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

[WhatWouldLeslieKnopeDo]

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

Afternoon
for all those awaiting tests and results and treatment in general.
My spots are still painful and turned into pustules so I think it's folliculitis. Seeing onc tomorrow so I will ask for something to help reduce the inflammation. Should also be getting a couple of scan results which I'm not really looking forward to - I'm trying to be positive but we'll see.

Cookie you might not lose your hair. I was told to expect to lose all mine within the first few weeks. I have nearly finished chemo now and still have my bog brush hair although it has thinned significantly.

Surgery over. Op went ok they said. The anaesthetic was a bitch. Still feel awful and like I have a bad case of the flu. Nurse was supposed to phone today but hasn't! They were in such a rush to discharge me from the day treatment ward so they could go home that they sent me home with a painkiller that I'm allergic to.

Results either next Monday or the Monday after.

Thinking of all of you whatever stage of this crappy journey you are on. Dora

Cookie This time last year I had just had my 2 nd cycle of fec, (I had 3 fec and 4 doxetaxol, herceptin and pertuzanab). I didn't cold cap as I used to get very bad migranes and I read somewhere that the cold cap can give some people headaches and migraines so decided to avoid it. I had a fantastic wig which looked better than my natural hair and although I can't say I liked losing my hair it wasn't as bad as I expected. It started to grow back when I stopped having fec and now 7 months after chemo finished I have almost 5 inches of hair and am debating getting it trimmed. One benefit I did find from having no hair was that if I got a particularly hot, hot flush then I could nip off to the bathroom and take my wig off and wipe a cold face cloth over my head. There were times when I was very glad I could take my 'hair' off

Hi Cookie sorry you need a permanent seat here. I am 2 cycles into 4 EC chemo sessions and have to say it hasn't been anywhere near as bad as I thought it would be. Dizziness and nausea for the first few days and tired after that, but nothing that can't be resolved by a few days rest. It's a bit like being pregnant - feels like it will never end when you are in the midst of the worst days but as soon as you start feeling better it's difficult to remember how bad you felt.

I was also worried about the hair loss thing - more because my daughter was distraught about the whole thing. I got my hair cut short before the 1st cycle and tried cold capping which didn't really work, so decided to shave it all off. We turned it into a bit of an event and my 3 daughters and husband all had a go! It was actually very liberating :) I invested in a couple of fun wigs from a site called Annabelles wigs (didn't want to spend a lot) but have found myself reaching for one of my new woolly hats each morning. I guess we're lucky it's winter and can get away with this.

My advice - just take each day as it comes. Don't worry too much about side affects as everyone is different and you just don't know how you'll feel.

Jo x

rocket Your hair looks AMAZING! Well done for persevering with the cold cap.

Good morning!

Cookie sorry that you need to join us. Have some and make yourself comfy. Do you have an appointment to see the oncologist yet? It is daunting to start with. But chemo isn't as bad as it first seems. You'll probably have plenty of good days, or better days anyway. Still sucks though!

rocket your hair looks great! It's thicker than mine was pre-chemo I'm glad the cold cap is working for you

chewing good luck today and I hope they can do something for the spots. That sounds really painful.

dora phew for surgery being done. I hope you are resting :) have you had a GA before? Some people seem to react quite badly to them. I hope you get a call from the nurse today instead!

rover how are you?

Jo good that you are finding the chemo side effects manageable :) rest does seem to be the answer!

I'm tempted by an electric blanket now. I am really feeling the cold at the moment.

rocket - wow, your hair looks amazing; if that's the definition of "thinning" then I can cope with that.

Yes, they have mentioned the cold cap and I am reading up on the do's and dont's to try and get the best result although I know it doesn't work for everyone.

rover - your comment about taking your hair off made me smile!

Jo - thanks for your feedback; I am hoping that I will still be able to continue to work through the treatment. My BCN was saying that she finds the majority of patients tend to be wiped out for 5-7 days after the chemo but the following two weeks they are not too bad so I am hoping this will be similar for me as I need work to keep me sane.

Dora - my DH had a terrible reaction to GA. He had his op in the morning and was still puking his guts up late afternoon; they had to give him something so I could take him home. Hope you are feeling much better today.

Leslie - although I have had results saying it is cancer, they haven't got the full results to say what type it is yet (should be by the end of this week) but have said that chemo would be required anyway so have started the ball rolling. I have been told I should get an appointment with the oncologist next week with the possibility of starting chemo the week after. I'm not sure whether I find it comforting or worrying that they are not hanging around!

Definitely get an electric blanket - you need one that heats up quickly and has extra foot warmth. I cannot describe the bliss of getting into a warm bed when you are feeling cold.

One thing that has struck me is that the statistics say breast cancer is mainly found in women over the age of 65 and yet I am only 51 and a lot of people who have this are much younger than 65. Again, the statistics say that "only" 1 out of 10 lumps will be cancerous but of 10 people I know either personally or via a friend, they all have been diagnosed with breast cancer. I'm not a statistician so I guess that there will be some logic and reasoning behind these figures, but it just seems that more and more people are being diagnosed and they are getting younger at the point of diagnosis. Sorry, just musing (waffling) really.

Morning
Had my scan results today. Breast lump and nodes have shrunk and spinal lesion remains dormant. No evidence of disease anywhere else which is a relief. Will see onc in the next week or so to discuss the next treatment options (rads or surgery).
Have been given ab's for my spots so hopefully they will clear up soon as I have a large hard, red lump on my chin now. Very attractive
Hope you all have a good day.

Cookie - I wonder if that is sample bias with the 1 in 10? I'm 34 and having my enlarged lymph node and suspicious lump looked at next week. I've spoken to a lot of people (online mainly! I'm part of three Facebook groups of women with similar interests) and overwhelmingly the others that have been through it have not had cancer. I bet if we put your friends and my friends together the statistic would work :-)

Evening everyone, Leslie I'm not too bad thank you the Tamoxifen effects are going away nicely and my onc has said he doesn't want to try anything else till after Christmas which hopefully means I might be pretty much stable again, also that I'll have finished my 12months of herceptin too. Sorry you seem to be having a horrible time of it, have you thought about getting a heated throw, Aldi had them last year and they're great, means you can lounge about on the sofa and be as warm as toast without everyone else moaning how hot it is! This was obviously before the hot flushes kicked in now I spent alot more time turning the heating down and have bought a summer duvet as I get far too hot at night. Cookie the hair removing has amused plenty of people. The problem was that the year previously we had been invited for mince pies and booze at this persons house and it was freezing. It's a very old house and they had one small log fire to heat a huge room, I thought that I'd be fine last Christmas though as the hot flushes were going strong but I thought they'd keep me warm, unfortunately when we got there they'd had the heating overhauled and also had a roaring fire going and I thought that heat stroke was a definate possibility hence the hair removing in their downstairs loo

rover yes the throws look rather tempting that's what I thought everyone meant by a heated blanket. But when I looked in Argos they mostly seem to be ones that go on your mattress. I actually like being a bit on the cold side in bed! I'm glad your Tamoxifen side effects are wearing off and that you've got a bit of a break to recover before trying the next one. Hopefully this Christmas your friends will have got the heat levels right

chewing that's great news :) fingers crossed for the antibiotics

Cookie I won't link to it in case you don't want to see, but if you're interested in statistics then the Cancer Research UK has a cancer stats section. You can view statistics by cancer type and so on. Some people like to know lots and others find it too anxiety-inducing.

im so very pissed off can i dump it here!

after trying many times this week to get some one from uhw urology to phone me back - im still waiting for an appointment to know the results of my scans to see if its spread to my lungs

i know i should go up to my gp and get them to chase it, but first i have to get past the receptionist....and i feel i might just cry when i start justifying why i need an 'urgent' appointment instead of the one in 10 days time

i am a strong independent woman but im so pissed off at being ignored

the breast clinic were wonderful for communication, always phoned back -uhw you fuckers get your act together

so now im sulking like a petulant child thinking i dont want to speak to them anyway!!!

baubles do you have a BCN that you can contact? I phoned my one when I wanted to know some test results and she looked on the system for me.

No wonder you're pissed off baubles

I agree with chewing do you have a BCN? My colorectal nurse has helped with various things that aren't really her area. Even if she doesn't feel comfortable interpreting the results she could chase the other team for you.

I hope you hear something today

ive found a 'grip' and phoned my gp surgery -

a lovely receptionist took pity on me - nothing on the gp system but gps can access the nhs portal so shes arranged for a phone call from a gp when clinic is over

i may have cried

fucking caner

phone call from gp

they dont give out results if the consultant has requested the scan as it might be too complicated for the gp to understand

i said surely its a case of ...
-in the lungs
-not in the lungs
-needs further investigation

no no no she reckons far more complicated let them deal with it and tell me

no problem says i - if i can get to see them!

she will ring them...

she rang back 3 minutes later to say she could only get an answering machine and was most indignant!

rolls eyes

in the mean time the post has arrived and i have an appointment for the 29th nov

lookingforbaubles, I think my overriding emotion at the moment is pissed off, totally get where you're coming from. I had to deal with the receptionists so many times for DP, when they started questioning my requests for appointments I would get the rage big time. Not sure if I'm up to all of that again, and doing it for myself is different too.

lookingforbaubles, I think my overriding emotion at the moment is pissed off, totally get where you're coming from. I had to deal with the receptionists so many times for DP, when they started questioning my requests for appointments I would get the rage big time. Not sure if I'm up to all of that again, and doing it for myself is different too.

Ooops, didn't quite finish my post. And managed to post it twice somehow. Sorry!

My third biopsy is also positive, so I have to have a mastectomy. I want a reconstruction, and as I find out more about the process, I think I want that to be immediate - especially when I was told that as I have to have rads I wouldn't be able to have the recon until at least six months after treatment finished. Plastic surgeon appt next week to discuss options.

I will meet with the oncologists to discuss treatment, as they are pushing for chemo - of course, it's their job. Already heard 'we need to keep you alive for your boy' which doesn't feel like they're being fair.

thats shit getting a positive biopsy flippyneck

i was pushed towards chemo as well but dodged it as my numbers were only 3:9 and they agreed as i was e+ but producing no oestrogen (i had a hormone test) it was ok to go straight on to letrozole

at the cardiff clinic now they are doing dna testing of the cancer to see if your breast cancer is receptive to chemo - they didnt do it at my time tho you could pay for it privately!

the professor i saw there told me for every 100 women who have chemo its only effective in 4

i actually consented to my breast going to research for the dna testing - i have a mouse some where in cardiff with my cancer dna in it!

maybe some thing to push for with your oncologist ?

lookingforbaubles, I have been reading about the tests, so definitely one to discuss. What does your numbers of 3:9 refer to? I have HER2+3 and PR+ ALLRED 8 ER+ ALLRED 8 (i.e. all highest possible within the tests my hospital uses) with provisional tumour grade 3, but surgeon says they automatically grade all HER2+ tumours as grade 3 at biopsy stage. Lymph node showing metastic carcinoma, so surgeon wants to do ALND. I don't know which other tests they will run after surgery, but surgeon said they'd have a much clearer picture. I'm 44, so recommended for tamoxifen too. I look at it and think surely surgery, radiotherapy, herceptin and hormone therapy has to work on it somehow. I also asked about having Zoladex too, or even ovarian removal.

Wow - 4% stat is frightening if true - so many women recommend to have hideous gruelling treatment for no benefit whatsoever??

Professor Mansel is the chap who operated on me - hes semi retired and very 'famous' for pioneering sentinel node biopsy.

here in cardiff you attend the breast clinic in one hospital - for diagnoses/surgery - and then get shipped over to the other side of the city for cancer treatment which complicates things

they use some sort of american scoring system for your treatment and you get given a number for your cancer - i was given a number of 4:1 at first as they had me down as no symptoms

anything over a 4 is chemo needed, but i pointed out i did have symptoms - inverted nipple- so my score went down to 3:9 !

the type of cancer i had was invasive lobular e+ stage 2

reading this back there are so many gaps in my understanding of the whole process, i was diagnosed and operated on with in 3 weeks, its very much a blur.

heaven help the urology unit - in yet a totally different hospital in a the same city of course, this time im going to take so many notes!

i struggled to believe the 4% figure - i couldnt believe the nhs would spend so much money for such a low rate let alone the trauma to so many women, i did have a follow up conversation with my bc nurse about whether it was true, (she was present when prof mansel was telling me this) she uncomfortable talking about it and said any percentage was a hope!

baubles sorry you still haven't had any answers!

Flippy it sounds like your treatment plan is starting to come together. If they really think chemo is best then hopefully they can provide some convincing statistics for you. Though it sounds like they're throwing quite a few other things at it, so hopefully that will do the job!

I hope everyone is having a good weekend so far