Reoccurrence from Stage 1?

Hi all

I hope you are well during this strange and weird time!

I am writing on behalf of my mum who in feb this year was diagnosed with stage 1C1 cancer. She had a radical hysterectomy and her recovery has been great. She was told chemo would not be offered due to the low grade of the cancer.

For the past 5-6 weeks she has had pressure pain down below, she says its hard to explain but mainly at night and feels like everything (that is left) is falling out. She also feels pain when getting the last bit of urine out. She has been to the GP who diagnosed BV which she has taken the tablets for but is still suffering with this feeling. She says it isn’t painful but annoying! I am just wondering if anyone has suffered from the above, is this part of the recovery or surgery or could this be reoccurrence? She had everything removed apart from her lymph nodes as it hadn’t spread.

Sorry for the long post. She is in contact with her oncology nurse but doesn’t seem to be getting anywhere.

Thanks all 😊

[Nicky100]

Hello lovely,

Sorry to hear about your mum. She is lucky to have such a caring daughter.

I have not had any experience with the above after surgery, but there can be other issues.. it could be scar tissue pulling or it could be something else.

I would try and get it checked out to put your mind at rest. keep trying your CNS or try and speak to your consultant directly. Email them if you can and explain your worries.

I hope you get some answers and that everything is OK. If your mum is stage 1, she has the best chances possible so that is all good news.

Much love, Nicky xx

[Caroles1]

Hi,

I was 1c and didn’t have anything like this, but I did have chemo.

Have they done any scans?

I would persist with your questions, the medication they have given hasn’t worked anyway.

Under normal circumstances I may of said a prolapsed womb, but don’t even know if that is relevant.

Keep on questioning, she’s your mum and you obviously love her.

Let us know how you get on, we are here,

Carole xx

[Hidden in reply to Caroles1]

Thank you Carole.

I’m just really worried in case it’s spread and she wasn’t offered chemo 😢 when she did say she’d rather have it but they suggested as it was low grade it wouldn’t be effective! She’s spoken to her nurse and is seeing her consultant on Thursday. They will then arrange for a mri - I’m just soooo worried x

[Caroles1 in reply to Hidden]

Don’t worry love, she’s getting heard, worrying won’t make it any better.

It’s normal not to get offered chemo for 1c, but I went private and had ascites, so there was a good chance it had spread.

She has such a good chance as she was low grade, take care and try both of you to stay occupied as it’s very easy to overthink,

Love Carole x

[Hidden in reply to Caroles1]

Thank you Carole, you’ve made me cry from just being so supportive so thank you!

Can you just get ascites? I wonder if mum has it? Could that explain her feeling not right? 🤷‍♀️

[Caroles1 in reply to Hidden]

My ascites were because of my tumour, it is liquid which can be drained.

If she has no tumour, my belief is she wouldn’t have that.

She is getting scanned importantly and all should become clear.It may be something or nothing and may not even be linked to cancer.

The important thing is for you two to try and keep yourself occupied, difficult in these circumstances, but, go for a long walk, watch some box sets, just anything to take your mind off it, because trying to surmise what it could be will drive you mad.

Sit out in the sun, it isn’t too long now, let us know how you get on xx

[Coldethyl]

It’s possible she has start of a bladder prolapse so worth getting a GP to examine her manually - after surgery everything does move and fall down as the womb provided structure to the pelvis as well as filling up space - my bladder can be shocking and it doesn’t always empty properly without my changing position.

Chemo isn’t always offered if cancer low grade as it’s not always that effective- obviously recurrence is possible at any stage so it’s worth pushing to speak to the oncologist or surgeon responsible for her care to put her mind at rest x

[Hidden in reply to Coldethyl]

Thank you for the reply! I really appreciate it! See I thought prolapse but GP who checked said they didn’t see anything falling at the moment 🤷‍♀️

She is seeing her oncologist on Thursday 👍

[Coldethyl in reply to Hidden]

I think even without a visible prolapse things just naturally drop there - my mum had very similar feelings and she didn’t have hysterectomy and her GP said the bladder and vaginal area just so t like no oestrogen - vaginal atrophy is actually better thought of as affecting the whole urinary system too so mum was given some oestrogen creams and pessaries to use and she felt a difference - obvs some oncologists reluctant to prescribe in cases of ovarian c but they are supposedly non systemic so shouldn’t affect her cancer wise - some women get interstitial cystitis after surgery too so there are lots of things it could be other than cancer -the oncologist may be able to refer her to urology for a look at the bladder itself x

[Hidden in reply to Coldethyl]

This is great to hear thank you. I think we always think the worse don’t we - thank you for taking the time to reply to me. X

[Coldethyl in reply to Hidden]

Good luck for your mum’s appointment x

[keeponkeepingon]

Yes I have this feeling,very annoying and irritating, turned out to be a bladder infection.

[Hidden in reply to keeponkeepingon]

Can I ask how long you had it for? Mums had this feeling for about 5 weeks now and has taken antibiotics for BV 1 week ago!

[Zillah123]

Hi Carly, I had full surgery for stage 1c clear cell ovarian cancer 7 years ago. I suffered with Uti non stop for one year After finishing chemo until I Was prescribed low dose antibiotics for 3 months. I still to this day have the sensation your mam describes. I find that drinking a few large glasses of water helps to ease the symptoms. I can be fine for most of the day and then suddenly I feel this pressure like I am starting a uti. Drinking lots of fluid helps.

Unfortunately I was diagnosed with a recurrence last year and am still in treatment

Please God your Mam will remain cancer free.

Teresa xx

[Hidden in reply to Zillah123]

Hi Teresa thank you for taking the time to reply to me. Thank you for the advise above I will pass this onto my mum. Can I ask where you had recurrence?x

[Zillah123]

Have 2 tumors. One at top of liver and one in the middle of my chest near the aorta. Surgeon says it is too risky to remove them. Had 6 sessions of carbo and taxol before Xmas. That shrunk them a lot. Am currently on parp inhibitors for 6 months to keep them stable. Will have ct scan in July to see what is going on. I had no symptoms. Ca125 was elevated on routine check. Ct scan was ordered and 2 masses were found !