Can't get my head around this

So I have a 5cm adenocarcinoma. I cant get my hear around this. Referred for MRI and told treatment will more than likely be chemo radiation. Does anyone know why the don’t do a hysterectomy straight away? I cant stop thinking it’s because it’s too late. Doc says as I’m 41 and strong and fit I can fight this. I’d be so grateful for any advice you can give me.

Many thanks

Firstly, sorry to hear you’re in the same ‘boat’ as many of us on here are, or have been. It is a shock, isn’t it! I didn’t have a hysterectomy either, and the reason was that mine has spread beyond the cervix… doing a hysterectomy can disturb cells and make the possibility of the cancer metastasising greater - plus at that stage you have to treat the whole body systemically. The MRi (and probably a PET/CT as well) will tell your healthcare team whether it has spread at all - possibly into lymph nodes, as mine had, and they need to treat the body systemically - kill all and every indication of cancer. I’m guessing you haven’t had confirmation of the stage so far, so they’re being cautious in the treatment suggestion.

Being set for chemo-rads doesn’t necessarily mean your cancer has spread, however. Adenocarcinomas are fast growing compared to squamous carcinomas, and are higher up in the cervix in the glandular tissue. It may be that your team are being particularly cautious overall and want to make sure they kill that tumour with a two-pronged attack - chemo and radiotherapy. These things are very good at the job! I had a primary tumour in the cervix plus cancer in the para-aortic lymph nodes (up your belly) and was Stage 3 squamous cell carcinoma. By week 5 of the treatment I had a PET/CT (I was part of a voluntary research study) and the lymph nodes were clear! The next scan was 3 months after the end of radiotherapy (this keeps on working in your body for 3 months) there was NED - no evidence of disease - so the tumour had been eliminated. This is what they’re working towards for you.

Try not to panic - I am 64, so a lot older than you - and (if you see my back story) first had rogue cells when I was about your age, but then only had LLETZs and cone biopsy - and it returned, unbeknown to me. You are definitely going to fight this and your whole team will make the best choices for you to make sure that cancer’s butt is kicked and stays that way.

Let us know what your diagnosed stage is and keep posting. We’re with you.
X

Thank you so much for your reply. No stage yet, I was in hospital for a week with severe pain due to stenosis and a build up of blood and clots. I had a CT at that time and theyve said the only thing they could see was that 1 tumour. I’ve had so may US both external and internal, colcoscopy etc and have been told that ovaries etc are clear. I am aware it’s a big one and could’ve spread. This is agonising but I’m grateful they’re moving at speed

Hi Shammy

If I recall correctly anything bigger than 4cm is considered unsuitable for a hysterectomy.

I had squamous cell cervical cancer measuring 3.8cm (nodes negative) and was told I was borderline operable and had a 90% chance of a cure with a hysterectomy. I was robustly advised to have a hysterectomy so I agreed. Unfortunately my post op histology results showed lympho-vascular space invasion plus perineural invasion plus one of my margins was very close. So I was then told I needed chemo-radio as well. I’ve got long term side effects from both the surgery and the radiotherapy. Ironically I might have come off better if my cancer had been a tad bigger so I would only have had chemo-radio.

I incurred a lot of nerve damage during my hysterectomy which left me with a semi-paralysed bladder so I now have to use catheters to help empty my bladder. I guess the size and shape of my tumour meant the surgeon was working very close to my bladder nerves.

x

Goodness I’m sorry to read that your journey has been a difficult one. I’m so new to all this, you guys are so well informed. I guess our journeys are just all very different and finding another who’s story is exactly the same as mine is probably impossible. I’m avoiding Google at all costs and sticking to here for now.
Many thanks for your reply x

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Hi Shammy

I was diagnosed with a 4cm grade 1 adenocarcinoma May.
After scans I was staged at 2b the tumour had just began to touch the parametrium so I was not suitable for hysterectomy.

I am currently on week 2 of 5 week treatment plan. 5 chemo, 25 radiotherapy and 3 brachytherapy. So far no issues.

Once all scans are completed and you know what you are dealing with you will be able to focus on the treatment and start looking forward. Treatments today are excellent and there is no reason why you won’t have a positive outcome.

Take care xx

So far no

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Thank you so much for your reply. It seems we’re quite similar. I’m getting lots of reassurance from you all and certainly now dont feel so alone. Please stay in touch with me and I know we’re gonna kick the crap outta this dam thing.

Hi I too have adenosquamous carcinoma.I was diagnosed in July.I have just had my first chemo 5 days ago.If you want to chat I’m here for you xx

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Thank you so much! I would appreciate that very much so… I’ve had a positive day until maybe an hour ago… feeling panicked just now… just trying to pull myself out of it

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Hi Shammy,

I was diagnosed with adenocarcinoma state 2b in August last year and went through the chemo radiation regime treatment. I didn’t have hysterectomy because it was spread outside of cervix and it wouldn’t be possible to be removed completely thus I would have chemo radiation anyway. My consultant told me back then that the limit for hysterectomy is below 3cm. I know it is frightening but the treatment isn’t so bad as it sounds and it’s only for 2 months. From my experience you can recover completely and put this behind you. Your consultant is right you are young and you can fight it!!!

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Thank you, I guess my initial reaction was just ’ get it out of me! Take it away!’ Panic stations… it’s all so much to think about. Hoping to hear more this week. I just need to know that a 5cm tumour can have its arse well and truly kicked by chemorads

A hysterectomy is not always suitable depending on size, position of the tumour. I know hearing that you need chemo/radio is hard but you can do this. I was diagnosed at 57 & my clear cell cancer was found following what should have been a routine hysterectomy. You are young & strong. You’ve got this.:two_hearts:

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Hi I was diagnosed stage 4A last year. Surgery was never given to me as an option despite being 38 when I was told. I got the all clear in April after I had 9 weeks chemo followed by 5 weeks combination then 5 days targeted radio instead of brachy. The not knowing what to expect was the worst for me. I only found this forum after my treatment finished so went through most of it alone due to lockdown. People on here are amazing and know a lot of information. Good luck with everything you have coming, we’re all behind you x
P. My tumour was >5cm……. You’ve got this!! :+1:

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Thank you so much. It’s really encouraging to read stories of sucsess. I am getting there with my emotions. I have good times and then get very down and just want to curl up and not speak. My husband has been brilliant and my boys have been quietly supportive, helping out with chores etc. I just want to get on with getting rid of it!

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For me from my diagnosis to my MRI was nearly 6 weeks but in that time my tumour almost doubled so everything moved quickly after that. I had a stint put in my kidneys 2 days after my results meeting along with my nephrostomy being fitted and started chemo 4 days later so try to enjoy the down time you have just now. Dragging my behind in to hospital every day Monday to Friday for radio was pretty tough on the days I didn’t want to get out of bed.x

Donnam16 I cant imagine the stress that would have caused! I’m lucky in a way that the pain of my stenosis made me collapse and was rushed in by ambulance. They had to keep investigating everything as I was screaming the place down for days in pain

Hi Shammy716,

I had a 5.1cm adenocarcinoma and was diagnosed in July 2018. My team of oncologists said they could only do surgery if the tumour was smaller than 4cm. This is for our own safety to make sure there are clear margins. It doesn’t mean there is a spread. The chemo rads will wipe any cancer cells in your body and my oncologists said it can be more effective than surgery sometimes and no doubt it achieves the same result as surgery. I was 37 when I got diagnosed, fit and healthy, lots of energy. And I continue to be like that almost 3 years after treatment. You can do this!

I was stage 1b2 and had 4 chemos, 20 rads and 3 brachys. My MRI and PET showed the tumour was in the cervix only. Feel free to contact me privately if you have any questions or just want to have a chat. The ladies on this site are amazing!

Stay in touch and remember, it’s a huge shock but you will be treated and come out the other side xx
Ladybug

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Hi Ladybug,

Thank you so much for your reply. As horrible as it sounds its reassuring to see that theres quite a few with circumstances similar to mine, who have kicked this thing to the kerb. I’m beginning to understand that this stage ( waiting) is nearly one of the worst with regards to the mental health aspect.

I was lucky enough to get a cancellation slot today for an MRI. That’s 1 step closer to the start of treatment.

Thank you again for reaching out and I will be in touch I’d say asking silly questions x

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Interested to read about your treatment. Was that for cervical adenocarcinoma?

@J_harri Hi! I havent started treatment yet. I’m still waiting on stage and planning. There are some lovely ladies on here who have.
Have a good read through other posts and you’ll find some info

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