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Stage 1b1 with LVSI - grey area between surgery and chemo/rad

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newuser87
Stage 1b1 with LVSI - grey area between surgery and chemo/rad

Hi,

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. 

 

Cancer

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

Fertility preservation

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 

Jazza
Jazza's picture

Hi newuser87

As you rightly point out everyone's situation is unique but I can certainly empathise with the dilemma of being in the grey area between surgery and chemo-rads. Fertility wasn't an issue for me but I found the prospect of long term side effects was very challenging to say the least.  Following clear MRI and PET scans and a pelvic lymphadenectomy which yielded node negative results (staged 1b2 - new FIGO) I agreed to a recommendation for a radical hysterectomy with a 90% chance of cure.  Unfortunately my post op histology showed I had LVSI, PNI and a close anterior margin and my cancer was restaged to 2A1; I was recommended to have further treatment with chemo-radio, which I agreed to. 

I decided not to get 2nd opinions because I had confidence in my medical teams and personally I felt that 2nd opinions might just present me with a dilemma that I wouldn't know what to do about.

Did I make the best decisions about my treatment - I don't know -  I can never know.  So far I am NED but I do have a couple of long term debilitating side effects from my treatment; notably a semi-paralysed bladder and fairly severe lymphoedema. We can only do what seems best at the time and then learn to live with and accept any consequences. I agree that it is very important to discuss all our concerns and explore all the options with the medical team before consenting to treatments so at least we can look back and know we gave it our best shot at the time.

Wishing you all the very best with your decision making; hope all goes well for you

x

 

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) 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 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6 chemo, 25 external radio, 2 brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
newuser87

Hi Jazza,

Thanks for sharing. I am so sorry to hear about the side effects you're living with, though pleased that you are NED so far. 

Yes, there's definitely a bit of additional burden from having got the second opinion as there's now pressure on us to make a choice between the 2 treatments rather than just following the 1 recommendation. However, I think the fact that 2 credible teams have had the back and forth on this shows that it really is a grey area and there's no right or wrong, just a difficult balance to strike between curative and quality of life objectives. 

I imagine that if it comes back I will spend a bit of time kicking myself for not taking the more 'belts and braces' approach of chemo/rad upfront. That said, I also think I'd feel a sense of that in reverse during our alternative fertility journey if I go for chemo/rad - sadly there isn't a perfect solution with this diagnosis :(

Really appreciate you sharing your story as it's important to understand that even with a clear PET scan there's a chance that post-op they will find that chemo/rad is still required. Will be hoping for the best but not getting excited about what it could mean until we've had an all clear. 

Thank you for your kind words. With best wishes x

 

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 

newuser87

Hi,

Couple of updates.

Cancer

The second hospital's team reviewed the reports from the first team. They believe that the tumour was incorrectly sized and may be twice as large - this would take me to Stage 1b2 and take the option of a radical trachelectomy off the table. We will know more tomorrow. 

Fertility Preservation

This has been tough. From 21 follices, 11 eggs were retrieved, of which 6 were mature. 5 of these fertilised, however only 1 made it to the blastocyst stage, and the quality is only fair. 

In short, I'll need another 1-2 cycles to have enough embryos frozen before chemo/rad (assuming this is the recommended treatment).

 

 

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 

AeronaW

Hello,

I have not been on here for a while but have been reading all the posts on the forum since I received histology results on Tuesday. I was initially diagnosed with 1a1 squamous cell carcinoma in October. MRI did not show anything else so I was told a LLETZ may be able to remove it. Unfortunately the margin wasn't clear and there was a focal area of LVSI. I had a radical hysterectomy and removal of sentinel lymph nodes. Unfortunately I was told cancer cells were found in the lymph nodes plus the top of my vagina. I am told radiotherapy is the next treatment. Having another scan on Sunday. Frightened they'll see something else! Crazy to think this had happened so fast. I didn't think it would get this far. Trying to stay positive. 

AeronaW

newuser87

 Hi AeronaW, Am so sorry to hear. How was the scan? Hope you're doing okay x

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 

More Information

Cervical cancer