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! :)

Wow - lots of posts. Thanks for all the kind words and hugs . Welcome to our new posters. Itsall how annoying and frustrating for you
Nice hair rocket
I have felt a bit brighter today and not stayed in bed.
My summary: diagnosed with a rare small cell carcinoma of the breast in June 2016 (very aggressive and triple negative). Had 5 months of chemo but in September a lesion was found on my spine. Recent PET scan shows it is now active in breast, lymph node, spine, rib and neck. Had some radiotherapy and will maybe try different chemo. Having a head scan this week to see if it has spread to my brain. Had tiredness and a few aches and pains but otherwise doing ok.

Happy New Year to all Lacies and well done on compiling the info Leslie and Java.

I've been trying to forget/ignore the reality during the holidays, so I've been lurking but not posting. Thinking of you all. This time next week, I'll be in hospital, the night before mastectomy and LD recon. Feel sick at the thought of it. My 'biog' - 44, dx Nov 16 with locally advanced breast cancer - 7mm tumour, HER2+/ER+/PR+, with node involvement and further pre-cancerous area. Docs want to throw everything at it, surgery, chemo, rads, herceptin, tamoxifen. I'm ok(ish!) with all of that apart from chemo, so further discussions to be had with oncs. 2016 was pretty horrendous, DP died in Jan after being dx with advanced cancer 9 months earlier. Life was settling down for me and DS (8) when I was dx. No secret that I am struggling, and feel quite murderous when anyone tells me to 'stay positive'!!

Psyching myself up to tell DS tomorrow that I will be going into hospital. I'm not sure what else I'm going to tell him - I was speechless today when we were talking about the New Year and he said 'let's hope no-one gets cancer this year.' I am dreading leaving him next week, although I know he will be well looked after.

I don't have much advice to share (yet!) but very grateful for this thread and everyone who posts on it.

Hope the holidays were as good as they could be for everyone, and you're all doing as well as you can.

Been lurking on here, still waiting on proper results due to Xmas, but had a lumpectomy in Dec to remove a 1cm grade 3 invasive breast cancer, plus a couple of lymph nodes to be checked.
I'm back this week for results and am literally killing myself with stress.
I know I'm going to need chemo, which is a personal terror of mine, as it's grade 3 and I'm young (their words) at 43, but having been on here (and google - I know) I am scaring myself stupid with fears of secondary cancers and other stuff.
Although the hospital have moved fast it's just been wait, wait, wait due to Christmas and I'm still waiting on the biopsy results from mid December to know if it's her or hormone type, I don't even know the terminology!
I have 3 children aged between 16 months and 8 and am really feeling the fear.
I would give anything not to do chemo but the Dr says I will need to.
I'm now looking into wigs and hopefully going to get my eyebrows tattooed on before Chemo starts as my eldest is very upset at how I'm going to look.

I might add I am a very strong person, but am actually now just a tearful wreck.
I've known several people with this, who are all still here and recovered, but I keep thinking "what if I'm that 1 in a million who has it here there and everywhere?"
My husband who has been very good has got so frustrated he ended up yelling at me last night and is now not speaking to me, but I can't stop thinking about it all.
Until I get my results I'm just in Limbo, and it's been a month since the biopsy, so I feel I'm waiting a long time for everything

mybloodykids ok firstly big hugs because I can hear how scared and shocked you are But can I just say all your feelings right now are entirely natural, I was in your shoes this time last year and got myself in a right state! My results were also delayed by Christmas, it's horrible waiting isn't it? You just need to know what the plan is!
But it's worth remembering that annoying as it is to wait the delay won't actually make any difference to your recovery.

Try not to Google or second guess what's going to happen. Everyone's experience is different and what happens to others is not necessarily relevant to your circumstances.

Lean on your loved ones and friends now, let them support and comfort you. Your husband will be just as scared as you and that's probably why he freaked out last night. Give him a big hug and remind him you are both facing the same fears and it's OK to express that to each other. After all if you can't be honest with him who can you be with?

It will get better I promise, this is the panicky stage. Once you get your plan and get started on it you will actually start to calm down.

Keep talking on here it's a great place for unconditional support xx

Thank you for thinking of me.
I'm not good.
Can't remember what you know but I was diagnosed with breast cancer , triple negative that has locally advanced to sternum and neck nodes.
Had a dire appointment with horrible NHS consultant and ended up getting into a trial which incorporates chemo not offered locally and a separate infusion to work along chemo to prevent spread and/or regeneration of cancer.

I had my 3rd round of chemo last week and had a ct scan before to check progress. The lump I had in my sternum was visible to the eye previously and now isn't and so we were hopeful that the ct scan would show progress.

Ct results emailed to me today show no change in size of mass and just one neck node is 3mm smaller.

I am devastated. I was repeatedly told tnbc is aggressive in its nature and would eat up chemo fast.
I really suffer with chemo so I'm on a 3 week cycle where I'm in bed for 7 days suffering and up but only semi living the rest as so tired etc. My children are scared and so am I. I have no quality of life.
I'm devastated there is no progress and I'm not sure I can go on with this.
Wonder if it would be easier on everyone involved if I just let go and give them their lives back.
Sick of being told I'm strong and brave as I'm neither and particularly finding fb Xmas/new year jolity from everyone hard to take.
Feel angry and so sad.

Thank you, my whole thing is plans and timeframes, and to sit with neither is very hard. It was literally "you've got cancer, aggressive type, we'll cut it out next week, then enjoy Christmas and we'll see you in Jan with results. Oh and by the way, you know we said you will probably only need radiotherapy? Well we think you need chemo now. Happy Christmas!"
That sounds flippant, but it's how it feels!
I dread chemo, my friend had it and she looked so sick, so the opposite of how I see myself.
Losing my hair is a big thing, and I will truly punch the next person who says "it's only hair" whilst swishing their own hair, or tells me to "be positive" if I express any anger (which I've done a lot, I'm very angry about having cancer. Very angry)

Sorry useristired for posting under you like that, I'm sorry for what is happening to you x

It's ok, I wish I had the option of it being cut out and sent on my way.. funny how one persons nightmare would be another persons dream.

I'm angry too

By the way I dreaded and hate chemo too but I've kept my very long hair thanks to cold capping

Sorry feeling shit again so not really with it enough to post much

But useristired sorry this is happening. Have you had a chance to discuss the results with your team yet? It's early days and the fact that nothing has grown is a good sign. Obviously you were hoping for better than that and I can understand the disappointment.

My first scan in September showed most of my tumours were stable, only some had shrunk. I was a bit deflated at first. But I was reassured by my oncologist and by amber that this was a good result after only six cycles.

Please talk to your team about how you are feeling. There may be medications they can give to help with some of the side effects or they might be able to reduce the dose a bit.

I honestly do get it. I'm on two weekly cycles and I barely leave the house or socialise. Sometimes it's hard to know if it's worth it to extend my life when it feels like I'm not really living. But the good moments get me through. I'm planning a frank discussion with my surgeon about a possible option to make it easier. And I really do urge you to ask if there is anything your team can do to help you through this

Mybloodykids I don't think anyone wants to see themselves as sick but you might find you don't feel that unwell during chemo anyway. Side effects vary from person to person. The frustrating thing is that often chemo makes you feel worse than the cancer but even if you feel shit you might not look it. I'm always being told how healthy I look even when I am quite unwell I've actually started wearing a little hat rather than my wig sometimes so that people know I'm sick when I'm too exhausted to explain (useful in some circumstances e.g. to get a seat when it's busy)

Thank you, I don't have a 'team ' just a dr.
I am on a clinical trial and withdrew from NHS so it's all run by a research centre in London.
If I'm off the trial I go back to NHS but anything outside of the scope of the trial is not for my trial Drs to attempt or decide.

He says we stick at it but I'm just not feeling very positive.

Ah sorry. I just said team out of laziness really as different people have different professionals involved. Surely side effects of the treatment are within the trial doctor's remit?

It's difficult to feel positive when you're going through gruelling treatment. Often the drugs themselves can affect your mood too.

I hope things improve for you soon

Oh yes he can prescribe for side effects, nothing seems to help really.
My problem isn't the side effects , more that I've not seen any improvements to the cancer.
At least if I saw something it would be easier to take.

Belated New Year greetings to everyone and if I had one wish it would be that NONE of us were living in this terrible nightmare.

Having been quite positive up until now I am really struggling today but am trying to snap myself out of it. I am working today (from home luckily) but am feeling quite woozy and it's hard to focus and concentrate so apologies if this post makes absolutely no sense. I feel like I have really bad jet leg combined with being very drunk, which I assume is due to the lack of red blood cells/oxygen as I am 6 days into cycle 2 of FEC-T.

I am 51 and was diagnosed in Nov 16 with Grade 3 HER2+/ER+/PR+ - 2 lumps one is approx. 2.5cm and the other is approx. 1cm and lymph node involvement. Stage unknown as having chemo before surgery as hoping this will reduce the size of the tumours first but will be surgery followed by rads.

The plan is to give me 6 x cycles of FEC-T which also includes Perjeta and Herceptin from cycle 4 onwards.

Didn't bother cold-capping and hair started shedding on Boxing Day so am now demonstrating a not-so attractive Sinead O'Connor (for those old enough to remember her) with random bald patches. Luckily most people know how gutted I feel about losing my hair so are not coming out with the usual shite comments which makes me want to shove my hairdryer up their respective arses.

If anyone has any tips about how to cope with the wooziness/boost the red blood cells please feel free to share as I don't feel safe enough to even operate the toaster at the moment.

Leslie - brilliant and so useful, not sure how you pulled it together!

to everyone who is feeling particularly crap today.

Good Morning Lacies, Just recovering from a really heavy cold/flu (not completely sure what I had). Have been wiped out for almost 2 weeks and am just starting to feel better although very hacked off that I missed all of Christmas and New Year! Anyway 2017 is here and lots and lots of posts, Leslie I have no idea how on earth you remember where everyone is with treatment and scans but it is so lovely that you do.Yes you're right I had my 18th and final herceptin last week so I now just have to battle the exemestane (after a complete failure with tamoxifen!). Brief potted history, diagnosed with stage2 grade 3 breast cancer in Sept 15. er/pr positive and her2+ as well. 3 lots of fec and 4 lots of docetaxol, Pertuzumab and Trastuzumab, herceptin for a year. Wle surgery and 20 sessions of rads. First mammogram done and dusted. One thing I would say is I didn't realise until the main part of treatment was done just how badly it had affected my DH. My diagnosis had a far worse effect on him than it did me and he really struggled to come to terms with it. I couldn't understand why he seemed so distant and emotionally detatched but almost a year in it suddenly all came out and I was gobsmacked at just how he felt.

My thoughts go out to all of you waiting for scans and results, its horrible but necessary and once a treatment plan is in place for me at least I felt better that something was happening.

Cookiepuss The only thing I found helped at all with the woozy feeling was lots of fluids during and immediately after chemo. One of nurses told me that it was best to flush it out of your system as soon as possible and although I wasn't sure about it, I did feel better with the cycles that I drank about 3 litres of water the day before and about 3-4 days after. May have been my imagination but I felt better so was happy to go with it :-)

i have spent christmas with my head in the sand but here is the new year and so it starts - or rather doesnt, the endless waiting for appointments!

stage 2 breast cancer in 2015 with almost reconstruction in september 2016 but a T3 10cm 'thing' in my kidney put an end to that, now waiting for that to be hoiked out to find out what it is - most likely kidney cancer

everyone tells me how lucky i am that they found it... rolls eyes

hello to all the newbies and big thanks to those who keep the thread going Leslie

I don't understand all the different types of cancer here.
When will I find out was stage I am? Does it matter?
All I know is I had a 1cm grade 3 invasive ductal thing, I've had a lumpectomy and a node biopsy.
Do I find all this out at my appt next week? It's all as clear as mud to me at the moment and very confusing.
Sorry to ask so much, but I can't get to grips with it all, prior to me having it I thought breast cancer was just one type of cancer in varying stages of size, so it's all been bit of a shock to me

mybloodykids yes it's all a bit confusing I know, and I frequently forget exactly what kind of cancer I had! That's why I haven't written my history on here because I would have to go and get one of my letters to look it up!

Hopefully all your histology results should be ready for your next appointment and your Consultant (and possibly the breast care nurse) will go through it with you. It helps to take a paper and pen and potentially a list of questions if you have any.

to everyone who is feeling low or poorly at the moment. I find January dull and depressing anyway, worse with cancer on top

Hi mybloodykids It's truly awful waiting for results and you think it will never end, but you gradually tick off the days, however you need to get through them.
If you are waiting for the results post WLE (lumpectomy) and SNB (the sentinel node biopsy) you will find out if your nodes are involved - ie they have caught stray cancer cells trying to head out and set up camp elsewhere. If they are clear, my understanding is the cancer is confined to your breast. If they show carcinoma they will likely do more scans to see if any cancer cells show up elsewhere. I had a bone scan and a CT scan after my SNB was positive for cancer, but all appeared clear. I had grade 2 lobular breast cancer and my tumour was 40mm.
Re the types of breast cancer, I was told 80% of invasive breast cancers are ductal, 10% are lobular the other 10% are rarer types. DCIS is non invasive I think?
You are also likely to be told if the surgeon got clear margins around the tumour, so they are certain they got all of the bastard out. "clear" margins can be very small indeed - my thinnest clear margin was 0.5mm, that and the node involvement was what made chemo my best chance of recovery and gave me the best odds for survival. If they haven't got clear margins they may wish to operate again to make sure they catch it all. I was 46 at diagnosis and have 3 DC who were 7,9 & 11 at the time.
Hope that helps

useristired, I would say to get back to your specialist and explain how low and exhausted you are feeling. Don't spare any detail. And see your GP about it. Between them, they should able to improve this quite a bit for you.
For what it's worth, stage 4 being 'held' and stopped is a good result. If they can do that, they can potentially keep it on hold. And there's newer stuff coming out for triple neg. But yes, you need quality of life. Definitely.

Thank you Amber, no one had said I'm stage 4, they are all query stage 3.. would you say it's more 4?
I just feel doomed. My gp was supposed to sort counselling but so far nothing.
I am lost and sad

Pass re stage. If they reckon 3, it's 3. I was guessing from your description. I would contact Macmillan if you haven't already. See if there is a counselling or similar option available through them?