CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

I'm glad you enjoyed the meerkats fluffy I hope you have a restful few days

I meant to say thank you sunny for the hat recommendations. I bought a lovely bamboo one from wigs4u. It is so soft. I also bought some more from Anna Bandana in a style I like, just different colours. Not very imaginative, but at least I know they are comfy.

Flippy for the cold cap I would recommend a really warm cosy blanket. The hospital gave me a heated blanket but it was a bit temperamental at times. The cap and all the tubes are also really heavy - I sometimes used a neck pillow to take the weight.
The strap is pretty snug around your jaw so I found eating and drinking quite tricky anyway.
Good luck with it - if you can get through the first 20-30 minutes you really are doing amazing - and it's much more bearable from that point on. I was eventually given sedatives before as I got quite anxious but hopefully you are made of tougher stuff than me! But it's worth asking if you want to continue but find it difficult.
I'm all done with it now. My hair does resemble a tumbleweed and is the texture of crispy seaweed!! - I think I've lost a good third - but I have even coverage still and I'm noticing some new growth so hoping by summer it will look healthier!

I start radiotherapy within the next two weeks - have my planning scan on Friday.
I have to have a bolus covering so my skin is going to get particularly blasted any tips for radio appreciated!

flippy I asked for 2 towels, wrap one round your neck and an hour or so in swap it for the dry one, much more comfy as they get quite damp, you have to have wet hair for it to work and by the end your head is crunchy with ice!
As rocket said, the first 20 minutes is pretty unpleasant but then you get used to it and it's fine(ish..)
I lost about a third, but I had no bald patches, now (7 months on?) I have slightly odd hair, still very out of condition and a third of it is 2 or 3 inches long but I don't regret persevering.
I had results day at the onc today, clear mammogram, coming off the tamoxifen has settled the hormone levels. He said I was "very interesting" to have had such a dramatic skewing of oestradiol by tamoxifen - I smiled and nodded - he thought it had interacted with the zoledronic acid infusions.
So I can stay on letrozole, don't need an oophorectomy and will get hormone levels checked 6 monthly as I'm so "interesting" .
Poor DH is quite overwhelmed today, his dad dying, his stepmum staying last night, his mum being difficult about the whole thing, and a hospital trip with me today have finished him off and he had to go to bed for a few hours this afternoon - sleep is his retreat of choice when life is a bit much.

just a quick update ladies on my tests and hopefuly it will be able to help someone else - thickening and pain in breast turns out it is a thing called calcification (the non cancerous one) and a benign cyst phew!! thanks again for your support and congratulations on this thread it is a godsend

Brilliant gotta - I'm really pleased for you!!

Brilliant news, gottaget. Did you have a mammogram and ultrasound?

Hi all, I've been a bit of a lurker here & on other threads over the past fews weeks. I wondered if you wise ladies might be able to give me some advice?

I visited the breast clinic on Monday about pain in breast plus lump / lumpy area deep in the breast tissue (lump unpalpable using the normal medical breast examination techniques - neither GP nor, initally, doctor at clinic could find the area I was worried about).

I showed the breast clinic doctor where I could feel the lump, she didn't seem concerned at all (now worrying she never felt what I can feel), and when I asked her what it could be she said "oh probably just an enlarged milk duct".

I had an ultrasound and the sonographer asked where I thought the lump was - quite tricky to show him whilst lying down, and he scanned my breast in specific areas and said all the tissue looked absolutely fine.

It was commented that I have glandular / dense breasts so they react to hormonal changes more (hence the pain) and can be quite lumpy, but I was sent away happy and reassured that all is fine.

However, 3 days later & I'm now stressing again...the lump is still there, I have no 'real' explanation for what it could be and I wonder why couldn't the sonographer see it on ultrasound? Will I get a letter reporting their findings after clinic? I assume my GP will.....I feel like i'm the most anxious idiot right now, its so not me to be so worried once somebody has assessed me and said everything is fine.

I had an appointment with a consultant breast care oncologist some time after my clinic appointment. They told me I'd be getting one regardless of the findings at the clinic. Did they not say you would too? I'm sure there's nothing to worry about as they'll have had a good look with the ultrasound. I, too, was told I had dense tissue. I chose to take it as a compliment 😄.

super no I saw a specialist registrar, then ultrasound, then back to the registrar. It's a one stop clinic so everything happens on the same day. They said all appears fine, so I guess I should take that as it is meant. I think I was perhaps expecting 'more' i.e. It's a cyst / watery lump etc. But nothing other than "we're not worried". I've tried ringing the clinic today as the letter says they welcome feedback and to call if you forgot to ask questions. No answer earlier but I'll keep trying.

rocket good luck with your planning scan. Sorry, I've not had radiotherapy. Hopefully someone else has had the bolus and can advise :)

pepper what a lot on your plates at the moment! Your poor DH. I hope his sleep helped. I'm glad your oncologist appointment was mostly good news :)

gottaget that's very good news :)

MajorClanger I hope you can get some reassurance. Maybe you could make an appointment with your GP in a few weeks and ask them to talk through the results

I hope everyone is having a good day. Sending extra special love to any lacies who need it, especially those who haven't posted for a while.

Thank you whatwould, I feel like an imposter on this thread. Think I need to calm down a little & revisit GP. Thanks again xx

You're not an imposter at all :) you're welcome to stay here as long as you need

Thank you so much. Finally got through to breast clinic - extension had changed, hence no answer earlier. They were very helpful - putting my whole report and all paperwork in the post to me today, plus I can telephone to speak to a breast care nurser whenever. Phew. Thanks once again

Hi Ladies, new poster here in need of some hand holding as recently diagnosed with early cervical cancer.

Had abnormal smear in Dec, called in for colposcopy 3 wks ago with CIN3. They removed what they could find and sent it off for biopsy. Dr said she didn't think they would find anything sinister, all looked fine and I'd need another smear in 6mths.

Called back last week and they found 2mm cancerous cells and they'd need to send me for an MRI scan (27th Feb) to check it hasn't spread but she's staged me (estimated I think) at 1a1. I've been told to expect surgery and to have a serious discussion about whether I want more children. (We have one, and were hoping to try for another this year).

Have obviously been very up and down with this news. Convinced myself that I have everything from colon to anal cancer and am somehow riddled. I was feeling better after finding some positive stories on Jo's Choice, but spoke to my oncology nurse yesterday and she's scared me again by generally not being very reassuring. I realise they don't know anything until I've had the MRI scan and need to be careful what they say, but there was no 'Hopefully we've got it already' or 'It's unlikely it's spread but we need to be sure' etc etc. She's basically told me to expect a hysterectomy! Does she know something I don't? Is it likely to be worse/have spread because they couldn't see anything at the colposcopy? Is there any chance they could have removed it all already or am I wasting my time hoping?

Really struggling with the not knowing and so up and down.

Sorry for the ramblings

Major that sounds reassuring. I'm glad you got through :)

Creme welcome, but I'm sorry you've had to join us I'm sorry, I don't have any experience of cervical cancer so I can't answer any specifics. Hopefully someone will be along shortly...

In the meantime, your nurse sounds a bit like mine was to begin with! I think she was just trying to get the balance between being reassuring and preparing me for potential bad news. But it wasn't very cheering.

It's easier said than done, but try not to get too ahead of yourself until you've had the full results and a treatment plan from your consultant.

Some people like to know everything they possibly can, and others would rather know the bare minimum. Sorry, I do not know what your preference is, but if you might find it helpful, there's some information about stage 1 cervical cancer on the Cancer Research UK website which does discuss possible surgical options.

Waving to weegiemum (from Auld Reekie): hang on in there. it is tough, though, no doubt about it.

ArgyMargy, wish you a speedy recovery. My bilateral mast. has now been booked for 7 April. Still haven't a clue if I should go for recon. or not, I really don't want to but DH thinks I will regret it and that I shouldn't decide in haste. Do you still have the drains in? My consultant told me today that he doesn't put in drain, couldn't quite comprehend why (he did say but it went completely over my head).

Halfbaked, yay, you're home!

gottagetthroughthis - welcome! And remember, you WILL get through this. Sending all the positive thoughts that I can.

amberlight - congratulations on six year and counting (and forever)!

pepperrabbit - so sorry about your FIL, it is shit when you lose a member of your family.

Pepper, so sorry to hear about your FIL, I hope you and your DH are bearing up. Thank you for the info re cold cap. Hello Rocket, thanks for your tips too. I am certainly not made of tougher stuff!

How are you doing Argy? Drains out yet? I’m sure you’ll feel a lot better once they’re gone. I had Laxido prescribed to go with the codeine. Glad you’re home Halfbaked, hopefully your team can offer an alternative or a solution.

How did your check up go Amber?

Hello to those joining the thread - fingers crossed you don’t stay for long! Creme du Sudo, sorry you’re here. I don’t know anything about cervical cancer, but I think we all understand the worry of waiting for results. Keep posting in the meantime, there’s usually someone who knows and there is a lot of support on this thread.

I’ve been referred for a brain scan, as my dizzy spells, pressure and headaches continue, and I had a very scary episode at the weekend of nausea, headache and then a sparkly floater disturbing my vision for about 30 minutes. Onc said he thinks it’s unlikely that the cancer has spread to my brain but they need to check, so that’s another couple of weeks of worry.

My iron levels are screwed, I fainted in the early hours the other morning and my nose took the full force. Ouch. Swollen and a bit bruised. Nurse failed to get my PICC in yesterday which was pretty painful, so I had to go to a different hospital today, where they sorted it no problem. I don’t think lines are offered as standard everywhere (or anywhere?) but I asked for one and the onc said yes. I still would have preferred a port, but it’s better than having to have an IV every week for the next 12 weeks!

And on that note, first chemo and Herceptin tomorrow….

Haven't been able to keep myself up do date on this page!!!!

pepperrabbit, fantastic to hear your news. A bit like mine today - (see below).

*WhatWouldLeslieKnopeDo - glad to hear that you found something that you like from Ana Bandana.

fluffywhitekittens - glad your weekend was lovely. And hope you can manage a trip to the cinema this coming weekend.

gottagetthroughthis - fantastic! Only saw your update now that I am reading through this current page.

MajorClanger123 - this sounds like good news. If you are still worried see your GP for reassurance. They may refer you to the Breast Clinic again but they won't mind, their job is to reassure, among other things.

chewingthewasp -

I had the sentinel node biopsy & surrounding tissue post surgery results this lunchtime - all NEGATIVE, no spread anywhere else, it is OUT! Phew! Have got my first stash of Tamoxifen and have been booked in for bilateral mastectomy on 7 April. Then 6 months we'll talk oophorectomy.

Can't even begin to tell you how anxious I was about 3 days before today, couldn't sleep (literarily), had most awful thoughts racing through my head, trying to go to work to take my mind off and not succeeding very well in this - I mean, they were just very unpleasant couple of days.

Light at the end of the tunnel now - will still hang around this thread if I may.

Sending lots of love to everyone here, you are all great, you really are. :)

....passing through....waving to all.... all OK on today's proddings from Mr Surgeon, and he reckons that's me done for another year. Phew...

chewingthewasp - wishing you all the luck in finding a suitable trial. Let us know how you get on.

balkan that's definitely something to celebrate tonight it's your body so you need to make the right decision for you. Does the reconstruction need to be done immediately or is it something you could have done later on if you change your mind? Not suggesting you should change your mind, but it would remove the pressure of making a final decision now if you're unsure

amber excellent news too

Flippy good that they're being thorough and that your onc isn't overly concerned, but what a worry for you do you have a scan date yet? I hope they can squeeze you in ASAP to minimise the worrying time. Good that you've got your PICC sorted - sorry that it wasn't straightforward. Good luck tomorrow

Good morning lacies; I hope everyone is having a good day. I still have my drains and am nearing the end of my tether. Going to hospital this afternoon and if the nurse says they need another 24 hours there may be a mini-meltdown! Otherwise recovery is progressing well with both sensation and mobility returning to arm and shoulder. I'll see the plastic surgeon next week for him to put some more fluid in the expander.

balkan from what I know about drains (which is not much) it seems that there are many different opinions and practices, so it doesn't surprise me that your consultant has said this. Before there were such things as drains, the fluid would be aspirated via needle if it built up - and this is what happens after drains are removed, if there continues to be a buildup. Congrats on your results by the way! In terms of reconstruction I just went with my gut feeling - which was that I didn't want to be without a breast.

Flippy - I've resolved my constipation by stopping the codeine and taking some senna tablets that they gave me to bring home. I've also finished the antibiotics now so hoping my tummy will feel less assaulted.

Congrats to amberlight - so pleased for you!

Thanks Leslie and Flippy and hello to everyone else. You're all so brave!

I'm definitely getting ahead of myself. I've read all the info regarding treatments etc but too scared to read anything more. I've been finding some of the positive forum stories helpful but somehow the scarier ones stick in your mind more don't they? Trying to focus on the fact that the Dr was so surprised as surely it can't be that bad if she didn't expect to find anything/couldn't see any sign.

I'm trying that positive thinking trick where you visualise the outcome you want and supposedly it happens.

Someone just needs to keep me away from the scary forums!!!

Its lovely to read so much positive news about people!

I got the letter this morning - seeing the breast clinic on Tuesday evening.

Nervous but glad the appt has come through.

I think my dd1 has twigged on though, she knows something is up, she keeps asking me if I'm ok. She's 17.

Loooong day. I'm still at the hospital as I'm having a blood transfusion. About another hour and I'll be free! I've also has zoladex so menopause here I come.

I was ok with the cold cap, but I suspect because it wasn't put on properly. Biyt pissed off about that as nurse refused to listen or change it. She put conditioner through my hair but didn't mist it with water first, and I swear the cap was a size too bg. The outer cap wasn't asnug fit either. It was on for the correct length of time, and left for a further 30 mins after turned off, but there was no ice in my hair. I said that we should use the small size next week and I'll bring a misting bottle myself. I suppose I'll know soon whether it's working but I honestly think it was a waste of time today. Think the nurses need better training!

Sorry for the grumbling, it just seems stupid to have the equipment but not use it properly.

Just want to get home and snuggle with DS! I'm in a ward with a very chatty old lady, but she has a v strong accent so I'm struggling - trying to be kind but I'm not interested! Oh well, her visitors have just turned up with a massive Chinese takeaway and they're all settling down to scoff it! Good job there's no one else on this ward!