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3 years post diagnosis update

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nm_353
nm_353's picture
3 years post diagnosis update

Hi ladies, 3 years ago I was diagnosed with 1b2 adenocarcinoma and had a nice sized tumor! I started treatments sometime in mid August. I’m currently every 6 months, but I’m supposed to be knocked down to yearly after my October appointment. I’m still NED. I’ve had some bumps along the way. My first two years were pretty savage with the scar tissue pain! A couple bouts of radiation cystitis in the 2nd year. Just recently I had to deal with uterine thickening due to my hormone Patch. I was able to go in under anesthesia and have them do a hysterascopy and do an ablasian to thin it back up. Histology report was good and doc saw nothing out of the ordinary. So now my only issue may be a hysterectomy in the future if my uterus keeps thickening up in reaction to the hormones. I’m just glad it’s not cervical cancer related! It’s been a long road! I got tired of all of the medicines though, and researched a quality cbd tincture, it has been a godsend for my scar tissue pain! My kidneys and liver are sort of sucking at the moment so I’m trying to not take any other medications and let them heal! I do still have issues with my white blood cell count, it has not completely recovered since chemo. My body did not tolerate the cistplatin well and I was only able to get 4 of the 6 doses. So now I’m trying to eat well, exercise, vitamins etc... Need to build that immune system back up! Just wanted to share, you ladies will get through this. It’s just a long road. 

June 2016- pap, not up to date, results abnormal

Julyy 5th-  After followups diagnosed with Adenocarcinoma

July 12th 2016- Met with oncologist, clinically staged at 1b2, staging confirmed with MRI and PET. Tumor is endocervical and approx 7 cm.

August 2016- Started chemorads. Post followup after treatment, NED

Sept 2018- Still NED

Alice89

Hi.

I was actually wondering what your uterine thickening was, I remember it from your post a while back and I was thinking how you were getting along. So pleased it’s nothing too serious.

Its always so positive hearing stories like this especially (please don’t take this the wrong way) when they also have hiccups along the way. It’s reassuring to people like me who are only a few months out of treatment that every pain and niggle isn’t necessarily something sinister.

May I ask when you started to experience scar tissue pain and what it feels like? I’ve had some pain in my pelvic region recently and I’ve had to have an ultrasound because of it, they found an ovarian cyst (nothing to worry about) but they aren’t sure that’s the cause of it. 

Alice xx

 

nm_353
nm_353's picture

Honestly, mine started pretty quick. I had a tough first year even somewhat  of a tough 2nd year. I have nerve damage around the sciatic and lots of scar tissue. I was in pain within a couple of months of finishing treatments. This third year has been better! I even stopped coming here for a while because I was a bit triggered. Treatment and the after effects left me with some mental scars. I am doing better now though! I have actually forgotten a lot of the bad stuff. Now I have to really think about it lol! And I know what you mean, I like reading some of the struggles too because it makes you feel better to see that it can be normal even when it seems like it could be sinister. I’m definitely humbled by this whole experience though and I enjoy my children and life more than I used to. Try to appreciate the little things. It took me a while to get here though.

June 2016- pap, not up to date, results abnormal

Julyy 5th-  After followups diagnosed with Adenocarcinoma

July 12th 2016- Met with oncologist, clinically staged at 1b2, staging confirmed with MRI and PET. Tumor is endocervical and approx 7 cm.

August 2016- Started chemorads. Post followup after treatment, NED

Sept 2018- Still NED

Lizzyb

Congrats on 3 years! Understand about the triggering but then suddenly you’re able to do a day, then a week without thinking about it, never thought I’d sleep again after initial diagnosis.

we’re def all stronger than we know. 

Memagh

Hi,

Just starting on this journey (waiting for MRI/scan) but wanted to thank you for coming back in this site to update. Really hope things start to improve for you day by day. It’s definitely not a sprint is it! Xx

Tivoli
Tivoli's picture

Hey! :-)

Good to see you around! Sorry you've not had the easiest of times, but so happy to know that you're still NED.

Keep strong!
Be lucky :-)
Tivoli

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