Been diagnosed with cervical cancer, had the lettz, biopsy,MRI etc. Now been told the cancer hasnt spread and the MRI is clear but i need a full hysterectomy. Why!?! Im devastated, im not poorly! I would like another child, but saying this out loud feels ungrateful. Cant stand talking to people, theyre either annoyingly positive or look at me like im dying. Im not even sure whether i am or not! I need to know the life long consequences of a hysterectomy. I cant deal with the not knowing! Im hoping someone on here will understand x
Hi Suzi,
We can see how distressed you are, and rightly so, with the news. Can you just help us with a bit more information - did you have the LLETZ recently, and what was it done to remove? Did you get the biopsy back, and did it show that the cancer had been removed by the LLETZ or not? It’s great news that the MRi shows it hasn’t spread, but what stage have you been diagnosed with?
Just want to be able to help you best. A hysterectomy, or chemo & radiotherapy (so both main cancer treatments) will mean you will never conceive or give birth to a baby again - so they are game over in terms of fertility. Can you give us any more information? X
Thankyou for responding to me, i had Lettz 1st march 22, they found it was glandular mainly and some squamous cells too. He took a biopsy, did a cone removal and removal of a mass.
My surgeon rung and told me it was cancer n i need a MRI 18th march, but then 23rd March the colposcopy dept told me i had been sent a letter saying all clear, I explained thats not what the Dr said and chased the MRI. So i was fully expecting the MRI being done as a precautionary measure and all to be clear. Had MRI 1st April and recieved a apologetic call from my surgeon saying the letter was an error, its cancer and the hysterectomy is needed due to the size of the tumor (not ‘mass’ this time) he said the number 2a1 but its all so hard to understand or accept.
Oh goodness, Suzi, I am so sorry. It sounds like Adenocarcinoma, if it involves glandular cells, or a combination of this with Squamous cell - so an adenosquamous cancer. Adenocarcinoma is more aggressive and stubborn, and they will want to treat this straight away. Cancer Research UK gives a good illustration of the stages:
https://www.cancerresearchuk.org/about-cancer/cervical-cancer/stages-types-grades/stage-2
A staging of 2a1 would suggest an actual tumour of under 4cm - very borderline in terms of treatment - 2b and you would be given radiotherapy and chemotherapy instead. I’m sorry to say that you will definitely need a hysterectomy, and that this will be done to save your life - because if you have cancer it’s not going to go away on it’s own. There are other young ladies on this forum who are struggling with EXACTLY the same issue as you - please look at some of the other threads - where they wanted families but are faced with a cancer diagnosis. All I can say is that you are going to have to make YOU a priority now, and trust that it can, and will, be cured. There may be other ways you can expand your family once you are well.
Please do give the helpline a call; it sounds like you’ve had an almighty shock and could do with talking to someone who understands. X
https://www.jostrust.org.uk/get-support/helpline
Hi Suzi1 and welcome
I’m sorry to hear about your diagnosis and how your are feeling at the moment.
My cancer was staged as 2A1 which means it was under 4cm but had spread beyond the cervix into the top of the vagina. I was told I had a 90% chance of a cure with a radical hysterectomy - nothing less than that. As it turned out my post op histology indicated I had a significant risk for recurrence so I went on to have chemo-radiotherapy as well.
In terms of the long term consequences of a radical hysterectomy (if you need one) there are a range of possibilites and your medical team should explain them to you before you consent to the operation - infertility aside many women get back to near normal. But it’s a no brainer if it’s needed to save your life.
As jacks suggests you might wish to call the helpline. It was my first port of call when I was diagnosed back in 2017; the volunteers were very supportive and talking to someone who understood helped me so much to deal with my feelings and make sense of my situation.
x
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Hi
Have you spoken to your surgeon about you wanting more children? I mentioned this after i was diagnosed with stage 1a2 cancer, i had my lymph nodes removed which all came back clear and 2 lots of lltez. I now have mild changes and still hpv positive, but i am also 15 weeks pregnant! I was diagnosed in February 2020, i will have the hysterectomy after i have had this baby as this will be my third. But they will always listen to your needs too and tell you if it is safe to do so
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For the sake of my mental health, i think ive decided to have the full radical hysterectomy. My lymph nodes are clear but the lymph route is involved so im terrified that delaying treatment may result in babies with no mum. Very hard to have that choice removed tho! Great to hear of your pregnancy, hope all goes well xxx
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