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Feeling overwhelmed awaiting information.

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catmadwatts89
Feeling overwhelmed awaiting information.

Hi guys,

I'm not one for usually writing in forums, and certainly never thought i'd be writing about this.  i'm sorry for waffling but i like for people to have all the information and understand it.

I'll be 31 in July and no children. 3 cats and partner of 3 years in July.

i have the mirena coil, second one i've now had for over a year. All fine.
No periods which since having the coil is normal, nothing abnormal, except a little heavy discharge but put that down to hormonal.

Regular smears since 25, all healthy and ok.
Went for my current smear January 2020, letter back to confirm HPV - basically abnormal cells and to have a colposcopy.

Called to clinic February 2020 for Colposcopy - Dr/Consultant thought it could be CIN 2, but wasn't sure and showed me on screen what the HPV looked like. Took a biopsy and sent results off.

March2020  received a letter saying CIN 3 and including treatments. Due to covid 19, not able to get in to get coil removed but the clinic helpline said i could keep it in and if need be the dr would simply snip my strings.

1st Apri 2020 l i had the letz procedure, cells removed sent of to be tested, cervix numbed and strings of coil snipped. Dr was surpsied with results of CIN3 but we agreed this is why we have these tests in place to identify it early. It felt like a sharp period pain when she numbed cervix first couple of times after that - didn't feel a thing. Felt fine afterwards.

21st April 2020 - received a call, explaining basically due to covid 19, wouldnt usually do it this way but tryingt to limit people going to the hospital. was i happy to continue. I was asked my understanding so far, it was then confirmed test results showed it was cancer. they think they got it all but theres two options to have the letz procedure repeated to be doubly sure or hysterectamy but lots of things are facted in first before this happens. I said i was happy to have letz procedure done again and a bit more of my cervix removed. I have to have an MRI scan to check it hasn't spread and check my hips/lypm nods? She mentioned something begining with A and small. She then went on to say i'll have MRI as soon as possible then lets procedure in 3 - 4weeks which is about right as they advise 6 weeks healing process. once scans are back a multi displanry team gets together with myself to discuss options. She said scanning department would get in touch and i'd get everything in writing.

Scanning department called within 15 minutes and i am booked in for Thursday 30th April to have a full MRI and chest x ray too.

So i've told my parents, my partner and a couple of close friends. I've told everyone not to panic until we get full information so we can handle this,

My questions are really - has anyone else had the same experience?

How long after  MRI scan - did you get full information/diagnosis?

Should I discuss my fertility options?

Thank you in advance.

Take care and stay safe.

 

LaurieBeth

I am in the United States so my timeline and yours would be unlikely to match, but I did want to reach out and tell you that I am really sorry that this has happened to you. Last year I had a cold knife cone biopsy for CIN 3 that came back cancer free with clear margins. I had a horrible doctor, just odious and awful and he said he advised a husterectomy "because you are over 40 and done with kids, so we will just take it out." I sought a second opinion who felt we could monitor it closely and be fine. I had a pap 4 months later and had CIN I, four months later still CIN 1, six months later CIN 3 and and a Lietz--turns out it was now cancer. To say O was shocked and horrifed would be the understatement of my life.

My doctor was completely shocked I had cancer. The oncologist also was shocked. I am now awaiting a radical hysterectomy that will stage the cancer. i had a scan that showed no suspicious nodes or evidence of spread and was the next day then booked for surgery (a delay to heal from the Lietz and due to COVID).

The waiting is agonizing, but it sounds like they caught this very early. My oncologist said this "we cure early stage cervical cancer. That is just what we do."

So, I don't know what your treatment plan will be, but take heart in that.

Sending my best energy your way.

 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

noodlesdoodles

Hi,

its a tough situation to be in and my heart goes out to you. No-one expects to be in this club and then you are. It is hard to find out through a phone call and the shock is very real and vivid. No matter how you find out it can be overwhelming, frightening and bizzare as in a moment the world has changed as you know it, never mind with Covid 19.

It is usual to have a scan and they are pretty quick at getting you them. After the scan, the MDT will look at everything and decide the very best way to proceed for you. They may decide to do other scans, EUA ( examination under anaesthetic) and then will talk to you about a treatment plan. I had a CT scan within three days of diagnosis, then an MRI and an EUA. I was worried about the EUA but it was fine, no pain, no after effects apart from wearing TED stockings in a heatwave!

Waiting for the plan is often the hardest part but you will get through this and it sounds like it might be early stage if they are talking another LLETZ or hysterectomy. It’s a tough place to be where you are right now so treat yourself with kindness, use the forum and Jo’s for extra support and know that you have got this.We are all here to help. Wishing you all the best xxxx

 

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema

More Information

Cervical cancer