CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

Happy weekend everyone.

Only 6 days until my appointment now, still trying to remain positive and not stress too much.

Driving myself crazy symptom spotting though, huge parallels to a ttc 2ww. But also so very different. Full of dread rather than hope.

Got the swabs back from the doc and there was no sign of infection, which I guess is a bad thing really. I can’t put my symptoms down to something less sinister. I still hope it’s a recurrence of ovarian cysts, but it feels quite different.

Anyway, hope everyone else is ok

Fingers crossed MrsMg

Wow Leslie - 20! I couldn’t cope with 2 right now. I keep nipping off for little naps.

Good plan TG - she’s persistent!

MrsMc thinking of you

Is there anything nice you can go and do this weekend to stop yourself second guessing? I know it’s easier said than done but sometimes the only thing that keeps me sane when waiting for appointments and results is getting out and distracting myself with cinema, pub lunch, dog walk, touristy stuff whatever!

Leslie you are either a) incredibly brave b) incredibly organised c) insane. Possibly all 3.

Thanks Namechange, in with the kids today (vile weather) but working a night shift tonight (which I love!) so that will keep me busy.

Mrsem have you had a CA125 blood test?

Mmm Thai food. I hope you had a lovely time ranout.

I find swimming is good for the soul. It can be as gentle or full on as you like.

TwitterQueen - not yet, the dr felt a mass that she wanted scanning ASAP. Not sure if they will draw blood at the same appointment. I haven’t really had much info other than the date.

First post if it's ok to join? I have breast cancer. Not ready to talk about the full diagnosis yet as find it difficult to talk about.

I'm having treatment (chemo) and one of the things I am struggling with is dreading the post every day. Does anyone else have this? There always seems to be a letter about something and also I am unclear as to what role my GP is playing in this has already had an unhelpful encounter with them early on. It's a large practice so never/talk to the same GP. If you want to talk to one of the "good" ones you have to wait weeks.

In the post today (would be a Saturday morning wouldn't it?), I've received a standard form letter from the GP practice saying the GP has received a letter from my Oncologist and I need to call to make an appointment for a telephone call with the GP. So I am now going to be left wondering all weekend wtf this is about? I'm not the most positive thinker and immediately go to the "is this yet more bad news scenario" and I am anxious about it (long history of anxiety and depression and went back on anti-depressants when I was diagnosed).

I know no-one on the internet will know the answer but just wanted to sound off about the way the communication seems to be and what role the GP has in all this? I haven't found them particularly helpful so far and not sure what I need them for really in relation to the cancer or what messages they would convey about my treatment? What should I be expecting them to do/not do?

This is one of the "good" weekends between Chemo treatments and now feel it will be spoilt worrying about this.

Sending good wishes to everyone going through this...

...and I need to change my username. Used to travel a lot but that is off the agenda for the foreseeable!

Mrsem I find the lack of blood test very odd. It's the easiest and quickest way of finding out whether there is anything to worry about. It's not definitive of course but it does provide indicators that can help the medical staff.

MrsTraveller so sorry you find yourself here. You don't have to talk about anything you don't want to - we're all on your side. IME - and I have ovarian, not BC, the letters are all admin and follow-up. So I suspect this is absolutely nothing to worry about and it's simply a case of crossing Ts and dotting Is - the consultant is doing their job by informing your GP about what's happening. And standard practice is that your GP will check with you on the phone that you understand what is happening and may ask you if you need any additional support. So it's all just process and procedure.

Thanks TQ - I am hoping that is what it is. It's so blimmin' confusing as as a fairly new patient I don't understand what their processes are. I think this fear of the post all stems from receiving a copy of the surgical Consultant's letter (which I wasn't expecting and hadn't been told I would receive) that he sent to the Oncologist and GP when I had my initial diagnosis. It was all laid out in black and white and just totally freaked me out. In fact I've filed that letter away and will try not to read it again.

I have lurked a bit and this forum seems great for sharing experiences and practical help.

Thanks for responding so quickly it has helped. I know I have to wait to get the answer on Monday or whenever but good to have some input from people with more experience around what generally happens between Consultant/GP

De-lurking to say to Mrst, I think you can request not to be copied in on letters from Consultant to GP. I know just what you mean about the post. I got v twitchy about letters dropping on the mat recently while waiting for the results of CT scans.

Like you, the first time I saw 'carcinoma' in print in a letter from my surgeon to my GP about my up-coming op really shook me. Especially since he'd assured me only days previously that he thought it was benign.

I do think they err on the side of doomishness for internal NHS procedural reasons. They forget that the patient is reading the letter as well.

Thanks for de-lurking Thymeout. "Doomishness" is so apt for the letter and made me laugh. Great word I might start to use it!

I didn't know you could opt out of their letters to each other...I will put that on my notepad as something to consider/ask about.

MrsT welcome, and also are you me? the first time I totally fell apart was when I got that letter (mine was oncologist to GP) and realised my cancer was stage IV- I knew it had spread but no one had said the stage four words and I absolutely lost it when I saw it in the heading of the letter. No one warned me I’d get the letter either, and now I hate the post. I have an unopened letter on the side that’s been there for 6 weeks as I know it’s the one saying that the cancer has spread further and is incurable. People have offered to read it for me but for now it’s sitting there! Until now I was a big kid about post and loved it- even the bills!

On the GP front (wow this is turning into a long post) I feel really let down by my GP not diagnosing me when there were (with hindsight) very clear symptoms. When I did get diagnosed she started ringing me a lot and leaving voicemails for me to call her back. I never did and the only time I have stepped foot in the surgery since was for flu jab and I was in and out like a whippet! New expression I just made up I think.

I asked GP in my family if I needed to engage and he said no and that if I did want to they could help me to access other services, chase stuff up etc, but if I didn’t it was my choice. Hope that helps a bit

Hang out with us here, it’s actually a lot more fun than you’d think! As long as you don’t mind talk of toenails, puppies, crocheting and hospital food

TwitterQueen1- do you think it’s worrying she’s not requested it? I think she said something along the lines of a cyst would show a high ca125 result anyway and the only way to know for sure is with imagining. But I must admit I didn’t hear much after “mass....cancer referral”

Something else that helped me eventually about the letters was to realise that mine were being written by all different people (medical oncologists, surgeons, clinical oncologists etc) and they express themselves differently in the same way as I write differently to my colleagues. So I was obsessing that one person used one particular word and another didn’t but they are just humans dictating a letter with no time to spare!

Name change - yes one of the things I loved was seeing the photos of everyone's pets. I don't have any myself. This cancer is truly shit isn't it?

On the GP front I too have been disappointed really. Not so much a diagnostic issue but their communication and something happened early on which caused me a lot of stress (would be too much detail to go into on here) from one of the practice's "not so good" GP's.

I know lots of people who are patients at the same practice and there is a definite list of good ones and ones to avoid and this particular GP is on a lot people's "avoid" list. Fortunately, it's not her who I have to have this telephone appointment with next week.

I don't see any point in changing practice though because I am sure all the NHS practices in my town operate in pretty much the same way.

I will definitely continue to hang out and hope I can help others along the way.

No pets? Great do you want a particularly farty puppy? I’m not sure what he has eaten but he definitely shouldn’t have. I can probably get him into a Jiffy bag if you give me your address

Yes it is all a bit shit, but what you see from these threads is the bits of “normal” life popping through when you’re not paying attention! I was diagnosed just over a year ago and in some ways it feels relentless but at other times I think actually I have been living and laughing and lots of good things have happened in my post-cancer life.

Much as I am grumpy about my GP and avoid her (she’s the senior partner so that’s great) I totally agree about moving practice. Much as we’d like it, none of us have limitless energy or headspace at the moment and something as hassly as changing practices has to be really worth it if you want to spend time and effort on it.

I remember initially feeling like every time I saw a HCP they gave me another bit of bad news, but FWIW I really can’t see that the GP will have anything to tell you, other than how they can help and to encourage you to use them for support etc.

Mrsm

Don't worry about not having had the Ca125 blood test. My GP could feel my (non-cancerous) ovarian tumour, so I went straight to consultant appointment, CT and MRI scans. At that point, Ca125 was tested. You've just jumped a stage, which is good.

Btw, my Ca 125 was 5x higher than normal pre-op, but went down to 9 as soon as the tumour was removed. So I can see what your GP was getting at. I think your symptoms on their own merit a referral. Even if your Ca125 was normal, you'd still need a scan.

But TQ is right about GPs needing to be more aware of ovarian issues when dealing with more general symptoms. It is sadly v common for women to waste a lot of time having seemingly gastric problems investigated when the cause is ovarian and a simple blood test could have led to an earlier diagnosis.

Hello @Mrstraveller here's a photo of Hermione, sitting on the chair I decided I "needed" yesterday! Hope it cheers you up.
I had a text from my GPs which I've ignored, think it was asking if I wanted to go through things. I couldn't be arsed at the time as, like you say, you get appointment letters everyday. I seem to be different as I don't seem to have all these copies of consultants letters (must have ticked that box) and I'm ready to know exactly what type and grade I have (breast cancer).
My unit at hospital actually has a sign up saying that they are your first point of call, not your GPs!
As other people are saying if there is anything you can do to take your mind off things between the post and appointments do them. We all seem to have a love of craft here and it's certainly kept me busy this last week.
Waves all round.

Re letters...

I hate to post a word of caution but it might be worth asking to be kept copied in on all letters if you’re seeing Drs at various hospitals as they don’t communicate very well with each other.

I’m totally disorganised but had a scare that’s made me realise I have to be sensible about this and keep all letters and also keep a written record of who I saw, what I had done and when.

My op was in Basingstoke (1 of only 2 places in the UK that treat appendix cancer) I had a follow up scan weeks and weeks later at East Surrey hospital (ESH). Someone rang from ESH to say CT scan showed clots on the lungs and to get to hospital pronto! I phoned Basingstoke and they said come right away.
I was there 5 days having high dose blood thinners. Every day someone different came asking me about the clots. Did I know what lung they were on as they couldn’t see them on the CT image. It only became clear after I was discharged that they were looking at the wrong image.
ESH hadn’t sent on the scan image to them. They were looking at a post op scan that was done at Basingstoke and not the more recent one from ESH. I asked my surgeon while I was there being treated for the clots if there was any sign the cancer was back and he said no.

I now know that the scan image they should have been looking at showed it was back, in my abdomen and on my liver.

I wish I’d kept a better check on dates of scans and appointments etc. I just assumed all info went into ‘my file’. It doesn’t. I know now it’s so important to check dates of things and keep all letters and written records in an organised folder and take the folder with you to all appointments.

My chemo is done at The Royal Marsden and I’ve also seen an oncologist in Crawley. That’s quite a few different places and a good opportunity for mix ups re letters etc.

If you don’t want to read the letters you’re copied in on it might be worth getting someone else to open them, organise them for you by date and then keep them in a separate folder so you don’t have to look.

Thanks thymeout that’s reassuring, and makes sense.

Does anyone know if you find out what’s going on on the day of your appointment or does the consultant/radiographer/whoever it is write to your GP?

I think it varies a lot, Mrse

My first appointment was at my local hospital which doesn't have Gynae-oncs. The consultant wasn't v helpful. She was running late and said v firmly at the beginning, 'I'm not going to speculate till I've seen some scans'. So that shut me up before I'd even opened my mouth. Didn't see her again till monitoring post-op, which was a blessing, really. There was an unfortunate incident in between in which her CSN rang to give me, second-hand, a v. scary account of an MDT meeting about my scan results. Later got a fulsome apology. No letters to my GP from her.

I was immediately - well, 2 weeks - transferred to the A team at St Thomas', who corrected her misdiagnosis and did write to GP before and after surgery.

Hopefully you'll get someone a lot more informative. Is it just a scan or a scan and a consultation? My local hospital has a one-stop clinic for Early Pregnancy and Gynae, but when I was under Oncology I had to get the scan done in a different hospital before my appointment. I always assume that technicians aren't qualified to tell patients much, so I don't ask, except how and when I'm likely to get the results.

thymeout I think it’s possibly just a scan, as my local hospital doesn’t even have a gynae dept (other than a midwife led pregnancy clinic and labour ward) let alone anything else! Its at the same radiology dept I went to for my pregnancy scans.

I am preparing myself for the results to go to the GP and then having to wait the whole weekend minimum for any answers. Then depending on what it is (or seems to be) the gp will refer me to the nearby city hospital for further consultations. But it’s just a guess.

Thanks for sharing your experiences. It’s really reassuring

Aha here is Hermione and the chair I had to have!
Decided to take my wig on its first trip out tonight, hope it's not windy or any naked flames!

Morning lacies! Beautiful spring day in Melbourne and I’ve spent most of day in bed with complete exhaustion and mild flu like symptoms which I’m assured are normal. Just feel so shit. About posts above I also hate seeing stuff in writing- just really hits you - the words and terminology- it’s like just lie to me- tell me it’s all benign!

Anyway enough about me - how did lunch go leslie? How did wig outing go ranout? How are things keepcalm and pandoras?

and to all