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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

983 replies

WhatWouldLeslieKnopeDo · 31/12/2016 20:23

Star Happy New Year! Star 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! :)

OP posts:
weegiemum · 13/02/2017 12:06

I'm just putting my head in the door - I'm waiting for my breast clinic appointment to come through. My dh is a GP so he's let me know the way things happen here (same as everywhere else, I assume).

I'm not googling and I'm trying not to panic. I've 3 teenagers so I want to stay normal as possible for them at the moment.

chewingawasp · 13/02/2017 12:40

Welcome "weegie*Flowers
Leslie hope chemo goes well.
I have seen my onc and been left feeling pretty despondent really. He has agreed to refer me to the trials unit of 2 hospitals but is not hopeful of there being anything suitable. We discussed immunotherapy treatments but as nothing is licensed for my particular cancer I will have to consider private or overseas which is obviously costly. I am going to send out a couple of emails directly to professors who might be able to help. Worth a try I guess.

pepperrabbit · 13/02/2017 12:52

Hello weegie sorry you find yourself here, we're happy to handhold and support whatever the outcome. Ask any questions, or rant away. It's good to have an outlet while keeping schtum at home. We didn't tell our 3 till after all the results were in.
We had a lovely weekend with friends staying, and threw a party for my birthday/cancerversary and then found out this morning that DH's dad passed away last night in his sleep. We're all very shocked.

pepperrabbit · 13/02/2017 12:54

chewing everything has to be worth a try. I'm sorry the onc couldn't be more help, I hope they find something.

chewingawasp · 13/02/2017 15:41

pepper so sorry to hear about your fil. What a shock Flowers

Halfbaked · 13/02/2017 20:49

Welcome weegie this is a good place to hang out whilst you wait.
pepper condolences to you and your family.

I'm still in hospital despite my desperate pleas to be sent home.
I did finally see a Dr today and the transfusion was due to low hb count. I've had a second transfusion today and they want to see what the levels are like before they send me home.
Has anyone been neutrapenic after each chemo even with GCSK injections? The Dr said I'd need to speak to my onc, who I have an appt with next week to discuss it.

I just want to know if they can do anything else? Or is this is the way my body responds and to be prepared for a hospital admission a week after each round?!

WhatWouldLeslieKnopeDo · 13/02/2017 20:53

Hi weegie and welcome Flowers I hope you don't have to wait long

chewing I'm really sorry your consultant was so negative. I hope one of the trials units has something. It definitely can't hurt to contact relevant professors either. Fingers crossed.

pepper I'm really sorry for your loss Flowers

Chemo went smoothly today. My throat is really scratchy this evening. It feels like hayfever Confused

OP posts:
WhatWouldLeslieKnopeDo · 13/02/2017 20:58

Halfbaked sorry, cross-posted. I hope the blood transfusion has helped, but sorry you didn't get home today.

Sorry I'm a bit chemo brained. What chemo are you on at the mo?

They might lower the dose. Or if it's docetaxel they might switch to the weekly version, paclitaxel. I don't know what else - perhaps they can increase the dose of the injections or give you a longer course?!

I hope you won't end up in hospital each cycle Flowers

OP posts:
weegiemum · 13/02/2017 21:23

Sitting here by myself - 2 of 3 dc are away as part of half-term, ds is gaming his holiday away (he's 15!). Dh was off today but is on call tonight so just me, and my mind is racing.

Dh felt the lump for me and said its probably nothing but needs checked out. My GP was great and has referred me to the breast clinic without having to see me. Should get an appointment later this week or next week.

I have recurrent depression which is already quite bad at this time of year, and I also suffer from a neurological illness which means I've got restricted mobility and a lot of numbness. In the last 3 years I've had a couple of brushes with serious illness - a very badly broken ankle and a bout of septicaemia which nearly put me in kidney failure, so after I didn't go into hospital overnight for the whole of 2016 I thought life was on the up! Now this :(

I know 90% of breast clinic referrals end up being benign. I can't help but think I won't be one of them. Misery itself tonight!

ArgyMargy · 14/02/2017 07:58

Hi weegiemum I hope you managed to sleep. If you look back through this thread you might see amberlight's summary of why you're probably going to be completely fine Smile. I know you already know this, with your DH being in the trade & all but I found it really sensible and comforting.

Hope you don't have to wait too long. Are you in Scotland?

sunnyhills · 14/02/2017 10:03

Oh weegie sorry to read of your late night terrors .Always worst at night .And I wonder if fact that DH is GP means you feel need for stiffer upper lip than you would otherwise ?

Anyway here's a repeat of a post from our lovely Amberlight who describes herself as

" not any sort of healthcare professional. I had breast cancer diagnosed five years ago, had all the usual stuff done (chemo, surgery, rads, herceptin for a while) and started reading the oncology and related papers online every day. And following the big cancer conferences and their summaries of latest and best news. Have done ever since. Just an autistic science-geek, really, but there's so much encouraging news out there for so many people. Whatever I say on here should always be checked out with teams, and teams are always the best people to know what's what. No great skill to what I do at all - I just happen to have read a lot of it "

and says

For those who have not discovered earlier writings on this on this thread/elsewhere, some possible reassurance for breast cancer waiting.
9 out of 10 lumps in boobs are something else.Only 1 in 10 is cancer

Firstly, it is impossible to die from a lump in the boob. Literally cannot kill you in there. So if that is where it is, you're fine. Treatment for that is not fun, but it's doable.

If the cancer has had a long long time to grow and wander about, it may have got into the lymph nodes under the arm. They are a 'safety net' of a sort for the body. So, if they have caught it, that's a pretty good thing. It means more surgery to get it out of there too, of course.

If the cancer has spread to elsewhere, you're pretty certain to know about it. Not everyone does, hence the tests. But if it has reached other bits of the body, people tend to be jolly unwell before treatment. If you are feeling fine, that's a good sign that you are fine.

Even if it has spread to elsewhere, these days it's remarkably treatable. We really are seeing some results showing 80% success rates from treating cancer that has turned up in one place in the liver, for example. If it's first ended up in the lungs after the boob, one recent study showed most people are still alive and kicking ten years later...and counting. That was a surprise to the teams.
So, it's not the killer it used to be. Treatments can settle it down to be a long term nuisance for people, if it has spread. No guarantees at all. We all know people who have not been fortunate with their own cancer, and we hold them in our thoughts. But for the vast majority, now, there is every good chance of seeing old age.
None of it takes away from the eek of waiting, or the exhaustion of treatment if it's needed though. And all of us live with that tiny bit of uncertainty. It becomes a 'new normal', after a while, though, for most of us.
Hoping that has helped a little.
As I say, no guarantees. But we really are seeing some very good news from the multiple new treatments and potions."

Calm, wise words .Though as she says they don't take away the "eeek" factor .

sunnyhills · 14/02/2017 10:10

chewing good idea to contact clinics .I'm sorry to hear onc was less than encouraging .
But you're an individual ,not a statistic and advances are made every day .And you're so right to question treatment .

pepper I'm so sorry about your FIL,hope you're family are coping .

halfbaked bums to still being in hospital .Did you say you had little ones ? If so ,remember how they process serious emotional things - patchwork .One minute upset but the next playing happily . They are resilient .

Leslie hope you're tucked up and sleeping through any SE .

charliebear78 · 14/02/2017 14:03

Sorry to jump in here with this question...
Does anyone know if I can request a Colonoscopy?
In fairness I have(or about to be having) every other test but not this one ans I feel like this is the one which would ease my worries.
Symptoms been ongoing since before Xmas,Most have eased off but just constantly feel like I need the loo,yet cant go(am going as normal once a day however, so doubt this would be the case if there was anything to fear? just always have the urge that I still need to go and feel bloated/full)
I ahve just got myself into a real state.
GP said was going to refer me to Consultant but this will take weeks and
weeks and I do not want to wait to long with these doubts.
I already feel like my Doc thinks its all in my head.

WhatWouldLeslieKnopeDo · 14/02/2017 15:36

charlie if your GP has already referred you to a consultant then I am not sure what else you could do. When you see the consultant you will be able to ask them about a colonoscopy and they are better placed than the GP to decide what tests are appropriate. You could ask the GP to refer you urgently, but they will only do that if they have a strong suspicion that your symptoms could be cancer.

I assume your GP has performed a rectal examination to check for haemorrhoids etc? Sorry, that's usually the first thing they do, but just in case they didn't!

You could try and have a colonoscopy done privately, or see a consultant privately. But it's quite expensive I think.

I hope you get your referral soon :)

sunny I had an early night and slept for over twelve hours Grin

weegie sorry to hear about your other health problems. I hope that you get an appointment soon to put your mind at rest Flowers

I hope everyone is having a reasonable day!

OP posts:
amberlight · 14/02/2017 15:42

Hi Weegie, and all. Waving, generally. Yes, Weegie and I have found each other for a chat.
I think someone asked how I was, a while back. I think I'm OK thanks. Still getting used to having a grumpy heart (after it seems to have objected to radiotherapy/chemo, some years after having these). But at least it's grumpy in a non-lethal way.
Next annual checkup on Thursday, but I've done a whole six years now. Blimey.

Halfbaked · 14/02/2017 16:12

I'm out!!

Finally squished up on the sofa with DD and relieved to be home.

Thanks leslie I will ask my oncologist next week about the possibility of weekly instead. I am on docetaxel and carboplatin, I seem to remember the oncologist saying it was a high dose as my tumour is so aggressive. (I'd had a clear mammogram in April and check myself monthly, it was 3cm when found in November)
Glad you got a good nights sleep.

sunny thanks for pasting amberlights previous post it is really reassuring and comforting to hear.
Flowers to all

WhatWouldLeslieKnopeDo · 14/02/2017 16:30

Halfbaked yippee for finally being home! Enjoy squishing on the sofa with DD :) I bet she's thrilled to have you home. I've no idea if weekly chemo would be an option. But I'm sure they'll have some ideas as they don't want you winding up in hospital every time either.

Good luck for Thursday amber Star

OP posts:
gottagetthroughthis · 15/02/2017 06:54

sooo worried and glad I found this thread have not read through it yet but defo will. Had a sore boob one day it just got sore off to docs and she discovered a thickening -, also my nipple is a bit inverted but doesn't stay that way does come out in the cold - am going to Private hospital tonight as can't wait another week for NHS or I will go crazy - anyone else had any of these symptoms abs terrified

ArgyMargy · 15/02/2017 07:59

Hi amber good to see you! Best of luck for next Thursday.

Gotta please read amber's words as posted up thread - they really helped me.

Just thought I'd check in - 5 days after mastectomy with temporary recon. Feeling a bit shit and I want these bloody drains gone! Stopped the codeine because I can't bear constipation but I think a nighttime dose might be wise tonight. Overall it went well and I'm just impatient.

Hope you all have the best possible day Flowers

SuperMoonIsKeepingMeUpToo · 15/02/2017 08:29

gottaget - I had (and still have) a painful boob and the GP detected some thickening. Went through the urgent referral route and all is fine. No idea why it's painful, but it's most certainly not cancer. Good luck, hope you get good news soon.

weegiemum · 15/02/2017 11:42

gottaget - I'm waiting too for breast clinic, I have a smallish lump in my right breast. Best of luck at your appointment this evening.

WhatWouldLeslieKnopeDo · 15/02/2017 12:19

Good luck gottaget and welcome to the thread. You can join weegie in the waiting room :) hopefully neither of you will be signing up for full membership!

Hi SuperMoon I'm glad yours turned out fine :)

Argy I hope you'll be drain-free soon. Have they given you any indication of how much longer they'll be in? I'm glad all went well, but impatience is understandable Flowers

I am having an under-my-blankie day today, though at least I'm dressed in proper clothes which is an improvement on yesterday Grin I hope everyone is alright today

OP posts:
gottagetthroughthis · 15/02/2017 13:15

Thanks to all of you lovely positive ladies for taking the time to reply. Haven't got reading all yet but all the very best Argy didn't know they could do recon as quickly! [Flowers] Supermoon Thanks for sharing. Weegie thinking of you too similar situ as myself. Whatwould thanks for all the positive things really appreciating it now don't feel so alone

WhatWouldLeslieKnopeDo · 15/02/2017 13:54

If you don't have the energy to read the whole thread gottaget scroll up to the top and read the third post of the thread, entitled amber's words of wisdom :)

You're definitely not alone here. Nearly everyone has been, or is, where you are now. Obviously most of us who have stuck around got less-than-brilliant news. But most of those who go for check ups will get good news and get on with their lives. Fingers firmly crossed that you and weegie will be among them Flowers

OP posts:
fluffywhitekittens · 15/02/2017 14:27

Half Baked glad you're ot and having squishy sofa time with DD,
Chewing I hope you can find something somewhere.
Pepper so sorry to hear about your FIL
Weegie and others, hopefully Amber's words are useful and reassuring.
The Meerkats were lovely, although fairly stinky :) Had a busy couple of days at the start of the week so having a couple of lazy days in now and planning on a shopping trip and possibly cinema trip at the weekend.

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