Hi, So I'm a new to the club no girl wants to join :( Had abnormal smear 2 wks ago, taken into hosp for colposcopy & told there & then that something wasn't right. Doc took biopsy & results this week confirmed cancer - the lesser common Adenocarcinoma. Already had a chest X-ray which confirmed lungs not affected (what a relief) and I'm booked in for MRI on thurs 30th, next week. from that they'll grade the b@stard & let me know what treatments I'll need. I'm 31, married, no kids and very nervous/upset at potential loss of fertility. Have heard the trach op or cone biopsy oly suitable for a few so I'm bracing myself for full hysterectomy. :( Anyone having a similar experience? Anyone else being seen by the team at [hospital name removed]? Apparently that's who'll be looking after me.
… So would be good to talk to anyone who has experience of this team, or indeed Adenocarcinoma.
I was diagnosed with 2B Adenocarcinoma at the tail end of 2010. It is less common, but treatment is the same. You are lucky as it sounds as if it has been picked up early…it isn’t always picked up with a smear alone. The waiting for all the tests and results is by far the worst bit…
Hi BusyBug/ Ceri,
Thanks for your reply. Is your treatment complete now? How are you? What treatment did you have?
Would be keen to learn from you if you don’t mind sharing. 2b is kind of mid-way right?
I’m hoping & praying they found it early. I missed a smear so kind of relieved to hear that the smear doesn’t always pick up this type, I could do without guilt as well as the other feelings!
I was diagnosed with 1B adenocarcenoma in Dec last year and had a cone biopsy / lymph node dissection (which is fairly standard) in Feb, then needed a trachelectomy in shortly afterwards as the margins weren’t clear. Got my 6 month check up on Tuesday but all seems to be going well, despite a few scars.
Like you I’m young, married and have no children so it was devastating when I got the news. Always ask about the possibility of a trachelectomy - a good consultant should refer you if they think you’re suitable and think it’s been caught early enough. Your MRI should enable it to be staged so you’ll know much more about where you stand after that.
Unfortunately the waiting between scans and appointments and results doesn’t seem to get easier and the initial shock of being told you have the big ‘c’ is not an easy thing to get over. There’s a great deal of support on here but make sure you take the support of any friends and family you choose to tell as well.
I had 5 sessions of chemo (cisplatin), 28 external radiation and 5 internal radiation sessions - I finished treatment Dec 23rd, 2010. It’s not easy, but generally easier than you imagine. There were some bad days, but also many OK days, and the 5 weeks did seem to go surprisingly quickly. At my smear, my GP could see my tumour, and at colposcopy they pretty much confirmed that I had CC. A stage 2B means that the tumour is too big to remove by surgery and that there has been some spread from the cervix. I had a possible lymph node that it had spread to which sounded awful until I researched the vast numbers of lymph nodes we all have in our abdomen. I have had side effects from the radiation since finishing treatment, but have been back at work full time since last December. I was 48 when diagnosed and so had completed my family…I think it is much harder when you are diagnosed in your 20s.
Hope this helps - do PM me if you need further info/answers,
Hi Ceri & Lisa,
Thanks so much for sharing, it’s really helping me to hear from ppl who’ve been through it.
Its a waiting game for me now until the MRI scan & results. Hosp seem to be moving things forward really quickly so I’m lucky that the wait is minimal.
If my tumour is small enough I’ll definitely look at the trachy route, but my husband and I have agreed that I’m the priority, so we’ll do whatever fixes me. I know I’m in for a tough time but from the stories shared here I know I’m not alone & that ppl get through this.
Really appreciate you both sharing your stories/treatments. I’ll keep you posted.
Lisa x x x
Update for anyone following my story, or anyone in a similar situation which this may help:
MRI clear (‘bulky’ but likely from biopsy).
Graded at G1 (least aggressive) & staged between 1a1 and 1a2 (due to size - 7mm x 4mm)
Cone biopsy & lymph node dissection booked for 04.10 as fertility saving treatment. As long as no spread to lymph nodes, no further treatment. If any lymph node involvement, then radio/chemo required.
Please cross everything for me & my lymph nodes!!
Anyone in a similar situation please feel free to contact me for info/advice.
I was diagnosed with 1b1 adenocarcinoma (smears always been normal!) in Sept 2010 at the age of 28 and was initially told I would need a hysterectomy. Like you I have no children and the thought of losing my fertility along with dealing with the big C was really hard to take in. I pushed my local hospital for other options and in the end was referred to Barts who were FANTASTIC. I had a trachelectomy after a preliminary op to check suitability in nov 2010 and touch wood since then all has been ok.
My advice would be to ask as many questions as you can and ensure you ask all options to be considered. If there is anything I can do to help, answering questions etc please feel free to pm me.
Wishing you all the best and have fingers crossed.
Quick update for anyone following or anyone finding themselves in a similar position:
Had my cone biopsy & lymph node removal yesterday. Op went well & I felt surprisingly good when I came to, altho I was hooked up to lots of machines. 24 hours on I’ve had everything (drip, morphine, anti-bios, oxygen & blood pressure monitor) removed, out of bed and showered myself & am ready to go home.
Tummy is a little swollen & sore, but on the whole I feel great considering.
Hope this might help anyone preparing for similar treatment, it really is ok.
Anyone with questions I’m happy to share info.
PS I’ll know if op a success and no cancer spread in about 2 days but my surgeon couldnt see anything bad visible to naked eye…
Well done on getting through it. Take it easy especially over the next few days and you might find you swell up a bit more. Hoping you will get good news in a couple of days and won’t need a trachelectomy. Btw you sent me a message a while back and i naughtity didn’t reply. Just to say i got the all clear from my six month post trach check up so all is good. Lisa
I’m so pleased the surgery went well - fantastic news! Take it easy and relax at home. You deserve a big treat… and some pampering!
I’m sure you won’t need it, but good luck with your results. 2 days for results is quick, I’m glad they won’t keep you waiting long You’ve been amazingly strong and an inspiration to me.
Thank you so much for all your support, it’s made a real difference.
That’s great news, delighted to hear it has all went so well and you are recovering well. Will be thinking of you over the next few days, let us know when you get your results x
Oops I meant two weeks for results, not two days, must have been been over excited from the morphine when I typed that!! Had a nice long sleep in my own bed last night, was quite sore & uncomfortable when I got home and got quite upset as I struggled to get upstairs and in to bed but feel much better today. I guess I need to take it slow and steady. Thanks for all your good wishes and kind words. Lisa x x
Ah Leecylou I’m so glad you got the all clear, fab news. X
just to say I think you are incredibly brave and I wish you well in your treatment etc. So many really inspirational ladies on here who we can all learn from (in a positive way) and I just hope I can cope as well should the news not be great…
Look after yourself
I did think 2 days was a bit speedy!
Make sure you do take it nice and easy. You’ll get better in time and there’s no need to hurry. I spent several days sat snuggled up in a blanket on the sofa with the cat after my op - and I think it did me some good. However, after just 5 days at home I am strugging with daytime telly and don’t want to see Helicopter Heroes or Homes Under the Hammer for a good while to come! I don’t know how long it will take to recover but it might be worth recording some programmes over the weekend to watch during the week.
It makes a huge difference to be in your own bed, glad you had a good long sleep and I’m sure you were a lot more comfortable than in hospital. No doubt the food is better at home too I hope your partner is taking good care of you.
I’d advise keeping up with the pain relief and taking Ibuprofen and Paracetamol regularly. I’m still finding I struggle if I accidentally miss some.
You will get better and better every day, each day a step closer towards a complete recovery. Just stay strong for a little while longer and you’ll be just fine. I’m proud of you.
Lisa so pleased you are out and recovering!
Fingers N toes are crossed all clear, but sounds good from what your surgeon said, they wouldn’t usually say anything if not pretty sure of themselves!
I have this to come but can’t come quick enough want it out thank you!!! :0)
Lovely that you are keeping us posted…well done and rest up!
Best wishes and a big virtual hug!!!
Bex x x
I wanted to update for anyone who's following my story, or anyone facing a similar diagnosis...
I got the all clear last week
The cone biopsy removed all the remaining cancer/pre cancer cells and all the lymph nodes that were removed were not compromised - so no further treatment required.
I still can't quite believe that the nightmare is now over for me, or that I got off quite so lightly. It's strange as you expect to want to swing from the chandeliers, put on a party hat and go crazy when you get such good news. But the reality for me has been a simple feeling of relief. I guess it takes time to get used to the idea, I had braced myself for further treatment, and am so pleased and relieved I don't have to have it.
I guess the celebrations will come, but for now I feel like I need lots of rest, lots of quite time, and time alone with my husband to reflect on what we've been through. I think the emotions and stress from the last few months are now coming out too as I'm still having up and down days. I'm OK with that though, I guess it's natural to feel sad atg what has happened. I still feel terrible for having inflicted all of this terror on my nearest & dearest too. I've been incredibly lukcy to have a huge amount of support from a large amount of fiends and family throughout this journey, but I now feel like I just want to get back to normal - and stop discussing my private bits with everyone I know!!
I wanted to update here as I feel that my story, although scary for me, might be a beacon of light for ladies with a similar early diagnosis. A simple operation and I'm fixed - I hope this is the case for many more early diagnosed girls, cancer does not equal death, and in my case it did not equal chemo, radio, fertility loss and all the other things I expected it to upon my diagnosis. I hope that gives some hope to the girls out there who are Stage 1. I know it's not always possible to 'get away with it' like I have, but it is possible, and I want girls just starting out on their road to know that; maybe it'll help calm some of the fears that I know you're facing.
I promise not to be a stranger to the forum, and am here to help & support any ladies I may be able to. I'm considering taking part in the Himalyas Trek next year.... I'd like to give something back the to the community that's been a rock throughout my journey.
Thanks for all your support, and I wish each and everyone of you strength on your own journeys. Be strong, but bon't be afraid to ask for help when you feel weak.
Lisa x x x
Hi Lisa, amazing news and your lost truly brought a tear to my eye knowing the worry and upheavel you will have been through … let us know how you are getting on wont you as some of us will be around for a good while yet in the forum! Am so glad the nightmare is over for you and hope to hear those same words early in 2013! Take care and thanks for sharing xx