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Could my bone pain be a sign of bone mets?

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Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Hi Caroline,

Thank you for your message. I spoke to my Oncologist and she says she isn't worried about my bone pain. She thinks it's most likely linked to the chemo or the filgrastin injections. Thankfully it has eased now (probably psychological!).

Am sorry to hear that you are getting back pain. Though to put your mind at rest I was told that chemo can affect your back, particularly if you have a weakness there or had suffered with back pain before. In fact a friend of mine who had chemo for Leukaemia still suffers with back problems and joint aches now (7 years on!). Though definitely worth you mentioning it to your BN, even so she can put your mind at rest!

I have found that the diagnosis of the cancer was the easiest bit for me, it's everything that goes with it that I have found difficult. You begin this journey thinking that nothing can get worse than being diagnosed and you couldn't be more wrong! I have had 2 x DVT's, eye problems, bladder issues, bowel problems etc. Now I am waiting for my liver count to drop so that I can have chemo, am 2 weeks behind now. I am having a liver scan in the morning to check what is going on and I can't help but worry that the cancer has spread. I made the mistake of reading up about high liver count and the symptoms of liver cancer. Now I have a bloated stomach and pain in my liver that I am sure I have psychologically caused!

The worry and waiting is definitely the worst part of this journey, by far!!

Keep me posted with how you get on xx

ice_cc
Member

Re: Could my bone pain be a sign of bone mets?

Hi everyone,

 

I can sympathise with your worries Bookworm41 (although hope your mind has been put at ease now?). I've had lower back pain for a few days and there's no sign of it going away. I know back pain can be caused by a million things that are much more likely than cancer spread, but I stupidly read an article about Olivia Newton-John's disease progression which said that lower back pain was a symptom of her mets and now I'm worried anyway! I'm 31 and otherwise a very sporty and healthy person, and I've maybe just overdone it with exercise this week, but I guess it's worth mentioning to my breast care nurse anyway?? I've just started radiotherapy a couple of days ago, but doubt it's related to that.

 

Caroline x

Chick1
Member

Re: Could my bone pain be a sign of bone mets?

Hello again bookworm,

 

It was not necessarily the chemo that has left me with the current issue, but it is possible that the mix of treatments have weakened what was previously strong, alongwith with just normal life!!  It's frustrating because I am use to being physicaly active and I miss things like swimming, weight training and being able to walk without pain.  Nevermind, if I am lucky I might be offered a pain relieving injection within a couple of months,(yes - said with a hint of sarcasm).

 

I am not sure about how usual it is to have a complete pathological response as I think it can be vary depending upon the particular sensitivities of the cancer, for example the grade of cancer cells, whether hormone positive, HER  positive, hormone and HERr positive or triple negative etc. I did see somewhere that from a meta-analysis in 2016, it was put at 21% or so but that seemed to be across all cancer types which is relatively meaningless.  I am sure my Oncologist said it was about 6% for people in my circumstances but that seems very low.  Anyway, sod all that, it is just brill that your tumours have responded so well and fingers crossed  for you that they keep shrinking.

 

One of the reasons for chemo first for me was to shrink the tumour (as I am relatively small breasted) so that I could have lumpectomy.  At mid term it was even confirmed that I would have lumpectomy due to the amount of shrinkage.  But in the end,  due to rare consequences, it turned into a mastectomy.  So, I think your Surgeon is more wise to err on the side of caution than mine was, and especially as you have 3 tumours.

 

If Tamoxifen is being recommended for you then your cancer is oestrogen positive too.  Tamoxifen would be instead of the Anastrazole that I take.  The drugs work in different ways, but both have the same objective in that they aim to reduce our body's access to oestrogen in order to reduce  recurrence or development of new primary hormone sensitive cancers. 

 

Anastrazole and the other aromatase inhibitor drugs - Letrozole and Exermestane are only offered to post menapausal women or women who have had an induced early menapause (whether through regular injections to stop ovary function or through ovary removal).  Tamoxifen can be used for both pre-menapausal women and post menapausal women who are at low risk of recurrence or who can't stand the aromatase inhibitors.  There are no guarantees with the drugs but in my opinion, it is worth giving them a go unless the side effects become too unbearable. 

 

The Bishphosphonate treatment would not usually be offered as a breast cancer treatment as there was no evidence in research that it provided any benefit to pre-menapausal women in reducing bone spread.   

 

Take Care,

 

Chick X

 

Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Hi Chick1,

I am so sorry to hear that the chemo has left you with lots of issues. It is so unfair that you have to deal with it after all that you have already gone through. I hope that it will be something that will improve with time?

Yes I am so pleased with the results so far, although I am aware that the cancer can decide not to respond at anytime, so am trying not to get too excited! Wow, is that usual to get a total pathological response? Did you still have to have a mastectomy after? My Consultant told me that although he hopes my tumours would shrink slightly he did not expect them to shrink much, so to always assume that I would definitely be having a mastectomy.

Thank you for the information on the drugs, I am certainly learning more each day! My Oncologist said that I would most likely be on tamoxifen for 10 years after. Is this alongside the drugs you take or instead of?

Sorry for all the questions, I am someone that has to know everything! Knowledge is power, as they say!

Xx
Chick1
Member

Re: Could my bone pain be a sign of bone mets?

Hello Bookworm,

 

Yes - finishing the main treatments should have been a blast ( I also had herceptin injections for a year as I was also HER2+) which finished in April.  Unfortunately my back/leg issues started in March - so the Blast has not really happened yet!!  I have also decided that "Moving On" is a bit more of a complicated process than first thought.  I think it is very variable depending upon individual situations, conditions and treatments and it is better just to continue to take things one step at a time rather than expecting some kind of treatment finale with a band playing and champagne corks popping.

 

That is blooming brilliant regarding the diminishing tumours - really excellent news for you and it shows the chemo is being effective.  The T part of the chemo may be a bit more strong but I really hope it blasts your tumours  to oblivion like it did with mine and you get a total pathological response (as they call it).

 

Regarding the drugs mentioned.   Anastrazole is an aromatase inhibitor which stops the production of oestrogen in postmenapausal women or women who have had an induced menapause.  It is recommended as my cancer was hormone sensitive (ER8, PR2).  It can assist in preventing recurrence of or development of new primary oestrogen positive tumours.  There are no guarantees so it is still a bit of a lottery.  I have been advised to take it for at least 5 years - or even longer but will cross that bridge if I manage the 5 year point.  Side effects of it are very manageable at the moment for me.

 

The Bishphosphonate infusion is something relatively new.  Bishphosphonates are usually given to people with oesteoporosis or similar to increase bone mineral density.  However, they are now being offered to wormen, who may be deemed to be medium to high risk of cancer recurrence, as an adjuvant breast cancer treatment.   Research indicated a benefit for post menapausal women in that it reduced reccurence in the bones which can be an initial site of breast cancer spread (metastasis). 

 

It was also a no brainer to accept the Bishphosphonate treatment as Anastrazole can depete bone mineral density even more.  When I had a Dexa scan to check out my bone mineral density, I was classed as oesteopenic and the Anasty will no doubt weaken this even more.  So, the Bishphosphonates are serving a dual purpose as far as I am concerned in preventing oesteoporosis as well as recurrence.  I have just had my 3rd one.  I prefer to have an infusion every 6 months than take a tablet every day or week.

 

Keep hold of that lovely positive attitude and you have a great week too,

 

Chick X

 

Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Thank you Chick1, I am pleased to hear that you have finished treatment, it must be a wonderful feeling! What are the drugs that you are on? Are they something that everyone has to have after?

It looks like the chemo is working well at the moment. I had an ultrasound last week and it showed that two of my tumours have shrunk by half and the largest one has reduced by a quarter. My Oncologist was very pleased. Hopefully it will continue!

Thank you for the words of advice, I will make sure that I speak to someone if I start to feel overwhelmed. I am just trying to take each day as it comes and to remain as positive as possible.

Have a good week x

Chick1
Member

Re: Could my bone pain be a sign of bone mets?

Hello Bookworm, 

 

Lots of big hugs 🤗 🤗 🤗 to you too.  Yes,  I have finished treatment apart from the daily Anastrazole tablets and a Bishphosphonate infusion every 6 months for 3 years.

 

I was like you in that I had chemo first, also FecT.  It can be beneficial to have it first in my opinion.  For example,  its effectiveness can be ascertained via regular monitoring, for example if the tumour show shrinkage.   Fingers crossed that you get a total pathological response to the chemo.  

 

I know it seems like a never ending crap time but you sound like you have a good head on your shoulders and you have your lovely family to hopefully keep you positively motivated.  We all need support so you make sure you are kind to yourself to.  I had many weepy moments to myself and found crying a release.  I also preferred to talk to strangers about my fears or when feeling very challenged so I would ring up the BCC helpline occasionally or even the Samaritans to empty my head!  You don't need to be suicidal. 

 

I know what you mean about if you could have treatment without  telling people.  I was very similar.  I only told most family the day before I went for surgery and that was only because I thought if something untoward happened to me during surgery,  family members would be very upset with the family member who had known for some time and I could not stand the thought of that.  

 

Take care and don't let your shoulders get too weighty! 

 

Chick 🐣 X

 

 

 

 

 

Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Ps Am glad to hear that there was no spread for you. Have you finished treatment? X
Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Hi Chick1,

Thank you so much for your detailed reply!

I am having 6 lots of chemo (FEC-T), followed by a mastectomy, then radiotherapy. I have been told that I won't have reconstruction for a year and that due to having radiotherapy I am unable to have an implant.

I am currently awaiting my 3rd FEC treatment which I was due to have tomorrow, but unfortunately my liver function is not good enough so I am having to wait. Thankfully, apart from the DVT's (1 gained after each treatment) I have had few side effects. Although I hear that the T part of it is more unpleasant? So will look forward to that!

I feel much better about the leg pain having spoken to you all, thank you, I have notified my BN so I am going to try and relax about it.

Unfortunately I am the strong person in my life and the person that everyone else always comes to if they need support. I find it very difficult to ask for help so tend to deal with things alone. I feel so much more comfortable helping and supporting other people. I also hate the thought of the distress that I am causing to my friends and family and have actually found it the worst thing of being diagnosed. If I could have had treatment without telling anyone then I would have done, unfortunately it wasn't an option!


I am glad that I have found this forum as I feel that I can say how I feel without upsetting people around me. Thank you for taking your time to listen and give valuable feedback, it really is very much appreciated.

Big hugs xx
Chick1
Member

Re: Could my bone pain be a sign of bone mets?

Hello Bookworm,

Sorry to hear about your diagnosis and that you are having such a worrying time. Are you having chemo first or have you already had surgery?

I agree with some of the other responses. I only managed one GCSF injection when on chemo - OMG - refused them after that. I was left in agony for a week and it delayed my treatment and caused other problems. However, the injections were only advised during Taxane chemo treatment. Hence, the current leg pains may be related to the type of chemo.

Even without the extra injections, the Docetaxel chemo caused bad leg and foot pains which would hit a few days after treatment. I found a dihydrocodeine tab with paracetamol usually did the trick at the time to reduce pain. I also had leg muscle issues after chemo - could not bend my legs for a couple of weeks without agony in the thigh muscles.

Bleeding treatments can cause so many other issues. For what it's worth, yes we need to be vigilant and get things checked out and it will always be a worrying time. We have cancer, but unfortunately it does not stop us being susceptible to the other ailments in life.

I have had constant one sided hip and excruciating leg pain which all started in March. I had a nuclear bone scan (the scan for bone spread) in May - no spread detected. Had an MRI in August (yes Long gap and the only reason I got the MRI was because I talked them into it as not standard for back issues.) Turns out I have a prolapsed disc that is irritating the sciatic nerve causing the torture. Oh well, it could have been worse.

I wish you all the best in your treatment. I hope the pain stops for you soon. Constant and unexplained pain is so draining. If it continues to affect you then raise it again with the Oncologist because it is causing you distress and worry and that is not good for you. Even if it is due to the treatment, perhaps you still need some help to manage it.

By the way, having a wobble etc - all pretty normal in this situation. You are a young woman with a young family, who wouldn't have a bleeding wobble. I hope you have someone to talk to about how you are feeling and your fears. Sometimes it can be hard to be fully open with those closest to us. Counselling Services should be available if you feel this would help or have you got something like a Maggie's Support Centre nearby - where you can pop in for a chat or an off load when you need it. Of course, there is always this Forum too and the free helpline too.

All the best Bookworm,

Chick 🐣 X
Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Hi pastamissus, thank you for your reassuring words, my BN said almost exactly the same thing. However she did say she would notify my Oncologist to be on the safe side. I have noticed that I seem to be fine for a couple of weeks and then I have a wobble where I blow things totally out of proportion! Very frustrating xx
pastasmissus
Member

Re: Could my bone pain be a sign of bone mets?

bone met pain is persistent (doesn't really come and go) and tends to be one site only. You are going to have lots of odd aches and pains that normally you wouldn't notice, but because of the cancer diagnosis your first thought is always going to be 'is this cancer-related'?. Try not to panic until you have had persistent pain in one site for a week continously 🙂

PS I'm a doctor

Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Hi Chaffinch17, yes I have been taking these injections and also have to inject daily with clexane as I have a DVT in my shoulder and my arm! I read that the filgrastin can cause pain but would it take 1 week after I stopped them for the pain to start? X
Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Hi Rockstarchic, thank you for your reply. Yes you are right, I have become highly sensitive to any ache and pain and I can't help but put it down to the cancer. I appreciate the words of comfort, am hoping they will help me sleep tonight. It's very frustrating as I am normally a very level headed person but I can't seem to think anything other than the cancer has spread! I am only 40 with 3 lovely children and a wonderful husband and the thought of leaving them all is devastating. X
Chaffinch17
Member

Re: Could my bone pain be a sign of bone mets?

Have you been having the injections to support your bone marrow in making white blood cells. They can cause a lot of bone pain. I didn’t have them but have been told that epsom salt baths and ibuprofen work well.
Rockstarchic
Member

Re: Could my bone pain be a sign of bone mets?

Hi bookworm41 when your first diagnosed every pain is a worry and you tend to notice them more . You have said you have had 2 chemo sessions this can cause bone pain as the chemo takes the moisture out of your bones so this could be the case . I am 4.5 years down the line I have intermittent bone pain but I think it’s tamoxifen chemo and radio side effects get it checked it but as your highly hormone receptive your body is lacking oestrogen hope it improves and good luck with chemo .
Bookworm41
Member

Re: Could my bone pain be a sign of bone mets?

Thank you Ann, yes I have had a CT scan and MRI but they did not involve my legs, arms or head, is that normal? I will phone my breast nurse tomorrow. Thank you for your reply. X
ann-m
Community Champion

Re: Could my bone pain be a sign of bone mets?

Hi Bookworm,
I don’t have a bone mets diagnosis, but from what I’ve seen, any new & persistent symptom should be checked out. Have you had a ct scan at all? If not, I would certainly be asking for one.
Chances are all’s ok, but do keep on at your team about it.
It might also be an idea to post in ‘ask our nurses’ or ring the helpline here.
ann x
Bookworm41
Member

Could my bone pain be a sign of bone mets?

Hi, I have recently been diagnosed with stage 2 invasive ductal cancer, highly ER/PR +ve which has spread to my lymph nodes under my arm pit (total numbers unknown as yet)I have 3 tumours spanning 6cm. My consultant thinks they have been there over a year. I have accepted the diagnosis and have felt positive until now. The week of my diagnosis I started to get leg pain (upper thighs on both legs), but this disappeared after a week. I mentioned it to my BN but she didn't feel that it was relevant. I have had 2 chemo sessions and have noticed that the pain in my legs is coming back. I spoke to my BN again on Friday and she said that because it was in both legs she wasn't overly concerned as if it was bone mets then it's more likely to just be in one? I can't stop thinking about it now and it's preventing me sleeping. What does bone mets pain feel like? I am finding it hard to describe my pain, and can't work out if it's bone or muscle that hurts! Any advice would be greatly received x