HPV -3C1 CERVICAL CANCER

Hi Louise14 and welcome to our group.

You've been through a lot already and I know how hard it is when you get told the cancer has grown again. I don’t think anyone can fully understand unless they’ve been through a recurrence themselves-it’s so scary.

Anyway, you’ve come to the right place for some help and support. We have a few similarities in our stories-I also had adenocarcinoma, although I was stage 2b, but the treatments are the same.

I was treated at Weston Park in Sheffield and had all my chemo and radiotherapy there. My consultant changed when I was diagnosed with my recurrence and then I was at the Hallamshire because I needed surgery next.

I’ve been in the group for about 3 years now, and haven’t come across anyone here apart from myself in this particular group who has had a total pelvic exenteration so we are a rare breed! So, you may not get lots of advice here other than from me since I’ve been there and got the teeshirt as it were!

I’m not sure what drug therapy has been suggested-is it chemo or immunotherapy? It’s true that wouldn’t be considered a cure but would be used to control the cancer and the symptoms for as long as possible. The only potential curative option in this situation is an exenteration, which I know well is a terrifying prospect because it’s such a big surgery. 

I have to say straight off that this surgery is not a guarantee of getting rid of the cancer-it’s something like a 50/50 chance I was told. But no-one would ever be able to give you a guarantee of cure, or of definitely removing all the cancer. It’s about giving you the best possible chance. Some ladies find this a very hard decision to make-to take a drug treatment which could keep you stable for some time, or take the surgery option which is potentially curative, but may not be. 

For me, I wanted surgery and never considered chemo because I wanted the best chance possible of survival. I have seen other ladies decline surgery and choose chemo, and it’s a very personal decision that only you can make.

My cancer was very aggressive when it recurred and grew very quickly, so it was important to have the surgery pretty quickly before it spread outside my pelvis as that would have made surgery impossible. It needs to be contained in the pelvis, so I had mri, Ct and pet scans to check this. I was actually delighted to find it hadn’t spread beyond the pelvis and I was eligible for surgery as many ladies can’t go ahead because of spread.

I tried to focus on the outcome of surgery and a good result rather than surgery itself because that for me was too much to think about. There is no sugar coating this-it is a massive surgery with a long recovery, and that can’t be underestimated. It’s not a case of being back to normal in a a couple of weeks:it takes a long time.

Do I regret it? Absolutely not for a single second. I am more than 4 years beyond my surgery and have never needed any further treatment, and have a good life. It was completely worth it for me.

I won’t go on more about it until you want to know more or decide which option you’ll take. Also the are 3 different types of exenteration-anterior, posterior and total, depending on what is being removed so that’s a factor too which will be discussed with you. 

I’m really glad you’ve found me in the group, and I’ll do my best to help support you from my own experiences. Please keep in touch.

Sarah xx

Hi Sarah 

Yes it's very hard and nobody understands unless they've been told same my head is in bits can't stop thinking about it and what will be outcome I'm trying to stay positive.

I'm so happy for you been in the clear and yes I did hear it was 50/50 but its only chance to fully get a cure if it works which is hard to get my head round, I think I will end up chasing surgery but scared it could go out of pelvic area all this waiting how long was you waiting before you had your surgery from recurrence?

Yes I've heard there's 3 different types of the surgery did u have bladder and bowel removed and was they many side effects or any problems 

I'm glad I found someone who has similar to me as it helps.

Louise x

I was diagnosed with recurrence around October 2019, then tried a salvage hysterectomy in January 2020 (opened up and closed up again) which wasn’t successful. Finally had exenteration surgery March 2020.

I’ve had both my bladder and rectum removed. My cancer had spread over my bladder so that had to go, but there was no cancer in my bowel. It did have radiation damage, but I asked my colorectal surgeon to remove my colon. He hadn’t been asked for this before! But I thought that it would reduce my chances of recurrence and because I was already having a stoma due to my bladder being removed it seemed sensible from my point of view. I had no side effects at all from having stomas, never have had in 4 years. Stomas don’t hurt-they have no nerve endings- and I have never had any problems, medically, with either of them, it’s just a different way to go to the toilet in my opinion. 

I can’t say stomas are without their issues, especially in the early days when bags can leak, you can be covered in pee and poo and your bed needs changing 4 times a day! You have to adapt to a very new life, and I was prepared to. Four years on, stomas are easy, still not ideal, but easily manageable.

Sarah xx

So it was 5 months I thought it needed to be done a lot sooner.

So did u know from scans that your bowel was fine before operation then, is that what can happen leaving bowel or bladder another reccurence did they say that could happen? Oh no that doesn't sound fun all the leaking when does the leaking stop happening? Sorry if I'm asking too many questions it just helps having someone who's gone through same that I might need to have depending on scan.

Louise xx

Hi Louise

Normally things need to be done pretty quickly, that’s true. I knew from my scans that my bowel was ok, and it was only damaged by radiation but I asked my colo rectal surgeon to remove it anyway. I just wanted to reduce my chances of recurrence and I knew I was having a urostomy so thought I might as as well have 2 bags! 

Leaking is not really something that ever stops, I’m afraid. If I have a tummy bug and diarrhoea then the bag is likely to burst. If I drink too much liquid and don’t remember to empty my bag often enough, it will burst. It happens and you just get used to it. 

Please don’t worry about asking too many questions-I don’t mind at all. I know how difficult it is to find anyone who has any experience of this.

Sarah xx

Hi Sarah

Just hope I'm not waiting too long that's the worst bit, hopefully my appointment comes through quick for my scan.

I'm not sure what I'd do of they said 1 was OK n 1 wasn't don't know if I'd opt for avin 2 bags if I didn't need to but wouldn't want it to recur again either.

Oh no really that doesn't sound good I've heard there's a belt ya can get not sure if it helps but can't be good if your out and it leaks or bursts.

It is hard to find anyone who's experienced this operation and thankyou you've eased my mind a lot about it all 

Louise xx

I can say only for my experience that a belt  wouldn’t make any difference to my life with bags. They are designed to support stomas, not stop leaks.

So I could use a bag and it would support my stoma. But to put it in a basic fashion, both poo and wee will find its any level, and no matter what type of support you have, if that bag is going to burst or leak it will. There is absolutely no belt on this earth which will help if your bag of any sort leaks.

To give you an example-last weekend I was away for the weekend, and 2 hours from home in the car, I knew I had a problem. So my colostomy bag burst but we were on the motorway- even in a service station I could not have got to the loo because it would have been impossible not to be in a mess. So you have to adapt-find a very quick place in a carpark, cover yourself with a towel and change the bag. I’ve been in much worse situations! 

Sarah xx

Oh right yes they do different size bags so doesn't that help? It will be a case of checking every hour then to see if it's full or keeping drinking to a minimum wen out and about. These bags don't sound good at all but to live its worth it 

Louise xx

Bags are different sizes and there are lots of different types, yes. Does it help? Quite frankly no-I’ve tried many different types. You end up typically with what works best for you on a personal level, and we’re  all very different. A bag can fill in 5 minutes or less.

Sarah xx

I don't know then my aunt has the poo bag and hers only leaks through night if she doesn't set alarm to empty it, she kept getting onto doctors and nurse for solutions xx