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 don't think they know. It's moved but not actually into bone, just was growing against it.
Ct scan says necrotic tumour and neck nodes slightly smaller.

It's not knowing that makes everything so hard.
For now my children believe I have a chance but I don't want to lie to them.

Oh dear ,so many going through hard times here .

useristired I hope you get the opportunity to talk through the results with someone ,receiving an email is a bit brutal . I don't know if it's at all the same ( oesphageal cancer ) but I was told that chemo hadn't shrunk my tumour but that it was possible that some of it was now scar tissue .

leslie I'm sorry you're suffering .I used to find that these ors.uk.com/ helped with the naseau after violent bowel action .
Think it was the slightly salty taste .Couldn't get on with Dioralyte though .

I truly am thinking of you all ,even though I've only mentioned 2 individuals .

Oh I did talk to the dr but he emailed me the results afterwards.
He's just very non commital and says stay positive and be strong. I find that doesn't help me at all.

Well no user ,I can understand that .

Easy advice to give .I wonder if he has any tips on how to actually achieve it ?

Thanks for thinking about me. I have been lurking on here a fair bit but not really had much to say. I've had quite a few weeks of up and down moods, every ache and pain was getting me down as I end up convincing myself its something to worry about when I know I shouldn't be doing that as its bound to be nothing. Tried to keep busy making Christmas enjoyable for my Dc but sometimes would get me down as well as I end up wondering how many more Christmas's I'll have to enjoy with them. Feeling a bit more positive this week so hopefully this mood will continue to get me through the next few weeks/months.

My diagnosis is triple negative breast cancer, 2.3cm lump grade3. I had my chemo first (3xFec, 3xTax), my last tax was 3 wks ago now. I faired a bit better with the tax than Fec and other than getting two colds in a row straight after my last tax, I managed to feel ok and have enough energy to have nice Christmas. I had my pre-op assessment today and my surgery (lumpectomy and 1-3nodes removed) is in two weeks time with the results being two weeks after that. Keeping everything crossed that the results come back with some positive news. Then it'll be onto radiotherapy.

Can I ask? Why do some of us have Lumpectomy/mastectomies first and then other treatment, then others seem to do it the other way round?
My SIL has just finished her treatment and did it the same way as I am, removal then treatment, and she had a 4.5cm lump, grade 3 same as me?
Sorry if it offends anyone, I just don't get why some have surgery first?

I know I keep asking questions but I'm so panicked about all this I'm reading stuff into why I've been treated the way I have.
I think this is what comes of googling when you don't exactly know what you have, you get yourself into a terrible panic, which I have done for the last two weeks.
I feel like my head is going to explode with the panic of it all, and I can't imagine a single conversation with the Dr that isn't going to result in more panic

Lots of use of the word "panic" there so I guess you can tell what frame of mind I am in

Hugs and to useristired and Leslie in particular and everyone else in general. I agree January is the most miserable month anyway so natural to feel like shit. I try and think of summer to cheer me up - sometimes works and sometimes doesn't.

Mybloodykids one of the first things my consultant said to me is that all cases are discussed by the multidisciplinary team, taking into account all the different results (hormones, sites, lymph nodes, grade, etc etc). This means that your treatment plan has been tailor-made for you, agreed by everyone (surgeon, oncologist, plastic surgeon, radiologist, nurse etc) as the best for your case. I think this is why there are the differences you describe. I find it quite reassuring.

Hi everyone. I've read a bit of this thread and thought I'd join in. It's an exclusive club but unfortunately I have the correct credentials!

I've got bowel and liver cancer. I've just had chemo 5 of 6. I'm on a fortnightly cycle and I'm very erratic with good and bad days. Today was good and I've done lots but that's the steroids talking! Next week will be a different story .

My kids are 11 and 8. The 8 year old tells everyone I just have "a bit of belly cancer" which is very sweet but kind of heartbreaking. I'm waiting for my next scan to decide what to tell them going forward, as my prognosis is poor. However, there is little point giving them terrible news when my exact time frame is still unclear.

I kind of am enjoying this stage as no one knows what the chemo is doing - could be nothing but could be great things! No one can call me into the little room and tell me awful things cos they just don't know at the moment! My body is keeping it's secrets for these weeks. It will have to reveal them on my scan but for now no one knows, so no one can tell me anything bad! I thought being told I had cancer once was bad but the second time was brutal. Damn my liver needing to get in on the act too.

Looking forward to getting to know you all and probably asking lots of questions!

laadeda sorry to hear about your cancers. I hope that Chemo does turn out to give you some good news.
I'm finding this forum both helpful and very upsetting at the same time, probably because we are all mums and some of what is happening taps into my worst fears.
I take my hat off to you all.

Mybloodykids - I asked the same question regarding the order of treatment. In my case I was advised that because I have two tumours within a few cm's of each other and small boobs they wanted to see if they could shrink them to allow a WLE rather than a mastectomy. They are hoping that the smaller one will disappear completely with chemo. In addition the lymph node biopsy had found cancerous cells so basically they said it was best to do chemo first as if any of those cells had 'escaped' then the chemo would hopefully zap them.

Don't be afraid to ask questions of your specialist - for every appointment I go in armed with a pad and a list of things I want to know; then my DH usually asks even more on the back of the answers.

LaaDeDa - sorry to hear your news too. My Mum was diagnosed with bowel cancer at the end of Aug with secondary liver. She had an op to remove the section of bowel and started chemo at the beginning of December. Unfortunately, she reacted very badly to it and the side effects ended up with her being hospitalised so she has taken the decision not to continue with the chemo as she felt so unwell and had no quality of life; even now she is suffering the after effects and her prognosis is poor. Hopefully the fact that you are managing to cope will perhaps mean you could have surgery or more treatment after the chemo?

Hi Mybloodykids, I did the same as cookiepuss and asked my consultant about this, because my friend was having chemo before surgery, while the plan for me was to have a mastectomy possibly followed by chemo.

Chemo after surgery is a mop-up effort to get at any remaining breast cancer cells, including those that may have escaped the lymph nodes -- an 'insurance policy' as some doctors describe it.

Chemo before surgery might be given to help shrink a large lump enough to allow for less extensive surgery. For example lumpectomy + radio rather than a mastectomy. It also helps assess how well a chemo regimen works, because they can monitor the size of the lump to see if it shrinks. Some usual scenarios for giving chemo before surgery are: if going straight in with surgery is unlikely to be successful in removing all existing disease; or if there is ER-negative, HER2-positive or triple-negative disease. As argy said though, there's a lot of different factors to consider and the recommendation is not based on one or two things alone.

Some people can have both.

Reassuringly I thought he said studies show there is no difference in survival, or in the chances of breast cancer recurring in 10+ years, with chemo given before (neoadjuvant chemotherapy) or after (adjuvant chemotherapy) surgery.

Your MDT (multidisciplinary team -- my consultant kept saying 'let's set your next appointment after the MDT' so I had to look it up; I only ever see him though and the BC nurse) will discuss which approach they would recommend for you. Or in your case, you can ask for more info on the reasons behind plan.

I had ER-positive (8/8), HER2-negative BC, which would be more likely to respond to slower acting hormone therapy with tamoxifen, so was an unlikely candidate for chemo before surgery. With small sites (no one could feel any lumps) scattered through my boob, doing a mastectomy straightaway made sense. Consultant said because my boob was so small there wouldn't be much left anyway if they tried breast conserving surgery

With my friend, she had such a complete response to chemotherapy that after her surgery she didn't need to have more chemo, so a great result for her.

Sorry lots of people are going through a crap time Thinking of you all.

I've been reading and lurking - mainly because I'm logged in on my laptop but have forgotten the password to log in on my ipad and the laptop charger disappeared for a while...
My cancer story is very recent and, like many of you, still coming to terms with things.
At the end of October had a gall bladder incident, lots of pain and vomiting and diarrhea then that went into what I thought was a stomach bug but lasted a fortnight.
GP finally sent me to hospital for IV antibiotics as a blood test had shown an infection. He said it also showed a slight possibility of a positive result for ovarian cancer but the figures were low.
Went to A&E ended up with temp of over 40 and various x rays and CT scans through the night.
First thing in the morning the surgical team arrive to inform me that I have a hole in my bowel, need emergency surgery, will end up with a stoma and colostomy bag and that it is bowel cancer with very dubious signs suggesting that it has spread to my liver and lungs.
So don't have anyone with me while they're saying all this and have to go pretty much straight to surgery.
I'm now on 2 weekly cycles of chemo that started just before Christmas. Had the second cycle last week and over the last fews days my hair has started coming out. Feeling not too bad so far just very tired.
Work pt as primary teacher so pretty much unlikely to go back as risk of infection and general feeling rubbish, utter pain in the arse money wise as we are 3/4 of the way through a house extension.
Trying to stay as positive as possible but difficult with stage 4 diagnosis, consultant has said no to the possibility of surgery as the liver tumors are too big and also still have cancer in the bowel as they didn't get it all during emergency surgery, abdomen and spots in the lungs. No symptoms at all before all this happened.
I'm 43 with 2 dc -ds 6 and dd 10. Just now waiting for 3 months of hemo to be up so they can assess if it's working to stop/slow growth.
Did at least manage to have a good Christmas but find it really hard thinking how many more am I going to see?
Mybloodykids sorry you're having such a hard time.
Laadeeda is your liver cancer secondary from the bowel cancer or a separate case of liver cancer? I'm the same with the waiting but a couple of cycles behind you and just trying to make the most of good days.
Flippyneck how did it go telling ds? I think one of the hardest things was telling my two. DS is a bit too young to really understand and so far dd is dealing with things really well and has a close group of friends who she has told as I don't want her keeping things bottled up.
Hope everyone else is not suffering too much at the moment.

fluffywhitekittens
God, I'm so sorry. I don't know what to say xx
To everyone else, thank you for the help, I think my lump was whipped out as a) it was only 1cm 2) no other lumps were there 3) due to it being aggressive they got it out before it tried to go anywhere
But I'm going to ask some more questions about this all. Tomorrow is my results day when I hope all this + and - stuff means something more to me, and I will come home armed with a plan.
Must just concentrate on listening and not panicking as soon as she opens her mouth this time though

Mybloodykids yes it's all been a bit shit but on the other hand I have had amazing support from friends, family and DH who have all been incredible. I'm hoping that "statistically" I may get a bit more time/buck the percentages as we have a really good teaching and research hospital and I'm young for this type of cancer. I don't know how others feel about asking for timescales as each case is so different etc. and I'm not sure I would want to know if it's a very limited time.
I've slowly been telling more people and the fact that I'm starting to lose my hair now is almost taking my choice away about who to tell. Although as friends have pointed out it's winter so I could potentially hide it under hats for a bit longer.
Also I have one notebook that I jot down questions as I think of them to take to appointments and it's got a chemo diary so can compare symptoms across treatments.

Sorry not really with it enough to post much. In hospital again. Severe stomach pain and nausea. Also very mild tonsillitis. All a bit weird. No one has found anything wrong yet so hopefully nothing too awful!

Anyway, wanted to welcome newbies but sorry you're here

fluffy and LaaDeDa what chemo are you on? I'm on FOLFIRI and cetuximab for lung mets.

Waving to everyone else

Oh Leslie. I'm so sorry to hear you're in hospital and in pain , but do take comfort from them not finding anything untoward. Is it an acute oncology ward or more general ward? See if they can get a more specialist person to see you maybe?

My relative has benn on the same chemo regime as you and it's a good one, works for lots of people and I pray it does for you. Take care.

And to others having a hard time, my heart goes out to you and hope you can find strength from somewhere. Keep on keeping on! But cancer really really does totally suck! Big hugs and all round x

Leslie I'm sorry you are in hospital again. I could tell that you were suffering from your posts, so you are in the right place. Your tonsils are very troublesome aren't they. Were you prone to tonsillitis as a child? You asked up thread about my course, I have exams so I'm trying to study but it's a nice distraction compared to this time last year.

I have been also been told that there's no difference in survival for adjuvant and neoadjuvant chemo. I think Her+ disease will now be preferentially given neoadjuvant treatment because Perjeta is only agreed for before surgery - I can see why women in Scotland are angry that they are not getting it. I had Her2+ cancer that evaded core biopsies and so I only knew the full extent of my disease after my surgery, so my chemo was adjuvant - but Perjeta wasn't routinely available on the NHS last year anyway.

Cookie you may find that the brain fog lifts when you move to tax. I was so dopey on FEC but much clearer headed on paclitaxel.

There are so many people on here having a rotten time at the moment. I also wish no one was going through this.

Thank you mybloodykids I simultaneously weaken at the thought of what the future might hold for my children and gain strength when I think I will do my utmost to destroy anything that threatens their happiness.

Cookiepuss I'm so sorry to hear that your mum couldn't have the chemo and is still suffering. Quality of life is so important though and I hope she gets back on an even keel again soon. My gran actually refused anymore treatment towards the end of her cancer journey as she wanted to just be left alone and to enjoy the time she did have. My hope is that I will be that one in a million and my liver will have become operable. My consultant looks at me with a level of sadness when I say that, but I have to think along those lines. I try and blur realism with positivity!

fluffywhitekittens gosh, what a lot you have gone through. No wonder you are still coming to terms with all that. My diagnosis was off the back of IBS symptoms finally resulting in a colonoscopy (so not a huge shock as I was aware something bowel related was wrong) and the liver off the CT scan. My liver is secondary. That was rather more of a shock. The tears I'd cried about the bowel cancer seemed so irrelevant at that point - I would love to just have bowel cancer now! My liver has small tumours. Lots of them. There is no clear area hence the inoperable. I haven't seen any scan images though as I didn't feel I needed a visual to go with the audio of being told about it! Just hearing it was bad enough. I'm an HLTA so I've not been in the germy workplace of my primary school either! What chemo are you having? I'm on folfox. My hair is thinning but I'm not meant to lose it. Colouring it was apparently a big mistake though - it seems to have angered it! It certainly is shedding like crazy now Have you had much sickness or nausea? I'm on domperidone 3x every day now cos my stomach is unhappy - I was getting horrendous acid reflux too but omeprazole has helped with that. It's roughly followed a pattern of good and bad days over the cycles but I am more tired as each one builds up the cumulative effect.

Leslie thank you for the welcome. Hope you feel much better soon. I'm on a biological drug called panitumumab (side effects include a brilliant 'rash' which is actually acne!) I look a treat! And chemo is folinic acid, oxaliplatin and fluorouracil although I only had the folinic acid once as my bloods were not good the next time so they took that off.

for our Leslie hope you feel better soon.
Welcome to our new joiners and so sorry you are having to go through this.

Waving to everybody else. As you can tell not sleeping much

Morning all!
mybloodykids thinking of you today, hope you get all the answers you're looking for.
Leslie big hugs for you having such a rough time, hope today has you feeling a little better
Welcome to all the newbies, so sorry you have to be here, it's a safe place to vent and we're all here for each other.
I have a raft of appointments after my clinic visit yesterday. They were running horribly late even for my 9.30, we got home at 12.30.
I have my first annual mammogram next week and they've added an ultrasound on my neck and supraclavicule as I have a little bobbly lump. Everyone is convinced it's fine obviously, but we know what that feels like...
They've moved me to letrozole to see if the tamoxifen is disguising my hormone results, so a blood test in 4 weeks to check that, then a decision on ovarian suppression if necessary. Hey ho. I did kind of think that after a year I'd be on my long term plan. Foolish woman!
Hugs to all.

royal is it the tablets or hot flushes keeping you up or just life in general!?

Ladies I am so sorry to hear so many of you are struggling just now but glad you have the lifeline here to ask questions or just share that pain and worry that we all know and hate as much as each other.
I'm sure there is another level to our worry as cancer patients who are mums- that gut clenching fear of anything hurting our children, and that feeing that we are the ones causing that hurt in some roundabout way...it sucks. And the guilt and anger... it is awful.

I have an appt for the 19th January to discuss my options with the breast clinic so am going to phone the consultant who still hasn't replied about my dosage of radiation etc so I can be better informed. I'd also like to investigate what type of BC would be "likely" as a result of radiation to see if that influences anything.
My gut says I am leaning towards pushing for the surgery. But then it scares me to look at my 36GGs and imagine actually going through major surgery voluntarily...

My background is non Hodgkin's lymphoma (12.5cm in thoracic space) way back in 2004. DC were 3 and 6 at the time. Six rounds of chemo with rituximab and then 4 weeks of radio. Never got an "all clear" due to area possibly caused by radio... Now facing high risk of BC due to radio and considering a bilateral mastectomy.
I'm thinking of all of you- those struggling with treatment outcomes and those waiting results and those just getting on with life. Any and all feelings are valid and don't let anyone give you guilt for feeling angry and sad and fucked off that this disease is having this hold on your life. You are allowed to feel whatever you feel.