I am new to Jo's Trust.
I think I may be in an unusual situation but am interested in finding out if there are others in the same boat.
I had cervical cancer in 1997 at the age of 34. At that time I was diagnosed with an aggressive glassy cell adenocarcinoma which had metastasised into 5 lymph nodes.
I was successfully treated with Werteim's hysterectomy, chemo and RT.
Twenty years later I had bleeding and have been under investigation again.
I have now been diagnosed with cervical cancer again! However, it's not a recurrence of my previous adenocarcinoma but a brand new squamous cell ca which has developed in the scar tissue.
Because I have had all the treatments before, seemingly the only treatment left open to me is pelvic exenteration. However, my care this time around has been very sluggish (another story!) and I have not had the opportunity to discuss this with anyone yet.
So is there anyone else out there that has had twoi types of cervical cancer.
Of note also is that I have the BRCA2 gene and have had a double mastectomy for that.
Hi Karen. Welcome to the site. When there are no words of wisdom available then what we can offer is support. I read your post with some shock to think that CC could come back in a different form and different place post surgery. I can only imagine that you feel gutted by the news, after what you have been through already. I have no knowledge of such things, but I do know when there is reoccurrence that women are often offered a different type or combination of chemo drugs, so perhaps that is a possibility before you begin thinking about the next option. I'm sorry that your treatment seems to be so slow, just when you need answers. Please stick on the forum and get support from us all. Even though moSt of us will not have been through your journey, it's just good to know there is a place to vent and be heard. I wish you all the best in getting some speedy answers.
I'm from the other side has i had recurrence and I know of a lady on that side who has had the big op your talking about a lady called Cara I'll send her a message to talk to you
I know it's a massive op but if it keeps you here take that opportunity
love Michelle xx
I had a total exenteration July 16 and although recovery wasn't easy and my cancer has since returned (margins were very close) I would do it all over again given the chance. It's definitely worth it. A lady on here had it done 10 years ago and she gave me support both before and after which I really appreciated.
Please don't hesitate to get in touch with any questions.
Love Cara xxx
sorry to hear about your recurrence, must be hard especially after so long. I had a total pelvic exenteration 11 years ago after my second recurrence, it's a big operation and takes some getting used to but well worth it I certainly wouldn't be here now without it. If there's anything you want to ask please contact me I am always happy to give any advice I can.
Love Julie xx
Thanks for your reply! Yes its very strange to have it twice! Progress with treatment has been very slow and its only tomorrow that I get to meet the surgeon. I will ask him if he knows of anyone else who has had it twice. The gynae-oncology nurse thinks it may be a radiation induced tumour and I think That's probably
a good guess!
Its definitely the total pelvic exenteration they are considering. I'm not sure whether any chemo is an option. I turned out to be allergic to cisplatin! There's luck for you!
I am sorry to hear about your recurrence. How are you doing?
Thanks for your reply. I am sorry to be so slow in replying, but the answers only came today even though I know you replied last week.
I am going to speak to the surgeon tomorrow for the first time, although I understand that I am booked in for the 12th December for exenteration. Can I just ask where you had the operation carried out?
Also did you have any reconstruction done? I'm mostly interested in the marital bits!!
Well done Julie!! Are you the Julie that features as a case history? If so you are looking fab!!
After I finally get to see a surgeon tomorrow I expect I will be bursting with questions. You may hear from me again...
Thanks so much and sorry for slow reply which I think is a foible of being identified as a real person and not a robot! Although that said, I have so many parts missing now that my status is probably uncertain.:)
Sorry, It's Elaine I saw not Julie!! I am sure you are still fab!!
It's a bit of a bonus if there are more ticking along.
I had my operation in the North East.
Hi Cara, I'm sorry I only just saw your reply.
I got caught up.In another thread.
I too am in North East. I am having total pelvic exenteration on Tuesday 19th.
I am guessing you want to.James cook or Gateshead .
How are you doing now?
im having my op in Gateshead with Dr Raik? Have anybody had this surgeon for pelvic exeneratioN?
I’ve just seen the replies now, I don’t get notifications. Karen...I hope the operation went ok and you are recovering as well as you can be. I had the operation in Gateshead.
Jo, when is your op? There’s a Dr Naik there who I guess you mean. He didn’t do my op but i’ve seen him before. He’s lovely and got a brilliant reputation. The team are fantastic there and the after care is just amazing.
Hi both, my post stating my hospital and surgeon was removed due to forum rules. Yours might be removed too..I can only say that I wasn't at Gateshead but it is the north east.
So I had my op done on.19th so it's now day 8. The road to recovery so far has been very challenging and there were dark nights where I felt so bad that I wished I had said no. However, today Boxing day, I have taken some baby steps, drink some orange juice and opened some Christmas presents!! So 8 difficult days 'is,a small to.pay for what may be years of life.. Your recovery may well be easier. I had a filthy chest cold and because I have had also had a double mastectomy with implants under my pectoral muscles, I found breathing difficult. Without those issues I think I would have coped a lot better.
So wishing you all the luck and love in the world. Sisters together.
I have a colostomy and ilealconduit for urine. I have a brand new vagina made out of my thigh. Yesterday Ion Christmas day I was thinking, I'm a virgin again and yet I have two children!!
I was the same, first week is really tough but day by day you will start to feel a little better.
Keep going...the hardest part is behind you now.
my ops on the 10th Jan and to be honest very scared, but it's my only option. Im having the Leer because in my pelvic wall but this is a chance of cure so taking it.
Are you having any chemo or radio?
Hope you are doing ok?
Thank you so much for your replies. I can imagine how difficult this time is for you and therefore really appreciate it.
Yes that is my doctor, it's 6/7 hours from me so haven't had a lot to do with them at present.
In so scared which is unlike me but just need to be here for my family.
Ill PM you if you don't mind, honestly thgh, don't worry about replying if you don't have the time etc.
Of course I don’t mind Jo, message me anytime.
The team there are honestly amazing and you will be well looked after.