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Adenocarcinoma with Mild External Illac involvement

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MissAlissa
Adenocarcinoma with Mild External Illac involvement

Hi everyone. I started this journey in October, but am newly diagnosed with Adenocarcinoma. My pet scan showed a 3.6cm tumor with mild external illac lymph node involvement.

My hysterectomy is scheduled for February 17th. Abdominal. everything except my ovaries providing they seem fine during surgery. I haven't been staged yet. I actually thought the PET Scan would determine my stage? But my doctor has only had nurses call me back to tell me results and they say they wont give any stage until after the pathology from my hysterectomy.

I'm a wreck. A stay at home mom to 7 year old twins. Currently i live in Los Angeles, CA but originally from Seattle, WA. Ive only been here a little over a year so I dont even know too many people aside from my husband and a few neighbors who I talk to in passing. This whole journey has been SO LONELY.

I hadn't felt good for months. I was suffering debilitating fatigue that had me napping constantly. I had joint pain. hip pain and back pain. Swelling of my joints. I have even been diagnosed with a connective tissue disease, but I am beginning to think this may actually have been the cancer all along because the doctors have been very puzzled by my symotoms when no blood tests have really shown anything wrong arthritis wise. They ruled out so many things and now this back pain that couldn't be resolved seems to make total sense.

Also, I was originally told that my cancer was Adenocarcinoma in situ "at least" but it seems if there's a nearly 4cm tumor that it's no longer "in situ" like they have stated. they don't want to give me much info and that just makes me even more anxious than if they could tell me what is going on or what the next 6 months of my treatment looks like. The not knowing is driving me batty.

anyways, Hi from Sunny Los Angeles. Anyone else from the area? Any advice or anyone been in a similar situation to mine? Would love to find some support out there in the big huge world.

Izzzy76

Hi,

First of all a big hug to you. I am so sorry you have found yourself in this position. And welcome to the club no one wants to be in :)

There are some US girls here, Rissag for instance, she just finished her treatment a few months ago.

 

I finished my treatment ( chemo and radiation and brachytherapy) a few months ago to, and I am doing quite well at the moment.

Have you found the people at Cervivor yet? That's a US based organisation and they might be able to help you find a buddy close to home.

28-8-2019 diagnosed grade 2 squamous 2B 4 cm tumor Mri suspect lymphe nodes but pet scan Shows no lymph nodes 25 radio extended field, 6 chemo and 4 brachy finished October 29 2019
Rissag

Hi miss Alissa, I'm from California too about 3.5 hours away from la. So sorry you're going through this and feel so lonely. I sure wished we had sites like this for the U.S , but didn't really find anything which I think is crazy.they most likely don't suspect lymph node involvement involvement which is great, otherwise they would have wanted to do chemo and radiation. Sometimes the nodes will get a little swollen but not necessarily mean their infected.they probably want to wait till after your surgery to stage you , because there probably going to take out some lymph nodes during your surgery to check them over. But for now sounds like you're a  stage1b1. If u have any questions about anything or just need someone to talk to, I'm here!

  • 01/22/2019 abnormal pap results 
  • 04/04/2019 colposcopy/ punch biopsy 
  • 04/15/2019 diagnosed with squamous cell carcinoma stage 1b2 6cm tumor 
  • 5/10/2019 egg retrieval surgery. 2 eggs retrieved and frozen 5/23/2019. 5 slit laparoscopic lymph node removal surgery and ovary transposition. 1pelvic lymph node involvement, bumped up to stage 3
  • 6/19/2019 started radiation and chemo
  • 8/5/2019 4 brachytherapy. Finished cancer treatment 25 radiation 5 chemo and 4 brachytherapy,Awaiting scan in November 
Pet scan results NED 11/13/19
Lucykp

Hi there!

I just wanted to chime in and say I had spent probably three years going back and forth to the doctors with joint pain, hip pain, back pain, body aches etc with lots of testing done and no conclusive answer ever found and then suddenly I'm diagnosed with AIS.

Ive often thought it was connected.

Sorry you're on this crappy ride. Xx

19.10.17 Pap smear done (4 years since last one) lesion visually spotted by Doctor

24.10.17 Abnormal smear results - atypical glandular cells found

25.10.17 - Ultrasound done (results are normal)

27.10.17 - Colposcopy - 4 biopsies taken

31.10.17 - biopsy results adenocarcinoma in-situ

10.11.17 - Needle cone biopsy confirmed AIS. Removed with clear margins

21.12.17 Total hysterectomy (kept ovaries)

17.1.18 Results from hysterectomy showed AIS in uterus but removed with clear margins - two years of vault smears needed

emmz13

Hey Alissa,

i amso sorry you’re going through this, it’s such a difficult time but it does sound like you have a good team coming up with the best plan for you.  I didn’t tell a lot of people about my diagnosis which I preferred so I managed to keep a bit of normality but at times I felt pretty alone too, I think it’s hard even for the people who do know to truly get it. 

I really am glad you found this forum it’s been a life line to so many of us, and as everyone has said, please ask anything and someone will be able to answer. 

I hope everything goes Well for the 17th, try to stay positive you are an awesome woman and you will get through this. Much love xxx  

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

More Information

Cervical cancer