I have recently been diagnosed with stage IB1 adenocarcinoma cervical cancer after a second cone biopsy, MRI and CT
I was diagnosed with adenocarcinoma insitu and treated with a cone biopsy back in 2010. Its scary that it has come back, and at this stage and yet I was having annual smears done to watch for this.
My oncologist has recommended a radical hysterectomy, including ovaries and lymph nodes.
I have noticed that some ladies with similar diagnosis have gone on to chemo and Rad treatment, so Im a little confused as to why I have been told I need to have the hysterectomy?
Im very worried about having the lymph nodes taken out and taking on risk of Lymphodema, has any one experienced this & Does anyone know what hte risk percentage is?
Obvoiusly also worried about sudden menopause. - Im 41, and luckily had my 2 children, but worried about mental state and how much it will change me.. let alone the 1/3 of my vagina taken :(
Does anyone know if this treatment a bit harsh for my staging?
Thank you for any advice. Im so glad to have found this website, and know Im not the only one dealing with this thing.
Im from NSW, Newcastle - Australia
Hi Hun, I was as a different stage to you however I'm 3 weeks post radical hysterectomy with ovaries and lymph nodes removed. I find out the results of my lymph nodes tomorrow (keeping everything crossed). i think if you are unhappy with the surgery talk to your specialist and ask why they are recommending you to have surgery. I was so glad to have everything taken out as it removes the chance of cancer returning to those areas. if you have any questions regarding the surgery and recovery...etc please don't hesitate to message me xxxx
Hi. Radical hysterectomy seems to be the usual course for 1b1 cc. Sometimes they will leave the ovaries, meaning you wouldn't hit menapause - but this is judged based on personal circumstances and risks weighed up, but might be something to quiz your consultant about. I had adenocarcinoma and was pencilled in for a hysterectomy, but then a PET scan showed an enlarged lymph node so it was straight to chemorads. Sometimes after surgery chemorads are needed, if the lymph nodes test positive or there weren't clear margins on the tumour removed - but this is not common as they try very hard to get it sorted with one treatment. Personally I've found menapause ok - I'm actually a lot more stable emotionally than I was and don't get run down each month. The hot flushes and disturbed sleep are a pain, but settling down. I know everyone is different, but it's not necessarily the awful thing we expect - and definitely beats cancer.
sorry you have found yourself here but this is the best place for you to be.
with your stage and type of cancer the standard treatment is a radical hyst. When they remove the lymph nodes it is to check for any microscopic cancer cells that would not be able to be detected on any scan. If any lymph node comes back positive then you would go on to also have chemo rad afterward.
Smears are not 100% and can miss abnormal cells especially with the type you have.
Menopause is different for everyone but as pp mentioned better then having cancer. I actually don't mind it at all, nice to not have highs and lows and the monthly visit. The hotflashes can be controlled with natural supplements or by a prescription that is not HRT so it's just a matter of finding what will work for you.
As for ovaries being removed this seems to vary greatly as some dr leave them and others do not. Some believe that hormones can contribute to this cancer others believe it does not.
Regardless if you went straight to chemo rad you would still be at risk for lymphodema and you would still experience menopause.
I hope this helps a bit.
Thank you all for your kind words and comments, now I think I recall he mentioned at our appointment that he is concerned with it being glandular, that it may turn up later in ovaries. The visit was such a blur.. Im not so scared of the meopause now, having read more on this site and just hope it hasnt spread to the lymph nodes. Just feels like a bad dream.. xx
sorry to hear your news , I also have the same as you and same staging . I have my radical hysterectomy on Tuesday 27th with ovaries and lymph nodes removal, I think if you have early stages they like to do this procedure . I was given the choice if I wanted to keep my ovaries I decided I wanted them removed . I have to go back two weeks after the hysterectomy for results from biopsies that will decide if I need to have chemo and radiotherapy , the waiting and the not knowing seems to be the hardest part . I wish you all the best and here if you ever want a chat x
Hi Kriss, sorry that you had to find yourself here. As the other ladies have said, hysterectomy is normal treatment for 1b1. I had mine a couple of weeks ago, and apart from a little setback over the weekend where I got some sort of gastro bug am recovering well. They asked if I wanted to keep my ovaries, and I said yes as I'm only 40, but mine was SCC, and they said if it was glandular they would have taken them. My lymph nodes were negative, so I don't require any further treatment, but if they had shown something I would of had radiation. Hope this helps, I am also in Australia if you want to chat. xx
Im so happy for you that you dont need any further treatment and it hadnt spread to your lymph nodes, and its also great that you are recovering well from the hysterectomy. I now think its best to take my ovaries as my cancer is a bit different to yours, Im just going to suck it up and be greatful it cant come back in my ovaries if they arent there! Im 42, had my children, and thinking I can cope with this xx
Im wishing you all the very best for Tuesdays surgery, Im exactly one week behind you.. so Ill be definately be checking in... Take care and sending you loads of positive vibes for a quick recovery and best outcome xxx
you can do this we are all strong women on here . I'm 41 have 3 children was a easy decision for me to have my ovaries removed . Must be so difficult if you still wanted a family . My hospital bag is almost packed , I feel ok at the moment but sure to be a nervous wreck on Tuesday . Wishing you all the best on your journey will look forward to reading your posts xx
Hi Hun, sorry to hear your cancer has come back,
i also have adenocarcinoma and I'm stage 1a2, I'm booked in for hysterectomy on the 18th July and I've chose to keep my ovaries, they are taken lymph nodes though, I'm also concerned about lymphodema but I know they could be a small change a cancer cell could have travelled there so I'm not wanting it to come back.
good luck with moving forward and fingers crossed all works out with treatments etc xx
Hi, I was 1b1 too and had the radical hysterectomy with lymph node and ovaries removed. My consultant told me that it wouldn't be too long before I hit menopause (I'm 48) and said ovarian cancer is silent so it was best to remove them while he was taking everything else! I went straight on HRT and haven't had any problems with it.
It does feel very invasive treatment but if the nodes and margins are clear you hopefully won't need any chemo or rads, I am thankful of this.
Have my 8 month check up in two weeks and have to admit I am really nervous but everything has been positive so far.
good luck xx