Possible Sternum secondary

Hello, my first post. Dx in 2004, mastectomy, chemo and radiotherapy. two higher end grade 2 tumours. 14/14 nodes affected, nodes had a small amount of spread in tissue. Removed at time of surgery. 3 years on Tamoxfin and then 19 months on Armidex.

Bone scan revealed secondary cancer in L1 of the spine, follow up scan shortly after showed T8 and T10 affected. Had one treatment of radiotherapy for the L1 - (Diagnosed 18th June 2009)

I am now close to panic, I have had pain in right upper side for a good few weeks, but not too worried as I had a missed DVT in my leg that went to lungs (PE’s) so thought it might be that. Pain moved to the centre of chest so went to A&E on advice of NHS direct, they said it was probably a chest infection as my x-ray showed a fuzzy area (I think the fuzzy area is where the clots are) They gave me antibiotics which I finished about a week or so ago. No improvement. Increased discomfort in my sternum, tonight aching in the left rib and right rib beside the sternum.

Phoned my BN and I will see my oncologist next Thursday, had a bone scan follow up for 10th Dec and that can’t be moved forward because I have had such a lot of scans recently with the PE’s and DVT and bone secondaries.

Very close to panic this time. Psychologically I was coping with the spine but the constant feeling cancer in front of me, won’t let ‘put it behind me’. I can’t forget about it. My breast nurse, who has been my rock since 2004 did say the sternum was a common site for secondary breast cancer, she never says anything like that so I have a feeling that maybe she is pessimisic about it.

Feels stupid to say but I feel like giving up but I have since 2004 focused on staying alive for my boys. Two have special needs, 10, 12 and 16 years old now.

I’ve been in limbo since 2004, I knew it would come back, my odds were poor even for the first year and I never got my stamina back. Even worse now, tired all the time and barely coping day to day.

Any ideas how I can get through this dreadful feeling of panic and just try and forget about this horrible feeling in my sternum, even if its for a few minutes as its driving me crazy.

Hi Daffy,

I’m not sure I can help you stop worrying - that seems to be inevitable for us all at least until someone tells us what the problem is and we can move on to some form of treatment. It is the not knowing and having to wait that messes with our heads isn’t it? You don’t mention if you are on any treatment for the secondary bone mets - such as bisphosphonates (zometa or pamidronate or ibandronate and the usual ones). My original diagnosis and it was a poor one was back in 1990 and I had extensive bone mets dx in 2002. I found that the bisphos. took about 3 treatments (4 weekly) and a some radiotherapy to the worst areas before I had relief from the pain, and then it was total relief for around 5 years. This past year the pain has got worse again so I am on regular morphine based pain meds now.

If your onc doesnt mention bisphos on Thursday I would ask about it and hopefully that will help with the pain. Do ask about pain meds as well to help cope. It sounds like you have a busy life with 2 of your lads being special needs - and here’s hoping that you will be around a long while yet for them.

Dawn
xx

Hi Daffy, and Dawn,
I too was diagnosed with both mets in my sternum but also in my pelvis spine and ribs and that was over 10 years ago and I was in great pain for a while. I, like Dawn, have been on Biphosphonates and take morphine evry day plus other pain killers. I have just finished an 8 month course of chemo as well. I have not had one incident of acute pain since April when I was put on new painkillers and started chemo. I am ( fingers crossed) painfree just now. Yes I do get tired and I also know that I must NOT tackle heavy lifting and do as I am told! My children were young too Daffy. I realise you have added problems. But ten years on and Dawn and I are still around to tell the tale. I do remember well the feelings you express so well in your post and can empathise in how you feel just now. It is not an easy thing to cope with but come on here anytime you need a little love and support.
Dawn I haven’t heard from you in a while. Could you post me a PM and let me know how you are and what treatments you are having just now? I as I have said above have recently finished chemo and am having a CT Scan done in a couple of weeks. But I feel much more myself since stopping the chemo and resuming the drugs I had stopped. Hope this continues as it is great to be able to do things again. Love Val XX

Thank you for replies, Dawn and Scottishlass, just reading your posts have calmed me. I know that even if the sternum is involved that its still not the end of the world. I am one of those people that need to know everything and until I do I can’t start to cope again.

I always look at my bones scans, I spotted the first spine met, so didn’t need telling. The last scan I had about 2 months ago, showed many dark spots in the rib cage and arms, pelvis, sternum and I expected to be told that there were spots there but was only told that T8 and T10 were now involved in the spine. They said I had a lot of degenerative disease. I think the mets maybe were not showing up as their true self at the time of that scan, this only came to me last night, when I was thinking about my last scan.

Bone strengthening infusions were mentioned in June but I have not had any and will ask about that on Thursday. I had one treatment of radiotherapy on the spine and taken off Arimdex and put on to Exemestane 25mg.

I do have morphine based painkillers and Amytrippline but haven’t had to take them so far. My oncologist seems to think I should be in more pain, I usually manage with Co-edmol. I do get nerve pain from the spine, bit like Sciatica but that has eased lately. The pain in the front ,Sternum is eased by painkillers, but is more of a pressure all the time. It’s a horrible feeling.

I am pleased I finally joined up here as I do feel more hopeful now. I have read about many people coping with bone mets.

Thank you for sharing everyone.

Hi Daffy, I would really hope you opt to take bone strengtheners…you should notice a huge improvement over a couple of months. Long story so I will try to be brief but I was diagnosed with bone mets when my hip spontaneously fractured in 2003…feel fine now, no pain 6 years later and have new hip. Last snow falls I went crashing down on a pavement, no broken bones, thanks, I’m sure, to bone strengtheners. If you have infusions over tablets the first infusion might make you feel fluey but after this most of us have no side effects…x

Hi Belinda, great to hear that you are pain free. Posts like yours help so much, thank you. I have emailed my breast care nurse and mentioned discussing bone strengthing treatment with my oncologist this Thursday.

I know I was meant to have a infusion back in June and it was very busy at the clinic and didn’t get booked, my BCN did ask if I had had one after my radiotherapy, I think it was meant to be done on the same day. I said no, as it wasn’t mentioned. I should have chased it up but didn’t realise the importance of it until reading about it here.

I am waivering between being paranoid then to I ‘know’ that I have mets in my sternum. I can cope when I have the information, its is the wondering and then trying to convince yourself that you are talking yourself into a diagnosis.

Roll on Thursday I say, although I do think its more of a reasurance appointment. Everyone seems so laid back about the bone mets (apart from me). I have a great team, very caring but things feel different since the mets.

Maybe my paranoia kicking in again. I can see myself whinging and moaning about having to wait unti the 10th Dec for my bone scan and its not their fault that I have had too many close together.

Getting on my own nerves I am! :slight_smile:

Hi. I have joined on here because l am possibly in the same boat. I was diagnosed with invasive lobular breast cancer in May, l had a quarter of my breast removed in June and had radiotherapy until August and started Tamoxifen in August, for 5 years. I have been well until a couple of weeks ago when l started with a very painful right hip, my oncologist decided l should have a full body bone scan, this showed that l had arthritis in the hip, which was good news! but they noted a patch on my sternum and advised further tests as they couldn’t decide if it was inflammation or secondary bone cancer. It’s such a shock when l was just getting back to my normal self. I see my oncologist again this thursday. He said if the test l had done this week was still inconclusive l would have to have further tests. I do try to be positive, l keep telling myself it’s probably something else, l can’t believe i would have developed secondaries after only a few months and while l am on Tamoxifen. I have also had the bone strenght treatment for the last 3 years for osteoporosis. What worries me is that if it is secondaries would l need chemo, my cardiologist advised me against chemo last time as it would have a bad effect on my heart condition and my asthma. Does anyone know if chemo is recommended for bone secondaries. Maybe l am jumping the gun a bit, l haven’t had it confirmed yet, but l can’t think what else can be on the sternum. Any advice regarding this would be most welcome from you lovely ladies. You all helped me in the past, when l was diagnosed, it really helped me to cope with it all.
Barbara

Hope all goes well for Thurs Daffy.
Barbara I only started my first chemo in 2008. Was diagnosed, with bone mets, in 2003 and had quite a while with Tamoxifen and nearly 3 years with Arimidex…Aromasin only worked for a few months. Hopefully you won’t have a secondaries diagnosis but if you did it would probably mean a change in hormonal treatment…xx

Thanks for the reply Belinda. all words of comfort mean so such to me at the moment, l so appreciate you replying to me and telling me of your experiences, l had a phone call tonight from my oncologist, he say’s he wants to see me tomorrrow instead of thursday, l am so pleased, l saw my local g.p this evening and he checked out all my tests, he said he can’t believe it could be a secondary because my tests from just over a month ago didn’t show anything, l am keeping my fingers crossed he’s right. I have very bad bones because l have osteoporosis, l am hoping it’s just that. I live in Spain but they really look after me well here. I wish you all the very very best with what you are going through, thank you again for your reply. xxxx

Hi Belinda, just had to let you know how l got on with my Oncologist,
he is quite convinced l DO NOT have secondary bone cancer in my sternum. He actually think’s it’s Teitze’s syndrome and this is why the ‘hot spot’ showed up on my bone scan. What a relief, l am so happy. I am having what they call here a TAC scan (i think it’s the same as a CAT scan in the U.K) and he reckons that will confirm his diagnosis.
I wish l could pass my good luck onto everyone on here, wouldn’t that be wonderful.
Barbara x

My son had teitzes syndrome 6 years ago aged 10 it is very painful but he made a full recovery within 6 months,his was centred on his sternum and ribs on both sides. Goodluck

Barbara that’s great news! Congratulations and get back on with getting your life back on track
Jacquie x

Hi Barbara! That’s just fabulous news…I’m really, really pleased for you…x

Thanks for your good wishes ladies, as you can imagine, l was so pleased to hear i didn’t have secondary cancer in my sternum.
Yes, kernodaisy, tietze’s syndrome is a painful condition and l know it can take some time to clear up, i have some very good painkillers now, which are helping a lot. I have a lot of degeneration in all my bones so i nearly always have pain somewhere or another, it’s still better than breast cancer though!
I thought l would mention that l take Maitake mushroom d fraction, it stops cancer cells multiplying, so l would have been very dissappointed if it had turned out to be secondary cancer.
Good luck to all of you ladies still fighting this awful disease.
Barbara xx

I’m really pleased with the results you got BarbaraAnne, I hope you recover quickly.

I know no more today then I did yesterday, the appointment just told me what my BCN had already told me. My consultant was off sick, she is much more upfront and will give her opinion on whats probably going on.

The doctor I saw thinks there is a fairly good chance its mets to the sternum but he can’t rule out muscular problems until the scan results. I have to wait until the 10th Dec, there is no way it can be moved forward as I have exceeded the radioactive injection guidelines. I’m just going to have to wait.

I did ask about the bone strengthening drug but didn’t very far with it. The Dr said depending on the results of the scan they will consider either radiotherapy or the bone strengthen drug. He said one has to consider the side effects of that drug as it can cause kidney problems. I don’t know enough about the drug to argue. I do know that the consultant is very liberal with drug treatments so again will bring it up with her.

Thank you for the kind wishes. I really appreciate it.

Hi Daffy.

Just to ask if you are o.k you must be so fed up with all this waiting, the not knowing is so awful.
I still haven’t had my other scan, l had to cancel because something else came up, i go next wednesday now,the 9th, i am not too worried as the Oncologist was certain it wasn’t cancer so anything else will be treatable.
I do so wish you have a different diagnosis, and it isn’t cancer secondaries after all.
I have been on the bone strengthening tablets for years now, i previously took a tablet once a week but i now have a monthly tablet and i have to say i don’t have any side effects at all. I always take it will at least a litre of water, i think that helps.
All the best, l am keeping my fingers crossed for you, let me know how you get on.
Barbara xxxxx

Hi BarbaraAnn, how lovely of you to think of me. I doing alright thanks. I’ve calmed down quite a bit now. Probably as the feeling of pressure in the chest is not so great anymore and I can forget about it for a while. I know that pain decrease doesn’t really mean much as my spine mets stopped hurting for a while before diagnosis but I am resigned to waiting now, I have a very good BCN and she will phone me the next day after the scan, with results.

I wish you well with your scan, I know you have a very good chance of good results but it is still stressful and I am thinking of you. Will send you calming thoughts on the 9th and you can do the same for me on the 10th. :slight_smile:

best wishes xxx

I had my bone scan on the 10th Dec and a BCN gave me a call this morning as arranged. My nurse was not in today so didn’t as much information and have been left confused and starting to get frustrated with the lack of information given. I understood that the scan hadn’t been reported on and it was compared with my last bone scan - 18th Oct, but the BCN confirmed increased uptake in the lower right area of the ribs. After questioning her for ages, she said it was a bone met/mets, they saw it last time but it has increased. As the scan has not been reported on there was very little detail.

This is twice now that I have not been told about a Met, in my spine I was told L1 and had radiotherapy, had a follow up scan on the 18th Oct and was told that also had Mets in T8 and T10 which had been seen on the first scan (18th June) with the L1 diagnosis. I think they were small and not really well defined until the next scan.

I have been given a appointment with the oncologist’s reg for next Thursday. I did ask for copies of all my scan reports for the last year, which will be ready for me on Thursday as I feel like informationn is being omitted. I’m struggling with this as the team know I like to know all the results.

So I am having to deal with a new diagnosis of rib met or mets, that isn’t really new and I could have started to come to terms with it if given the results with the T8 and T10.

Barbara, I was thinking of you on the 9th. I hope every thing went to plan.

Paula xxx

Hi Paula, don’t know if this info helps but just to let you know I had a 3 year gap between bone scans as I had no detectable active cancer during that time…my last bone scan, like yours, showed a couple of areas of involvement that were much too small to be picked up the first time around. x.

Thank you taking the time to reply Belinda. I do understand that some Mets are too small to pick up but these mets had been spotted but I wasn’t told. The T8 and other T region was also visable on the 18th June when I was diagnosed with bone secondaries, they were only small but they were noted but it was only after the bone scan on the 18th Oct that I was told that they had already been spotted on the bone scan and they had first been picked up on a CT that I had in June, before the L1 bone scan.

I have never had a complaint about my team, they have been fantastic but when I was talking yesterday it was clear the the rib mets had been visable on my previous scan on the 18th Oct, I have been in a pain and had a lot of anxiety waiting for the scan on the 10th Dec - there was no need for the anxiety of waiting as they already knew they were there.

I’m struggling with the blaise attitude that is not immediatly life threatening comments if I raise my concerns. So does that mean I shouldn’t be concerned that they are there? I’m confused about it.

I don’t know if what I have just typed is very clear, I am getting really quite angry that my team knew I had rib mets, I contacted them because I was in pain in the rib sternum area and still they wasn’t mentioned.

Can’t get my head around it. I will ask some questions this coming Thursday and hopefully the copies of the scan reports will be useful for me to now exactly where and how many mets I have.

best wishes xxx