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Wanted to share headlines of my story so far in case helpful for someone in a similar position. Appreciate everyone's situation will be unique so the intent of sharing is to give people the confidence to ask for a 2nd opinion, rather than to suggest that what has happened for me would or should be the outcome!
Researching different threads on here when I initially recieved my treatment plan (first team, first suggestion: chemo rad) made me confident that I should ask for a 2nd opinion as there seemed to be people with similar prognostic factors who had done the same and received recommendations for surgery instead.
We therefore found a surgeon that had experience in this area and booked a consultation ASAP and asked to be discussed in their hospital's next MDT. On review of CT and MRI reports, the 2nd team did not agree with chemo/rad as the first option and contacted the 1st team directly, as a result of which both the 1st and 2nd teams are now considering surgerical options (radical trachelectomy) that could help to preserve my ferility and ability to carry a child. (My husband and I married last year and were TTC when I had my smear so fertility preservation has been an objective for us, though being cancer-free is the top priorty). The intial recommendation for chemo/rad was valid based on the presence of LVSI, however the revised recc for surgery has been more in line with what we feel is right for us taking into account quality of life factors and so we feel glad that we went down this route, despite the extra time it will take to begin treatment and the slightly higher risk of recurrence.
I've pasted headlines below and some more detail further at the end of this post. If anyone has any questions or advice please do drop me a note.
03.11.20 - Smear test (high grade dyskaryosis (severe), features suggesting invasion. High risk HPV)
25.11.20 - Colposcopy + LLETZ
02.12.20 - Diagnosis: moderately differentiated squamous cell carcinoma min. stage 1b1 (15mm wide, 6mm deep), LVSI, involves deep margin. CIN 3.
09.12.20 – Rad/chemo recommended. Requested ovarian transposition.
11.12.20 – 2nd opinion sought. Recommended surgery after MDT on 15.12.20 pending further tests inc. PET scan.
16.12.20 – 1st team review: recc. radical trachelectomy pending clear PET scan, noting slightly higher risk of recurrence.
05.01.21 - PET scan due
03.12.20 - Consultation
05.12.20 - Pre-IVF/ICSI tests
08.12.20 - Begin random start stimulation
22.12.20 - Egg harvesting due
Detailed update following review meeting with 1st team
1st team have reviewed their recommendation and are now considering surgical treatments pending a clear PET scan at the end of December/beginning of January. If there is any sign that the cancer has spread to the lymph nodes, then they would continue to recommend rad/chemo (they confirmed that their reason for suggesting this in the first instance was the presence of LVSI, which they deem as high risk for the spread of cancer cells beyond the tumour). If the PET scan is clear, we should be able to opt for a radical trachelectomy (RT) with pelvic lymph node dissection / laparoscopic lymphadenectomy. If the lymph node dissection reveals any immediate spread, then the RT will have to be followed up ASAP with rad/chemo. If the lymph nodes are clear, close follow-up will still be required (e.g. scans every 3 months) to monitor signs of spread given the existing indication of LVSI. There is limited data available on survival factors but with RT the risk of recurrence is higher vs. rad/chemo - 3-4x, with best available data suggesting that 5 year DFS rates would lower from 90-95% with the rad/chemo to ~80% with the RT. RT has significantly fewer side effects than rad/chemo (and fewer side effects than a radical hysterectomy (RH), which is another surgical alternative on the table if more of the local area needs to be removed). The greatest advantage of RT is uterus preservation, meaning I may be able to carry a child. With both RH and rad/chemo this would not be possible, and unless the ovaries are temporarily moved and suppressed via additional treatments, early menopause will also occur. Additionally, rad/chemo carries a 10-15% of long-term mild side effects to the bowel and bladder.
Immediate next steps are:- Consultation with the 2nd team surgeon on 22 Dec, to better understand his proposed treatment plan- PET scan w/c 28 Dec with 1st team OR on 5 Jan with 2nd team, will ask if this can happen earlier (delay may be intentional to allow inflammation from LLETZ and ovarian stimulation to subside)
03.11.20 - Smear: high grade dyskaryosis (severe), likely invasion, high risk HPV
25.11.20 - Colposcopy + LLETZ
02.12.20 - Diagnosis: mod. differentiated squamous cc min. stage 1b1, LVSI, deep margin, CIN 3
09.12.20 - Rad/chemo recommended, requested ovarian transposition
11.12.20 - 2nd op: recc. radical trachelectomy
22.12.20 - Tumour upgraded to 1B2, trach no longer recc.
05.01.21 - Clear MRI and PET scans, 2nd team support request for trach
18.01.21 - Radical vaginal trachelectomy + 11 lymph nodes removed
28.01.21 - NED in extracted tissue, follow up plan = scans and examinations at 3, 6, 12 months