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Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

968 replies

WhatWouldLeslieKnopeDo · 29/09/2016 23:49

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

OP posts:
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chewingawasp · 01/10/2016 13:25

My hair used to look like a conker. Who knew that in just a few months I'd end up looking like a bog brush badger.

EtTuTuttiFrutti · 01/10/2016 13:33

Grin Bog brush badgers are lovely little critters.

amberlight · 01/10/2016 14:09

Thank you for the new thread, Leslie.
Waving to all.

For those new, might be worth a hopefully-cheering update on one of the common cancers - breast cancer.
Found a lump or other signs of possible cancer in the breast? For most of us, that was the scariest moment (and couple of weeks) of our lives...the waiting bit. The unknown. It is with just about any cancer diagnosis or tests, of course.
But...teams are improving treatments all the time. Certainly in the five years since I was first diagnosed with breast cancer. Mine was one of the aggressive sorts. [Technical notes: HER2+, grade 3, stage 2, not ER+, not PR+,] and I wasn't able to take much Herceptin, which normally keeps my sort under control. I got zapped with everything they could zap it with. 4 lots of FEC chemo. 4 lots of Tax chemo. Surgery. Radiotherapy. A bit of Herceptin until they had to stop it.
In three months, it'll be six years since the diagnosis. Still here. 95% of people now will be still here, 5+ years from now.
Found a lump? 9 out of 10 will be benign.
Found out it's breast cancer? 19 out of 20 will be just in the boob. And can now be removed/zapped/poisoned successfully.
Found out it's breast cancer that has spread beyond boob and armpit? If it's in just one other place, we're seeing results where 80% of those can still be zapped/surgeried/poisoned and it works.
If it's in more than one other place, e.g. liver, bones, lungs, then teams can give up to seven different forms of 'holding treatment' for many sorts. That means that it converts it to a long-term nuisance, similar to living with diabetes or similar. Annoying, certainly.
There are no guarantees. Some will have a sort that is truly tricky. We'll never deny that.
But, for most, your chances of seeing your children grow up are pretty much as good as anyone else's chances, now.
No-one here will promise that treatment is fun and easy. It's getting easier. Teams are working out more of who doesn't need chemo, who doesn't need radiotherapy, who doesn't need mastectomy. So, for a good number, it's kinder than it was. It's doable.
Here, many good people to ask and share the journey with. There's usually someone who knows what's what. And people at all stages of this.
There's that strange meme online that says, "All that cancer patients want is a cure for cancer". Well, for sure, we do hope someone finds cures for the various sorts. But we want the same stuff as everyone else. We just have some cancer treatment, at some point. We still go to the pub. We still go on holiday. We still go to work. We still have a right old laugh. And we're still hoping to be here in another 20,30,40 years.
So, definitely no guarantees. Lots of reasonable news, though.

Top tip? Stay Off Google. No, really. The stuff on there is 99% rubbish from the ancient times before modern treatments. You'll frighten yourself into hyperventilating for no reason.

Another top tip? Watch out for 'woo'. Woo being 'if you have a coffee enema, it's so much more effective than chemotherapy', etc. Listen to your team. Respect what they say. By all means ask if other things can also help, but do listen to the main specialists.
Things that aren't 'woo'? Pretty good research happening around sensible amounts of cheery exercise, e.g. brisk walk every day. A glass or two of red wine now and again. Vitamin D. Curcumin and black pepper supplement. Lactoferrin supplement. Avoiding bright white/blue light at night as much as possible. Having a cheery social network. The oncology journals are reporting the findings on these. Talk to your teams about what they think might help.
And hoping that everyone here finds the right things to go on to live for many more years x

chewingawasp · 01/10/2016 14:35

Hi Amber long time no see. I chatted to you a few years back on the SEN boards under a different name and now find myself here. Your words have given me some positivity so thank you Flowers

royalmama · 01/10/2016 15:32

amber so good to hear from you and, as always, you bring us much well established reason to hope. I hope all is well with you.

HollyBollyBooBoo · 01/10/2016 15:40

Amber - thank you that was so helpful, amazingly powerful statistics.

amberlight · 01/10/2016 15:40

Yes, seem to be OK, thanks. We had the interesting stuff earlier this year where the rads had caused a rare benign tumour in the boob, and I had the surgery to remove that. But nothing of note since, hurrah.
I pop in to read occasionally, but not posting very much. Keeping everyone very much in thoughts though.

mintyneb · 01/10/2016 15:44

Lovely to hear from you amber! Great to hear you are still going strong after 5 years and as always your post gives confidence to all of us whatever stage of the journey we're at.

Welcome to the newcomers however long you have to stay with us. For those of you waiting for a diagnosis you have my sympathies as it is a truly awful time

leslie so glad you're home and managing to jab yourself as needed. I'd forgotten just how much you've gone through, you are doing so well to keep yourself and the rest of us together

tutti enjoy your date night however you dress! I would definitely be putting a complaint over your treatment this week, your hospital needs to take a seriously good look at itself

EtTuTuttiFrutti · 01/10/2016 16:01

Nice to see you Amber. Early on, I stole your brilliant advise and have the Curcumin, Lactoferrin et al. My stats are also grade 3 Her 2+.

Minty I don't think I'm going to complain I just need some reassurance. They've been brilliant up until this last time, and I wasn't in the least bit apprehensive when going in for this third surgery. I think they were just genuinely trying their best to knock me out , and a bit under stress as I was a last minute, late surgery.
I just want to reassure myself that they'll gas me before hand next time. I've looked at all the needle sites and they've tried lots of places (for example 5 on my knuckles, three on the inside of my wrist etc.), but they don't appear to have tried to get in the same vein twice.
Leslie, so glad you're back home.

cleanasawhistle · 01/10/2016 16:11

Hi Leslie,thank you for remembering me and asking about the swelling near my collar bone.I did phone my breast care nurse and she examined me,she found the swelling and sent for the doctor.He thought it was fatty tissue.
I already had a routine appointment booked in for the week after with another doctor so I never mentioned the swelling but he examined me and said he could feel something and to be on the safe side I was to have a scan......luckily scan done and just a build up of fluid.

All was fine then on Monday I decided to make an appointment with my GP to discuss something I had noticed off and on and was worried about.
I have had a letter from the Colorectal department and am waiting for a phone call to make an appointment.

Pleased to hear you are out of hospital Leslie, you have been through so much,take care.

Tutti I had a very similar experience with the cannula with my last operation. Like you I have the one good arm,I had been in hospital for a few days having intro antibiotics and developed phlebitis so when I got to surgery they couldn't use that arm either. Took a lot of effort to use my foot.

I have quickly read through the post ,wishing everyone well,

SandwichYum · 01/10/2016 17:43

Hello Leslie thanks for thinking of me. I have finished treatment but only occasionally lurk here as anything cancer related increases my anxiety. Post treatment is a very difficult place.

AnnaFiveTowns · 01/10/2016 18:53

Amber, thank you for your reassuring advice - you always cheer me up!

Sandwich, I'm like you. I dip in occasionally as I try not to think about anything to do with cancer as it makes me too anxious.

Chewing, I was in a lot of pain with my back prior to the biopsy even though the lesion was only about a cm big. The Dr said it was because it was near to the base of my spine where there are lots of nerve endings. They couldn't tell from the mri scan whether it was cancer for sure so they did a biopsy (removed about half of it) and strangely this made the pain go away. I haven't had any real pain since the biopsy. It turned out to be a non cancerous Hibernoma in the bone which is very rare. Do you know whether your lesion is cancerous? If so, is it secondary or primary?

changingnameforthispost · 01/10/2016 19:27

Thank you all for the welcome.
I've been so impressed so far, as I only found the lump last Saturday, saw the gp first thing Monday, and was at the breast clinic yesterday!
I had all the tests and a biopsy yesterday and the consultant said she is pretty certain it is a cancer, 2cm in size, but nothing in the nodes.
I will go back on Weds to find out what type, and the treatment plan, but at the moment am feeling quite calm, as I know so many women who have responded well to treatment and are now getting on with their lives.
I will certainly not tell my dc until I know the treatment plan, and will somehow work out how to do this across time zones, and their new exciting fresher lives.
My one dd lives with us half the week, and I guess I may have no choice but to lean on her more than her siblings.
My dh is good egg though, and I know he keeps calm in a crisis. However his mum is under a breast care clinic and will find out her treatment plan on Wednesday too.
I guess it will be what it will be be.

chewingawasp · 01/10/2016 20:06

Anna I have no pain at all. The MRI shows a dark area which they don't like the look of. No biopsy as yet but it appears to have the same characteristics as cancer. It was thought to be secondary but after a meeting it has been classed as another primary (other one is in breast). I am a rare case as the type I have is usually found in the lung and can be widespread but seems contained at the moment.
changing it's good that you have been seen so quick. I had quite a wait for my results. Hope mil has positive results.

AnnaFiveTowns · 01/10/2016 21:07

Changing, that sounds very sensible.

Chewing, I was convinced that the tumour in my spine was cancer; the Macmillan nurse and the surgeon too. It was only when I had a bone scan that showed nothing that they decided to send me for a biopsy. Before I had the biopsy the oncologist at the spine hospital also thought it was probably cancer - mainly due to the nature of the pain. He said to me that if I wasn't in pain then they wpukdnt be concerned about the lesion at all as these things show up all the time as incidental findings and are usually harmless. I think the fact that you have no pain is reassuring.

Speedypenguin · 01/10/2016 21:24

Evening all. I don't get here as often as I used to but do think of everyone.

Anna and Sandwich- after treatment is a difficult time indeed. It throws up all sorts of emotions. Lots of people want/expect you to get back to normal and can't understand why you might still be anxious or worry about any pains/niggles. I sometimes feel they think I shouldn't be feeling this way and need to get a grip. Luckily there are people here and others who I've met/can talk to that understand. Am now 2 and a half years post diagnosis and realised the other day that it doesn't dominate my thoughts like it used to.

I always find it useful when others recap their situation as my memory isn't that good anymore, especially now I've hit the menopause!! So for what it's worth- here's mine.

Diagnosed March 2014 at 42. Two small lumps- one triple negative and one Her+. Had chemo first then because I carry the gene I had a double mastectomy with immediate recon. Had herceptin despite problems with my heart from chemo (tablets kept on top of this). Earlier this year I had my ovaries out. Am now back at work full time (gutted to find they only paid me for three days a week as I did before the summer instead of a full week!).

One of the best advice I had was Amber telling me not to google. Her posts are always invaluable with lots of positivity and they kept me going when I was feeling low, as did all the support from the lovely people on here.

I'll have a read back through and see if I can catch up a bit. Sorry that there are lots of people I've missed.

rocket74 · 01/10/2016 21:51

I'm newish - but summary is : went to doctors with lump and sore nipple mid August. Initial diagnosis of DCIS requiring WLE and radiotherapy. This all sounded quite neat and manageable. No chance.
MRI and nipple biopsy showed invasive cancer.
I start chemo in the next week I think as I had my port fitted yesterday,
I'm 42 with two young children.

Diagnosis: HER2 positive, oestrogen receptor negative, Grade 3, node positive carcinoma of left breast and possibly armpit.
Treatment: neo adjuvant Docetaxel chemo with Pertuzumab and Trastuzumab, followed by surgery and radiotherapy.

I don't necessarily fully know what all the above means but I'm slowly learning.

Herceptin has been mentioned also?

mintyneb · 01/10/2016 22:53

rocket herceptin is the brand name for trastuzumab. Us patients tend to refer to the drug as herceptin, oncologist's tend to use trastuzumab

speedy good to see you again!

If we're doing a quick recap I'll chuck my 2 pennies worth in....

Diagnosed July 2014 aged 46 with 3cm grade 3 her2+/hormone negative invasive cancer. Had 4 cycles of EC followed by 2 cycles of paclitaxol (should have been 4 but stopped early due to side effects). WLE and node biopsy in Jan 2015 with clear margins and node but a marker put in during chemo to mark the rapidly shrinking tumour got left behind. Had further WLE in March 2015 to remove it followed by 20 sessions of rads. Completed year long course of herceptin in November 2015.

In May 2016 I thought something wasn't right in the same breast and in June was diagnosed with 4cm high grade DCIS. Had mastectomy and DIEP reconstruction 7 weeks ago and further lymph node biopsy. Node was clear but breast biopsy showed 2 new 1cm invasive tumours with same receptors as before. Had port fitted on Wed and on thurs had the first dose of another year long course of herceptin. Should have had the first of 4 cycles of vinorelbine chemo as well but my bloods weren't right so hoping to start next week.

EtTuTuttiFrutti · 02/10/2016 07:49

Diagnosed late June 2016. Grade 3. Hormone and Protein histology not completed.
1.2cm Tumour in right breast, and node involvement, to be treated with WLE, and ANC.

First operation 10th August. Tumour found to be 3.5cm; third of lymph nodes showed macro metastasise.
No clear margins
Second Operation 15th September. Clear margin next to original tumour, new tumour 3mm on opposite margin
Third Operation 29th September and awaiting results.

Now histology reports are done I'm Her2+ 0% hormone receptive.

To have 6 months chemo followed by rads /Herceptin but can't get referred to oncology until I have clear margins.

Goldensunnydays81 · 02/10/2016 08:49

Hello
Just thought I would come and say hi,
I was diagnosed with stage one cervical cancer in July and am having a radical trachelectomy next Monday where they remove my cervix and some lymph nodes but will hopefully if nothing has spread anywhere will save my fertility.
I'm feeling a bit scared about the operation especially as I'm having it up in London about 4 hours away from home but they don't do the operation near me.
I'm just finding it a bit surreal at the moment and don't feel like I can talk to many people about it, don't want to stress my sister out as she is pregnant and my closest friend is going through a divorce so don't feel like I can talk to her!
So just wanted to say hi really.

WhatWouldLeslieKnopeDo · 02/10/2016 09:57

Hello and welcome Goldensunnydays :) sorry you need to be here, but I hope that you find the support you need. How long will you be in hospital after your op? It's a shame you have to travel so far Flowers

minty sorry you couldn't have chemo this week. Fingers crossed for next week! Did they take blood from your port, how are you finding it? You can ask for EMLA cream to numb the site if it's sore when they put the needle in

Lovely to see you Speedy

changing good they are moving quickly. Sorry about your MIL Flowers

Hi Sandwich sorry about the anxiety. Feel free to vent here any time you need :)

clean good that you got the reassurance of a scan from the swelling. But sorry you've got new worries. Have you been referred straight for tests or will you be seeing a doctor first? Let me know if there's anything I can help with :)

Lovely to see you amber :)

Happy Sunday everyone

OP posts:
AnnaFiveTowns · 02/10/2016 10:10

Hi Golden, it can be really hard because you don't want to worry or upset other people with it. But I think that those people are probably worried anyway and by talking about it with them maybe it helps to relieve some of their worry too. I don't know. I know how you feel though; I always tend to try to put on a brave face with close ones and then it all comes pouring out at the most inappropriate times/ places with virtual strangers; like my son's parents' evening when his form teacher told me a few things he'd said and i just burst into tears in a roomful of other parents/ teachers. Thank God I hadn't taken my son with me like you're supposed to do - he'd have died of embarrassment!

I don't know much about cervical cancer but the fact that it's stage one sounds very positive.

Tutti, it sounds like you're having a tough time of it - 3 lots of surgery! Is that 3 lumpectomies in the same breast then?

mintyneb · 02/10/2016 10:18

Hi golden come on here and make the most of us if you need to talk

leslie they left a needle in after the op as they knew I was having treatment the next day. But the nurse on Thursday told me about the numbing cream if I need it next week. It was lovely though to see how easy it was to get the blood particularly when I looked round the ward to see people with heated pillows wrapped round their limbs, arms being plunged into hot water sinks! I'm not going to miss that

AnnaFiveTowns · 02/10/2016 10:27

I had a picc line, Minty, and although it was sore for a couple of weeks, it was such a relief not to have to go through the trauma ( and it became a trauma!) of finding a vein. I only wish I'd done it sooner.

I've googled WLE now so some posts make more sense. This was never an option for me as I had 2 very small satellite tumours in my very small breasts so full mastectomy was the only option. I asked them to take the other one at the same time but they wouldn't do this as they said they don't remove healthy breasts?!

mintyneb · 02/10/2016 10:56

anna from what I've heard they don't want to remove healthy breasts. unless you're considered to be more at risk due to inherited genes you're supposedly not any more likely to develop cancer in the remaining breast.