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

So sorry to hear that Elise I think its normal to be struggling. Are you in the US? Glad to hear your friends and work have been amazing.

Im in the UK penguins

IVampire sounds like good news for you today. Fantastic and worth the wait!
Elise you and I are roughly in the same boat right now, it seems. All this testing and waiting is torture. Let's hang in there together.

Evening all.

Twitter - so pleased to hear you've had your toe looked at and it's feeling better. Must be a huge relief!

iVampire sounds like not too bad a day today.

Leslie sorry you've been feeling so bad. Hope a good rest perks you up a bit.

genie & Elsie sorry you're stuck in the waiting limbo. Hope you both have firm plans in place asap.

I had my first appointment with occupational health today. Not as positive as I'd hoped tbh. The lady was lovely but said it was clear to her that my plans to return to work in a couple of weeks were rather too ambitious. I mean it's true, but I was getting quite excited! Could do with staying on proper pay too really. But perhaps heading back into a germ breeding ground (aka school) when I ended up in a&e during my last chemo cycle isn't the best idea! On the plus side she said I sounded intelligent and articulate which isn't a given after having a lump of brain taken out and the rest radiated . Next cycle begins at the end of this week so blood tests on Wed then hopefully picking up the meds on Friday!

Do you have facebook Genie?

Elise I do but I never go on FB anymore. But please PM me here anytime you like. Thinking of you and hoping your doctors can give you a clear way forward soon.

Hello all [waves at LESLEY in particular!]

I used to be on this thread when I had my primary diagnosis and treatment 3.5 yrs ago. I've since been diagnosed with secondary breast cancer in bone and liver. I just wanted to see if anyone else is having Palbociclib at the moment? I'm coming to the end of my third cycle and am finding my immunity is completely buggered up every month and I'm feeling awful, even though it's meant to be much easier than chemo. It is better than chemo but I can't do everything as normal as I hoped. Does anyone have any experience?

Lots of love to everyone going through treatment or awaiting results (the worst)

Hi genie do you mean Wednesday as in tomorrow? That's remarkable quick but good on them if they're getting you in so soon. I hope you're beginning to get your head round it a little now, you'll be in for a busy time. I hope you have plenty of help and support at home, let people look after you although you shouldn't feel too bad. We had builders in when I had surgery and I was making drinks for them soon after. It's weird surgery because it's not a bit you use, like a limb. You just need to avoid bumping it.

elise hello and welcome, you're about a week behind genie. I hope you get some proper details soon then you can get your head around the plan of treatment. It usually makes us feel more in control even though it feels like life has fallen apart.

Good morning everyone

genie Wednesday as in tomorrow? That's good :)

iVampire excellent news about your blood results

Penguins what a palaver! Good luck with the gynaecologist today

Elise sorry you find yourself here, but welcome :) many others on the thread have been where you are now. It's a nasty shock. Good luck for your appointment on Thursday. You'll likely feel a bit better when the treatment wheels are in motion.

Twitter fingers crossed for your bloods

LittleGreyCat it sounds like the occupational health person was very sensible, but sorry it has scuppered your plans! I hope your bloods are alright for next cycle

elportodelgato I've been wondering how you were doing. That sounds a bit creepy. I have no useful experience, but sorry the treatment is messing your immune system around hopefully someone else can advise

Waving to everyone

Thank you Leslie Hope you are OK.

Saw gynae and he did FBC and he not not to bother with hormone/ vit D tests so that's done. He's doing a hysterscopy under general anaesthetic with biopsy and fibroid redaction? I presume that's reduction in medical terms? Said 1 to 3 months. Said its unlikely gynae cancer but said he would go private on the urology as results are odd and I am worried. He did say cystoscopy on 23 under NHS should show something if its cancer. Not sure if I will go private as I am taking kids away for half term and want a break for them and me from tests. He did say with bladder cancer I should be getting blood in urine and only got that once during AF so looks hopeful on that score, online it said 80 percent have blood in urine. They seem to think there's something wrong in that area, its just what. He said it wasn't his area but still was quite helpful.

Hope you are doing okay today Leslie. You always find time to be on here and you are so attentive and supportive of everyone else.
Yes, Wednesday as in tomorrow! Apparently the surgeon had an opening in his list so they moved it up from Friday. Of course the first thing I asked was whether I should be worried that he moved up my op but he just looked surprised and said no, he just thought he would offer me the option since he has time! Can't wait to get it over with. mrsrhodg thank you for the words of wisdom. I am prepared to feel fine after the op, as the nurse has been reassuring, but the idea of bumping that side afterward is just ouch! I expect I will find myself doing a protective hunch without realising it. Haven't told many friends yet but the ones I've told have been amazing, so I feel supported so far. My husband has been dealing with everything in rather a funny way, though: focused on logistics more than emotions, which maybe is a male / emotional avoidance / coping thing?

My husband is like that Genie (think it depends on the man though) suspect mine may have ASD. When I told him I was worried what if it was cancer he got me lots of nice food which was lovely but then couldn't understand why I was still worried. He also only does practical things with the kids, can not do emotions at all, but we work round it fine. Glad you've got good friends. I do have a female friend who is great with practical things but not emotions and she's the only one who knows anything. My work are great - I even got a bouquet of flowers and felt somewhat guilty as I haven't even got a diagnosis yet just 200 tests.

Hello everyone. I lurk to see if there's ever anything I can help with and how all the lacies are doing. Sorry to read about some rubbish results lately and that, sadly as ever, there are newbies to the thread.

I haven't posted because, thankfully, I haven't had much to say about shitty cancer lately. It's always lurking somewhere in the background, but I have three more herceptin injections to go now, so I'll only be going to hospital for 6 monthly bisphosphonates and my annual check up - usual disclaimers re the sodding sod coming back or anything else cropping up. I may have some further surgery to even things up at some point. I'm taking metformin, statin and various supplements along with the prescribed hormonal treatments. Thinking about oophorectomy instead of ongoing Zoladex injections - I'd love to hear from anyone who has gone down that route?

It was two years in January since DP died and a year since my treatment started with surgery. So I 'celebrated' with two weeks in Orlando with DS and my two DSDs, we finally got the holiday we'd had to postpone when I was diagnosed and it was fab-u-lous. I was knackered by the end of it, but I really loved it all. I'm planning the next one now, which will be all about relaxation, hopefully Mexico in the autumn. I really am in the 'you only live once' mindset these days. But there is always the BUT when I start planning anything that's more than a few months away.

Genie, that's interesting what you say about your husband. I don't think that other people, no matter how close they are, get it. I look back at the time when my DP was diagnosed (stage 4 renal) and the period afterwards. I tried to be supportive, ferried him around, looked after him, etc etc, but I didn't really understand how it felt at all until I was diagnosed myself. Perhaps the same as your DH, I was focused on the logistics because I could actually do something. Both situations of being a carer and being a patient are horrendously stressful. I hope all goes well tomorrow.

Much love to the lacies and a big salute to Leslie who keeps this thread going xx

Hello everyone. Because I'm not as clever or organised as Leslie, I can't name-check everyone, but I'm following your stories and wishing you all the best. I hope your pesky adhesions have become less pesky Leslie and you're back in your sparkly trainers before long. Twitter - the podiatrist! Hurrah! I bet the dog walk on those freshly-grated tootsies felt good! Good luck for this week - I'm going to take my anti-sickness drugs like a good girl this time and hope that I weather days 5-9 a bit better! Have you found you're still a bit queasy, even this week? I'm not queasy as such, but find myself gagging whenever I cough! Elportodelgato - I'm sorry you find yourself back here. I don't have experience of the drug you mention but wonder if they could give you the gcsf jabs to boost your wbc if your immunity is on the floor? Hello flipppyneck - I see that you're taking metformin. I've been reading about it being prescribed to prevent recurrence in gynae patients and I was interested in knowing a bit more - if you don't mind. Your holiday sounds fab, by the way!

Love and luck to everyone else x

Nicky yes, I do the same - gagging when coughing. And I am sick occasionally too, either just before I go to bed or a couple of hours into the night. I wake with pounding heart, need to go to the loo and then throw up. I haven't taken the anti-sickness pills though as I'm not sick often enough. I also don't know whether it's anxiety or the red wine! Glad you're feeling OK. I will have a scan end March, after #3, to see if it's working.... Good luck to you and everyone else.

Hi flippy, your holiday sounds great. I think we all have a little gulp when planning things many months ahead but I'm trying to stop that. I also recognise the husband being super organised as a way of coping rather than being brilliant at the emotional stuff. I think it's true that you can't really understand it unless you've had it, no matter how many times you've seen others go through it.

I am planning to have an oophorectomy too flippy, just as soon as I can get a date. If you can be bothered you can read about my frustrations over the last few pages, I won't repeat it here as I'm boring myself let alone everyone else. What is your reasoning? For me it's to make sure this artificial menopause I have through zoladex becomes permanent, to get me off a medication that's causing me issues and a side effect of all that is hopefully one less cancer to worry about in the future. I didn't think the zoladex was causing side effects but now I'm wondering, the horrible joint pain I had with anastrazole has come back, headaches, hot flushes etc. Are you taking letrozole, how is it?

Wow genie I had to have various tests, pre med etc before surgery. I had nine days to get it all done. I hope it all goes well, don't be surprised if you wake up with a blue breast.

Hello there mrsrhod, yes, I read your trials re oophorectomy, why is nothing ever straightforward??! The zoladex injections don't bother me too much (with EMLA numbing cream) but it's been mentioned that I won't be on them forever. I'm 45 now, and I have no idea whether or not my ovaries would be functional anyway, apparently the blood tests for hormone levels aren't always accurate, and no one can tell me if the side effects would be better/worse/different if I had oophorectomy. I'm on letrozole, it's ok, I have some joint pain, I've noticed it's worse if I miss taking fish oils for a few days. Hot flushes seem to come and go, I started taking a low dose of paroxetine following a visit to the menopause clinic. It doesn't stop the hot flushes but it makes them a bit more bearable.

Your reasoning is very sound, and I would say the same, but I'd rather avoid another surgery if it's not totally necessary or doesn't significantly improve my quality of life. Bah, I wish we didn't even have to think about this stuff!!!

Nicky, I read a lot of info/studies about repurposed drugs to prevent recurrence and decided for me (strongly hormone positive node positive HER2 breast cancer) it made sense. I have no problems in tolerating the drugs (metformin, atorvastatin, mebendazole, doxycycline) and they all have a well tested safety profile, they're unlikely to do me harm and they may well prevent recurrence. Feel free to PM me if you want to know more. I also take melatonin.

flippy I would also much rather avoid surgery and I've insisted on ovaries and tubes only, not uterus too. So much potential for things to go wrong. But my fear of staying on zoladex until May next year is that even at 55 as I'll be then I could find my periods return and that would be a nightmare. I don't know if I'll feel better or worse after surgery, I'm really beginning to feel that the medics don't know the answers to so many of my questions. I think they're unhappy and awkward about how this has all gone a bit wrong and wish I would disappear. No one has taken ownership of this issue.

If you won't be on the injections forever havevthey given you a timescale? That's the very thing I'm struggling with, oncology and gynaecology are giving me different answers.

nicky I'm sorry you have been feeling sick. I think you said you started a new chemo regimen not long ago? I hope the anti-sickness drugs will work.
mrsrhodg the nurse warned me about blue breast. Can I call it blue boobie, which sounds more like a bird name? Also about blue pee.
Can I tell you all a story that might cheer you up, about how I embarrassed myself at the clinic yesterday? The clinic was very very busy, and as I was leaving I nearly collided with a woman who was also on her way out the door. As I realised later, she is rather a well-known actress. But in my mental fog, all I could think was, "oh I recognise her" and that she must be an acquaintance, the friend of a friend, or whatever. So I made eye contact and gave her a big smile. She looked at me, flinched, pulled her hat way down so that it hid her eyes, and exited as fast as she could. Oops!

Hello everyone, I had my right hemicolectomy on the 30th, unfortunately they had to convert to open so was in hospital a week. Home today and it feels great to be back. Get the results in a few weeks.
Pain is manageable on paracetamol..if I remember to take them so used to them being handed to me at the right time I forgot to take this evening and I now know why you should take them regularly.

Hope everyone is doing ok.

Hi everyone. Hoping for some reassurance here as I'm freaking out. I'm 52 and for the last 6 weeks I've been bleeding on and off. Went to GP last week and she gave me some norethisterone to stop the bleeding so she could take some swabs. Had them done today and she said she saw a sore on my cervix but didn't think it was too suspicious. However, she has referred me under the two week rule and I fell apart in the surgery thinking I've got cancer. I can't eat and feel so sick and terrified. Had an OK smear test less than a year ago and I don't have the HPV virus. Please someone help as I feel horrendous. Thanks so much.

Sorry to hear that Furryface I'm not an expert but I think post menopausal bleeding is fairly common so there's a very good chance its not cancer. It's good your smear was clear and HPV was negative. I'm waiting for tests too - got one under local soon then another under general later though I'm not being put under 2 week rule which is frustrating as 3 month wait for second one though should be a problem in first if cancer as they've said it will be stage 4 if they find it but don't think they will. After crying a lot I've found the best thing is to distract yourself and go into a la-la-la this isn't happening land as much as possible though obviously doing the tests but do whatever works for you. The treatment for cancer is excellent if picked up early.

Thanks Pandas. So sorry to hear you're waiting too. I have health anxiety anyway and am terrified of getting cancer. I wish you all the best with your tests. I need to get a grip. I've got a busyjob so distraction is good.

Hi furry and sorry you've got this to worry about I don't have any experience of cervical stuff, but certainly many, many people on here have been referred for tests under the two week rule (and as you will see if you scroll through, lots get an "all clear"). It doesn't mean they think cancer is the likeliest explanation, but obviously cancer is one of the more serious possibilities so it is more sensible to rule that out first and then move on to harmless explanations than vice versa. Having a normal smear and no HPV sounds reassuring, so fingers firmly crossed for you

ggirl it's weird suddenly being in charge of your own body again isn't it?! I'm glad you are home and I hope you are recovering well. Take it very easy though. It's a big surgery

Oops genie at least you didn't rush over and hug her or something! Good luck with your blue boobie tomorrow

Penguins I'm glad he was helpful, but sorry it's likely to be a long wait until you get answers. I can understand not wanting to interfere with your half term plans. Sometimes you just need a bit of normality :)

Flippy I'm so glad you finally got your holiday. You truly deserved it after the last few years. How is DS doing now? Enjoy planning your next holiday (and leave room in your suitcase for me!)

nicky I hope the medications help this time

Twitter how was dogsitting? I hope you got plenty of snuggles

I thought I was the only cough/gagger but obviously I'm in good company here! My nose is constantly running too so I think maybe it's some sort of delightful mucus overload

Thanks - I am an anxious person too so very similar nervous wreck though am improving with time most of the time. I hope your tests go well too and you get the all clear. I normally cope with things by thinking I could cope with the worst case scenario which works for most things but that didn't work here so am going for distraction and that seems to help quite a lot most of the time. Though doctors are advising me to go private as I am anxious to speed it up but its only two weeks to test now and I am on a little holiday with kids for a week of that and I want us to have a life outside tests.