Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

squiffy what an awful ordeal for you to go through. It's dreadful how thinly our A&E facilities are stretched, resulting in you being messed about and neglected when you clearly desperately needed help.

My friend spent most of yesterday waiting in A&E with a wrist fracture and nasty concussion. She reported that an awful lot of the others in A&E looked remarkably chipper and lively. It's an over stretched service that is easily abused.

Oh poor @Squiffy01, I am so sorry you're having such a horrible time. Hope you can get some sleep tonight and maybe feel not quite so grim tomorrow.
I had to go to A&E twice while having chemo, with severe abdominal pain each time. It was awful and you have all my sympathy. Hopefully the liver scan won't find anything nasty.

@barberousbarbara hello and welcome, this thread is a good place to be for support. I hope you get through the rest of chemo without too much ghastliness.
Waving at everyone else!

Thanks to Bloodybridget from last Friday. Tomorrow is the day for rummaging around in my poor bladder after it is now almost 6 months since the end of my Radiotherapy., to reassess the 2 forms of cancer that are involved.

Hope everyone has a good or at least better week than last.

Hi everyone. I’ve been away from here for a while - trying to forget the big C. (Yeah. Right!!)
Brief synopsis - Diagnosed feb 19 with colon cancer. Right hemicholectomy in March and advised good margins, 37 lymph nodes clear. No further treatment required apart from 5 years surveillance.
Then told I tested for Lynch syndrome. Had tests and genetic counselling in September 19 and been awaiting results for that.
I’m receiving those via a phone call on Wednesday and also starting my 1 year surveillance with a CSA blood test the same day.
I’ll also be having an endoscopy (I also have Barratts Oesophagus and a hiatus hernia) and a CT scan shortly.
Life has been pretty ‘normal’ but my anxiety is now kicking in big time.
I had zero symptoms yet had colon cancer.
This worries me again, as I have no signs or symptoms.
Whilst I appreciate my journey is no the same as anybody else’s, I’ve always felt welcome here.
Love to you all x x

9th herceptin on hold today as my heart function has nosedived since last scan 3 months ago. Seeing oncologist on Wednesday.
Bugger.....

@WTF99 Oh no! Do you know what it is? I think 50% LVF is the cut off. I do remember the oncologist told me that if heart function dropped they could "pause" herceptin for a while, so maybe that's possible?

@Borntobeamum that's a long wait for those results. I guess you've had time to research the implications?

Skap I know. I was advised it could take a few months. I have read a lot about LS and also joined a forum where I can ask advice etc.
Unfortunately little is known about it yet it’s very prevalent and most people don’t know what LS is. X

WTF99 My heart function has dropped too. Not enough to pause the treatment but I was switched to six weekly echos instead of the usual 12 weekly ones. The function improved again though so it can be just a dip. As Skap says I think they can pause and restart if they need to.

Hope things are clearer for you when you see the oncologist.

I started Herceptin in november.
Will put a sticker in my notes to ask about heart function test as I must be due one soon . 4th Herceptin this week .

I had an echo anda MUGA scan before starting herceptin in October and another MUGA in January so about 12 weeks.

Hi all,

Just dropping in to say hi and hoping everyone is ok? I'm off fir surgery tomorrow so I'm packing and trying to sort my shitty, little life out in 3 hours 😂 I'm going to stay with family who's going to look after me. Speak soon xx

Good luck tomorrow @Nonotmenori. Will be thinking of you.
@WTF99 sorry you have the worry about your heart function. Nothing's straightforward, is it?
@Borntobeamum quite understandable for you to be anxious. But not too long to wait for results now, you've had a hell of a wait already!

It's dropped from 59% 3 months ago to 44% at last week's scan which seems drastic to me, though I know it can recover with a pause in treatment. Will see what he says on Wednesday. I've felt a bit down today as you can imagine.

Thinking of you born

Thanks for comments everyone x

@Borntobeamum sorry you are feeling so anxious but it is so understandable. I only found out recently that it is only 5 years of checks which is ridiculous and it scares me so much. Like you I had no symptoms, well one, and have stage 3 bowel cancer. And I’ve read a lot of stories lately of people getting it again, I have got to stop reading!
I have an appointment with genetics team on the 28th not sure what it will involve.
Hope your phone call goes well on Wednesday.

@Nonotmenori - best of luck tomorrow, and wishing you a quick recovery.

@Borntobeamum - I have to say, I didn't know what Lynch Syndrome was, so I googled it.....wish I hadn't, because my feverish imagination has now decided that's why I had endometrial cancer at a relatively young age, when I don't fit any of the risk groups. Doh. I am seeing my oncologist tomorrow, so will ask her to give me a metaphorical shake.

Hello to all you lovely people. Hope the Patience is still serving! Well I had a very interesting chat with a man who can only be called a fecking cockwomble! The director of care at the hospital I was referred to and turned away from. His reply to my questioning his decision was "you have to understand catchment areas, it's really quite difficult. The top and bottom is funding doesn't just appear and you are out of the catchment area for our funding and therefore cannot be our concern. This is why you are being referred!" Totally dumbstruck doesn't cover it. So still waiting, still totally exhausted.
Hope everyone else is doing better! Xx

Hi all, this is my first time posting here. I am looking for a bit of moral support and advice bc I feel pretty overwhelmed. Last week I had 2 atypical moles removed. I went to the GP about a completely different mole, but the consultant said that one was fine but while I was there agreed to give my back and chest a look...they said I'll get the results in 3 to 6 weeks. This is tough...but then this evening I took a pregnancy test which was positive. My periods have been a bit all over the place lately but I was beginning to get curious after being 2 weeks late. My partner and I have been together for 2 years, this news would be overwhelming at the best of times (but good) - neither of us have kids and have been talking about it for about a year - but the worry of the test results has just sent me into an anxious panic and I have just spent the last 4 hours catastrophising. I feel like I have killed the happy moment with my worry. My partner (who is now fast asleep next to me) says I need to try and be strong and stay positive while we wait for the results, but this is all a bit much for me. I'm 37 and this is the third time i've been thru this process with moles - in the past they been clear with just one (of the previous 3) that showed early signs of cell changes. I then went on Google (never ever do that!), and read some pretty scary stuff about how oestrogen affects the growth of melanoma...would it be unreasonable of me to write to the consultant and say i've just found out i'm pregnant, and ask if I could talk to a nurse? I'm going out of my mind right now. Please help. 😥

I'd call the consultant's secretary and ask to be seen. Hopefully it will reassure you!

We all understand "scanxiety" here, I assure you!

Hippiechick that is the most cold hearted and horrible example of post code lottery I have ever heard. If that is the attitude and tone of the person running that place perhaps it is as well that you will not be treated there.

QwertyGerty. Your anxiety is entirely understandable. As many people here will tell you waiting for results is always a horrible time and you have an extra reason now to be worried. I think ringing the consultant's secretary and asking to speak to someone who can advise is an excellent idea. I hope you get some reassurance very quickly.

@meercat23 They just don't seem to see me as a person! Got a great gp who was fighting my corner and got a call today because of him I'm in with the surgeon tomorrow. Hopefully things are starting to move now xx

@QwertyGurty hi, welcome! The wait is so hard. I feel your pain. Try to keep busy so your mind will be taken off it all xxx

@QwertyGurty sorry you have to be here. You obviously have some history with dodgy moles so at least will be fast tracked. My DH also refuses to catastrophise with me. I think your partner is trying to say the right things and in truth it would be harder for you if he panicked as well.
Congratulations BTW.

@Hippiechick162 thank goodness you are able to advocate for yourself. This is all hard enough without the added stress of fighting to have treatment. I wasn't aware that the NHS had catchments like a primary school - what happened to patient choice?

My local hospital has just announced they will no longer have oncology appointments or a cancer ward. They were only ever visiting consultants anyway so seldom available.
That might account for the fact that since being diagnosed with cancer last July I have seen an oncologist once. Now I have to travel to another hospital for everything.

I've had the worst few weeks.
A flare of RA caused by chemo put me in a lot of pain. I've had diarrhoea from the anti inflammatories, and now on yet more ABs for a chest infection. I'm in the middle of radiotherapy so have to do that and a round trip of 2 hours each day. Can't drive due to joint pain so DH is taking me. In among that a niggly pain in my back. I am well aware that breast cancer can spread even with clear margins and it most often spreads to the spine. So I've had The Fear. I seem to have been on the phone to the hospital or at the GPs every other day, often fobbed off or told to phone someone else. Anyway BCN has spoken to oncologist who says my back symptoms do not suggest any link with breast cancer. I feel as though the entire NHS must sigh and think oh no not her again.

Hi, thank you to @Scap, @Hippiechick162, @meercat23, and @BitOfFun for your words of encouragement. I took your advice and phoned the dermatology dept, spoke to a really sympathetic and kind lady on the phone who is going to ask my consultant to call me, but said it may not be possible to get the results pushed through any quicker for me due to the sheer number of cases. But just a little bit of understanding has gone such a long way today. Thanks so much for you kind words and support. I also found respite in keeping busy at work. Think it's time for an early night tonight! Xxx

Happy "World Cancer Day 2020"! Not sure what we're supposed to do to mark the occasion. Wave flags? Drink champagne?? Maybe just pat ourselves on the back for surviving this far.

@QwertyGurty - first of all, congratulations on the pregnancy, but sorry the happy news has been marred by all your worries. Keep talking to us, if it helps. Also, maybe talking to MacMillan can help dispel some of your fears? Hope your results come soon, and you can focus on the future.

@Hippiechick162 - I'm fuming on your behalf. Good for you, refusing to take it lying down. But I can't understand why you had been referred in the first place to a hospital that clearly weren't able to treat you. Anyway, good luck for tomorrow.

@Skap - you've seen an oncologist once since July?! I have to say, I'm never sure who is responsible for supporting patients through the side-effects, but I get the impression it's not the oncologists. I know that I was told to speak to the Radiotherapy department in the first instance (although fortunately I haven't needed to). Sorry to hear you've been feeling so rotten.

I saw my oncologist today, for a review, as I'm nearly through the rads. Third time seeing her since December, woo hoo, lucky me!! It was a bit of a rubbish appointment, to be honest. She told me what to expect for Friday/Monday's brachytherapy appointment (but nothing I hadn't already been told) and explained what my follow-up would be. Basically, a discussion and a brief internal examination, every three months for a year, then every six months for another four years. No scans at all! I asked her if this was sufficient (as surely very few cancers can be spotted in this way), but she was already closing my file and ushering me to the door. On one hand, I don't expect her to spend hours discussing statistics and risk factors for recurrence, but on the other hand I felt fobbed off. However, I got the impression that my prognosis was pretty good, so maybe I should just accept that she knows what she's doing.

@Nonotmenori - how are you doing?

Just checking in to see how nonotmemori is doing

Hello and sympathy to @QwertyGurty, glad you got to speak to the secretary and that she was kind. It does make a huge difference, doesn't it? Very much hope you don't have to wait too long for results and that the news is good in the end.
@Skap really sorry you are having such a horrible time, even if the back pain doesn't sound ominous to the consultant, it's still another thing for you to cope with, on top of too much already!
@Hippiechick162 that "Director of care" has the wrong job title, for sure! Glad your GP has been helpful, and I hope you have a satisfactory appointment with the surgeon tomorrow.
@CointreauVersial I won't be having scans automatically at my three-monthly check ups either, even though I don't secrete CA125; they'll do blood tests, feel my abdomen and ask about any symptoms. Then only a scan if there's any cause for concern. It's because they don't want me to be exposed to all that radiation too often.