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Just waiting....

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catmadwatts89
Just waiting....

Hi,

im newly diagnosed and just had my MRI and chest x ray today. Second lletz procedure booked in for 21st May. 

does anyone know how long the wait is for the results from the multi disaplinary team? 

I had my letter confirming everything that was diagnosed to me over the phone. 

Bit of a limbo currently thank you

 

FeelingTheFear

Hi catmadwatts 

Sorry to hear your news. I hope you are riding out the inevitable rollercoaster of emotions, it's something I'm working on at the moment, I got my MDT meeting outcome yesterday which was 1 week after my scans.

In my hospital the MDT meet once a week, my CNS told me which day the meeting would be and made sure to ask the consultant to call me straight away as I've been very anxious. Hopefully you have been given a contact number for either your CNS or your colposcopy team, you could ask them what day the MDT takes place and which week you can expect your case to be discussed.

All the best x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

catmadwatts89

I'm sorry to hear your news too, yes rollercoaster of emotions but until I have my scan results I don't want to panic too much. I hope you are okay and make peace with the rollercoaster of emotions .

ill have another read of the letter as I'm not sure I have been given contact details. So it's just a bit of a waiting game. 

if you don't mind me asking what treatment options have they discussed with yourself?

FeelingTheFear

Hello,

On your appointment letter even if it has a number for the appointment team/reception, you could try calling that to ask if a nurse can call you back and explain when the MDT meeting happens and how you will be likely to hear, whether it's by phone etc. I have been a bit of a pest throughout my process but it has helped me in feeling I have a little control, when I know when I can expect to find the next piece of information. My team have been happy to do this for me. They say some people want to just go about normal life and others want to know every little detail. If they know how you want to approach the issue it gives them the best chance to support you, so do reach out to them.

I am currebtly 1b1 which would be treated with trachelectomy or radical hysterectomy. Before my scans they estimated at 1a2, which was with similar treatment options but more towards trach. Now Im 1B1 they are leaning more towards RH. I've got a few days to decide which surgery I want. They will definitely be removing as many lymph nodes as possible too. Fortunately they arent worried about the ovaries so they get to stay...

I'm a bit gutted as anybody would be, because we all want the least amount of treatment possible that will get us back to normal! And in all likelihood the best option for me is radical hysterectomy, so I wont get to have any children, which at times is weighing heavy on my heart. But it's all about priorities. I have a wonderful husband that is such a blessing to me and I want to be around to have a happy healthy life together

Hopefully you can find some info soon, I'm sure they will be happy to share with you. It's awful when you're in limbo, I couldnt bear it, and that's why I became a pest! But they didnt seem to mind. I dont think. Haha x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

catmadwatts89

im so sorry, it sounds like your very switched on and glad you pestered them but at same time of course it's going to weigh heavy on your heart even if you hadn't thought or planned for kids - you have a lovely husband and your health I know that's the important things out of all this - but I know it's not the same so if you please grieve and feel every emotion xx here if you need a chat xx

catmadwatts89

I've just spoken to a health care assistant, my MRI results are back in but they'll be discussed when I have the second lletz procedure, that is booked in for 21st May but that's all they could tell me. It's worse knowing my MRI is back but didn't give me an option for someone to tell me what they. 

FeelingTheFear

Hi catmadwatts 

Good for you for taking the initiative! Well done. Bit frustrating for you I know, all the same. I am definitely not an expert but if I were in your shoes I would take reassurance that the MRI is in and they are going ahead with a 2nd LLETZ and there hasnt been any change to that plan.

As I understand it the MRI would show them if you had a residual tumour, and where/how big it is, any enlarged lymph nodes, and also how much cervix you have remaining which reassures them that further LLETZ can be done safely. 

You'll be feeling so uncertain and craving for more info, I know I was, so as much as it's easy for me to say, try and take a deep breath and relax, everything is going along exactly as they expected, and that is good :-) 

Take care x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

More Information

Cervical cancer