I’m new, diagnosed end of July, PET-CT scan in early August confirmed no lymph involvement/spread, staged at 3b so contained within the pelvis. Squamous cell. Kidney function was “fine” but beginning to decline as the tumour was pressing on the left ureter so have had a stent fitted on the left side to be safe.
I’m having a PICC line fitted this Friday and start treatment on Monday - initially 3 rounds (3 weeks per round) of chemo, with cisplatin on day 1 and then a pump infusion of 5FU (fluorouracil) from days 1-4. The plan is to rescan after round 3 to see if the mass has shrunk enough to start radiotherapy, and if not then some more chemo or possibly a combination of the two.
The oncologist is very clear that we are treating to cure, and says that squamous cell responds very well to treatment so he is very positive/optimistic, particularly given my age and general health (32, fit, healthy, active). He also seems very positive about the fact everything is still contained/localised to the pelvis.
But my god, I’m terrified. Stage 3 isn’t exactly “early”. I’m terrified the treatment won’t work. I’m terrified of the side effects. I’m terrified of the practicalities of living with the PICC line.
I’ve read that the survival rate for women under 39 is around 90% which should be very reassuring, but I’m struggling to quell this tide of terror and sadness. I’m hoping it will improve one I actually start treatment as this waiting period has been horrendous.
I’m trying to focus on the things going in my favour - youth, health, no spread, common type of cancer that responds well, the confidence of the oncologist. But none of it seems to help right now and I feel like I’m sinking.
If anyone has any experience of this particular treatment plan, or any helpful advice or encouragement, I would be enormously grateful to hear it.
Hi! I’m slightly behind you as in I’m still waiting on finding out what stage I am etc.
I just wanted to say there are some fabulous ladies on here who will be able to put you at ease and chat with you about thier experience.
It’s great to have your plan and are moving forward with treatment.
Thank you @Shammy716 - I’ve read some of your posts; sounds like you’ve just had your MRI. Pleased to hear it wasn’t an unpleasant experience for you (and that you’re not still driving aimlessly through the roads of Belfast!).
Keeping everything crossed for good news for you x
You’ll find a number of us ladies have been Stage 3 and successfully treated. I’m 64, have a sedentary job, but was otherwise healthy (no co-morbidities) when diagnosed with Stage 3B2 - no involvement of bladder, bowel or kidneys (thank goodness) but cancer in the pelvic and para-aortic lymph nodes. Finished treatment (chemo, radiotherapy and brachytherapy) 6 months ago and so far all clear. Chemo wasn’t too bad - chemo shakes and some tinnitus (by the end my legs were so shaky I had to get an orderly to wheel me back to the radiotherapy department ) but all cleared up now. Having radiotherapy of the entire abdomen gave me diarrhoea, nausea and incontinence at the end, but again, it’s all sorting out and every month is better. I even had sepsis from a urinary infection 10 days after discharge - but I got through it and at the moment I am cancer free - and hope to stay that way! So from an oldie to a youngster - you can do this! X
Thank you @Jacks133 - sounds like you had your challenges along the way but it’s reassuring to hear you’ve come through it. So happy for you having had the all clear; that must be such a huge relief!
I’ve not come across anyone who has had the same combination of cisplatin/5FU as I’ll be having; not sure why that is. Perhaps just different preferences between hospitals? I assume the point is to shrink the tumour as much as possible so that they don’t have to radiate the whole pelvis (thus hopefully minimising some of the side effects/collateral damage).
I gather that of all the types of cancer, squamous cell is a relatively “good” one to have - is this similar to what you were told?
I’m seriously struggling with mindset at the moment. Keep slipping into the “what if” train of thought and ending up in dark places. There are lots of things going in my favour but I just awake up feeling utterly defeated and hopeless. I’m praying I’ll feel a bit more positive once I start treatment - the oncologist said he expects my pain to disappear within 48 hours of starting, so that has to be a good sign, surely? X
Thanks H my consultant has said the same thing repeatedly - he keeps using the word “curable”, so I’m constantly reminding myself of that. I know that if the outlook was bleak, he would have said as much.
So pleased to see you’ve had confirmation of NED, you must be so relieved. What type of cancer did you have, if you don’t mind my asking?
Ask anthing you want to, we are all here to help. I had squamous cell, with paraortic lymphnode involvement.
A very different treatment plan though.
There are many ladies on here that have beaten this. And continue to do so.
It will feel tiring and draining. But as quickly as your world was turned upside down, it soon feels like a distant memory.
Hopefully you will take the treatment well recover quickly.
It’s never without issues after treatment, some people get worse side effects of treatment than others. So I would say expect some, don’t be too worried about them, but do discuss with your medical team.
Hi, I recently had my CT scan and the findings said my left ureter is partially blocked causing moderate left kidney hydrophrenosis. I just wanna ask did you know what size your tumor when diagnosed? Mine is 3.4cm , I’m wondering if that’s big enough to block my ureter it just worry me a lot because on the CT scan report the it was mentioned on the notes that the cause might be neoplastic invasion which means possibly the cancer metastasized on my ureter or possibly the “mass effect” which is pressing on it. I hope that’s the case. Thank you for the time in reading this and sending you love and prayers for continuous healing. Xx
Sorry to hear this - it’s such a worry, isn’t it. I was 3C2 so no involvement of ureter, but it you think about it 3.4 cm is the size of a golf ball - quite big enough to press on the little tube from your bladder. If there is invasion, the treatment also will be chemorads. None of us knows which is, so hard to reassure you - please do get in touch with your nurse specialist and ask for someone to explain. It’s only right that you know what the situation is - but it is treatable, that’s the main thing! X
Hi Jack, thank you for taking the time to reply. I’ve met w my oncologist and radiologist today and they decided to do a laparoscopic surgery on Wed to put the stent in my left ureter at the same time to assess if there’s spread on my bladder/rectum and get sample of nodes to be tested. Found it a bit odd as the CT scan said no spread to lymph nodes. I’m thinking maybe they’re being more cautious but at the same time im fearing the worst that maybe the oncologist felt something on my rectum as he examined me today. Is there anyone here that has a spread to bladder or rectum that has been successfully treated? Xx
but I know now where I need to go so that’s a relief. X
all clear. Chemo wasn’t too bad - chemo shakes and some tinnitus (by the end my legs were so shaky I had to get an orderly to wheel me back to the radiotherapy department 
) but all cleared up now. Having radiotherapy of the entire abdomen gave me diarrhoea, nausea and incontinence at the end, but again, it’s all sorting out and every month is better. I even had sepsis from a urinary infection 10 days after discharge - but I got through it and at the moment I am cancer free - and hope to stay that way! So from an oldie to a youngster - you can do this! X
my consultant has said the same thing repeatedly - he keeps using the word “curable”, so I’m constantly reminding myself of that. I know that if the outlook was bleak, he would have said as much.
