Looking for any help or advise - newly diagnosed

Hello,

I’m just turned 37year of age and Mum to two little boys, 1 & 3 years. Its been really great to find jo’s trust and reading all your posts, then have given me lost of hope. Last Thursday I received a diagnosis of Cervical Cancer, its Adenoid Carcinoma. I have always had normal smears and had a smear in early December, the results came back on Christmas eve CN1 and i was referred in to the hospital coloscopy clinic.

The consultant reassured me that all was well it was nothing to be worried about as I was only CN1 and he felt this change was due to me breastfeeding. He did not perform a Letz on that day as I have an Incompetence Cervix, I have lost a baby and had a cervical stitch to carry my two boys. He told me after a Letz the probability of a stitch holding after a Lezt was very low. He asked me to think about this and they took a biopsy. I then received a call a few days later to go back into clinic to meet consultant for my results. The consultant just kept apologising for reassuring me that all was well. He said I have a rare form of Adenoid Carcinoma and the tumor is higher up in my cervical canal. I met my oncology Nurse at the appointment and she had already scheduled my appointment with a Consultant for next Thursday. I am having an MRI & bloods on Wednesday and a PET scan on Friday and she is currently trying to schedule time in theatre for an EUA. She thinks all should be completed in two weeks and a treatment plan in place then. The consultant is [Name of Dr removed] in the [Name of hospital removed] and he has good results. He only uses one treatment type per case, depending on the results of the staging.

I really feel in limbo land right now and I’m trying to stay in one moment at a time for my little people. I have a few questions if you could help answer please.
How can my smear results show CN1 and the biopsy shows a Tumor?
Can anyone tell me about adenoid carcinoma?
Does anyone have any advise about gently weaning from breastfeeding and when to start this?
What can i expect going forward over the next few weeks?
What about one method of treatment either surgery or radiotherapy?

Thanks so much for reading my rambling’s, I’m not really too sure what to think or feel. I’m just numb one moment and a crying mess the next.

x

Hi Sharon!

Sorry you've found yourself here but the ladies on this forum understand exactly how you feel, so we'll try to help you as much as we can.

Firstly adenocarcinoma is a type of cancer found further up in the cervical canal, it's just the different type of a cell and is not as rare as it used to be and at the moment they say accounts for about 20% of cervical cancers. 

The reason why your smear came as CIN1 is probably because it didn't reach up all the way into the canal and so only the cells on the surface of the cervix were collected. If you try and find some positives in this situation then it's the fact that the consultant decided to take a biopsy and managed to get it from the right place, otherwise it could go undiagnosed for much longer..

Adenocarcinoma is treated in the same way as the more common type of cervical cancer, so it doesn't make your case worse in any way..

Most consultants treat it with either surgery alone or chemoradiation depending on the spread and size of the tumour. Most ladies had either or..  Normally surgery alone is used up to stage 2 if there's no spread to lymphnodes, they are normally removed and tested after the op to be sure they are clear.

By the sound of it and as you had no symptoms it could be early stage and in any case cervical cancer is curable and relatively easily treatable so please try to stay positive and do write if you feel like it or have questions.. We all know it's a scary time..

Hugs

Anna

 

Thank you so much for the reply Anna, your responses are very reassuring. Even reading through the treatment post, i know it all doable. I had a few changes in aug/sept just excessive cervical mucus, spotting between cycles and long heavy periods (there were always short and light). This is why I requested a smear. It was all a bit of a blur as all happened so quickly, I dont think i took in half of the information. I need to speak with the nurse again on Monday. Could you tell me when in the process they know what grade the cancer is? they have only talked about the staging.

Thanks again x

Hi Sharon :-)

Anna has said absolutely everything that I was going to say :-) The staging is the important part 1 through 4, and you are sounding closer to a 1 than a 4 which is great news. The grading might be of some relevance to the doctors but it is of little relevance to the patient, I have no idea what mine was, so they may well not even bother to tell you.

Be lucky :-)
Tivoli

Just PM-ed you x

Hi Felliecain I am so sorry to hear about your situation but welcome to Jo's Forum. I hope we can help support you through this time in Limbo. I am from Northern Ireland but live in Cumbria so I know about the [Name of hospital removed] it is a Great Hospital with great doctors. I have had all the tests your talking about but just not as quick as you I hope you can take some comfort in that. I had symptoms for over a year they put it down to the Menapause i am staged at 2B. [Name of Dr removed] is going to fight your conner he/she wants you to do well and so do we. Keep in touch if you have any questions we are here for you. Lots of love XXXX

Hi Sharon, I'm a Sharon too and have just been diagnosed similar to you, cgin adenocarcinoma. My smear and colposcopy showed cin3, thankfully dr decided to do lletz and they found my tumour at the edge of the tissue they took out, thankfully!  I'm still waiting for a date for my mri.

all the best for yours next week, my gp has given me diazepam to take before it to relax me. You mit want to think about that too.

we are all in good hands now x

Hi there, I was diagnosed with small cell adenocarcinoma 2 and a half years ago, my smears were clear, as Anna said it grows further up the cervix so mine wasn't picked up. I am currently NED and am feeling in a much better place now. I have recently been put onto 6 monthly checks. Once you have a staging then things move quickly and a treatment plan is put into place. Sending you hugs, lea...xx (don't google, it's not your friend atm and most of the information is outdated)

Thank you Kumagill, its very reassuring to not feel so alone. Wishing you the very best with your treatment x x

Thats so true Sharon, thank you x We are in the best hands now and thank goodness we now know. My MRI is on Tuesday, I had a PET Scan on Friday and it wasn't too bad. Wishing you a quick appointment Shazzal and I'll chat to you on here x x

Thats amazing news lbooker, I'm dreaming about that already. Thank you for taking the time to reply, you have lifted my spirits this evening. It always when i'm alone, kids and partner in bed, it hits me hard and i feel very alone. Thank you so much x x

Hi Feileicain How are you? I am thinking about you keep us posted we are here for you xxxx

Hi, I didnt want to read and run so want to wish you well, I had the all clear last month and know full well like all off us on here what a awful time it is, the staging is the worst part, the not knowing is what I found hard. Even when I was first dianoised they told me I was stage 1b1 but had to have a MRI,ct and EUA to double check. I was scared as hell about the EUA so just want to reassure you that its pain free, I had it under a general as you will I would think, when u wake up there is no after pain at all so really don’t worry.
Best wishes
Jo