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

Genie I completely understand the 'going alone vs taking dh' dilemma - my husband likes to come if he can and I appreciate his support, but actually I quite like going in to the appointment alone as I find it easier to manage my own feelings and questions without worrying about his. Maybe he could accompany you for the support, but you could go in to the appointment alone? On the subject of private vs nhs, I've mixed and matched a bit. Both my surgeon and oncologist work in both systems. I opted for whichever appointment came first so it transpires that I have chemo privately and had my big op in an NHS hospital (it was apparently too complicated for private hospital anyway) - and like Twitter Queen I got a 'rebate' from BUPA for the NHS stay. I have had a good experience in both, actually. I think the private advantage is it's very 'joined up' - I never have to chase stuff or make sure everyone's copied in/up to date as they are very efficient. I also get test results etc very quickly. I agree that the 'medical expert' sounds seductive but I would worry that it's a cost saving exercise for them too.
Waving to everyone else - hope you're all doing ok x

Shouldn’t really be here as it’s my husband who is having treatment not me. We are doing it all privately and I am much much happier this way. We chose our consultant, he’s one of the best in the world for this rare cancer. We have immediate access to him and we only see him, never any member of his team. More importantly my husband is getting treatment which is not available on the NHS and the next two steps the consultant will recommend are also not available on the NHS. We saw the NHS oncologist and even though he was a consultant he was very young and didn’t appear to have a very good knowledge of this cancer and would only offer standard treatment which doesn’t have a good outcome. I feel massively reassured that we’ve found him. He does work on the NHS but not under our trust and he would have had a waiting list. Personally if you are covered I wouldn’t hesitate to go privately

Having spent the last week trying to fight our medical insurer for surgery recommended by my NHS oncologist I have a very poor opinion of them. My case is not straightforward and it became increasingly obvious that the people assessing whether my plan covered the surgery were not medically trained. They could not understand the situation and even their medical director, although a doctor, is not an expert in cancer treatment and was absolutely not understanding the details of my case. When I did finally manage to speak to an oncology nurse she took a while to grasp the situation but finally came to realise the need for surgery. I have been really unimpressed by the lack of knowledge of the people deciding if treatment will be permitted or not. The system seemed set up to find any reason not to cover my situation. I'm going to put in a complaint.

Having said that when I was first diagnosed I could have had my surgery and rads through them but the NHS were doing such a good job I didn't bother, but I did get financial compensation for doing that.

I have just spent a very frustrating day in my clinic and was about to suggest to DH that we move to private . I went because I had an unexpected period two years after the last one and after a year on letrozole. Really wanted to see the consultant, but got the registrar, who didn't really understand. Kept repeating what she would have done if I were on tamoxifen.....
Eventually she asks the consultant, he suggests zoladex (sound familiar mrsrhod!) She then writes a prescription, explains I can do the jabs myself (and can stay on them indefinitely) and they'll see me in 4 months. She had stuck someone else's name and details on the script so I had to get that corrected.
Thank goodness my pharmacist is on the ball, when I popped in after school to collect the (correct) script he called me aside and asked about the dosage...
Had to ring the hospital, and the pharmacist spoke to the consultant, she'd only prescribed triple the dose!
Now I have to wait for a new prescription in the post . Feel very unsure, suppose I'd just picked it up and done as I was told? Goodness knows what my letter to my doctor will say.
Anyway rant over. Was glad I had DH there, he doesn't ever speak at the appointments, but he bears witness (and carries the coats, tissues, sorts out the parking, fetches tea and coffee etc so I just do "me")

Just had the 11 blood tests today and got the referral through for the cystoscopy but its not until 23 Feb. Seeing gynae on 6/2. I do wonder about going private too - I have PMI through work but contract only goes until end March and I'm worried if they don't renew. I've been quite unwell since September though we've got round it by letting me wfh but I wouldn't blame them for not renewing, had a month off sick this year. Thankfully financially we are fine and work as so lovely they probably will renew but don't want to transfer to private and then have to restart wait in NHS.

Tried to phone NHS hospital yesterday - 30 minutes of trying to get someone to answer a main London hospital switchboard unsuccessfully. Patients line constantly engaged. They've lost one of my referrals between hospitals for 4 months. I had to suggest I could have a fistula they completely missed it then said yes that must be what you have. It isn't too inspiring at the moment. My doctor said if its cancer some of the bloodwork should show it.

So sorry for what you are all going through, you are tougher than me to be going on your own.

pepperrabbit please do not do these injections yourself, if you dare to Google the injection on YouTube. This is not a tiny syringe, it's actually an implant in quite a big needle. When I have mine done the nurse at my gp practice uses a freezing spray on my stomach before she does it. You have to push the needle under the skin then click to push the pellet in. Goodness knows what they were thinking and it sounds like she gave you the three monthly dose for men with prostate cancer. I think I'd speak to your practice nurse and ask him/her to administer them for you.

How awful that the registrar didn't understand. I've had a really frustrating few days trying to get bupa to understand this very thing but at least they have the excuse of being call centre staff not doctors. Interesting that they have said you can take it indefinitely. I've been told only six months which is why I've been told to have the oophorectomy to permanently solve the problem of ovaries which won't die. In the last three days my oncologist has said I can actually stay on it indefinitely which has totally screwed my chance if having the surgery done privately and gone on holiday for three weeks. I'm ready to explode.

pepperrabbit to add, the oncologist asked my gp to prescribe the zoladex ( which I'm sure is to do with politics and who pays) and I just get an appt with the nurse every month and she administers it, I never actually get to handle it. It leaves quite a tremendous bruise sometimes, I think you could cause a lot of damage doing it yourself. The first time I went the nurse hadn't done it before and got another nurse to teach her, she didn't just attempt to jab it in. Did the registrar mention anything about whether the letrozole had been protecting you at all over the last two years and what your menopausal state is? I started bleeding after 6 months on anastrazole and they've admitted that I was never actually menopausal and therefore unprotected ( on the wrong medication) all that time. It's scary stuff.

She didn't say anything about protection levels she confirmed my tumour markers are fine, my bloods all show hormone levels are post menopausal but that they may be misleading. They were odd when I was on tamoxifen but they thought it was the tamoxifen disguising them, perhaps that was the true reading after all. Very confused.
Glad you warned me about the jabs, sounds rather more aggressive than the gcsf jabs during chemo pharmacist did look a bit surprised that I was just being let loose with them.

And I completely forgot to ask about the results of my mammogram!

My hormone levels are also post menopausal, they were last May when they took me off tamoxifen and they still were in November. They are obviously not an accurate way of checking for menopause so shouldn't be relied on.

The injection is fine if the skin is numbed. I would absolutely not have it without. You need to get a nurse to do it. It's very frustrating all this, no wonder you forgot to ask about your mammogram results.

nicky you hit it on the head with this: I find it easier to manage my own feelings and questions without worrying about his

I'm going to go by myself tomorrow - will report back.

I've been reading everyone's stories on these threads. What an incredible bunch of strong, smart, funny women.

I had my followup appointment with the breast specialist this morning to learn the results of my core biopsy. Cancer as expected. It is stage 1, grade 2, combination of ductal/lobular. The combo is less usual that just ductal, but the surgeon said to his mind it makes no difference to the outcome. The only wild card, with the lobular component (apologies to those of you who already know this!!), is that sometimes lobular isn't picked up as well on the mammography. The MRI this afternoon should be more informative. All fingers crossed right now that it shows the tumor being about the same relatively small size as it appeared to be on the mammography/tomography on Monday. The full pathology results will also be in on Monday, along with MRI results. Fingers crossed again that the results will show receptors etc being what we want them to be.
The nurse specialist I spoke to afterwards was so lovely and answered all my questions. The learning curve for this BC business is a steep one!
Thanks again to all of you who have been offering advice and support on this thread, it is truly invaluable.

So sorry Genie but the upside is that things are happening now. Plans are being put in place and treatment will begin soon. and crossing fingers!

Thank you, TwitterQueen!

that's a bugger genie...but sounds like they are moving apace which is brilliant....the very best of luck with everything....
and hello to everyone else, hope you are feeling as well as possible..thinking of you all...x

Fingers very firmly crossed for the right receptors and no surprises from the MRI genie. Have they suggested what the treatment plan is likely to be?

pepper sorry you had such an unhelpful appointment! I hope you can get the injections sorted out soon

I've had chemo today so I'm not quite with it, so I'll just wave and send love to everyone :)

Hi Leslie and everyone - fingers crossed that there are no surprises Monday; the plan would be lumpectomy followed by radiation and hormone therapy. Sending positive thoughts to everyone who is having a difficult time right now.

Hi leslie I hope you're feeling a little better today.

genie I had exactly the same treatment in 2014, if I can answer any questions for you fire away.

I have reached a point where I can't make any more progress re my operation. I need a letter from my oncologist to try to persuade bupa to operate and he is on holiday for three weeks....and he's the only one at my hospital.

Argh how frustrating mrsrhod! It's hardly like you'd be having this op for fun

That sounds like a good plan genie :) fingers crossed

I'm feeling better thanks, yes. Less groggy than yesterday.

Leslie I hope you will be feeling better this weekend. I have read your story in pieces on these threads and I am in awe of you. Really I am in awe of everyone on here.

Dreading my appointment on Monday but also eager to know all so that I can get started on treatment.

Thank you genie but there's no need. I'm just plodding along because that's all one can do really. Soon you'll be plodding along too! :) this bit is frustrating as you just want to be getting on and doing something. It feels a bit easier once you've started the plan, even if it's just having a date for the op.

This is my 31st cycle so at least I can predict the side effects fairly accurately now I'll feel alright until Monday, when all my lymph nodes swell up and I feel bruised all over and rather pathetic. Often I stay in my pyjamas all day. Then onwards and upwards from there really! :)

I need to get a haircut. I look like one of the flowerpot men at the moment.

Bill: Flobberlobber lobberlob

Ben: Sit down Bill, I’ll get them. You’re pissed

I think I must be more stressed than I realised. I’ve swopped from weekly to monthly monitoring, have next one on Monday (inc bone marrow results) and have utterly convinced myself it’s all gone horribly wrong (based on hot flushes and s big of tenderness in spleen area)

I’ve been having reflexology done, and my puffiness has vanished but my goodness when I need to pee I really need to pee!

Lesley You’re a trooper as ever

genie shall we sit nervously in waiting rooms together?

Sending a hand for you to hold iVampire hopefully it's just your mind in overdrive rather than anything sinister. Fingers crossed for your bone marrow results

Reflexology sounds lovely. I had a very relaxing foot massage yesterday :)

Sending a hand sounds more like something out of the Godfather

What I actually meant was that my hand is available for holding if needed

LOL Leslie. No horse's heads here! Yes IVampire I'd love to sit with you. We can hold hands.