Hi,
Ive been diagnosed 1B adenocarcinoma.
I will have a radical histerectomy which Im terrified from.
I have to decide if I enter a clinical study for the surgery. In my hospital, the regular way would be open abdominal and testing the linfonodes during the op.
But they are telling me I have an option to enter this study where I would randomly assigned to either open abdominal or robot laparoscopic surgery, both with linfonodes tested post surgery.
The doctor is saying he really thinks I coukd beneficiate from a laparoscopic aproach, but the last study from 10 years ago they have showed a 10% worst survival rate. From 95 to 85. But he says they believe its because of the technique was worst and robotic is much better and they want to prove that the results are actually the same if not better with laparoscopy.
How can one decide on that???
And also, they are telling me I should keep my ovaries cause the spreading there is so rare and im young (35) but Im so scared.
I feel like my life is over. Huge surgery. With many risks. And then what? Is my life going to be horrible from now on if i survive? Will I die from this?
And I have lower back pain since the cone and they tell me its not from the cone and then I think is the cancer spreading and I freak out. They did only xray to my lungs and mri of the pelvis.
I dont want to die, i got married to the love of my life only 6 months ago.
Can anyone share their radical histerectomy story? Help with opinions from self experience? Is there anyone with happy endings after having this diagnosis? I feel like my life was stolen from me
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Hi @judith, I am sorry to hear ur news, but wanted to pop in and say ur life is most definitely not over. I was diagnosed last Feb at stage 3c2 and am now NED after chemo, radiotherapy and brachytherapy last year. U are at a much earlier stage and it is very much curable. I didn’t have a hysterectomy as they won’t operate at advanced stages, but my dad had robotic surgery for bladder and prostate removal and it was definitely the best choice. Less risk of infections and faster recovery times. It’s also a lot more precise. It’s the standard here where I live now, instead of open abdominal surgery. I hope this helps, and wish u all the best on ur journey. X
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Hi Andrea,
Are you in the UK because. …
Im Scotland and advised only open historectomy is the gold standard. Im a 1A age 60 diagnosed March 3rd 23 and waiting on radical hysterectomy. There is a trial LACC report 2008 which is the reason not to use robotic in scotland. The date of the report which was sponsored by an Australian company is old. 2008.
Judith, sorry to hear about your anxiety i understand there is growing evidence that robotic is better. All surgery is a risk, where are you based Judith?
I agree best to stay away from Google.
I am very stressed also but more so because i have had annual smears with hpv since 2017 that were all clear with hpv no cell change. So i flew through stage 1 to 4 precancerous stages without being identified with cell Changes.
Ps. Im also 1a aggresive squamous cell carcinoma.
Hi @Helenteresa I am in Scotland also, but not every health board has the machinery for robotic surgery or the staff trained to use them, which could be why it’s not an option for u. My hospital (we’re not allowed to name them on here) was the first in Scotland to use them back in 2015 and had another 3 machines installed in 2021.
I had stage 2b adeno treated with chemo and radio which left residual cancer. I then had a robotic hysterectomy which was great. I was out of hospital within 24 hrs and 12 months on alls fine. I have to look hard to see my scars. The recovery was amazing within 2 weeks I was driving and walking 4 mile each day. I remember being terrified of the surgery. I was told I would
Be in surgery for close on 8 hrs but was out and awake eating toast and drinking peppermint tea after 4 hours asking can I go home. I had a shower the morning after, got dressed and was discharged with a catheter for a week.
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I would agree with that, in Uk open surgery is the gold standard also I am surprise that they suggested to keep your ovaries. It is only recommended for squamous cells and not adenocarcinoma as it has a quite higher risk for ovaries metastasis.
I know it is very hard to decide but is it worth taking a second advise? Regarding the trial it is only speculations and your consultant might be bias on his recommendation as he might be involved in the trial.
Hey,
I finally found some strength to answer. Its not very nice to tell someone their doctor might be not having their health at their best interest.
I wont go into more discussion but just for you to lnow your message caused me huge anxiety regarding my treatment when i was looking for reassurance. Which i guess we all look for here. Just in case you want a tip: if you are not a doctor, limit your messages to your own experience. I hope you fully recover from this and never have to suffer from this horrible desease again.
Hi Judith, I am sorry for what you have been though and if I offended you, it was not my intention. What I wrote above is purely my experience and what the doctors told me. No one here is a doctor, people share their experiences to inform others for things that people might not be in the right mindset to think after experiencing a trauma.
As a person I am very logical and like to see the facts because this is my way of copying. However, this might not be the same for everyone.
I went through discussions about trachylectomy, radical hysterectomy, fertility treatment and at the end through chemo radiation which ended up being the preferred route of treatment, so I have been discussed for each treatment the pros and cons with different consultants.
If you are interested in more information for typical treatment per stage in Uk you can find it below:
https://www.bgcs.org.uk/wp-content/uploads/2020/05/FINAL-Cx-Ca-Version-for-submission.pdf
I am really hope everything to go well with your treatment and pls don’t be discourage by my post for asking questions or posting any concerns as it really helps.
Be strong!
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