New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

I was monitored for 12 years but never had a reoccurrence and nothing ever misbehaved so in that sense it was all good - the ballsed-up surgery was another matter entirely (not the oncologist's fault in any way) and took time to get sorted - I'm fine now and 15 years out of being monitored. The extended monitoring was because the type of mass was a highish risk for problems, especially during the hormonal maelstrom of puberty.

I have a very neat scar as the only reminder on my body so I'm very lucky.

Oh addlebrained that is so hard - will they give you a better idea of what’s going on next week?

I’ve been told my appointment to find out the results from my staging scans is 6.30 tonight. So have had a major wobble but feeling a bit better now.

Lots of love to those who are having a crap time - especially leslie and purple - I’ve only “known” you a short time, but you are inspirational x

toofar will be thinking of you. 4 hours and then you’ll know what you’re dealing with.

I have massive fear for clinic tomorrow- can’t put my finger on why but I feel so sick.

This is all so rubbish sometimes isn’t it?

leslie I am SO pleased that today is a better day. Knitting is very impressive!

toofar good luck with clinic - I don't think any of us will ever feel anything but dread when going to clinics tbh! Unfortunately.

I am now not seeing the consultant next week because he told me over the phone all he was going to discuss next week anyway

I am still sitting in the same chair at the dining table as I was over 2 hours ago. Am petrified and not even sure whether I should be

Hugs to everyone else having shite time

And namechange too - that bit about clinic was for you and toofar!

Leslie -You will be around for another birthday! You have to be as we need an excuse for a virtual party!

Right. So, what date is it? I need to get started on blowing up virtual balloons and baking virtual cakes!

Also very happy to find you’re a fellow Piscean! 26th of Feb here.

I need to do a lot more dog walking so I can fit into my favourite (stretchy but not THAT stretchy) jeans for this virtual party.

Oh Addled that’s an awfully long wait! You poor thing. Did they give a reason for the long delay in scanning?

I hope you’re enjoying the Scandis, leslie I find a good murder very comforting

purple I hope that the VRE colony stays put, refrains from causing trouble and responds to whichever AB they throw at it. And that solitary confinement isn’t too awful.

addle I can see why they might want to wait a bit to let any inflammation settle. But 6 months! That just doesn’t sound right.

TooFar fingers crossed on your behalf for 6:30

addled no no no ,just no !

could be a recurrence of tumour and wait 6 months for a scan ??????

Some new form of torture surely .

Is there a specialist nurse who might be able to intervene for an earlier scan ? Or blood test - which I think can show inflamation .
Or your Gp ???

Glad you are having a better day today Leslie

@peapod66, yes it was me asking about radiotherapy. I've messed up the dates, I thought they said on the phone that I would be having the planning appointment on the 15th Jan but it's actually the 15th Feb. So I don't think I can go for this job, because that would mean starting it and then having to go every day for 3 weeks for the radiotherapy and the hospital it nowhere near where this job is based. How have you found taking tamoxifen? If you've had side effects have they calmed down after a while?

Thanks all

I am going to have my CEA checked which is a tumour marker and which MIGHT be of some help but otherwise there's not much, unless I can persuade them to do something like a PET scan which I'm girding my loins to discuss with them!

They say inflammatory changes need time to settle which is fair enough, and they do seem to think this is more likely to be the cause but of course I am planning my own funeral etc as cannot find anything to be optimistic about -- goes with territory tho doesn't it, fellow cancer 'battlers'

That’s rotten Addled - I guess waiting for any inflammation to go down makes perfect sense but it’s still rotten.

I found this helpful....

“Worrying does not take away tomorrow’s troubles. It takes away today’s peace.”

I know it’s just a saying Millennials have as a screen saver but it resonated when I read it. It’s true. Worrying won’t change anything other than make you feel thoroughly miserable in the meantime. The not knowing is awful, it is but you can’t allow it to spoil the next six months!

Is there a sympathetic oncology nurse or your GP that you could talk to about having lots of regular blood tests to check tumour marker levels so you feel a little like you’re getting some info while you wait?

Aimless I haven’t heard that (and I AM a millennial!) but I love it

Popping on to send positive thoughts to @Toofaroutallmylife

diagnosed with breast cancer last year, lumpectomy, radiotherapy and fairly good prognosis, but have reacted very badly to letrozole, body rebelling big time, hypertension[up in the stratosphere] dizziness, nausea, arthralgia [in both hands so cant write for long] blurred vision, headaches and disorientation, etc etc, cant go back to work. Nothing compared to some of you..something wonderful came out of it all..my autistic son has been an absolute star and I thought he wouldn't cope at all..love and hugs

NameChange - Really pleased someone else likes that. It’s helped me stop being miserable about my terminal diagnosis.

How are you now?

It’s so true. We’re alive right now and that is what we need to focus on and enjoy.

Am snuggled under a heated throw with hot ribena and Silent Witness. Far from excited about clinic but a little calmer than earlier. Silent Witness was a lot better when it had (my future husband) Tom Ward in.

How has your day been?

kitdomgen, I’m on a similar course but a few years ahead of you. I take anastrozole which has some of the same side effects. My bp was 240/175 last year and I was hospitalised. Also arthralga but in knees, ankles and feet but that is improving. Walking was very painful for a few months. Various other issues, but again nothing compared to current very sad situations, just wanted to say you’re not alone really. What lovely news about your son though.

Hi kitdomgen, sorry to hear that you've had such a hard time with the Letrozole, but glad to hear that your ds has been so supportive .

Caz I think that the Tamoxifen side effects have definitely settled down. Initially I had a severe headache each afternoon and also bad insomnia. Also bizarrely tinnitus. The first 2 resolved over time and by changing the time of day for taking the tablet. The tinnitus resolved by taking a month's break at the oncologist's suggestion. Quite why it didn't come back when I restarted I don't know. Recently been having some issues with right sided pain and problems with guts for want of a better term, but not yet sure if these are due to the tablets. I think these hormone-related meds so affect so many things that it's sometimes difficult to say what's what.

I was diagnosed with breast cancer in Oct 13, finished active treatment (chemo, double mastectomy and radio) in June 14. However, due to an ancient iPad which means I can't post on long threads, have lurked now and then since then.

I'm so sorry to read the shitty news from so many people.

Leslie as others have said, you have been an inspiration and comfort to so many of us and helped so many people at their most vulnerable time. I hope you know that you have touched so many people's lives and even when you're not here with us anymore, you will always be remembered.

Huge hugs to everyone. I am proud to be one of the lacies.

addled that 6 month wait for info sounds torturous ... Hopefully they can rule out any recurrence sooner if it all goes down quickly. I was advised by a friend who is a chiropractor and heavily into alternative /natural remedies that I should eat plenty of nuts, avocado & leafy greens (spinach etc) to bring down inflamation. Not sure if it would help your situation, but I guess it wouldn't hurt.

purple Glad the tubes are in & hope they start behaving soon. You really could do with catching a break. I hope you'll be ok to get home again soon.

Aimless that saying is lovely and also very true. I have heard it before, but it is a good mantra to remind yourself of.
I hope you are feeling brighter after the blocked stoma.

Leslie glad your energy levels are up. Can the afternoon cheese tea be collected from Cafe Rouge if you don't feel up to venturing out btw? That would Brie a lovely way to spend an afternoon.... (I'll get my coat!)

i have had a poorly child at home today and then have had running bedtime battles tonight as both kept getting up and coming downstairs multiple times due to the need for cuddles. I am dreading the morning as although the eldest won't be going to school, the youngest will be hard to get moving and if anything like today will be whipping her clothes off as fast as I am attempting to put them on... Wish me luck!

Waves & hello to all, off to bed now as pooped!

Thank you so, so much lacies for your good wishes. It was pretty good news - there is (quote) “no conclusive evidence the melanoma has spread”. It’s definitely not in the brain or liver - yay!

The PET scan showed a couple of areas of uptake that didn’t show up in the MRI - one was in my bowel so I need another biopsy to check what that is.

If the melanoma hasn’t spread into the bowel, then I will have an operation to remove a fairly large piece of my vulva plus a couple of lymph nodes, followed by chemo or immune therapy. If the melanoma has spread it will be treatment before the op.

Cancer seems to do very odd things to perspective. 4 weeks ago the previous para would have sounded like a disaster - right now it feels like a win. Hope that doesn’t sound too weird.

namechange - hope the clinic goes ok tomorrow. I watched Silent Witness this afternoon too. I miss Tom Ward but I now have a soft spot for Jack - bizarrely he and Dr Chamberlain came to judge a local charity dog show recently.

Hoping everyone has a good night xx

That's great news toofar - take all the good news you can get!

Good luck today namechange!