What do secondaries feel like - symptoms?

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1

I so much need to know:

When you start having aches and pains from e.g. bone mets, is the pain more or less the same all the time? Or can it be there for some hours or a day and then dissappear for a while, e.g. a few days or a few hours. And what when you go to bed, does it bother you so that you cannot sleep or wake up early in the morning?

Does the pain respond to painkillers like paracetamol?

Can you describe other symptoms than pain?

Please give me some answers, they will be most appreciated.

Kind regards,

Ca-Va

2

What a difficult question to answer Ca-Va! The first I knew about my bone mets was 6 years ago when i got sciatica. Tests revealed that it was very extensive in my skull, collarbone, ribs, all areas of spine, pelvis and hip! And before that bout of sciatica I wasn’t aware I had a problem at all. Since diagnosis I would say the pain comes a goes especially if I overdo things. I have no other symptoms apart from the pain.

dawnhc

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As Dawn ssays it is a very difficult question to answer, I started with a pain in my groin that the doctor failed to diagnose for six months. At times it would ease but it often felt like a dull, heavy ache especially at night. I managed to carry on going to work, often dosed up with Ibruprofen, I think that if you have a pain for more than two weeks and have had primary bc you should go to your dr and ask for a bone scan and that should confirm if there are secondaries in the bone.
A bone scan showed that I had mets in the pelvis and the sternum (which was a suprise as I had no chest pain).
Good luck
Barbara

4

Hi

I echo the above comments about it being a very difficult question to answer.

I was actually 5 months pregnant when I suffered excruciating pain in my rib - as if I’d pulled a muscle but that it went into spasm for a few minutes. In that time, I could not move. I went to GPs - but the strongest they could prescribe me was co-codamol - I came out in a rash so had to use paracetamol. They said that it was most likely to be a pulled muscle.
Took 6-8 weeks to subside, but then got sciatica - which I put down to my increasing pregnancy weight.
Then my rib started again!!! I saw another GP in the practice - who again put it down to pulled muscle.

Towards the end of my pregnancy, I was having to use crutches to get around and also a wheelchair.

I had a check at the maternity hospital where my condition alerted one of the consultants, who in turn called for BC Consultant, who sent me off for x-rays.
They arranged for c-section the next day and 2 days later, an MRI scan.
They told me 2 hours after MRI, that I had secondaries.
They wanted me to stay in overnight so that I could have a bone scan the following day, but I just wanted to be at home.
I was absolutely gob-smacked with the dx - following the birth, I could walk unaided and was so sure it was down to the weight of the baby (11lb 2.5oz).

I had secondaries in my hip/pelvic region and also a spot on my rib.

Following bisphosphonates, I mainly suffer dull aches - like when the weather is really wet and miserable.
But, I also know when the C is on the move - these are more like angry, hot stabbing aches.

I’ve had a new pain for a couple of weeks now in my collar bone/shoulder - Onc is organising an MRI to check this out.
I have been ‘proud’ that I can get by on paracetamol/ibubrofen but was nearly banging on GPs door to request something stronger. But, this pain has now subsided ???

I have problems in bed because I have it in both hips - and prefer to sleep on my sides. So, I toss and turn all night - I get a horrible numb ache if I have been on one side for too long.

Gosh, I’ve really waffled here - get the violins out! :slight_smile:

I assume that you’ve been having pains/aches - have you contacted your Onc about this?
I personally wouldnt bother with GP level - go straight to BC Nurse or Onc if you have already had primary BC.

Keep us posted

Take care
Anne xx

5

I have been reading this since I have been diagnosed with inflammatory breast cancer 18 months ago at 15 years old and post diagnosis, following chemo, mastectomy and radio followed by tamoxifen. I know that the prognosis is not good for this but having said that my results were good from the mastectomy, all margins clear and the oncologist says I will probably be OK, which is good new from an Oncologist mine in particular who is not renowned for his optimism or sense of humour but a fab guy nevertheless.

However lately I have been getting an ache in my ribs and hip bone which comes and goes, I put it down to the effects of the menopause and the ongoing lasting effects of the chemo but am a bit worried.I am told that these pains are normal following treatment and onset of the menopause. However I feel reluctant to report the sporadic pains to put myself through the stress of tests etc when life has got back to normal, back at work full time managing 40 staff and all going well.

I think I have answered my own question here in that I should get it investigated. Good luck to all.

Maria

6

I agree with sixpen - go straight to Oncology team. I was misdiagnosed for 6 months by GP. I had agonising pain in lower back which came on suddenly. Was diagnosed as a back strain and I was prescribed painkillers and anti-inflammatories. It got better, but i still had a niggly pain, so went back and expressed my fears about secondaries. They dismissed this. Eventually I went back and saw another doctor, who took me seriously and sent me for tests. I was diagnosed with secondaries in bones, lung and liver. The pain had been caused by crushed vertebrae.

I had immediate radiotherapy to back, and am now on biophosphates. I have very little pain now, just a niggle now and then in bed or if I have been sitting in same position for a long time!

To sum up. I would insist on tests to put your mind at rest. It coukd be nothing at all. But if it is secondaries, it is best to find out sooner.

JOY

7

Hi Ca-Va and all

I would agree with comments above that say if you’re at all worried, get it checked out … and if you don’t have a good relationship with your doctor then go higher - and keep pestering till you get a definitive answer.

I went to my doctor in January for pain in my hip/leg that had recently started. Pain that came and went, but felt inflammatory and radiated all down leg, sometimes was worse in knee and/or ankle than hip. When it was bad it was awful (had to crawl around on hands and knees and sometimes go up/downstairs on my bum). No painkillers seemed to help, but I wasn’t prepared to take anything stronger than paracetamol/ibuprofen as was breastfeeding.

Anyway, he sent me for an xray straight away but that came back ok so no reason to suspect cancer. And I had a routine appointment with my surgeon consultant in March and ended up seeing a registrar not the main man as so often happens. I mentioned the leg pain to her and she pretty much categorically told me that it wasn’t cancer, that bone mets didn’t go to the legs, just the arms and upper body! So trusting soul that I was I put any thought of bone mets to the back of my mind and tried physiotherapy. But the pain kept coming and going and then in April it came and didn’t go and after three weeks of that I went back for more physiotherapy and after three weeks of that the physiotherapist said she didn’t know what was wrong with me and referred me to an orthopedic consultant. They arranged for more xrays and also reviewed the xray that had been taken in january and guess what decided that there was something wrong after all (can’t understand why wasn’t picked up first time around, even if very small, in view of my history). Have now had radiotherapy to hip area and more scheduled for back and left shoulder and start chemo/herceptin in 3 weeks.

What other symptoms did I have? Um, terrible tiredness, I lost weight, I had pneumonia and chest infection after chest infection. Generally really unwell.

Let’s hope that your pain is down to something else but the only way you’ll know for sure is to have tests.

Let us know how you get on.

Alison x

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Hi Alison,

I am horrified at the misinformation that is out there - particularly amongst some GPs. I have a friend recently dx with secondaries and severe pain in her thigh, amongs other things, and yes she has bone secondaries in her thigh. Metastatic bone disease can affect areas like skull, ribs, collarbone, spine, pelvis and long bones. Was your pain due to the hip/spine mets or did you have it in your long bone as well? I have just recently been treated with rads for pain which was predominantly in my thigh bone (have had bone mets for 6 years now). It has not spread to my femur but the pain was being caused by problem worsening in the hip (ball & socket) area and lower spine. Hope your rads is working for you and you get pain relief soon. Are they also going to give you one of the bisphosphonate drugs - i.e. pamidronate/zometa or ibandronate? This is usual with bone mets.

dawnhc
xxx

9

Hi Dawn

my leg mets are in the top of the thigh bone, not actually the hip ball/socket (plus mets to lower spine). Funny thing the radiotherapy - my leg had been feeling incredibly stiff for weeks and in fact the pain I’d been experiencing had almost simply metamorphosed into that stiffness. The orthopedic consultant I saw put me on crutches straightaway (I’m now getting away with using just one) which immediately helped as it took the weight off the leg. Post radiotherapy and I’ve experienced the pain flare they tell you about and the stiffness is still there so I haven’t yet felt like it’s helped. I know it’s early days, but the old pain radiating down the knee/ankle has returned as well now, so am now slightly worse off than just pre-diagnosis!

As for bisphosphonates - I was put onto Bondronat but after two weeks came out in a horrendous red itchy rash all over so stopped taking it. I think they’ll give me the intravenous one (or is it injection?) along with the herceptin.

Well done you for having bone mets for six years (if you know what I mean!) - I hope I can say the same in 2014!!
Alison xx

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Hi alison,

How long ago did you have the rads? Mine started 3 weeks ago and was for 5 days. I was warned that it would get worse before better for at least 2-3 weeks. Some on here have mentioned even 4-6 weeks. It certainly got very much worse and varied from day to day but at long last things are easing and the pain is very mild now, though my hip feels quite week at the mo. The bisphos are intravenous. I get mine same time as herceptin as well - have been on bisphos since Jan 03 and herceptin Jan04.

Hope things start to feel more normal for you soon.

Dawn
xxx

11

It took my GP quite a few months to realise that maybe he needed to refer me to the hospital for an MRI scan. By that time I had a fracture in my spine and couldn’t really walk. I was told on the numerous occasions when I visited the surgery that there was nothing to worry about and it definitely wasn’t anything to do with cancer. This will be 4 years next month and I really wonder whether things have improved since that time as I don’t believe it has. In fairness though to some GP practices they don’t get to see secondaries but it really highlights to me that some mechanism needs to be in place as an alert system.

Work is starting to be done on highlighting to GP practices plus all those others who we may come in contact with such as osteopaths etc on signs and symptoms of secondaries and Breast Cancer Care are, I believe, are taking the initiative with this.

12

Hi Dawn

I had the rads for 10 days in the first 2 weeks of July, so I guess I’m still within that 4-6 week period. Hope your rads has worked and your pain receded.

Alison x

13

Pinkdove - I wonder if so many late dx of bone mets is down to many hospitals not encouraging patients to refer back to them. At the Marsden we have always been encouraged to do this. Then again it may be because I have never really been ‘signed off’ with them. But I know there have been changes generally in how long hospitals continue to see patients after treatment finishes and that the 5 years has been reduced to 2 years in many places. But if hospitals are going to absolve themselves of this responsibility then GPs need to be very much more aware.

Dawn
xxx

14

Hi Dawn

I think you’re right. Although I was also never officially signed off in the 13 years since I’ve had breast cancer (because of my family history), at no point was it ever pointed out to me that I should go back to the hospital rather than pursue it through my GP which also sounds niave on my part but I wasn’t aware of the signs and symptoms at that time plus I think because I’d gone 10 years NED I thought I was fine!!

Education and communication need to happen amongst everyone. I’m on the Advisory Group of the Taskforce here and we are looking at ways of communicating this information to others.

Take care.

C
x

15

Oh my god christa88,am I reading your post correctly-did you say you were 15 years old when diagnosed?

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It woud also be remarkable, at the age of 16 1/2, to be managing 40 staff !

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LOL I think christa says in an earlier thread that she is 47!

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Oh silly me!

19

Did anyone ever suffer severe cramp in legs and feet when experiencing the pain of bone mets , one never knows unless you ask others experience,…just wondered ladies …Dx

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Hi longden, I have bone mets but the only time I’ve had cramps was when I was on Tamoxifen…x