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

Hi mrsrhodgilbert and thymeout thank you both for your replies!
Mum is happy for me to go to her next appointment, I’m not going to be asking anything awful, I would just like to understand a little more about the disease, I like to know the how’s and why’s of things whereas my mum just isn’t that bothered!

I’m not sure of the technical name for it, it was referred to as a low grade carcinoma of the ovary in the letter between the specialist and the GP asking the GP to continue to prescribe the hormone tablets.
I have found a little bit on google about it, and all the information is the same as her doctor has said - chemo being useless against this cancer (due to it not being aggressive, it just doesn’t ‘eat up’ the chemo) and hormone therapy being the best treatment. However I try not to google too much!

They haven’t biopsied the nodules, nobody has mentioned them other than the ward doctor who gave the initial results after her surgery. She has seen 3 consultants since then. I’m happy she doesn’t need surgery or chemo, she was so scared of chemo as she saw how poorly it made my sister when going through it for BC.

I guess we just have to cross our fingers, hope for stable scans and trust the doctors, after all they know what the results say and they’ve treated it before.

LittleBird I'm the same age as your mother. I think I've got more inclined to stick my fingers in my ears and go la-la-la, the older I get. Mine wasn't a carcinoma. It was something called 'Borderline'. I know there's a small chance it might come back and another small chance it could have turned cancerous. But at my age there are other things that could be wearing out and I try to think as little about my health as possible. It would be different if I were your age, because there would be many more years ahead of me for things to develop. And cancer grows more quickly in younger people.

Your mother's a lot more active than I am! Good for her! I hope she has many more healthy years ahead of her.

Hi I've been lurking for a while since I last posted some months ago.
So a little wave to anyone who recognises me and welcome to those that find themselves here.
Quick history diagnosed with Triple negative breast cancer in Nov 2016, 3cm tumour no lymph nodes, had chemo, lumpectomy and radiotherapy which finished in August this year. No sign of disease from the results of the biopsy after surgery.

So I've returned to work and life and just got on with things, coping with my fuzzy brain, fatigue and numb toes!
A month or so ago I started getting a pain in my ribs in the left side (where I had radiotherapy) I went to the GP and was sent for a chest X-Ray, which was clear on the left but showed a shadow on the right lung. Reffered for an urgent CT scan.
I had a CT scan yesterday and am in limbo awaiting the results. I don't know when or how I will receive them.
The pain on my left side is still there, and was advised to take ibruprofen for it. I just feel sick with worry, I know this is the worst bit, I thought I'd feel better after having the scan but I actually feel worse.

Halfbaked welcome back, though I'm sorry you've got this new worry someone (maybe royal?) had some issues with pain after radiotherapy. I guess there's a lot of inflammation. I hope that eases up soon. And fingers crossed for your scan results. It's especially horrid when you don't know when/how you'll hear. Do you have a nurse?

LittleBird sorry to hear about your mum's diagnosis. I can't really add anything much to what mrsrhod and Thyme have said. There's a thread somewhere (the Life-limiting illnesses topic, I think) for people supporting a parent with cancer, though it sounds like your mum is actually very well so perhaps that's not relevant. It all sounds like positive news, but it's understandable that you are worried.

Biscetti I hope you got some sleep last night it sounds like you're in a vicious cycle so hopefully the tablets will help you to break that and get back to a better sleep pattern

wombat I'm glad the MRI went OK. Do you know when you'll get the results? My fingers are very firmly crossed for you

I'm waving to everyone. I had my party yesterday and it was so much fun :) I'm quite tired today. I have a huge mouth ulcer on my tongue so it's swollen up and I sound like Rocky Balboa I have been swigging Difflam so hopefully it'll calm down soon. Most strangely, chocolate is the most painful thing to eat

Hi halfbaked, you poor thing, that sounds very scary and I hope the shadow turns out to be harmless. It's quite common to get pain in the ribs after rads, it's can cause long term damage. I have had it several times even up to three years later and called my nurse the first time as I was so worried. She recommends ibuprofen gel used regularly for about a week. It takes down the inflammation and kills the pain. I really hope that's all it turns out to be. I think sometimes gps are not aware of all the side effects treatments can have, unless it's just mine!

Thanks leslie and mrsrod
I hadn't thought about using ibruprofen gel, good idea. Strangely I spoke to a radiotherapy review nurse who said all side effects disappear after 4 weeks?! I had heard it could continue, but I don't think I was expecting it to be quite so sore. Although I'm glad I went to see my GP, despite the waiting game.
I have got a breast care nurse, so I think I'll give her a call. My GP is who referred me for the CT, but it was on the advice of a consultant after my chest XRay. I just don't know if that was my oncologist or whether she even knows I've had this done, not sure how joined up things are.
I've found my zopiclone from when I was first diagnosed, which really does help get a good night sleep. I hope it's working for you Biscetti
Tried to watch some mindless TV, although perhaps googlebox was not a great choice...
Glad you had a good party Leslie, despite the mouth ulcer. Difflam works a treat as I remember.
Back to work tomorrow, which should help with keeping busy and my mind occupied to some extent.

How is everyone?

Hi Leslie, how are you?
I had a call from my nurse earlier, oncologist wants me to start on zoladex and have another blood test to check hormone levels. That will kill off my ovaries finally so I will be properly protected by the anastrazole. This will keep me safe until the hysterectomy in the new year. I have to get it from my gp though and they now seem to be having trouble giving out appts, I have to call back in the morning to be given an urgent slot. It's sad, my practice has always been great but I feel they're beginning to groan under the strain now. So I'll no doubt start on the hot flushes and night sweats for a third time after experiencing them with tamoxifen and then anastrazole. Yippee, goodness knows what further effects surgery will have. I must have bionic ovaries, they will not go quietly.

How's everyone else doing?

I’ve just got off the phone to the gynae nurse from the hospital. My tumour is 4x4, no wonder it bloody hurts so much I’m got to go back to hospital next week for an examination under anaesthetic as they are concerned about one of my lymph nodes too

Purple sorry to hear that. I'm not surprised it hurts! At least you'll have an anaesthetic next time - much less traumatic that way. I assume they picked up on the lymph node from the scans? Have you had a proper chat with a consultant yet?

Yeah I had an MRI and CT scan last week, no word from my consultant (I’m not even sure who it is) I thought I was just being a wimp as I was originally told that it was only 3mm big. Hopefully I’ll be getting a hysterectomy in the next few weeks depending on what they say about this lymph node

mrsrhod I'm glad you've got a plan, but hopefully it will be straightforward from now on! Good luck getting a GP appointment and hopefully the Zoladex will finally subdue your stubborn ovaries without too many side effects

purple ouch. You poor thing. I hope you hear from your consultant soon with more details of the plan. Good luck with the examination

I'm happy today as my evil enormous mouth ulcer is finally shrinking. Hooray! Now I can talk and eat almost normally :)

Evening everyone.

Leslie, I don't know how you keep on top of everyone and what is going on, I've just read all the new posts since I was last on here and 30 seconds late most of it hasn't gone in and stayed in...!
So scrolling back..

Halfbaked hopefully you will have some news fairly soon and it is just side effects.

Purple hope you have the pain under control and things get sorted soon.

MrsR I hope you and your bionic ovaries don't suffer too badly from side effects while you're waiting for surgery.

Biscetti, are you managing to get some sleep?

Bringback, Carbuckety , Little bird, Twitter and everyone else hope you are all as OK as can be expected.

Also meant to say how pleased for you that you got to get your dancing shoes on for your party Leslie, and how lovely it is to see actual pictures on facebook :)

I did do a really long post but lost the bugger just as I was about to write the last sentence ..... Ahhhh.

So it is also my cancerversary and I saw the oncologist on Monday.

We are going with November and December off chemo and drugs - my PICCline is out, Yay!

I'm going to have a scan early in December to see what is happening and results mid December , the week after is Christmas so will definitely be having chemo free Christmas, hurrah for cheese, wine, chocolate and not feeling quite so exhausted (not sure how my lovely stoma will cope with all the rich food but hey ho..)

He did sort of want me to carry on with the chemo because it is still working. But because the most benefit for most people is the first six months there's not much clinical evidence as to whether it is best to carry on with treatment or break so cancer doesn't adapt to the chemo. But he agreed with my decision, 70/30 apparently :)

I did ask about future possibility of surgery but because it's in so many places and the risks from a big liver and lung operation, he said no, although also said we will always keep looking at what we can do if things change.

Well I listened to you all, thank you, and I picked up the Zopiclone on Saturday, took one that night and managed to stay asleep until around 5:30 without waking up once. Didn't on Sunday and did my usual wee runs, so it's definitely done it's job in keeping me asleep.

Monday was really really long. Started me off at11:20 and final fluids finished at 18:10. The nurses were so so lovely. What I didn't know at the start was the whole weighing before during and after as the nurse said she didn't want to stress me anymore than needed. But mid point explained that I must remain no more than 1.5kg over start weight by the end. At mid point I was 2.3 over, but the diuretic they gave did it's job and I was bank on 1.5 at finish, so I was able to go. Drank SO much yesterday and peed for the world!

Felt pretty nauseous all morning but by lunchtime that had subsided until around 4, when heartburn kicked in. Very tired too. Heartburn was keeping me awake, so I took a Zop and Gaviscon and that let me go to sleep.

All ok today. My phone alarm list is, well, alarming. I have listed every tablet with its times as I appear to not really know my own name right now. Not hungry either, so resorted to Readybrek for lunch and supper.

Back today for my radiotherapy planning scans, then rest of the day doing nothing I expect. Have arrange for smallest to be collected from school, so I can literally slob on the sofa and catch up with crap television.

MrsRhod (I want to be Mrs Rhod, I LOVE him), I'm so pleased there is a plan and I have everything crossed for you with GP appointment for the meds.

Leslie also thrilled to see you have been dancing, I bet you looked wonderful.

Fluffy Bloody marvellous you have the next couple of months off, I'm glad to hear your team are supportive and willing to listen. Enjoy all that food and wine!

My best friend has surprised me with a one night flying visit (she lives abroad) and is coming to take me out next Thursday to an ace Jazz/Soul/Funk place in Streatham where we can eat fabulous food while listening to really good music. I'm so looking forward to it - I miss her so so much and this is just typical of her. Who knows I might even wear a dress. I NEVER wear dresses!

I think even more enormity hit me yesterday, as I kind of knew it would, and I was quite tearful. But I had a fab 2 hour chat with one of my oldest school chums who had BC 15 years ago. We have been in usual FB contact pretty constantly since it started, but to talk to her was glorious and like our last chat was a few days ago. So that made me feel so much perkier.

Onwards and upwards.

Love and best wishes to all for a good day. xx

Hello all.
Sorry I haven’t been on for a few days, tbh I’ve been too worried to even look at social media.
Just to update though.
I’ve had the results of my CA125 test, & thank god it was ‘negative’
I know I’m not completely home & dry, but I will relax a bit for sure. I’ll also de-register from the thread, but just wanted to say thank you for being so kind when I was really so low.
God bless you all

Great that you’ve managed to get some sleep Biscetti, hope you enjoy your night out and fabulous food. It sounds fab!

That’s lovely news for you Diamond

And in the nicest possible way, I hope you don’r Ever need to post here again

Biscetti - Thursday as in tomorrow, or next week?

iVampire next week. I don’t think I could manage this week. Can’t wait though.

Diamond that’s great news!

Purple thank you. It’s amazing how much better I feel for half decent sleep.

Will catch up properly later but radio 2 currently discussing breast cancer treatments...

Saw my gp this morning about the zoladex and I'm going for the first injection in the morning. I've scared myself silly by reading about it on the breast cancer care forum, full of women who are having a dreadful time on it. I also stupidly watched a video of it being administered. The gp was rather grave when asking if I'd been warned about the SEs.

Does anyone here have zoladex and have any info to pass on?

Hi Mrs,
I was diagnosed with breast cancer in Nov 2015 and after treatment had 5 lots of zoladex in 2016. Had my ovaries out after that. Zoladex is a big injection (don’t look!!). I used Elma (or Emla?) cream to numb the area. A friend of mine had it too and the nurse used a freezing spray. It was fine with the local anaesthetic. My side effects were ok, there is a long list of side effects but most people just get 1 or 2. Fingers crossed all goes ok.

MrsRhod, I've been on Zoladex since Feb, along with letrozole. I have some menopausal symptoms - hot flushes, aching joints - but it's hard to say if it's the zoladex or other treatments. Same with ongoing fatigue, stomach issues (I think that's herceptin and post-chemo though), and more! Overall, I don't think zoladex has caused me too many issues. It is sore having it, as Summersun says, emla cream is a godsend, so do ask for a prescription. You have to use a good amount of it about 60 - 90 mins before having the injection - I whack it on and cover it with a melonin dressing held with micropore.

I had my first annual check up this week with my lovely consultant (as opposed to my not so lovely oncologist). He seemed to think everything was fine, if there's anything suspicious on the mammogram I'll hear quickly otherwise he'll write to me in 2 - 3 weeks to say it's fine. Waiting for results is still rubbish!

I also take zopiclone nightly, I can't function without a half decent night's sleep. I have to say, I love it! I also take 20mg of melatonin.

Halfbaked, I hope you're ok. Rib pain after rads is v common as others have said.

Wave to everyone else.

Thank you so much for replying flippy and summer, I'm worrying myself silly and reading too many forums. I haven't been given a prescription for any numbing cream so I'm hoping the nurse will give me a local the first time. I've had the menopausal symptoms twice already with the tamoxifen and anastrazole and I'm hoping it won't be worse than that but my nurse and the gp have both been quite cagey so I'm expecting the worst. I'll be having a hysterectomy in the new year sometime. I'm just getting my head round feeling rough for the next few months. I know I'm being a big wuss.

Flippy, we like a lovely consultant. I think they should all do a personality test before being allowed to speak to patients. Annual check ups are scary but fingers crossed for the all clear. I'm seeing my own not so lovely oncologist in two weeks so if I do get flattened by side effects I can talk about it with him.

Very little internet in hospital sadly but just wanted to let you know she has had day 2 of her chemo and it's gone 'okay'. Massively added to existing pain and fatigue and vomiting for England. Horrible watching her go through this. So very very hard and I'd underestimated how I would feel psychologically reliving the treatment I had five years ago for same cancer though she has harsher than I had. The smell, the feel, the tastes all come back and I feel nauseous myself! Obviously I'm not telling her that!