2-3 years were always worrisome.  Because even though we are diagnosed early, with the "good" kind of endometrial cancer, it can recur.  Do you have copies of your pathology report?    That you did not have radiation or chemotherapy is pretty typical for our type of cancers.   I have never had a CA 125 (maybe I did preop, but I doubt it) and I'm sort or surprised you did as it's my understanding that they aren't a good marker for the Type 1 endometrial cancers. 

All I can say is it gets better, but you have to get through those first couple of years first and accept that you will be anxious.  It's perfectly normal how you feel and don't let anyone tell you "it will be fine" - they just need to shut up.  I have changed my relationship with a "friend" who insisted on telling me over and over again -  "I wouldn't have follow-ups, there's nothing up there!"  She raised my blood pressure every time I had an appointment.  I could not make her understand why the followups are recommended and so I finally got over being mad at her and just stopped telling her anything.  We  understand the worry about the "what ifs", even those of us who did not have an aggressive form of endometrial cancer.  It was, afterall, cancer.

I hope you make your next follow up appointment on the way out the door after this visit and get on a regular schedule, and those followups start being further and further apart and your anxiety becomes just that - anxiety, and you can look back and say "whew"!

I just realized your appointment was yesterday.  How did it go?

 

Suzanne  

AWK
Posts: 364
Joined: Mar 2013

We all do!  Especially that first one.  I had a scan yesterday and am awaiting the results.  I wasn't so stressed but definitely didn't get much sleep the night before.  In my experience my doctor calls right away if the news isn't so good.  I am assuming all the news is good since he hasn't called today.  I see him next week for my Avastin treatment so I am hoping we will start that with news of stability or even better.  The one thing I have learned is we can handle anything!  Be well.  Anne

Virgil90012's picture
Virgil90012
Posts: 36
Joined: Feb 2015

Dear Ladies,

Thank you all for the reassuring words and the support.  My appointment went well. My gyn-oncologist was pleased with my test result and my pelvic exam.  I see him again in 3 months.  You are all correct that I have to get use to my new "normal".   I am very glad that I joined this group.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Yea wonderful news. Lou Ann

Virgil90012's picture
Virgil90012
Posts: 36
Joined: Feb 2015

Hello Lou Ann,

 I too wish you the best in your journey to recovery.

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