Hi everyone,
So I have been scouring the Internet for evidence that fertility can be maintained for a 1b adenocarcinoma and there seem to be a lot of girls who have been treated and have kept their womb and ovaries.
On my first meeting with my consultant he was quite adamant that I would have to get the whole kit and kaboodle out, ovaries included. He did a pelvic exam and felt nothing untoward and my MRI came back clear. I had my PET on Weds and will get results at my meeting on Tues but am hoping that because MRI was clear there will be no spread.
They will be discussing my case at the MDT on Monday. I’m hoping the clear MRI might mean the can think about something less invasive.
Ladies, can you help me.
How appropriate is it for me to fight my corner to keep my fertility? I am not willing to have it taken away. Am I ‘allowed’ to request a larger cone/trachelectomy and close monitoring? I genuinely fear what losing my ovaries and/or womb will do to my mental health. I know this may seem silly because it is my overall health that is at stake but I simply can’t accept that there is no other option for me.
I want to go in to my meeting with him armed with as much information as possible. Do you/have you any experience of success with less invasive surgery for 1b adenocarcinoma? Can I ask him to reconsider my case?
I won’t give up my fertility without a fight.
X
Hi Maeve
You are absolutely right to fight for your fertility. As much as these doctors are here to help you, you have to remember it's your body, your life. It's important to remember that they cannot do anything without your consent so if you tell them under no uncertain terms that you're not having a hysterectomy they'll have no choice but to explore the other options. It may even mean that you have to ask to be referred to another consultant or even another hospital but it will be so worth it.
When I had my first meeting with my consultant, they told me that I was booked in for a hysterectomy the following week - this was for 1b1 adenocarcinoma/squamous cc, and I had also had a clear MRI. I had spent the 6 long weeks since my diagnosis researching treatments online and I had convinced myself I would be having a trachelectomy and it never occurred to me that they would be thinking something different - I was 26 with no children, of course i wasn't going to sign that consent form!
I told them no, absolutely not, I told them what I wanted, and they gave me the pros and cons of each option, then let me go to the hospital canteen to think about it. I didn't need to think, I'd made my mind up weeks ago.
I had a radical abdominal trachelectomy and lymph node removal. I did ask about having the key hole surgery and they said I could but I'd have to go to a different hospital but I was happy to stay at my local one and have the abdominal procedure - but this goes to show that they can arrange alternative treatments at alternative hospitals for you.
Please don't be pushed into thinking that you have to do what they say. Yes they're trying to preserve your life, but that doesn't mean you don't have an input into how they do that. It's so frustrating when they have these MDT meetings and you're not even there to say "hello, I'm the human being whose fate you are discussing!"
Be strong and matter of fact, and state your case!
xx
Hi Apples,
Thank you so much for your reply. Wow it seems are stories are very similar! I am so glad you were strong and got the result you wanted.
I did fertility treatment to extract eggs and make embryos (waiting to hear today how many frosties I will have) and being in the fertility clinic every few days solidified the fact for me that I am not ready to be infertile, regardless of the consequences. It may sound NUTS but I genuinely feel that mentally I could cope better with the chance of recurrence and frequent monitoring than I would with infertility and early menopause. I know myself and what I can deal with and that is just not an option for me.
Can I ask how you have been since your trach? How has it affected you physically and mentally ?
And if I point blank refuse radical hyst are they obliged to give me other options?
I'm in Ireland so not NHS.
M xx
I'm glad I can help :)
Yes they have a duty of care, so if you say you're not happy with their treatment plan they will have to revise it or refer you to another trust/consultant. Also, don't be scared to go back to your GP and ask them to refer you elsewhere.
They told me my tumour was quite high up in the cervical canal and that's why they'd prefer to do the hysterectomy. For me, I knew the risk of having the trach was that they may not get clear margins, and that I may end up needing further treatment, but I knew it was worth the risk. I have a really supportive family and my sister was with me at the time saying that she would be a surrogate for me, and that I should have the hysterectomy to make sure they got it all, but I was so set on having the trach.
I recovered really well - both surgeries, whichever you have, are major and it takes time to get back to normal. I got my all clear about 2 weeks after my surgery, clear margins, no spread to lymph nodes. I was on 4 month check ups, now I've moved onto 6 months. All my post op smears have come back clear. For me, it was worth taking a chance. I'm over 2 years all clear now.
xx
Hi Maeve,
Sorry to hear you're having to make some tough decisions as well as fight your corner.
Just wanted to share my experience, I was diagnosed in April with 1b1, (age 29), MRI clear, treated with cone biopsy and lymph node removal through key hole surgery. My lymph nodes were clear and surgery was successful! Just had my 3 month review and all going well! My consultant remained positive about my situation and fertility throughout- which helped me mentally.
It's definitely worth asking about alternative options, and it's totally understandable that taking the least invasive approach to maintain fertility would help you get through this challenging time. Absolutely no harm in asking or getting a 2nd opinion if you're unsure.
xx
Hi Rhi,
Nice to hear from you, I was reading your posts earlier today and was very heartened by your story, it sounds the closest to a 'success' that could come from this mess! Delighted your 3 months was clear ;)
How has life been since?
x
Got my PET scan results, nothing visible on cervix, elsewhere or lymph nodes. Spoke to my lovely clinical nurse earlier, I explained the fact that I want a less invasive procedure, she told me to remember that there was cancer removed and it was of a size (I think my notes said 17mmx8mm) but to speak to my consultant tomorrow and explain my position. I am going to ask him to treat me gradually, starting off with large cone/trachelectomy to try and get clear margins. I'm hoping that he'll go with this. As the cancer does not appear to be in the nodes is the chance of recurrence quite low? I have read that the rate of prognosis/recurrence is exactly the same for trach as rad hyst. Thoughts?
Excellent news!
Here's hoping they will go along with your own treatment plan.
Be lucky :-)
Tivoli
