Stage 3b treatment without chemo

I'd been having abnormal smears for 2 years before I had a colposcopy in March 2020. I was invited back in 3 months after the smear again showed abnormal results. Before that I started to have pain down my left side and in my back. Being a police officer, I put it down to the body armour being heavy and having just turned 39, was feeling old. 
I started to experience heavy bleeding after intercourse and I was conscious I had a smelly discharge, GP checked for BV and STI's which were negative. She eventually asked me to attend the survey as everything else had been done via telephone due to covid. When she examined me, she could see a growth as she put it. I was referred back for another colposcopy 5 days later.

During the 2nd colposcopy, the Doctor couldn't get the speculum into my cervix, I knew something was wrong at that point.

 

I was contacted to attend in person 3 days later to be told that I had cervical cancer. 
MRI scan in July 2020, PET scan in August 2020x whilst waiting for the PET scan, I started to become unwell, I was rushed into hospital with kidney failure. I woke up to find out that I had 2 nephrostomys and had kidney dialysis because the cancer was blocking my bladder and stents couldn't be inserted. I was told that in July that the cancer was stage 2b and by the time I had the PET scan in August, 4 weeks later, it had grown to stage 3b. It was in my bladder, my pelvic floor and paramatrium. I was told that because of the situation with my kidneys, I wouldn't be able to have chemotherapy, I would have 25 rounds of radiotherapy and 3 rounds of brachytherapy.

I have been home for 6 weeks and have the menopause symptoms kicking in now, as well as bladder issues.

MRI scan is soon and I'm worried that the cancer is still in me. 

I am wondering if anyone has had a simailar situation to mine. 

 

Hey lovely,

I can't offer any help as our situations are different but I didn't want to read and run, I hope someone comes along and can offer some support soon. I did know there are lots of ladies on here that had to stop their chemo early and had less sessions but still got good outcomes. It may be worth speaking to your CNS with your concerns and she may be able to offer better support. Big hugs lovely and well done on getting through treatment, dependent on the type of your cancer you may be able to get HRT to help with the horrendousness that is menopause xx 

Thanks for replying. My cancer nurse has left her post and there isn't a replacement. 
It's been shit being diagnosed during covid, I've not been able to access any services through McMillan or Maggie's.

I feel like I've went through all this on my own. X

Hey Rachel,

oh my how frustrating, I thank my lucky stars that I was done with treatment long before covid and I feel for anyone who has had to go through this at this time. I don't know what your hospital set up is like but I was able to get my consultants secretaries number from my oncology dept, so maybe it might be worth discussing your concerns directly with your consultant, or calling Jo's, I haven't myself but I have seen that many women have and they are such a comfort. 
as far as scans go, my first post treatment scan was at 6 months as the 3 month scan can be misleading, so don't be disheartened if it doesn't given you the results you want, treatment works for a while afterwards and that doesn't mean treatment hasn't worked. 
massive hugs lovely,

xx 

Hi Rachel my situation is very similar to yours. 

I was all up to date with my smears, one came back mild changes and the resulting colposcopy came back clear. Fast forward a few months and I'm start having light spotting. The gp I saw, he passed it off as my birth control, but I know my body so I book a app with another another gp and insisted on another smear and a referral back to the Gynecologist that saw me before. 
When I saw her I told her I could feel something so she did an internal scan (not sure what it's called) and she took biopsies from the mass she could see on the scan. 
On the Tuesday I got a letter saying the smear my gp has redone had no issues and on the Wednesday when I went back to the gynaecologist I was told I had a cancerous tumour that was 5.2cm.

The first day of lockdown was my first day of chemo. So I know how hard this is, doing all this in lockdown.

Unfortunatly for me my chemo rads treatment failed and my tumour has grown and spread into my lymphnodes. So in 7 months I went from stage 1b2 to terminal. I'm now on palletive chemo, buying time. 
Since all this the radiation treatment caused scar tissue in the urethra so I have had nephrostomys and have now had them removed and stents fitted. 

Im really sorry you find yourself here but hopefully the treatment they give you is successful.

If you have any questions I'm happy to answer any of them.

regards Nic

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Hi Rachael,

I am here to offer you a positive story.

I had a particularly aggressive form of cervical cancer. My tumour started as, a srage 1b  but by the time I got to surgery, just three weeks later, the tumour was the size of a grapefruit and I had mets in 5 lymph nodes.

I started the chemo regime but was allergic to the cisplatin which is the key drug so chemo had to stop.

So I ended up really in a similar situation to you cancer wise (although my kidneys were fine). 

However, the good news is that all happened nearly 24 years ago! So please believe in yourself. This is absolutely doable without chemo.

Karen x

 

 

 

 

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Thanks for replying. I appreciate it.

I'm just out of hospital after spending the last 2 weeks on IV antibiotics due to sepsis caused by the nephrostomies.

They removed one of the nephrostomy's but the other showed that scar tissue on my urethral tube is stopping the urine flowing.

MRI on 18th December showed no measurable disease but they classified me as having stage 4 as it had spread  to my bladder.

 

I'm scared witless at the moment that the survival rate for stage 4 isn't great and don't want to take it that the cancer has gone. It's such a worrying time. 

 

Hi

I was diagnosed stage 3 on the 8th July 2020. Lockdown sucked. Attending everything on your own sucked. Having a nephrostomy and not being able to go swimming to build up my muscles after losing 4 stone during my treatment also really sucks. I’m so sorry you went through it too. I am also stuck with the pee bag as the stints failed and now they think there’s too much scar tissue but hoping the try again. I had 9 weeks of full chemo before the combination but I didn’t do the brachytherapy. I can’t offer much advice but I feel your pain, I know how frustrated and scared you must be. I hope your starting to do better as we come out of this crazy year xx

Hey!

Hope you’re doing ok. I’m almost at a year since my diagnosis.

I’ve still got a nephrostomy in that is causing me no end of issues. It’s always blocking or the bag is leaking. They have told me at the moment that there is no chance of a stent due to the scar tissue.

I was told in Feb 21 that I had a 5mm shadow at the rear of my cervix and and an investigation under anaesthetic showed malignancy.

They told me I would need a pelvic exteneration. I was devastated but I got my head around it, it was a shit operation but it meant I would still be here for my daughter.

I had to go back in April for more biopsies to confirm cancer and to start the planning for the major surgery.

I was told 2 weeks that none of the biopsies showed any malignancy. That they thought when it was first cut, it died.

They’ve told me the pelvic exteneration is still on the table because the chances of the cancer returning are high. They neglected to tell me that they changed my stage from 3b to 4 because it had spread to my bladder!

I asked about removing my kidney because the nephrostony is a pain in the arse, but they said they want me to have both kidneys working should I need chemo in the future!

I’m waiting to get another MRI at the end of the month and another investigation under anaesthetic. If they are clear, I’m planning on going back to work. I’m a police officer, I love my job. When I’m not working, I just got to bad places in my head because I’ve nothing to distract me all day.

My menopause symptoms are well controlled now and feel relatively well within myself.
Just waiting to have my feet taken from me again.

How are you managing?

Really on a day to day basis I’m ok, I’m back at work part time, I’m an assistant area manager with Ramsdens (not the chippy) the pawnbrokers, I’m back in the boxing gym once a week, very light training due to the bag. When they removed my stint in March it appeared it was damaged and had never worked, it was causing problems & I had urine infections constantly but not a single one since it was removed. Got the tube changed in my nephrostomy last month for the first time since it was put in back in august so that had crystallised and was very painful but they’ve said it won’t be next time as long as we do it every 3 months. They will look at other stints but they’re not in a hurry, suppose they have much more important cases at the moment with the back log. Never thought about asking them to remove my kidney though. Might speak to my oncologist when I see her for my next scan in august.
I can’t handle MRI scans anymore, the claustrophobia got too much so I get CT’s with contrast instead. When I got the all clear in April she said I’ll get another scan in august then that will be me unless I get any more symptoms. I wouldn’t need another one if I’d gotten an MRI but just couldn’t do it. All my lymph nodes are back to normal size which is a huge relief.
Menopause kinda sucks lol not really any other words to use. Hot flushes are my worst. I used to have a quick temper before cancer but now I seem to be quite chilled out, think I might be broken ha ha.
I look back on the last year and it feels like it happened to someone else. I seem to be on a kind of auto pilot just now if that makes sense? Like I’m fine and there was nothing wrong. Some of my colleagues have mentioned it. They say I’m brave which kinda drives me a bit mad. I really don’t see it that way. I didn’t have a choice is how I see it. I could fight and live or not and die. People in your line of work is what I call brave. Armed forces, NHS, fire service etc is what I call brave. I just think I was unfortunate.
I really hope the next part of your treatment goes well for you xx

Hi Rachael,

I am so sorry to hear about your situation and wish you all the strength :pray:t4: I am currently on a plane on my way home after being abroad and my parents are taking me straight to the hospital because I am unable to pass urine at all and am currently still waiting for my Pap smear results after experiencing cervical cancer symptoms. I now know that this cancer has spread to my bladder and is causing issues. I am only 25 years old and and feeling so devastated. Add to that the fear of kidney failure while I’m on this plane.

I’m so sorry for your situation and hope you get off the plane safely to hospital.

I’m not going to lie, it’s tough.
My cancer was worse than they initially thought but……I’m ok.

I still have a nephrostomy, I’m 40 in menopause and still dealing with long term affects of covid and radiation but I’m doing fine.

I’ve had to just adjust to what my new normal is, it’s different, it’s hard but I fought bloody hard to still be here.

Hope you get some answers and treatment as quick as you can.

Here to vent/answer any questions/rant!

Take care.

Rachael

Hi Rachael,

I’m currently home and in bed, I will be going to the gynae tomorrow morning for another Pap smear and just for her to check what is going on as I’m too anxious to wait for another week for my results from Korea. Being home has made dealing with this even harder as now I’m with family and having to face a possibility of saying goodbye to them very soon. I’m floating between acceptance and complete denial. I think you are so strong and I hope I will be able to handle this like you and so many other women on this forum.

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Sorry to hear your still suffering & are no further ahead in finding out your smear results.

Im glad to hear you are now safely home & won’t feel so alone with family around you, they can help in trying to chase up your results & finding some much needed answers.

Even IF worse case they find any cancer, so much can be done, you only have to read the countless stories of other brave women on hear who’ve been diagnosed & are now living cancer free…

Thinking of you, fingers crossed for some speedy results :crossed_fingers:t3:x

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Hi
I hope you got your results and are doing ok.x

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Hi Jayjay,

Thank you, yes it’s a comfort being around family right now, went for a biopsy yesterday and now waiting on results. In a world of pain so that’s a worry but hopefully I’ll also have a positive outcome. Hope you’re doing well xx

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Thank you so much, currently still waiting for my biopsy results. xx

Hi Rachel, I’m new and my scans showed partial blockage of my left ureter so they need more scans to see if it has spread to my bladder. How are you doing now? Hoping you are still well and cancer free as I really need some positive stories as I am very terrified and down at the moment. Thank you.

Hi, thanks for getting in touch.
I’m doing ok. I have my 3 monthly MRI scan next Friday so you can imagine anxiety levels are through the roof. Plus it’s a month late because my doctor forgot to put the request in on time :woman_shrugging:

Apart from that, I’m back to work and managing it fine. Loving the distraction because when you sit at home, you can pretty much convince yourself cancer is back. Having a distraction has worked wonders for me.

I’m waiting to get an extra anatomical stent put it. I’ve just had word from the urologist that they are willing to the surgery which means the run the stent from my nephrostomy, under my skin, they miss the ureter out completely and it goes into the bladder.

I’m always going to have an obstruction caused by the cancer but this means as change of getting rid of the bag and being able to get some level of normality back.

It may not work or it might be painful but I have to try.
So far, my recovery has been good, menopause symptoms are almost under control now.
This time last year I was just finishing my treatment and never thought where I’d be in a year. Stick in. Xxx

Hi Rachael
How are you doing now? Did you get your surgery? They flat out refused to remove my kidney after I suggested it, I blamed you for putting the idea in my head :+1::wink:
How is it being back at work? Glad your getting some normality back in your life. I’ve not been on here for a while xx