Hey everyone
I have read a lot about laparoscopic hysterectomies and there's a higher risk of reoccurrence of C.C. than with abdominal. I'm at Stage 1A2 and at the MDT meeting it seems the team have decided that laparoscopic is how they are going to treat me. I am seeing my consultant on Thursday but I'd like to hear from any ladies who have had the laparoscopic/keyhole surgery
thanks x
Hi KirstyLou
I had a da Vinci robot assisted laparoscopic radical hysterectomy for a 1B2 (initial staging) cervical cancer in 2017. Post op tissue analysis indicated my cancer was stage 2A and that there was perineural invasion and lympho-vascular space invasion; all told I was advised I had a signifcant risk for reoccurrence so I went on to have chemo-radiotherapy as well.
I'm not sure if I should mention it because it's a bit alarming and very rare but my op caused a lot of nerve damage and I ended up with a semi-paralysed bladder - I have to self catheterise 3 times a day to empty my bladder. Some time after my op my surgeon suggested that, on reflection, my cancer was possibly a bit too large for surgery and had necessitated working too near to my bladder thereby increasing risk for nerve damage 
On the plus side laparoscopic surgery means less risk of wound infection and my scars are barely visible; also the general recovery time is shorter than with an abdominal surgery.
Perhaps you should ask your consultant why he/she is planning laparoscopic surgery. Also raise your concerns about the risk for reoccurrence; my impression is that there are more ladies on this forum who had adbominal surgery then laparoscopic since I had my op, just over 4 years ago.
x
Thank you for replying and sharing your story with me. I've just got so much whizzing around in my head I just need to take a step back and breathe....it can all just get a bit overwhelming. Im going to write my questions down and ask the Dr when I see him on Thursday and then take it from there. I'm glad there is NED for you xxx
Hi Kirstylou,
I was diagnosed with 1a1 adenocarcinoma in Jan and just had an abdominal radical hysterectomy March 9th. I live in the States and I ended up seeing 3 different oncologists and went with one that does abdominal over laparoscopic. 2 out of the 3 stopped doing laparoscopic because of the study. 1 still does the robotic laparoscopic surgeries. I am a worrier and I feared I would have higher anxiety post surgery because I read about the study. I am 11 days post op and doing very well. The first 5-6 days were pretty rough but really started feeling better after that. It is good you will be prepared with questions! I obsessively researched everything. Good Luck!!!!
Kristin
Hi,
I'm sorry to hear of your diagnosis but it's good that it's been caught at stage 1a2 :-)
I wanted laparoscopic surgery and my surgeon said he would do it if I insisted, but suggested I read the 2019 LACC study and get a 2nd opinion before making my decision. I did go for abdominal surgery in the end and I'm happy with the decision I made. Your cancer is very small and maybe that's why it's a better option for you, I was stage 1b2 and needed lymphadenectomy as well. One of the questions that helped me when speaking with my team was "what would need to be true in order for you to recommend (insert alternative)?" Asking this helped me get to grips with their thought processes and therefore understand why a certain course of action was preferred in my circumstance. All the best for your upcoming consultation, its a really good idea to write all your questions down xXx
Hi
I had a key hole radical hysterectomy in August 2020 for 1a2, if you need any info fire on as it is still pretty fresh memory ;)
Good luck ?
J
Hi
I had a key hole radical hysterectomy in August 2020 for 1a2, if you need any info fire on as it is still pretty fresh memory ;)
Good luck ?
J
Hi there. I’m in the exact same boat at you were in… So I was wondering how it all went for you? I had two cone biopsies and had two tiny tumors removed. The first one was 0.5 mm deep x 2 mm diam. One margin wasn’t clear of precancer (cin3) so I had another LEEP cone procedure to chk for mir cancer beyond that margin and they found a other small tumor 3.5 mm deep X 1mm diam. That brought me from stage 1a1 to 1a2. I was in Australia and they changed the recommendation from simple hysterectomy done laparoscopically to radical hyst done abdominally and removal of pelvic nodes. I contacted a.doctor in Toronto where I’m from and also one in Europe who said that was overkill and that I could do it laparoscopically safely especially since the tumors had already been removed by cone biopsy. The deep margin wasn’t clear so I’m worried there are some residual cancer cells left behind, but they don’t seem to be concerned. I had scans done and they didn’t show anything so that means whatever I had/have is still very small (scans don’t pickup less than 5mm). Also, they offer sentinel node biopsy so so I wouldn’t have to remove all my pelvic nodes if the sentinel nodes are clear. They didn’t offer that to me in Australia. So I flew back to Toronto and am waiting to see some doctors. I wanted to go to Europe because I was impressed by that doctor and he has answered all my questions and put me at ease. He said the skill and technique of the surgeon is very important with this surgery so as not to disturb the cancer cells and cause ‘spillage’ into the tissue left behind. My family are in Toronto so I prefer to do it here but I’ll travel if I have to.
How did yours go? Which way did you end up going? How were you staged , did you have cone biopsy or colposcopy or? Did your staging change at all after your surgery?
Thank you for sharing it really helps!
Hi there. I was wondering how it all went for you? I had two cone biopsies and had two tiny tumors removed. The first one was 0.5 mm deep x 2 mm diam. One margin wasn’t clear of precancer (cin3) so I had another LEEP cone procedure to chk for mir cancer beyond that margin and they found a other small tumor 3.5 mm deep X 1mm diam. That brought me from stage 1a1 to 1a2. I was in Australia and they changed the recommendation from simple hysterectomy done laparoscopically to radical hyst done abdominally and removal of pelvic nodes. I contacted a.doctor in Toronto where I’m from and also one in Europe who said that was overkill and that I could do it laparoscopically safely especially since the tumors had already been removed by cone biopsy. The deep margin wasn’t clear so I’m worried there are some residual cancer cells left behind, but they don’t seem to be concerned. I had scans done and they didn’t show anything so that means whatever I had/have is still very small (scans don’t pickup less than 5mm). Also, they offer sentinel node biopsy so so I wouldn’t have to remove all my pelvic nodes if the sentinel nodes are clear. They didn’t offer that to me in Australia. So I flew back to Toronto and am waiting to see some doctors. I wanted to go to Europe because I was impressed by that doctor and he has answered all my questions and put me at ease. He said the skill and technique of the surgeon is very important with this surgery so as not to disturb the cancer cells and cause ‘spillage’ into the tissue left behind. My family are in Toronto so I prefer to do it here but I’ll travel if I have to.
How did yours go? How were you staged , did you have cone biopsy or colposcopy or? Did your staging change at all after your surgery?
Thank you for sharing it really helps!
Hi there,
I had squamous cell carcinoma stage 1a2 (removed by cone biopsy) they want to do abdominal radical hyst and pelvic node removal in Australia but other places are offering laporoscopic as a safe option for me and sentinel node biopsy. I therefore just came back to Toronto Canada where I’m from and waiting to see doctors here.
I did the research about the LACC trial and learned the problem with recurrence was with tumours over 2cm in size. Mine weren’t anywhere near that (I had two little tumors 0.5mm deep X 2mm diam and 3.5mm deep X 1mm diam) and they’ve been removed. But the deep margin wasn’t clear so I’m worried about residual cancer cells left behind. I want to get the hysterectomy asap to get rid of it all!
Did you have a cone biopsy prior to hysterectomy? How were you staged? Did you have sentinel node biopsy? Pelvic node removal? How did everything go afterward… What we’re your biopsy results after hysterectomy? Sorry for all the questions… It all help!! How everything is well for you!
Hi there… How you’re doing well! Just wanted to ask, how were you initially staged? Was the tumour removed with your hysterectomy or did you have a cone biopsy first? Scans? Colposcopy? How big was the tumour at final staging?
I’ve had two cone biopsies and removed stage 1a2 (squamous cell carcinoma) ttumorand need to get a hysterectomy. Just deciding who I’m gonna go with and which procedure to get. Your input is much appreciated!
(Sorry if I doubled up on messages to you!)
Hi Sandi
The first real clue I had cancer was during a hysteroscopy (for suspected fibroids) when abnormalities were seen on my cervix - biopsies were done.
Histology on the biopsies led to a diagnosis of squamous cell cervical cancer.
I then had MRI and PET scans which indicated I was stage 1B2 (new Figo) tumour size 3.8cm.
Next thing was Da Vinci assisted laparoscopic removal of pelvic lymph nodes (lymphadenectomy); my lymph nodes were negative and the surgeon said there was a 90% chance of a cure with a radical hysterectomy.
I had a Da Vinci assisted laparoscopic radical hysterectomy with removal of both ovaries (I was 60y at the time); post op histology results were: cancer re-staged to 2A, lymphovascular space invasion (LVSI) and perineural invasion (PNI) plus a close anterior margin. It seems the surgeon felt he had removed all the cancer but an MDT meeting concluded I had a significant risk for recurrence so I was advised to have chemo-radiotherapy which I did.
It’s nearly 5 years since I was diagnosed. I’m NED so far but a bit unlucky in terms of side effects which include urinary retention and lymphoedema.
It can be very difficult deciding and consenting to treatments. Whatever we decide there’s no knowing what might have happened had we made a different decision. I belive that laparoscopic hysterectomies are not so popular as they were just a few years ago because they have a slightly higher recurrence rate than open surgery: https://jamanetwork.com/journals/jamaoncology/fullarticle/2766807
I wish you well with your decision making.
What did you decide in the end and for did it go for you?
How do that all go for you?
Hi Sandi, I’m so sorry you are going through all of this! This is how my story went…
Dec 2020 - abnormal pap
Jan 2021 - colposcopy to further investigate in which they found stage 0
Jan 2021 - Cone Biopsy which indicated 1a1 Cervical Cancer. They found 2 lesions. Margins were good except one tiny corner. But it was adenocarcinoma which as you probably know is glandular and can hide in the cervix further up.
I saw 3 oncologists. The first said he just does robotic laparoscopic radical hysterectomy. He told me about the study but still felt confident to go that direction. He did say if it was squamous cell he would just do a hysterectomy, not radical. The 2nd oncologist wanted to do another cone biopsy and see where the margins were with that one before proceeding with surgery. He would only do an abdominal hysterectomy, not laparoscopic because of the study and they just don’t have a lot of studies on cervical cancer. The 3rd oncologist said radical open hysterectomy - he felt the same as the 2nd. He stopped doing laparoscopic. All 3 said they do not mess around with adenocarcinoma because it hides. I went with the 3rd surgeon in Cincinnati, Ohio. I wanted to get everything over with as soon as possible. If i did another cone I would have to wait another 6 weeks to have the surgery and my nerves couldn’t handle it.
March 2021 - Pet scan was done before surgery and the cervix lit up of course plus one ovary. 3/9/21 I had a radical where they took the cervix, uterus, tubes, 14 lymph nodes and 1 ovary. Come to find out the ovary lit up because of really bad scar tissue from c-sections. It caused my uterus to fuse to my bladder and the ovary was twisted below it. This added an hour to my surgery so it was 5 hours. The other ovary looked good during surgery and he left it. Surgery recovery was really good. Since he had to repair my bladder I had to have a catheter for 3 weeks which was the absolute worst part. It ended up falling out at 2 weeks and they removed it. No issues since. No additional treatment was needed as no more cancer was found and it did not spread into lymph nodes. I see my oncologist every 3 months for 2 years and every 6 months until 5 years. Please let me know if you have anymore questions!
Hiya! Boy you went through similar stuff I’m going through now. What a nightmare! I can’t believe all the varying opinions I’m getting. open/laparoscopic… simple/radical/modified radical hyst… keep the ovaries/take the ovaries… do an ovarian transposition to save the ovaries should I need aduvent treatment later/don’t do that as it’s only done for younger women to preserve their fertility… total lyphadenectomy/sentinal node biopsy done intraoperatively/lymph node sampling biopsied post surgery along with the hysterectomy specimen…and so on! Not one doctor has given me exactly the same advice. And I’ve talked to many! I’m going nutso! Today I went to Princess Margaret Hosp in Toronto. The people were great. They gave their recommendation, laparoscopic simple hyst which is what I hoped for. But they want new scans done before final decision to do that. They say mine are outdated now. I wanted to keep my ovaries, but they say they should go, one main reason is my pathology report is confusing. There is mention of adenocarcinoma on it but all my pathology states I have squamous cell carcinoma. That’s all I’ve ever been told as well, and my previous surgeon (who did the cone biopsies) said my ovaries aren’t at risk and can stay. Adenocarcinoma however puts them at more risk. So now I have to go back and get clarified from the pathology clinic that I really have squamous cell carcinoma. The new doctor wants the actual pathology slides to review, but I don’t know if I’ll get them. It’s absolutely crazy. If it’s not one thing it’s something else. The doctor said I’m at the age of menopause anyway, but I would rather go into menopause naturally than get hit with it like a ton of bricks after ovary removal and have to go on hrt. If they’re really at risk then ok, I’ll do it. I’m so glad they caught it early and I hope nothing else turns up to change my staging. I also had two small tumors, which he said is more common in adeno carcinoma, but it does happen with squamous cell carcinoma. I guess he just wants to be sure. He’s the first doctor to question it. May I ask, after your final pathology, what stage did you end up being? Did it change at all from the initial prognosis? Having removed your nodes have you had any issues like lymphodema? Did removing one ovary cause any early menopause or anything? Thanks so much for sharing I really appreciate it!
Hi!
This all sounds very familiar. I am going through the exact same situation myself.
Had abnormal smear followed colposcopy within 2 weeks. Then needed to have an urgent MRI and PET scan. Followed by a LLETZ and a top hat. I am in England and I would say appointments have come through quickly. I was diagnosed with an adenocarcinoma stage 1B2 on the cervix which was in the form of a 2cm x 3cm polyp. Had no symptoms and wasn’t having sex (am a nurse and have been single since 2019). First consultant I saw said It’s lymph node dissection followed by radical hysterectomy a week later but leave my ovaries (I’m 33)
A had the lymph node dissection on Monday with a different consultant who said he discussed me with another colleague and wanted to offer me the trachelectomy as my tumour was small and said I needed to make the decision by Tuesday (while I was in hospital). I was quite dubious as his colleague was very clear about the size and I had read about risk of recurrence. Any way he back tracked on the Tuesday and admitted he hadn’t been at the mDT and had looked at the information in more detail. Then it became a discussion around whether the radical hysterectomy would be robot or open. He did point out that a number of hospitals in the country only offer open abdo surgery due to research. And I need to make the decision today as I have a clinic appointment with the consultant where they will tell me if my lymph nodes were positive or negative. Also both MRI and PET scans were negative and the LLETZ doctor is certain he removed the polyp stalk and could see nothing untoward. The lymph node surgeon also said the pelvic nodes appeared normal. But as a nurse, I know you can never be 100% certain.
I’m totally fine with having open radical hysterectomy. It is what it is. I think they expect more of a reaction from me in clinic appointments but I do find they dance around honesty rather than being up front.
Wow Sandi…that is a lot of different opinions!!! All of the oncologists I went to said every one will have a different approach on cervical cancer which makes your mind go crazy!!!
I feel like when I was reading a bunch on here there have been some people with both adenocarcinoma and squamous cell.
When i agreed to go with the 3rd Oncologist he did not trust the people who did the path report - he wanted his own people that he trusted to look at the sample and report back to him (same results). Can the sample from Australia be sent to Toronto?
After my surgery I was still considered 1a1…i suppose because of good margins and nothing in lymph nodes. He did not think i would get lymphedema from such a small removal and so far so good on that. As far as the 1 ovary removal I remember him telling me you only need 1/4 of an ovary to produce hormones not to go into menopause. All good there too!
Keep me updated on what happens! I know exactly how you are feeling right now!!
Laslett, it’s hard making such a big decision with all these differing opinions! I became obsessed with reading everything. I am like you - just give it to me straight up - don’t dance around.
Hi KristinH!
I got back from my appointment a little while ago and my consultant was very nice and thorough. He went through the pros and cons of each option and did say that his department has recently published research on the procedures and said that they’re comparable. They both carry the same risks to bladder nerves. I opted for the Da Vinci robot in the end as I live alone and when all you’re friends are nurses too, no one is actually free to give a hand. Also, my family are supportive but are unwell themselves. If there was an issue with the open abdo wound and clips I would really struggle to get anywhere. I had to consider quality of life post op. The consultant did say he was always trained to preserve ovaries and said that for my age he was glad I was keen to keep them as he said the risk for recurrence to them would be low - almost 1-2%.
I did sit there for a while with the consultant and nurses saying I just don’t know. I almost tossed a coin.
The nurse specialists said no matter what I choose I will always wonder if it was the right thing. So committed to it. Surgery is on Monday.
It doesn’t sound like people are told so many different things by consultants and peoples experiences seem to vary a lot. If something happens in future, I’ll cross that bridge when I come to it 
Also pelvic lymph nodes were negative! So that was a relief.
