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

IVampire It's funny isn't it, the switching of the intervals between treatments or monitoring messes with your mind. I've switched from weekly to monthly chemo and while it's nice not having to trek to the hospital so often, I do miss the reassurance and the chance to check stuff out. Hope Monday goes well for you - and for you genie.
to everyone else who is just plodding along! x

That sounds lovely genie we can hold virtual hands. Plus the (detached?) one from Leslie

I think I’m fretting because this is the first time at the longer interval - something my rational brain knows they would not have swopped me to if they had any concerns. And nicky it’s reassuring to know I’m not the only one who finds that ‘good news’ change unsettling.

I like to take reassurance from how disinterested my medical team seem to be but it can definitely be unsettling too

Two hands still attached here, thank goodness will send comforting hand squeezes instead. Squeezes for you nicky too.

I went to the NHS demonstration in London earlier. Very heartening to see so much support. Who knows, maybe someone will actually take notice

On a more cancery note, my lungs must be doing a lot better as I managed all day walking (almost 20,000 steps) without needing my inhaler and only a bit breathless. Phew. Hopefully that means it really is asthma rather than cancer, though will find out soon enough as having another scan this month.

I was wearing my chemo pump, which often gets me funny looks, so I wore my cancer on board badge. I also have the TFL please offer me a seat one. Thankfully I didn't have any trouble getting a seat so I can't comment on their effectiveness, but I liked the reassurance of having them just in case :) I'd definitely recommend them for anyone who has to use public transport a lot!

I'm rambling on about myself, sorry I hope everyone has had a nice Saturday!

That's amazing Leslie - all that gym must be paying off! It's great that the demo went so well. I saw the pic of your badges on the tube; when I was commuting just before Xmas I was wondering if such a badge existed and if it did, whether I'd have the balls to wear it. I think people's reactions would be interesting. Good for you for wearing them - you deserved a seat after all those steps! x

Well done Leslie for participating in the NHS demo, and most of all for feeling so well! 20,000 steps is a lot more steps than most people manage in a day! IVampire virtual hand-hold/hand squeezes to you. Hugs to you too nicky. Wishing everyone a lovely Sunday afternoon. The sun even showed its face here in NW London today, along with a bit of blue sky.

Happy (?) World Cancer Dsy everyone

and all round

With or for those who can

Hello all
You'll be in my thoughts tomorrow iVampire and genie

Leslie congrats on such a positive Saturday

Hi all

Sending happy thoughts to you all and hoping you are as well as you can be.

Happy world cancer day everyone. We might as well celebrate it eh? Any excuse for

nicky I'd definitely apply for it if I were you. I would never have the confidence to ask if someone could offer me a seat, especially just in case they had a hidden illness/disability/reason for needing the seat too. But hopefully if there hadn't been any seats available someone might've offered if they saw the badges :)

Hugs and handholds and anything else needed to all of you

Just had a bizarre conversation with an out of hours doctor who said I couldn't have cancer as I didn't look like someone with cancer and because I'm alive, if I had cancer I would apparently be dead

Glad he's not my regular doctor and blood tests results back soon. He said blood tests will show cancer but not sure which ones, maybe the FBC?

how on earth did he qualify as a doctor?! I am sorry you're not well and I hope you feel better soon

Have they tested any tumour markers? If so they can indicate possible cancer (although other things can raise them too). Though tbh I'd try and ignore everything he said as it sounds like he's talking utter nonsense! Hopefully your usual GP will be much more helpful.

Anyway, I hope you manage to get some sleep :)

I havent posted for a long time but thought I'd look at the thread tonight to see if I still recognised anyone.

I just wanted to reply specifically to mysilly. I'm so sorry to hear the cancer has returned and its not clear what can be done.

I was her2+ and finished herceptin in November 2015. By june 2016 it was very obvious I had a local recurrence (4cm tumour same breast) which was her2+ again. My oncologist said that I literally fell into a black hole of data as you've found. Studies had been done on relapses less than 6 months or more than 12 months.

But she prescribed another 12 months of herceptin kick started with 4 cycles of vinorelbin. I had my last dose of herceptin mid December.

Not sure if she had any hoops to get through to describe it but it is possible

Thanks very much Leslie I thought it sounded like complete rubbish too, how on earth you can say if someone has cancer by looking at them is beyond me, I have seen people just before they died with cancer and known a few working and quite often they don't look much different. And what kind of test is you aren't dead. 😱

My normal GP has given me meds for a uti but I think its gone to the kidneys. This doctor reckons it hasn't as I am not screaming in pain but I never have back pain with utis and its not shifting. He just told me I was imagining it and laughed when I said I had bone pain since September and had to wfh 4 days a week since then as I am not well enough to go to the office. It hopefully isn't cancer but there's no way its all imagined either. Thankfully my doctor is much better but he is very la-la-la everything will be fine, if you don't worry it'll be fine and its unlikely to be cancer. Just wish they would get on with testing as they all agree if its cancer its stage 4 but no need to rush apparently. Bangs head. I do have PMI though bloods back soon, don't think they did tumour markers. Thanks for your help, hope you are OK.

I’m in a waiting room - clinic running late (as it often is, mainly because everyone on the team that I’ve met so far is lovely and they spend as long with you as it takes). I’m hoping that as I’m ‘wait’ rather than ‘see promptly’ that it’ll all be ok

They weigh you on arrival - I haven’t got down to my pre-drug weight, but do seem to have knocked off Christmas gain

Holding your (virtual) hand, IVampire. I was just in a very busy waiting room myself, so maybe we just missed each other in real life. I hope your appointment will go well.

I have an update, and in the context of bad news, I can tentatively say it was good news. The MRI showed a second tiny spot about a centimetre from the original tumour, which may nor may not be cancer but probably is. However, as this one is so close to the original tumour, they can both be removed simultaneously. The other breast was clear (which apparently isn't always the case with invasive lobular cancer). As for the pathology, both the ER and PR receptors are strongly positive, which means I should respond well to tamoxifen or other hormone therapy after surgery. And the HER2 is negative, which is what the surgeon was also hoping for. The surgeon was smiling, my lovely nurse was smiling ... again, in the scheme of bad news, this is good news. Of course the wild cards still out there are lymph nodes - we will know for sure after the pathology post-surgery, but apparently they looked okay on the MRI - and getting clear margins with the operation. Fingers very much crossed that this means the way forward is surgery and radiation and then a few years of tablets.
Anyway, thinking of all of you and sending hugs and HUGE thanks for being here.

ps - not meaning I'm thankful that any of us have to be here, of course! - I just meant thank you for listening and offering such support and kindness.

I WENT TO THE PODIATRIST! I DID! I REALLY DID!

It didn't hurt (a bit of discomfort) and my feet look and feel so much better now so you can now all join in together in a rousing chorus of "WE TOLD YOU SO!"

The very worst bit was the dead skin exfoliator thingy, which was ticklish torture - like the dentist when they put on that disgusting pinky gunge and then buff your teeth.

And I am dogsitting my dog tomorrow so we can go for a walk and I can wear my shoes!!

A small victory in the face of so much crap...

minty how are you doing now?

Penguins any chance you can nag them to speed things up a bit?!

iVampire I hope your appointment went well

genie a tentative yay from me. Smiling HCPs are always a good sign. I hope you can get started on your treatment plan ASAP, and fingers crossed for clear lymph nodes

Twitter hooray! I'm glad it helped. And I hope the dogsitting is fun tomorrow :)

My adhesions have been playing up again so I've been in bed all day. Feeling better for having had a good rest :)

Waving to everyone and hoping you've had a good day

That's great news genie, I'm very pleased for you. Have you been given a surgery date yet? Strongly positive hormone receptors are good too.

Yay! Well done on the podiatrist Twitter! The tickling sounds like my idea of absolute hell. Enjoy your dog walking tomorrow, hopefully you don't have much snow where you are

Hooray for the podiatrist visit Twitter! You have happy feet now! That dog walk tomorrow should be a pleasure.
Thanks Leslie and mrsrhod. Surgery scheduled for Wednesday. You will understand how eager I am to get that done!

genie I don’t really speak breast, but that all sounds like a version that’s likely to respond well to testament. Operations never fun but it must be such a relief to be getting on with it.

And congrats on the feet, twitter Perhaps some reflexology next, so they feel really pampered?

I’m fine. Bloods normal. Abnormal cell numbers in bone marrow decreasing as they should. Two months until I’m next seen.

Thanks Leslie. I've tried nagging which gets more tests but not faster but it is speeding up with 2 hospitals. Bloods back today but they've lost the FBC, and probably lost FSH/LH/Vit D. Iron and kidney function are low / abnormal, rest normal thyroid, blood sugar, liver, bones, calcium, cholesterol and a couple of others.

So got to repeat ones they've lost and kidneys every 3 months. Iron was only borderline low but kidneys he seemed more concerned about saying there will be lots more tests but doesn't think its too sinister. Expecting FBC to be low too. Gynae tomorrow. Like being an old person! Cystoscopy on 23rd. Going away for half term week.

Sorry to hear your adhesions are playing up.

I'm new here and still feeling very fragile

A year ago I fell off a horse and damaged a rib. The rib healed and normal life resumed. Or so I thought! At the end of November last year I noticed a lump under my breast. It was in exactly the same place as my rib injury so to be honest I wasn’t too worried. I went to the doctor to get it checked and he referred me to the local hospital. He didn’t seem unduly concerned. I had my appointment last Tuesday and that was when my world came crashing down. I had gone to the hospital on my own as my parents are in Florida and I really thought there was nothing to worry about. Unfortunately that was not the case. I had mammogram, ultrasound etc and they said that the lump that I had found is cancerous. They also found a suspicious area in my other breast that may/may not be cancer. To say I was a wreck was an understatement. We were going back at hospital today and I have cancer in both breasts. Apparently it's hormone receptive. Back on Thursday to find out what happens next. Probably an operation and possibly chemo/radiotherapy. I'm totally struggling to get my head around it. Still feel like I'm dreaming. Luckily my friends and work have all been amazing

No snow here Purple. I'm in that central southern bit that just doesn't get any (or hardly ever). I would love some tbh - my old dog Lucky used to love it.

iVampire yes to the reflexology. I'm going to sign up for a couple of sessions now I'm not working, and maybe a mindfulness one too.

Consultant this am, bloods tomorrow, chemo Thursday. Next critical scan will be end of March.

Lesley sorry to hear about those pesky adhesions. I hope they've settled down now and you can take it easy in bed again tomorrow.

Genie will be thinking of you on Wednesday. Sounds like you've had a good day!