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

@Nonotmenori I'm afraid I had a very similar experience - biopsy at my local(ish) hospital, told I would hear the results within two weeks, which came and went, and then I got an appointment letter from the marsden - even then my GP (when I finally got through to her) said there was no mention of cancer, was all routine, just a second opinion etc. And the referring hospital said the same, they actually sent me a copy of the letter saying their pathology findings said nodular fasciitis (a benign tumour). However, that all changed when I actually had the appointment at the marsden and they told me it was sarcoma.

I hope your experience is different - I do believe them that sometimes results aren't clear and they need an expert to look at it. My GP told me she had several patients referred to the marsden for diagnosis and it turned out not to be cancer. At least if it is bad news you'll be in the best place to treat it. I found the waiting the absolute worst part, once I got the diagnosis there was a clear plan in place and things moved very quickly. It was almost a relief.

Just checking in to see how you all are, esp you hippie x

I'm ok. Thank you very much for asking.

I had a phone call from the opticians to apologise for how my referral was handled (or wasn't as the case may be...)

They offered to phone the hospital to get some info so I agreed and they told me I need a further appointment but the wait is 16-18 weeks.

Obv it's not urgent then??? There are 2 separate issues/lesions with my eye. I'm still failing the amsler grid test.

My eyesight in my left eye has deteriorated even since the scan but I would have to go back to the opticians and get referred - again - so I'm going down the bupa route (I'm covered under dhs work policy).

How are you doing hippie? You are on my mind and in my thoughts x

Hi everyone.
Back from my second round of biopsies. I had to go back half an hour after getting home because I was still bleeding. Turns out I'd haemorrhaged, so back I went. Stitches and compression dressings on now and already going black but ok.

They've confirmed the need for chemo and operation but still not sure which way round. I'll find that out on Friday.

Oh @stinkyeddie they really are being rubbish aren't they? Hoping that that means it'll all be ok for you. An apology is nice but doesn't really do much for you does it? Hope you are coping ok, remember to lean on that IRL support as well as here. Hope your mum is doing ok xx

Thinking of you @Nonotmenori xx

hippie bloody hell! You poor love! Is it painful?? Glad you have a plan now. Pressure bandages on boob doesnt sound nice at all :(

Mums ok, thank you for asking. She has many health issues which are all degenerative but she's stable atm.

I'm ok. Honestly. I've stopped googling 😬
I've got an appt next Tuesday at local (ish) bupa place. Just wish my eye would behave! 🙄

I'll keep checking in on you if that's ok? X

@Hippiechick162 ooch that sounds painful. Youve already had one biopsy so you know it will hurt for a while. Do you know yet whether the cancer is ER positive or HER2 positive? These things can affect what treatment is available to you.
@Trumpton Your hair is doing pretty well, if you can hold on to that amount it would be a decent result. Also loving your eyebrows.
Thinking about @Nonotmenori.

Hi all,

Well went in and it's been confirmed I've got breast cancer. The good news is they've caught it early so I'm stage 1. I'm in a daze so not sure if I'm saying correctly what happens next, but I'm going back Thursday for contrast enhanced mammogram for both breasts. I'm nit sure if I'm booked in on Monday to Friday for the lump to be removed. I asked fir the fastest and best way to get rid if this so I'm back at work asap. I'm still in my probation period so this really isn't great timing. I can just about manage with ssp for a week, but no more. I've called my boss who says take as much time off as I need, but what good is that really? I need normality right now. Work should hopefully take my mind off all this. Thank you all for your thoughts xxx

@Hippiechick162 hope you're ok xx

nonotmenori thinking of you x

Oh Nonotmenori, so sorry you got the news you were dreading. But is there ever a good time for this sort of thing? Just take each day as it comes as regards staying at work; good to hear your boss is being sympathetic, though.

Hippiechick, I'm wincing at the thought of all those biopsies. Hope you are a bit less sore tomorrow.

CaptainNancy, I had my weekly radiotherapy consultation today and asked a bit more about my brachytherapy. She confirmed it would be two appointments, and the zapping itself takes only a few minutes (with the inevitable faffing/waiting beforehand, plus insertion of the rods - errk!), because it's the "high dose" treatment. It seems that the type redspook had was "low dose", which is typically carried out over a much longer period. So it's worth checking which sort they have prescribed for your particular cancer.

Getting into a bit of a routine now with my daily hospital visits. My guts have just started gently playing up....nothing major, but the radiographer said cheerfully "oh, that's right on cue," and has given me some sort of fibre sachets.

@Nonotmenori I am really sorry to hear your news. It all takes a while to sink in and sometimes you find you haven't understood what was said because you were in a daze. Were you given a breast care nurse? These can be incredibly helpful, especially at the start. Maybe you could ring her tomorrow and ask her to go through things again with you?
I wonder if you mean a contrast MRI scan rather than a mammogram? I had one of those as well as a CT scan before my operation, it gives the surgeon a fuller picture of your breast.

sorry I was MIA, but I felt so normal I wanted to do as much as possible before the Filgrastim crash this weekend.

Tommorow is the last one Thank God, then time off for good behaiour and fifteen rounds of radio, I am being consented tomorrow.

Will let you all know how it goes.

Much love to all the inmates.

xx

Thanks CointreauVersial On my last plan that was cancelled I had 4 sessions spread over 2 weeks. So perhaps mine will be similar to yours. Let me me how you get on. With the external radiotherapy do the appointments take long? I hope that your side effects don't get any worse.

CaptainNancy1 - My brachy appointments are right at the end - 7th/10th February. Ages away! Anyway, I timed the actual "zapping" which takes place during my external radiotherapy session - it's less than 4 minutes!! The appointment slot is 18 minutes, but that includes a fair amount of preamble - removing lower clothing (except knickers), scanning the bladder to check it is full enough, checking details, positioning me on the bed using lasers so I am lined up correctly, and a bit of shunting about of the machine to get into position. And before the appointment there is the bladder-filling process, which you may or may not need to arrive early for. Do you have new dates yet?

Wythenshaw Hospital rang me to ask if I could attend clinic for pre op a week earlier than planned which suits me better as I was going to have to tie in later date with journey back from festival in Wales . Now going there and back on 2nd March . Chemo finishes 7th February so I should be ok to go to gentle festival and try not to ceilidh dance too much !
Operation still planned for 17th March .
New pains in joints today so I spent the afternoon under my heated blanket .
Nose still dripping and bleeding ...the glamour of my life !

Hi Trumpton, I'm at Warrington for some reason rather than wythenshawe even though wythenshawe is nearer. Festivals sound fab, my friend runs lots of them down in Somerset...always a great time there. Hope you're feeling ok despite the glamour.

@skap I don't know yet if its HER2 positive yet, they took so many biopsies yesterday from all the pockets so that I'll find out on Friday. All they've confirmed so far is that it's "more extensive than initially thought" and that I need chemo and an operation. Not which chemo or operation or in which order.

@Stinkyeddie the pressure dressings seem to be lowering the pain to be fair although I do feel a bit like a joint of meat all trussed up. Can see the bruising already coming down the side of my body so not sure how far that is going to spread

@Nonotmenori sorry you've got the news no one wants. I'll second what was said to you and say use your breast care nurse, they're so helpful.

Best wishes to everyone else. If I scroll back any further to re read I'll lose myself...little vacant at the minute

Finally, after 8 months on steroids, my liver function tests are back to normal. Just need to finish tapering off the steroids now. This feels like a little victory!

It looks as though there was still melanoma in situ on the margins, so there’s talk of me using Imiquimod (Aldara) to try to clear it. From the Macmillan vulvar cancer forum the side effects sound awful - does anyone have experience of using it?

@Toofaroutallmylife good news on the liver front. I wonder how you will feel without the steroids? No help on the Imiquimod I'm afraid.

@Hippiechick162 Sounds like there will be a lot to discuss on Friday.
They sometimes do Chemo before surgery (neo-adjuvant) to shrink the tumour, sometimes the other way around and often it'sa different type of chemo depending whether it's before or after. Do you have a long list of questions? One thing to note is that if they do chemo first it will start very quickly. You will have a lengthy appointment with a chemo specialist nurse who will go into great detail about it all.

@Trumpton those timings sound good. Is there such a thing as a gentle ceilidh dance?

I had my second MUGA scan today. This is at the furthest of the three hospitals I have to go to. A four hour job including two hours travel for the actual scan bit which is 8 minutes. I have to have these every few weeks for Herceptin as it can affect the heart.

Thanks Skap - I was very rough when I went from 10mg to 5mg a day, so am now weaning in 2.5mg intervals. We’ll see!

That’s a long day for you - are you relaxing at home now?

Toofar wow, 10mg a day is a lot. I had 4mg a week (dexamethasone) while on chemo and it had quite an effect. No wonder you have to wean off it!

I'm fine thanks, it's just such a lot of faff. I had to go to a ward to have a cannula fitted, even though I have a PICC line, then raipse to other side of hospital for scan. They give a radioactive dye injection and you have to wait for it to disperse around the body. Then a lot of setting up before the actual scan of 7 minutes. I am officially radioactive for 24

Hi @Nonotmenori - is it today you have more scans? Hope they go OK

Good luck for your contrast scan today @Nonotmenori . Thinking of you xx

CointreauVersial I'm starting on Monday with external radiotherapy. My appointments are all over the place. I'm worried about trying to work around my appointments and hoping I don't lose my job.
Thanks for the info I know what to expect now.

Hi @CaptainNancy it may not bring any relief but this is from the Macmillan support site

"Some people worry that their employerwill sackthem or find an excuse to make them redundant if they say that they havecancer. ... Anyone who has or has ever hadcanceris protected by the Disability Discrimination Act, which prevents employers discriminating against people with a disability (see page 36)."

Hope your appointments go well and please try to not add anymore stress onto yourself! Speak to your employer. I was really concerned but mine have been supportive (hopefully it'll be the same for you) xx

Just thought I'd check in, as I've been out of action the last few days. Managed to go to pick my wig up on Tuesday, but that was through sheer willpower, as I really overdo it and have been suffering since.

The "dire rear" that I thought had gone is back with a vengeance (I think it went away as I pretty much stopped eating).

Hope to meet hippiechick on Tues at Maggie's for the breast cancer support group (and anyone else who is Manchester based). Maggie's is such a great place - very calm and relaxing, and about a 2 minute walk from the Christie.

Hi zorgo
Just a quick check in from me as I think you are on the same chemo regime that I had and you have my utmost sympathy 're the dire rear. I think the perjeta may well be the main culprit although the combination of that with the tax and herceptin is no doubt contributing.
I was told after the fact that I had had a larger 'loading dose' of the perjeta for the first time I had it, and that it might be better on subsequent occasions, which it was but the dire rear remained a feature throughout for me and in fact I'm still getting it now that I'm just on the herceptin injections, though it's nowhere near as bad.
Strategies were to eat a low residue diet (nothing green or with fibre) take Imodium preventatively, and i also took a small amount of codeine for the constipating effect, not the pain relief. My appetite went completely by cycle 5 so the bland diet was tolerable......mainly custard and Heinz tomato soup!
I hope it gets better for you.

Thanks WTF - did you find that everything tastes odd? I'm finding most things just don't taste nice at the moment, and am sticking to mainly yoghurt and porridge, which is at least easy to eat. My sore mouth rules out anything remotely spicy aswell - at least I'm not putting weight on!