Just diagnosed :(

HI everyone, 

 

I haven't posted for a couple of weeks, as I've been waiting for the results of the biopsy. I was called by my consultant yesterday at home - he confimed what I expected, 

which was that I had cervical cancer (adenocarcinoma, not the more usual squamous cell type) and that it was aggressive (grade 3). 

Surgery has been provisionally booked for the end of July (approx six weeks from now) pending the MRI findings. Presumably this will inform him as to whether I'll need chemo/radiotherapy.

 

I've got some questions that I hope someone can answer: 

  • How long did you have to wait for the MRI? Is it worth chasing the Radiology department? 
  • For those that had chemo/rad as well as surgery, which did you have first? 
  • He mentioned that I might need a vertical line incision, but that possibily the main hysterectomy could be performed through my c-section scar, with the high lymph glands removed laprascopically - does anyone have expeience of this?
  • Does the six -week wait for surgery seem reasonable? 

 

Thanks very much in advance

 

xxxxx

Hi Jenny, im very sorry to hear your news. Sorry I can't answer many of your questions but I had my mri 3weeks after diagnosis. It may be quicker for you as stage 3 though. I'm sure some ladies will be along to help you out soon! Big hugs xxxx

Thansk MAP - I'm not actually sure what stage I'm at yet - the grade 3 I think is in relation to the aggressiveness? 

Good luck and thanks for responding so quickly xxx

sorry to hear your news Jenny I had my colposcopy on the Friday my results and MRI scan on the Wednesday I was meant to get it the following Friday after my colposcopy but because I was so upset and distraught they brought it forward and I got my results 2 days later. If you can't handle the wait then speak to your nurse hun mine has beEn really helpful in speeding the process up xx

Hi Jenny

So, so sorry to read of your diagnosis.  The most important thing now is to get treated successfully.

I had my MRI a week after I was told and then had my Rad Hyst a month later - but part of that was due to my consultant being on holiday for 2 weeks at that time.

I had a vertical incision due to having a large cyst on my ovary.  Also had a fibroid on my womb!  They removed nearly 40 lymph nodes but that wasn't done laprascopically.

I didn't need chemo or radiotherapy so can't advise you on that.  However, that decision wasn't taken until the results of the op were known, not after the MRI.  I think in some cases they can tell after the MRI though.

Wishing you lots of luck with your treatment, we'll all be here to support you.

Hugs, Cheryl,xx

hey hun. i was grade 3, adenocarcinoma. i had my mri within a week of my biopsy results. i had a TLRH with ovaries taken and lymph node dissection. mine was all done keyhole so i recovrrrd teally well. i had to wait 4 weeks for surgery after diognosis. after the pathology was done i decided after much deliberstion to go ahead and have RT 25 blasts as my tumor had some rareties to it and LVSI was present. i wish you luck hun. any questions feel free to ask. i remember the awful feelings all to well. thingd will move quickly now . love lea xx

Thanks everyone, 

I think the only thing to take from people's comments is that everybody's case is slightly different. Lea can I ask you - did you have symptoms?

I'm petrified that as I'd been having symptoms for 6 months to a year AND because it's the most aggressive type, that it going to have spread...

I know it sounds really vain, but the other thing that's really worrying me is the prospect of hair loss :(

Thanks everyone again xxxxx

hi, yes i had symptoms, bleeding after intercourse, abnormal discharge, back ache, needing to pee alot. i originally went to gp feb last year and was fobbed off due to my smears being up to ddate. i was diognosed oct 31st halloween. how appropriate lol,  i had a massive bleed in aug and was sent app for scan in oct. all in all its been one mess up after another bit im still here. as for chemo i decided not to have it after many talks with oncologist. you will be eorried as you are at the start of your journrey.it will get eadier and the women on hete are all fantastic xx

Hi jenny. I had my MRI about a week after initial diagnosis and yes that gave more information about surgery or chemo rad. I opted for surgery. Full rad hyst by keyhole. Recovery was about 8weeks and very manegable. You are right though everyone is different. 6 weeks might seem like a long time but it will fly. You will get your head round everything and put a plan in place to make everything go as smoothly as possible. Your care team will be vital, gp, district nurse and MacMillan. Ask them any questions, the only daft one is the one you don't ask. We're all here for you.

Karen x

Hi Jenny

Sorry to hear this, i had MRI scan 2 weeks after diagnosis, then operation within 28 days, i was told they have a time limit of 31 days to get you in and get you sorted when you have cancer, i wouldn't want to wait 6 weeks, personally i think it's too long xx

Hello

So sorry to hear your news.

I had an MRI/CT scan a week after diagnosis and also waited a total of 6 weeks for my surgery.  It took several weeks to even get a date which was torture :(  According to guidelines they have to treat you within a certain time period - it was more like 56 days from memory.  I rang the Macmillan helpline and they called me back later that day with all the information so you could always give them a try if you think you are outside of that time period.

Armed with that information I called my gynae-oncologist to complain that I was nearly outside the nhs guidelines and was really struggling not knowing when my surgery would be.  I complained that with 2 children I had childcare to arrange and was not happy with the delay I'm sure I also shed some tears.  My nurse called back with my surgery date the very next day.

However, while I had spent a lot of time waiting and worrying the date came surprisingly quickly and I didn't feel ready on the day.  My advice would be to keep calling them if you feel anxious and keep yourself as busy as you can while waiting.  I understand how you must be feeling though and that this will be difficult.

What worked best for me was taking control back where I could and preparing for the surgery / treatment by researching and buying everything I would need and chasing people when necessary.  Oh and lots of DVDs and computer games to occupy the mind!!!

Good luck and best wishes

Kirsty xxx

 

Hi Jenny

I also had the adeno type of cancer - and was diagnosed as stage 2B

I had my biopsies done on the 9th Dec, had m first consultant meeting with the biopsy results on the 16th Dec and the MRI on 19th Dec.  I received the full diagnosis on 24th Dec and then had various planning meetings, CT scans etc and started the radiotherapy in early Jan

For me I had chemo/rad then surgery - this was because of the siize and position of the tumour and that they didnt think they would get clear margins.   Initially I wasnt going to hae surgery, but the radio and brachy were so successful that I didnt complete the treatment plan (oncologist advice) and went for surgery.  The reason was to protect the other organs.... 

If you have concerns about timings - I  would chase the hospital .... I did and it helped to understand the timings etc....

Good luck

Tracey