CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Diamond so sorry that you are here. I was diagnosed with OC in March, with a 'mass' measuring 14 x 20 x 23 (stealth boast) so if it is bad news for you it looks like they've caught your 'complex cyst' early.

Leanord what advice did the doc give you ref toenails? I haven't seen anyone yet - I don't know whether to go to the nurse, the doc or a chiropodist.

Leslie you are no time-waster. Sorry to hear you're under the weather. Not entirely sure that waiting for things to resolve themselves is a good policy......

WhatWouldLeslieKnopeDo you weren’t dismissive at all, & thank you for the .

TwitterQueen1 that’s very impressive!
what treatment are you having? ( I will read back over the full thread tonight )

I'll see how it goes Twitter and definitely seek help if it doesn't improve quickly. I know I'm meant to go in at the first sign of issues, but it's always the same and such a faff and I feel especially prat-like as I was only there yesterday!

My oncologist recommended a chiropodist for my manky cetuximab toenail (different symptoms to yours) and it's so much more comfortable now, and slowly healing. I hope you can get some help with yours soon

diamond you are most welcome. Have some too. I recommend it as a coping strategy!

Hello everyone, new and old. Just passing through before I had off for radio, for a quick wave. My sister is currently in labour (sort of - induction day 3!) So I'm having to walk the mile each way while DH has the kids as our mum is with her. She better have that baby son because I'm knackered!

Hi leslie no call from the gynaecologist yet, I'm just hanging around waiting. It's not looking hopeful, he has a clinic today that starts at 2, I was in it a fortnight ago, so he hasn't managed to call before it. Why am I not surprised, I wonder if the message even got to him?

dimondlife my complex cyst -10 x 10 cm- turned out to be just a cyst after a lot of faffing and a 90% chance of being cancerous - the waiting was horrendous, this thread is the best place to make base camp while you wait for results

lookingforbaubles
Thank you so much, that really is reassuring
I’m actually feeling better already and I’ve only been here a few hours.
I won’t get my blood test results until next Thursday, so if it’s ok I will camp out with you all. 🍰

Diamond I have 2 separate threads on my OC discovery. You can find the first one here and the second one here

Ask me anything you like, either on the threads or via PM. But please, please remember that you have not been diagnosed yet. You might be worrying unnecessarily and you might have something that isn't cancer that is sorted much more easily and quickly than cancer. I will keep everything crossed for you.

mrsrhodilbert does your health board web site listing the consultants names/details along with their secretary phone numbers....when i couldnt get any contact with my urology consultant i just phoned every one on the department list asking for advice on how to get a response from him!

I was going to suggest similar to looking, mrsrhod. Do you have a contact number for the clinic? My oncologist's clinic nurse is brilliant at that sort of thing (and tbh she often knows more than he does!)

diamond of course. Make yourself comfy especially if you have cake. Hopefully we will soon be able to wave you on your way with good news (not that you aren't lovely, but we all know everyone would rather not have to join us!) :)

Yes I have the dept phone number, I will call in a while but I'm sure he will be performing hysteroscopies all afternoon.

Ah sorry I was thinking of the consulting type of clinic, not actually doing procedures

Mrsrhod I really hope you get hold of someone. It all seems pretty unfair to just leave you hanging.

Diamond The blood test you've had is probably Ca125. Just to warn you that, if it's raised, it isn't necessarily cancer. Lots of people have raised levels for other reasons, like endo. I know someone whose Ca125 was 600 through endo. (It's meant to be below 13(?) - ish.) Mine was 130, caused by a very large cyst/tumour rubbing against other organs. 'Cured by surgery.'

It's the pathologist who has the last word on ovarian cancer. They won't know for sure till they've removed it and looked at it in the lab.

Difficult, I know, but 'one day at a time'. And don't Google.

One thing that might be worth googling is ‘chocolate cyst’

They cause elevated results on CA125 and could I guess be described as complex (dark, dense, a cyst with endometriosis). They’re not malignant. I had bilateral ones. You’ll need an op to have them out (probably incision. nor keyhole). Really hoping that’s what it is!

Hm that doesn't sound as much fun as its name might suggest

LittleGreyCat I hope your sister has the baby soon for everyone's sake - poor thing must be exhausted after three days, and you too with all the walking on top of the radiotherapy fatigue! Any chance of a taxi or bus?!

So finally I have spoken to the gynaecologist after calling the unit again, I don't think he had been given the message. He confirmed that I am definitely not post menopausal and am having periods again therefore they want me to have a hysterectomy to sort it out once and for all. It won't be until the new year, he didn't know if that meant January or February/March. By January I will have been off tamoxifen for about six months so totally unprotected, how scary is that? I've left a message on the answer phone of the breast nurses, I wonder if they will call me back tomorrow. I suppose taking zoladex to switch off my ovaries might be an idea, I just hope oncology now come up with a plan because I'm feeling very exposed.

Ooh lots of catching up on here to do! Great news that you’re in remission Leonard.

That’s reassuring about the chemo and nails Leslie. I didn’t even realise that there are different types of chemo I guess I’ve got a lot to learn.

Aw how exciting Greycat! My first nephew has just turned 1 and I absolutely love being an auntie.

I’ve just got back from my MRI/CT scans and they weren’t as bad as I thought. The MRI was quite relaxing apart from the noise, the only thing I didn’t like was when they put the dye in my veins for the CT scan, it was a weird hot sensation right through my body although it didn’t last long so it wasn’t too bad

mrsrhod I'm glad you've got some answers, but I'm not surprised it's left you feeling rather vulnerable! I hope the Zoladex might be a suitable interim option. Do you know when you are likely to hear from the oncology team? At the hospital yesterday I happened to overhear the oncology nurse and acute oncologist chatting, and the nurse was saying how various situations are so routine to them that they often forget how important it is to a patient who is going through it for the first time. I was pleased she realised. Hopefully the risks are minimal of being off the drug or on the wrong one, but it's much easier to think that from the perspective of the person prescribing it than the person who is taking it to protect their life!

purple the CT dye is weird stuff! I'm glad all went OK though. And fingers crossed for your results

Thanks Leslie. Hopefully my results will be back in a week or so

Twitter I saw the GP about the toenails and he prescribed Terbinafine 250 mg tablets, one a day. He did say though, that it would be a very slow process, and he was right. It's been four months so far, and new nail now seems to be growing under the old. I'll keep you informed!

Hi leslie, when I spoke to the nurse at breast cancer care she said an oncologist will probably see a couple of patients a year who turn out to be premenopausal after starting anastrazole, so it's not unheard of but uncommon. I've left a message on the nurses answerphone, I'm not sure if she will bother to call me back, she was quite petulant yesterday. She said she would try to speak to the oncologist but as I've heard nothing I assume she didn't. I think she's being very unprofessional.

purple I'm glad it wasn't too bad today, just try to keep busy until the results come. Easier said than done I know.

Hi all
Welcome to leonard - good luck with those toenails! Mine are hanging in there at the moment, but I have some weird chemo rash on my feet that makes me look like a reptile, which is attractive.
mrsrhod I'm glad you managed to talk about the hysterectomy but I'm still shocked that they're not dealing with the drug issue more proactively. Are you only allowed to deal with the nurse to whom you've been assigned or could they find you someone else to help who wouldn't be so tricky?
littlegreycat - hope the niece/nephew arrives soon - very exciting (apart from the walk, phew!).
leslie - I hope your chest issues start to resolve themselves; being wheezy and short of breath sucks - especially when you have dancing to do!
purple - sorry we forgot to warn you about the hot throat/'have I just wet myself?' CT dye experience! An odd sensation for sure!
diamond - I'm an ovarian patient; waiting for results is very hard, but the CA125 blood test is standard practice and like others have said, even if it's elevated, still doesn't always mean that it's cancer. Easier said than done, but try not to panic and definitely try not to Google!

In other news, I saw the consultant today post-scan and the chemo is having some effect - no more pleural fluid, shrinkage of the solid disease and only a little abdominal fluid left. We can carry on with the next 8 doses, so I'll take that as a win for the time being. x

Good morning all.

Yes, googling is the worst.
The information I’ve read on ‘complex ovarian cysts’ ranges from 100% cancer to 3 in a 1000 ( in post menopausal women )
I’ve stuck to reputable NHS sites, BUPA etc, & they’re slightly more encouraging.
But until I get a definite answer I’ll think the worst. Just the way my mind works.