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Changing staging

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Kimberlyg88
Changing staging

I was staged 1b1 with lymph node involvement in june19 went to gyno onco today and he told me I’m stage 3c.
I have already had a RH and chemo radiation.
When they told me nodes were involved (didn’t show up on petct but pathology after surgery) they said it doesn’t change your staging!
I feel like I don’t know what to believe now.
It was 2 different onco but the same hospital.

Anyone else been told there staging changed or didn’t?

Petesdragon
Petesdragon's picture

Hi there,

The staging system was changed in 2018 in order to take more account of the scanning technologies which weren't previously available. The current staging is as follows. They didn't use to change the initial staging but I am not actually sure whether or not that's the case now. However, cleary you are a stage 3 and it's important to know that so that you can get the most appropriate treatment for your stage. I was a stage 3 -22 years ago so I hope that helps!

Karen 

 

Stage I:

The carcinoma is strictly confined to the cervix uteri (extension to the corpus should be disregarded)

  • IA Invasive carcinoma that can be diagnosed only by microscopy, with maximum depth of invasion <5 mma
    • ○IA1 Measured stromal invasion <3 mm in depth
    • ○IA2 Measured stromal invasion ≥3 mm and <5 mm in depth
  • IB Invasive carcinoma with measured deepest invasion ≥5 mm (greater than stage IA), lesion limited to the cervix uterib
    • ○IB1 Invasive carcinoma ≥5 mm depth of stromal invasion and <2 cm in greatest dimension
    • ○IB2 Invasive carcinoma ≥2 cm and <4 cm in greatest dimension
    • ○IB3 Invasive carcinoma ≥4 cm in greatest dimension

 

Stage II:

The carcinoma invades beyond the uterus, but has not extended onto the lower third of the vagina or to the pelvic wall

  • IIA Involvement limited to the upper two‐thirds of the vagina without parametrial involvement
    • ○IIA1 Invasive carcinoma <4 cm in greatest dimension
    • ○IIA2 Invasive carcinoma ≥4 cm in greatest dimension
  • IIB With parametrial involvement but not up to the pelvic wall

 

Stage III:

The carcinoma involves the lower third of the vagina and/or extends to the pelvic wall and/or causes hydronephrosis or non‐functioning kidney and/or involves pelvic and/or paraaortic lymph nodesc

  • IIIA Carcinoma involves the lower third of the vagina, with no extension to the pelvic wall
  • IIIB Extension to the pelvic wall and/or hydronephrosis or non‐functioning kidney (unless known to be due to another cause)
  • IIIC Involvement of pelvic and/or paraaortic lymph nodes, irrespective of tumor size and extent (with r and p notations)c
    • ○IIIC1 Pelvic lymph node metastasis only
    • ○IIIC2 Paraaortic lymph node metastasis

 

Stage IV:

The carcinoma has extended beyond the true pelvis or has involved (biopsy proven) the mucosa of the bladder or rectum. A bullous edema, as such, does not permit a case to be allotted to stage IV

  • IVA Spread of the growth to adjacent organs
  • IVB Spread to distant organs
    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Kimberlyg88

Thanks Karen.

 

i guess what I don't understand is why one doctor calls it 1b1 the other 3.

i think they need to communicate because I'm now left petrified.

I'm not going to look it up but I'm almost certain the survival rate is a lot different.

i have never asked for a second opinion but am considering.i know it won't change anything because I have already compelted my treatments.

the onco I hadn't had before and he also said I wouldn't get vault smears.

i just didn't feel like he was on my side.

all I hear about is reoccurances.

do women actually stay clear of this cancer and go on to live?

Petesdragon
Petesdragon's picture

Yes, they do. As I said I have gone on to live 22-years after stage 3. Incidentally, so has my sister!

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Rissag

My staging was changed as well, I had a lymph node removal surgery before treatment and there was cancer in one, so they leap frogged me to stage 3.Try not to look up statistics online it’s just not worth the stress.

  • 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
Jazza
Jazza's picture

My staging changed.  I had a radical hysterectomy, Feb 2017, on the basis of a 1B1 diagnosis.  I was restaged to 2A following the hysterectomy; and on the basis of a poor margin, LVSI and PNI went on to have chemo-radio as well.  In theory, I guess stage 2A is better than a stage 3 but I sometimes wonder if I might have been better off if I'd had a higher initial staging, then I would have avoided the hysterectomy.  I was pretty unlucky with the hysterectomy as it caused a lot of nerve damage to my bladder and I'm having to self catheterise possibly for the rest of my life.  AND I have ongoing long term effects from the chemo-radio.

So I think the point I'm making is staging is one thing and outcome is another.

xx

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

 

 

Locket

I was initially told 1b as my tumour in cervix was small. After scans I was jumped up to stage 3, due to lymph node involved. I think that day was worse than being told I had cancer. So I completely get where your coming from. I tried to avoid the words stage 3 for a while. They will now treat you and like others have said it's curable xx

Jazza
Jazza's picture

A while ago I noticed a discrepancy in my medical reports, concerning the grading (as opposed to staging) of my cancer.  The reports from the surgeon say grade 3/poorly differentiated and the ones from the oncologist (chemo-radio) say grade 2/moderately differentiated.  It looks like a transcription error has crept in somewhere!

xx

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

 

 

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