Oh Debs, as if you haven't got enough to contend with! Every treatment for something seems to bring with it its own catalogue of problems doesn't it?
My Macmillan has just recommended movicol for me, she seemed to think this will be the answer....hmm lets see shall we?! Hope it works for you soon, it'll be such a relief for you and help with that awful nausea.
Thinking of you
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I am so sorry to hear of your secondary diagnosis.
I was first diagnosed with secondaries in 2005, I was 31 and my son was 3. I don't think I truly grasped what was happening at the time, it hit me later on and I remember thinking I wouldn't ever stop crying. I felt cheated out of a life with my husband and son, and just incredibly sad that they had been cheated too. I still feel that way of course, but I have learnt to cope, just as you will, and although I still have my occasional 'crises' (as I like to call them - times when I just need to cry and rant), I let that happen then I get on with the rest of my day as best I can. Then I don't have another one for a while.
The only comfort I can give is that on this forum, you will not only find support, sympathy and understanding, but also find lots of other women who have lived relatively 'normal' lives for a long time after secondary diagnoses, which I found to be so encouraging.
As Debs and others have said, once you have a treatment plan you will feel much better.
Lots of love and hugs
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THought I hadn't seen you posting your wisdom recently!
So sorry to hear you're in constant pain - another myth blown out of the water - that even if there's nothing more they can do to fight this dreadful disease, at least you dont have to suffer!!!
As a fellow sufferer of extensive skin mets, I understand your frustration at the lack of information about what to expect. I never expected to actually be able to SEE my cancer, or that it would weep, bleed and scab.
And as for living with a disability that you know will only get worse, I can only imagine how awful that is. I had a brief spell in a wheelchair when I had undiagnosed lung pt's and the dramatic way in which my life changed just for that brief period was shocking and very upsetting.
I hope the new drug combination brings you some relief and that they continue to see your pain as unnacceptable and strive to find something that works.
All the best Jane, and keep posting.
Love Bex xx
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Its is an ugly stinky b*stard of a disease, there's no two ways about it! Glad you feel motivated to get up this week, even if it is only for more flippin hospital trips!
Hope you feel better as the week goes on and you find yourself getting up for some good reasons too!
You are always so cheery and dignified, telling it like it is but without a hint of self pity. I have been feeling very sorry for myself the last couple of days and have been an undignified mess! full of self pity, rage and despair. Then there's you, good old debs, showing us all how it should be done, thank you and keep posting.
Lots of love
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I wondered if anyone else had ever had a mixed response to any particular drugs? I am on my fourth cycle of paclitaxel and the skin mets on my chest are showing a good response, whilst the skin mets and tumours in my head and neck continue to grow. Have asked onc why, but they don't know and just say its 'unusual'. My (armchair) theory is that I have two different types of BC going on at the same time, each with its own characterisics re grade, negatives etc. This has been verbally dismissed by them as 'highly unlikely 'although no biopsies taken. My cancer you see started on one side and then seemed to 'jump' to the other (the new lump on the otherside was 'very unlikely' to be cancer yet turned out to be). I think its quite possible it could have been a new primary, this is not unheard of.
What does anyone else think? Has anyone else had this experience?
Thanks for your advice
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I can't find the 'What not to say thread' but I just have to share a few recent 'words of wisdom' that well meaning friends have imparted to me recently which sometimes left me in sheer disbelief or at worst, really angry.
I am currently receiving another chemo drug which appears to be failing. I know this because my cancer is very visible - put it this way, I don't need scans to tell me if lumps are shrinking or growing. I also have a brain met.
Strike 1: When explaining to a very religious friend who had been praying for me, that I was very sorry to tell her (I was concerned about HER feelings) but the cancer was still progressing, god may decide to heal me in the future, but he certainly wasn't now. She said 'perhaps you're not open to recieving healing. When I was having problems with my hubby and my prayers weren't being answered I realised it was because I wasn't behaving the right way'. Yes, thats right, ITS MY FAULT cos I'm a bad person! What about murderers and dictators and all the other evil people in the world who seem to live long happy lives???!!! I told her (in a very calm way) that I was not to blame for my cancer. Nothing I was doing or not doing was causing it to kill me.
Strike 2: My cancer has paralysed my facial nerve and to most people it probably looks like I've had a stroke (in fact some people have likened it to that.... to my face..!). Anyway, as a result it affects my eating and speech. The worrying thing is that the other side has started to head the same way and I was expressing my fears to the same friend and telling her that I cope with one side but I was worried I would'nt be able to eat it the other side was paralysed to. To which she answered 'Yes, but you'd still be able to eat through a straw wouldn't you?' Thank goodness I have her to solve all my problems! I told her (again calmly) that, sorry but to be that just wouldn't be something I could accept easily. Thats like saying to someone whose lost their legs 'thats ok, you'll be able to get around in a wheelchair the rest of your life - chin up!'
Strike 3: During the same conversation when I was just generalsing about how sad I was that I was slowly getting worse she told me 'it doesn't have to be awful'. (I too wondered exactly what she was talking about). Her stepfather died of cancer in a hospice. She continued.."richard was so peaceful at the end, in no pain and he just slipped quietly away...and he was a horrid man'.
So, a) even bad people (like you becky) can have good deaths. and b) so thats something to look forward to almost!!!! I told her (again in a calm way) that I'm not scared of dying per se - yes pain can be controlled - I'll probably be so drugged up I won't even know about it. What I object to is that I'm 35, I have a 7 year old son and and its bloody unfair!!!
Strike 4: Another friend (who knows what I'm going through on a daily basis and is often very good, but then will pull the rug from under me) text me one day to ask how I was. I replied I was feeling good except my neck was particularly stiff (my cancer is in my neck, head and shoulders and I have daily discomfort). 'Oh well, mustn't grumble!' Was her reply! Well If you don;t want to know - don't bloody ask! As it turns out i grumble very little considering the amount I have to grumble about.
Strike 5: I am only 35 and was fairly pretty up until 6 months ago when my face blew up like a balloon on one side, became paralysed and my hair fell out! I don't mind admitting that it has affected my confidence pretty badly. People stare yet won't make eye contact and treat me differently. Anyway I was telling my mum (who bless her has supported me wonderfully for 7 years since diagnosis) how much I hate it and she said 'well, we've all got used to it' in a matter of fact tone along with a shrug of the shoulders. I know she was trying to say it doesn't matter, we all love you just the way you are. But I thought 'oh, thats allright then... as long as YOU can all live with it thats fine then!!!
A final one which even I had to laugh at:
I popped into work to see colleagues who i hadn't seen since before my face 'went'. I glammed myself up, was having a 'well' day and felt pretty good. They had been warned about my face thanks to regular email updates and I have to say they were all fantastic when I saw them. The were genuinely pleased to see me, didn't appear shocked, joked with me and paid me compliments. It wasn't till I was on my own with a male colleauge and good friend when I was talking about my face and he was being very kind and saying i was still gorgeous, then he held up his had to shield one half of my face and said 'if you do that, you wouldn't even know'. He mean't well!
Well ladies, there are many more where that came from, but I hey - musn't grumble!!!
So when people say stupid insensitive things, smile sweetly, bite your tongue, sigh inwardly and repeat to yourself 'they mean well... they mean well....they mean well..'
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Just wanted to say I always read your posts and notice that you are often the first to support the newbies and others who need advice and support, despite your daily struggle with this horrible disease, I admire you for that.
Your strength, warm advice, and the way you cope really inspires me to carry on.
Hope you're having a good day today.
Big hugs and best wishes
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Sorry to interrupt this thread but have only just noticed it and my comments refer back to original subject.... but just wanted to to say I'm glad you called the NHS, and it sounds that what you were told at your original meeting re 6 months seems to be the usual advice, which is all you wanted to know I think. As for managing your anxiety I certainly didn't get the impression it was taking over your life!!! off to sweden and the likes, good for you! Some people can be so insensitve and condescending!!! Anyway, it always good to try and put your mind at rest and you seem to have done that..... now where we, oh yes Christopher Eccelston... actually if we're talking about gorgeous men with accents how about David Tennant???
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Just wanted to send you my best wishes and sympathy. I still remember the pain, anxiety and utter devastation of initial diagnosis. I have since been diagnosed with secondaries and I swear it wasn't as bad as the first time round. The shock, and feeling of rawness and being completely consumed by fear is awful. All I can say is it DOES get easier with time. Your mind eventually learns to cope and you will come to terms with it, I promise you. ANd one day you will go to bed and realise you didn't cry today! Just hang in there.
I also Just wanted to say its perfectly normal to feel negative and upset, thats what we're here for! Often its easier to offload here than to friends and family, so you go ahead girl!
Sending you hugs and best wishes for the coming weeks. Treatment is tough, but bearable.
Love bex xx
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Oh Hannah, I'm so sorry to hear your sad news. My heart breaks for you. Being told it has returned when we hoped we had kicked this horrible disease is devastating. And so soon after treatment has finished too, you were probably only just getting your head round to 'getting back to normal'.
I was diagnosed when pregnant with my only son (he's now 7). And diagnosed with secondaries in 2005, 2 years after treatment had finished.
I so hope that your PET scan produces the best results possible and that the spread is limited to your lymph nodes. The fact you have been feeling so well is positive, often spread to organs produces symptoms.
It is a sad and scary place, as you say, but I have found the support you get from this forum to be wonderful. There are a few of us with young families so we understand the added emotions this brings.
I have everything crossed for you for the coming weeks and hope that you get the results we are all wishing for you.
Take care, big hugs
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I'm very sorry to read your post and hear the symptoms you are describing. It must be very distressing for you, and the thought of it possibly being brain mets must be absolutely crushing especially since having NED for some time now.
I'm afraid I can't offer you any advice, only to tell you of my experience. I was diagnosed with 1 brain met in my peripheral lobe (area which affects memory) in March this year. It was picked up on a routine scan, and I had no symptoms.
I have since had 2 weeks of radiotherapy to the tumour and a recent scan showed it had shrunk.
I have still not experienced any symptoms as a result of the brain met, and other than having chemo for other tumours in my neck and chest, I have felt well since.
I was hesitant to reply to your post as I realise this is not going to be reassuring for you, but I just wanted to let you know that I'm here and I understand how afraid you must feel and wanted to send you my love and best wishes. I only hope you can speak to your onc soon and find out for certain if it is brain mets or not. Then at least he can come up with a plan for treatment ( I always feel better when theres a plan).
Please let me know how you get on.
Sending you a big hug
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Firstly, I was quite appalled at the way you've been treated and felt compelled to answer your post!
(you've come to the right place, noone on this site will tell you to 'stop worrying, it's probably nothing'.)
I have had breast cancer for 7 years now and in that time I have never heard of anyone being told tumours take 9 years to grow!! I think that is complete and utter rubbish, and quite disturbing.
The fact that its difficult to biopsy doesn't mean you aren't entitled to a definitive diagnosis. What are they waiting for? The lump to get bigger, to make the procedure easier for them??? If necessary the lump can be removed under anaesthetic and examined - quite a common procedure, and entirely necessary for a diagnosis if a biopsy is impossible, I would say. No wonder you are worried and anxious, you have every right to be.
You absolutely need to get a second opinion, and as soon as possible. The time spent waiting, worrying, and not knowing is awful and most consultants and BCNs understand this. I can barely believe you have been fobbed off like this!
Having said all this, lets hope it does turn out to be nothing, but you should never have to wait 6 months to find out!
Do let us know how you get on.
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I totally agree Jane, and I think BCC are missing the point slightly.... Why are BCC so keen to make the distinction between a regional recurrence and secondary bc and therefore imply that it is less life threatneing and therefore less serious?
Just to respond to a couple of points they make:
"Both (local and regional recurrence) will need further treatment but they are not secondary BC'. Possibly, but the parallel in that both will require CONTINUOUS treatment until death is surely more poingant. BCC makes it sound like a bit of chemo will cure a regional recurrance!! Let me say again, my onc told me in no uncertain terms when my first 'small 'lump on my neck was found to be cancerous that I COULD NO LONGER BE CURED. Now, in my book, that means at some point it will kill me!
Other parallells between Regional recurrance and 'true' sbc:
Both are incurable
Both will require treatment up until death
Both require the same treatments and support
Both conditions bring about the same fears/pains and often the symptoms can be worse.
To go even further, I would say that they way some regional recurrances exhibit are worse than 'true' scb as the way they present are very unusual and very hard to treat, as well as the symptoms being very visual and distressing a well as painful. Anyone for a facial disfigurement to go with their incurable cancer??????
Lastly the point BCC make that 'In all cases treatment can be controlled or treated, sometimes for many years' I find to be rather naive. In my own case alone I have recently had two different chemotherapy drugs fail. My disease in my necky/face skin and parotid gland marched on untouched by capecitabine, then docetaxol. Oh and then bam, I've got a brain tumour now - can I finally be taken seriously now??? SOME cancers can be controlled or treated for many years, others just run riot and are relentless against any treatment whatsover - yes even regional bc.
Equal rights for all incurable cancer patients I say!!!
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Its such an ordeal isn't it? This trial and error process, and endlessly waiting for results, and just bloody not feeling well the whole time!!!
THanks for the info, sorry to hear the carboplatin failed, and really hope the taxol and gemcitabine work for you.
Do let me know how you get on.
Love and hugs
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Sorry to hear about your brain tumour. I was given a similar diagnosis three weeks ago after being relatively well for several years with ibc, so I understand how devastating it is.
Glad to hear you have such faith in your oncologist, that must be very reassuring.
I too am hoping to be able to beat the odds and have some radiotherapy planned to my brain. My onc hasn't mentioned surgery, so I presume this isn't an option for me.
Really hope the treatment goes well for you and keep kicking a***!!!
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Nice of your onc to be so sensitive on this issue!!!! Honestly, I had one registrar (in the early days when I couldn't handle this sort of thing) tell me I should get on my knees and start praying! My onc called him a tw*t.
This is MY understanding of the situation as gleaned from my onc, my nurse, and various tit bits from websites (ie very subjective and not necessarily correct...!!!)
ANY spread beyond the axillary lymph nodes is INCURABLE SECONDARY BREAST CANCER. (Sorry BCC, I think you're wrong). I was told mine was incurable when a node in my neck proved cancerous. On that point my onc was clear, and they weren't aware of any other spread at that time. Cancerbackup also have a section on 'Secondary Breast cancer in the lymph nodes' (not that it tells you much else- but at least it calls it 'secondary'!)
In terms of 'staging', I would say as it puts us in the Stage 3b category, as stage 4 is when it has spread to other organs and they give you the 'standard' prognosis of 2 years tops.... (not cos thats necessarily the case, it just seems to be 'procedure' - they don't really know...). I would say this needs looking at tho.... is the skin not the largest ORGAN in the human body?????
The point is I suppose, that regardless of spread to other organs or not, we are always only one scan away from being given a terminal diagnosis so why should it be taken less seriously? The way I have always seen it is that RR recurrance is just the next step towards terminal cancer - just some people miss out that step. Oh, and when I have said this to people thats 'being negative', no its not its REALISTIC!!!!
Thanks for starting this thread Jane. Didn't realise there were so many of us in the same boat.
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Just to respond to a couple of points raised by PatricaM and Jantharra:
Patricia, yes I had lumps quietly growing in my neck, but being controlled by capecitabine for about 4 years before it spread to the skin. It started out as a small patch of itchy red dry skin. (I had had rr in the skin on my chest wall previously so I immediately recognised it as 'breast cancer in the skin' (a phrase you'll be lucky to find anywhere else!) as opposed to just a 'rash'.
I was fairly confident that starting Docetaxol would sort it out but after 3 cycles it was clear that the cancer was marching on regardless. Some areas responded really well (the skin on my chest wall and clavicle nodes) but the neck area showed no response at all. As I say, it now covers a region from behind my ear, down my neck (not quite to my collar bone), and round to my voice box. It feels like a solid mass of fused tissue, and is red and weepy and sore. I have just finished 10 fractions of radiotherapy and am waiting to see if this has worked.....(no sign yet - any ideas how long these things take? Last time I had radio was as a 'mop-up' exercise after initial treatment so there was nothing to 'measure').
Like I said, my fear is that if nothing can stop this spread around my neck I will be slowly strangled to death - sorry if this is frightening you Patricia. (Need to speak to onc on Mon wk and express these fears).
Jantharra, I noticed you have had Carboplatin which is what my onc said would be the next move for me when I have recovered from radio.
I am slightly confused tho, cos first you said I didn't work, then later you concluded that there had been a partial response.
Can you let me know how you found carboplatin ie side effects etc. How well or not it worked. And do you know what made your onc choose that particular drug? I looked it up and although it 'can be used for other cancers', it's main use is for ovarian and lung....... I would have thought there were more obvious options to try first? (well, in my case anyway, I don't think I've exhasuted all the BC drugs yet!!). I will ask him the same thing, but just wondered what your onc had said. Maybe there's evidence of this particular drug working on the skin? WHO KNOWS??? If they do, they certainly don't like to share!!!!
Jane, I'm going to email cancerbackup/macmillan with the same question re lack of info regarding regional recurrence/skin disease.
Best wishes to all of you.
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Up until being told I had a brain tumour a couple of weeks ago, I too often felt like an imposter!
I think I have told you before (sorry if I'm repeating myself) that I lived with affected lymph nodes in my neck and chest for roughly 4 years without any adverse symptoms. I recieved chemo (capecitabine) every now and again to keep it in check, but wouldn't have really known i was ill (lucky me).
Yes I was told it was incurable at the time, but very little about what to expect really, so I supposed I have spent the last 4 years veering between feeling pleased that its not reached my vital organs and in the grip of fear that one day it would.
What I wasn't expecting and what there is (from what I can find) ZERO information about, is what happens when the disease spreads to the skin from the lymph nodes on your neck. Call me ignorant, but I hadn't anticipated this development - probably because there's no information about it. However, ask me what symptoms to expect if its gone to your liver or lungs and I'm well clued up!
What has happened to me I could not have anticipated a few months ago. I now have a 'half collar' of skin disease which is slowly strangling me, disease in my parotid gland which in a cruel twist of fate has disfigured and paralysed the right side of my face, and all sorts of pain associated with having these symptoms.
I now understand what it is to have cancer every day - and I haven't even started on the brain tumour!
I was expressing my exasperation to a 'friend' that there is so little known about it and she (comfortingly) said 'but what could you have done even if you were aware?'. Er.... prepared myself mentally for having a facial disfigurement? maybe been a bit more 'on-top' of my cancer ?(my onc has always been very laid back about the 'small lumps' in my neck). As tho 'small' cancer is much better than 'big' cancer. I always thought 'well, its not gonna kill me there - if he's not worried, I'm not worried - we only need to worry when it goes to my organs'. Ooooh I wanted to shout at her!!!!
Sorry Jane, I don't have any answers, but I just wanted to respond as a fellow IRR as you've given me good advice previsously.
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