Further spread - in a lot of pain and feeling scared

If anyone can help me with similar experience I would be so grateful.
I have had bone mets in sternum and ‘spots’ on spine for 2 1/2 years.
Recently I started to experience a stinging type of pain that started in the sternum area and travelled across each side of my chest to my armpits. I had a CT scan which revealed a lump in the soft tissue of the chest and an enlarged lymph node in this area too.
Now I am waiting for an MRI scan next week to get a 'better look 'at the soft tissue.

For the past five hours I have been in so much pain. It feels like just one very small area just under the surface of the skin to the side of the sternum (the side I had a mastectomy 10 years ago). It’s almost a ‘stinging’ kind of pain rather than the dull ache that bone pain causes.

Have any of you experienced something like this? Do you know if you get an enlarged and painful lymph node what happens? This has got me feeling a bit scared as it’s just getting worse and worse.

If I’m still feeling this in the morning I shall try and ring my oncologist. But after the struggle I’ve had just trying to make an appointment with him I’m not very hopeful of getting much help. If any of you know what I’m talking about please let me know. Thanks!

Hi Jackson2
Poor you,I would ring NHS direct if your pain continues, you carn,t go on all night with it,they will give you advice,hope your pain subsides,
all the best for tonight.

Hi Jackson2

So sorry to hear that you’re having so much pain right now – I don’t have any experience of this type of sternum pain (my bone mets are elsewhere), but I do know how scary it is to be in such a lot of pain. I wonder if you could get some help more quickly from elsewhere, e.g. your Mac nurse? hospice doctor/nurse? GP? Hope you get some support soon and that your pain gets more under control.

Marilyn x

Hi Jackson2

I’ve had a lot of trouble with pain over the last couple of weeks…mine is nerve pain caused by tumours in nodes in my neck and soft tissue…the tumours are trapping nerves and medication is proving difficult to get right.

This might be what’s causing yours. Please do kick up a fuss…it is so scary I know when pain begins to feel out of control. My pain is like a shooting pain which burns from the tumour to my shoulder and then down the rest of my arm…worse when moving about.

Hospice nurse and pallaitive care doctor with GP are taking the pain seriously and are trying various combinations of medication…more useful perhaps than oncologist?

Jane

Thanks so much for your replies. I don’t have a Macmillan nurse or any hopice contact. Since being dx with secondaries I have never been offered any other person to contact other than oncologist. My GP is great but he has admitted he doesn’t have much expertise on this.

I’ve just taken my Amitriptylline so hopefully I shall start to feel sleepy soon! I think pain is always more scary when we don’t know what’s causing it. I also feel worried because I seem to have got so much worse so quickly - somehow I just wasn’t expecting anything to happen so fast. Sounds stupid, I know, but I was doing such a brilliant job at fooling myself that there was nothing wrong with me!

Jane - I’m so sorry that you’re experiencing a lot of pain at the moment too. I really hope you manage to get it under control soon so that you can get on with doing some more of the things you hoped to. I’ve read a couple of your posts where you’ve talked about shifting expectations and hope. I’ve been doing a lot of that this week and I’ve found it strangely comforting!

Hi
I have similar to you but have been having a lot of pain in my lower spine.
When I last saw my GP he mentioned that Macmillan were quite helpful when it comes to pain relief. My oncologist had been saying the same.
So I rang GP and asked for a referral and a Macmillan nurse rang within a couple of days and came to see me.
We tried all kinds of different medicines over a few weeks but pain was quite severe at times and still is. The Macmillan pain consultant also came to see me as my Mac nurse was off for a week and he thought I should have an MRI scan as it could be spinal cord compression.
To cut a long story short, the MRI was arranged and in the end I went into hospital last week as an in-patient- napparently it is the quickest way to get an urgent MRI scan, which is ridiculous.
Well. It wasn’t spinal cord compression, but it was decided I need nore radiotherapy to the base of the spine. I had planning and the one-off treatment yesterday. The pain is still terrible but it should get better.
Jackson - this is a long winded way of saying, can you have radiotherapy to the area? that really seems to help my pain and nothing else really does. I am currently taking ibuprofen, paracetomol and oramorph which helps to a small degree.
I am learning that there is no easy way to ease pain and I might get a thread going later on this topic. Pain and any associated nausea/woozy feelings is what is stopping us leading reasonable quality of lives. And I am really surprised that with all the research into cancer that pain cannot be better alleviated
Ena x

Its really timely helpful for me having these pain threads just at the time I need them.

Having stopped chemotherapy as I’ve run out of standard chemo options I am really gunning for best quality of life as my cancer (inevitably) progresses…unusual so far in having no major organ sspread…‘just’ neck and shoulder and chest wall and a few dodgy nnodes elsewhere.

So getting in bad pain so quickly (it was already happening as I came
off chemo) has been so so upsetting and scary.

Support for pain relief seems such a postcode lottery…like everything else. So far I’m impressed with the degree of support I’m getting in my area. Here (South Hampshire) there aren’t MacMillan nurses but hospice community nurses who work out of the local hospice in Southampton. My GP has the repsonsibility for my care and the hospice nurse who calls or visits me weekly recommends pain relief drugs to GP. GP alos calls to see ow I am say fortnightly.
I had a palliative care consultant visit me at hoem yeterday for a more detailed review. No they haven’t got it right yet, but I feel they are really trying and pro active and taking me seriously.

I do get scared about ‘what if’ I get a really really bad attack of pain outside ‘office hours’ and I aso wonder about the general hospice philosophy that all pain can be controlled…if they can’t get it right now what about later on…my constant question.

Like us all I want to live as well as possible for as long as possible and pain control and potential nausea relief are the two things which matter most to me in helping me to get this.

This is so important.

Jane

Hi Jackson, I guess right now it’s hard to know whether it is the sternum mets or the soft tissue stuff that is causing the pain. If it is the sternum, I have a friend who had really bad pain here just before being diagnosed with mets five years ago. She had radiotherapy which dealt with the pain really well. She also had six months of herceptin and has been NED for over three years. Lucky so and so.

If you have new soft tissue mets I guess they will probably want to treat these with chemo, perhaps capecitabine if you haven’t had it already or taxotere. This might also help with the pain.

Like Jane, I worry that I may have been only half truths about the ability of medics to control our pain when things start to progress to the “out of control” stage. It seems like the strongest pain relief involves being out of it or severe nausea too. I do wonder what the gold standard is for pain, what different sorts of pain there are and how we can ensure we get the best and most effective pain relief available, when we need it. It seems like a black hole in my breast cancer knowledge universe and I would like to be better aware.

Perhaps BCC could organise a seminar on pain relief for us, instead of showing us how to tie a headscarf.

Are you taking note BCC?

Deirdre

ps - I have several enlarged lymph nodes, including one in my chest and one in my armpit. I haven’t had any pain from them so don’t know what you might expect from your enlarged nodes. But my bony pain has always been the achey sort rather than a stinging.

Hope you get some answers soon.

Deirdre

Oh Deirdre - it would be so great to think I could get some answers soon but I have another week to wait for my MRI and then two weeks after that for the results. They didn’t want to decide on what treatment I will have until then. Thankfully today I’ve gone back to the dull ache which I can cope with.

I like your idea on having a seminar on pain relief. It is such a vital part of being able to cope from day to day. I also wonder how many GP’s and oncologists realise how frightening new pain can be when living with secondaries? And as Jane said, especially out of office hours or Bank Holidays!

Ena, thanks, I didn’t realise that your GP could refer you to a Macmillan Nurse. I will make some enquiries.

Yes splendid idea Deidre for seminar on pain relief.

After posting just now I’ve dug out an excellent palliative care handbook I got from the Open University when I was doing their Death and Dyign course a couple of years back. (Yes I have unusual tastes in adult education…!) Its actually very good…explaing different types of pain,(ie issues about individuals describe their pain,factors which impact on our experience of pain and whether it is ‘tolerable’ or not, interelation between physical and psychological factors, why some pain killers work on some kinds or pain etc. The information is out there and a really good seminar/workshop could be devised.

Jane

I have been complaining to any medic I come across how nauseous morphine based medicines make me and that I feel I cannot take the doses of pain killers I would like because I feel sick.
Recently, as I have said in this thread, a palliative care consultant/pain consultant came out to see me.
The day after he came to see me he rang and said he would like to refer me to the clinical psychologist at the local hospice - he felt there could be a psychological element to my nausea. That I think I will be sick when I take medicine and therefore I am.
I was not happy about this initially, but felt that any help would be beneficial.
So I saw the pyschologist the other day. We discussed the nausea and could find no reasons in my past why I suffer from it. And she quickly moved on, saying anxiety can cause nausea.
Has anyone else had a similar experience? I am just trying to get on with every day life, keeping it as normal as possible as I have 3 children. She did not seem to like the fact I have never cried over the cancer and that I am keeping a lid on my emotions too much. And I suppose she thinks these feelings are coming out as anxiety/nausea.
I would be interested to know if anyone has had a similar experience?
Ena

Just sent a message to BCC suggesting a pain seminar. Here is the text:

Hello all at BCC. I am Deirdre and have been a regular users of the BCC forums for about five years now.

There is an interesting thread on the forums about pain relief. It’s something that worries a lot of us affected by breast cancer, especially those with secondaries, some of whom have experienced debilitating and uncontrolled pain. Like many others, I have experienced bouts of severe bone pain since being diagnosed with mets, and I would like to be as informed as possible about issues to do with pain and pain relief.

I was wondering whether somebody at BCC might take up the gauntlet on this and think about organising a seminar on pain and pain control. It would, I am sure, be much appreciated. It would be possible to look at causes of pain, psychological factors, different pain medications and when they are useful/not useful as well as non drug alternatives to pain (TENS machines, acupuncture etc).

What do you think? It would be great to see something positive being done in this much ignored area.

Look forward to hearing from you.

Let’s see if BCC can get something moving on this.

Deirdre

Hi Ena,

My experience with opiates is that last year I was on morphine for some 3 months before i felt I couldnt stand it any more. I was very nauseous on morphine and physically sick as well. In fact being on the drug made me feel quite ill. This year I needed more pain relief so under the pain clinic at the Marsden I was asked if I wanted to go on a trial to find out why some tolerated morphine better than oxycodone and vice versa. Unfortunately I drew the wrong arm and got morphine and again had the same problems with nausea though not actually sick. Now some could of course say this was psychological but I chose to come off that arm and was switched to oxycodone. I have a totally different response in that I have few side effects on it apart from sleepiness. I chose finally to come of the trial because I felt it was too controlling and suspected as long as I was on it other options were being withheld. I think it would be an excellent suggestion for BCC to look at offering seminars on this subject around the country. Something of real practical help for those of us with secondaries to be able to come together and learn more from experts in this field.

dawnhc
(with apologies for taking this slightly off topic)

Well done Dierdre, that is a great idea to email BCC. As well as a seminar, a feature on the website on pain relief would be useful too.
Thanks Dawn, for that information - it is interesting.
Pain stops a normal life really - it is all I can think about. And I do have plenty of other every day normal concerns , committments etc but the pain takes over and it is hard to think of anything else.
Ena x

Deirdre Thanks for e-mailing. Let us know if you get a response. It would be good if there were a formal system for relevant BCC staff to feedback to forum users on our suggestions for seminars, resources, changes etc. I have been waitihg ages for a reply to some questions on my regional recurrences thread…Bertie promised a reply but still nothing…too hard before a Bank Holiday?

My pallaitive care book says there isn’t much use of acupuncture in palliative care. I am also peronally sceptical of TENS machines…but who knows desperaion could set in.

Ena: According to my palliative care booklet up to 30% of people on morphine experience nausea. Book says a lage proportion of these are ‘primed’ for vomiting…but what on earth does that mean??..maybe that it means that some prople are vomitey kinds of people who get nauseaous easily…dunno??

Anyway psychological issues may impact on feeling nauseous but it doesn’t make the nausea any less horrible and real…a solution still needs to be found. Some people do cry more than others…I cry most days about something cancer connected but I’m a crier.

Personally I dread nausea even more than pain (I’m definitely not primed for vomiting) as I have a massive phobia about feeling sick…and still have managed not be sick since I was 8 years old (and yes I do know the childhood issues associated with my fear of nausea but it doesn’t help.)

So far I have been mainly OK on morphine re nausea though I was briefly on tramdol which made me feel sick. Maybe our seminar could be on pain and sickness/nausea.

I had a bad pain morning. Woke early with shooting pains and then went out…hospital for blood test, bit of shopping…had to keep sitting down…nearly agony at times…makes me feel so grumpy and irritable…easier to deal with when on my own than with people…If I sit still pain goes but I can’t sit still for rest of my life.

Sun is out again so I guess this will be a sendetary weekend for me in the garden…really hope Ena you aren’t too bad and thinking of everyone else in pain too.

Jane

Hi,

I agree that some outputs on pain relief would be a good area for BCC to focus on.

I have had a couple of episodes recently when I have needed urgent advice on pain relief. Fortunately I have been able to get advice from my community nurse at the local hospice. They have a good system of cover, so if my regular nurse is away someone else in the team phones back. There is also a 24 hour help line.

I have been ok with co-codamol and ibuprofen until recently. Now I find I need something more, plus I am wondering if the co-codamol is adding to my nausea. I found Oramorph so sweet and syrupy it made me feel sick. The nurse advised trying a tablet form of morphine Sevredol so I am going to try that.

I hope evryone’s pain reduces over the weekend…

Best wishes,

Lottie

Deidre

Thanks for springing into action and emailing BCC. Well done.

Wishing everyone a good weekend.

Oh hang on Jane, I was told on no account should i use a TENS machine for pain relief - that of course may be because I have spread in my spine. Anyway I was nauseous on oromorph, but I have been fine on Oxycontin which is excellent for pain relief. Oddly I take paracetamol regularly too. Different types of pain different solution.

I think it is a really good idea to have a seminar on pain, but i know that it is a complex subject, so it would be good to agree on an aspect of this for BCC to consider.

I do hope that those in pain find some respite, it spoils everything and grinds one down.

Hope you dont mind me butting in as i am not a secondaries lady.

However just spent 2 hours visiting a friend who does post on here who is in a hospice just now. They are trying to ‘sort out’ her pain relief.

I definately think a seminar on PAIN RELIEF is much needed.

I was totaly ignorant of the different drugs and machines available to people, also sadly just what the side affects can be and the pain some one can be in.

R