Hopefully a little reassurance...

I am 18 months post hysterectomy (post diagnosis). When I was newly diagnosed, I remember reading so many of these types of posts in panic. Now that I have some distance from the initial shock, I thought it might help for someone who recovered well from early stage disease to post.

It is not “easy” by any means. I still have three month appointments with pap, colposcopy, hpv swab, and bloodwork every three months. I have a risk factor of LVSI. So, in my case, this plan is for the first 3 years and every 6 months until year 7. I have MRI every 6 months for the first three years. Then it will drop to annually until year 7. So, reoccurrence is a fear that lurks in the background, but so far, so good. I have every hope I will be okay.

I have had some bladder problems (prolapse) after the hysterectomy. I’ll get occasional bits of back or groin pain, and I’ll feel so scared it’s recurring. I even had a chain of inguinal lymph nodes swell at the 6 month mark which caused me so much panic.

But- all my imaging and labs show NED. I have moved so I have had various oncologists. Some are kind, one was definitely not.

My husband complains that I have too many medical appointments, and he says he wants to be “done” with the topic. It caused quite a few arguments. So, now, I simply do not tell him much about my ongoing surveillance.

So, it has not been an easy journey. I have dreams of the cancer. In my dreams, he is evil. He tries to change disguises and invade my body. Yet, I stare him down and an army of white soldiers wearing t shaped crosses consumes him every time.

In spite of the anxiety, I am still okay. I am stronger now. I have an appreciation for each day and moment that is a true gift. I am thankful I can exercise. I plan to return to work as a psychologist (took some time off when kids were young), and I plan to live my life without fear. What I learned from my bout of cancer is that the evil wins if the fear consumes you.

Most early stage (stage 0 or 1) posters probably do not return much to this site. We probably should to give others hope that you can indeed go for 18 months with no evidence of disease after treatment.

Nov 2017 LSIL
Feb 2018 colposcopy and bx-CIN3
March 2018 LEEP -stage 1a
March 2018 simple hysterectomy
June 2018- negative pap and hpv
Sept 2018- negative pap and hpv, but dr recommend 2nd opinion of pathology
Nov 2018 second opinion pathology-re stage to 1b1 with LVSI
Dec 2019-clean PET
Jan 2019 - negative pap
June 2019-PET; functioning ovary showed FDG uptake; presumed to be false positive
June 2019- trans vag u/s showed cyst on ovary; recommended watchful waiting
Sept 2019- trans vaginal ultrasound and bloodwork for tumor markers negative (yay!)
*scheduled for MRI and ultrasound in Nov, 2019
*next 3 month appointment Dec, 2019

1 Like

Hurrah for you!

Welcome to the forum and thanks for the post. It's always good to hear from people who are through treatment and having tests which continue to show NED.

The ongoing surveillance is a nerve-wracking experience, I still remember becoming increasingly distracted and anxious in the fortnight before my next exam, though it became less-so after 2.5 - 3 years.

Sorry to hear that your husband lacks empathy, I hope he learns it without having the rug pulled from beneath him.

Be lucky :-)

Great post and good for you! It’s positive stories that help so much with all of this - thank you xx

  1. Very well written Mem and thanks for posting. Do you mind me asking which country you are in? I've followed a similar path, though total radical hysterectomy for 1b1 in May 18. My follow up has been okay, but no where near the amount of tests you've had along the way. In fact I've only had a quick look up and a bit of pod and poke. At my 12 month anniversary I just got told you are now 6 monthly so see you in November. I'm pretty sure our NHS has stopped further scanning for 1b1 levels unless they have reason to.  Helen xx

Hi All,
I know it is a while since this post, but it feels so similar. I am 16months post RH for 1b1 amd LVSI +. I had a 3 month mri and at my most recent check up today asked if an annual scan was possible and told it wasn’t protocol.
Just like you Helen I just have a look, feel and have had 2 smears in 16 months.
Do I push it further next time… or trust the system?!