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Aggressive (?) Bone mets

24 REPLIES 24
belinda
Member

Re: Aggressive (?) Bone mets

Dear budster I'm so sorry to hear your news. I'm a mum too and my greatest wish is that my daughter, unlike me, will never develop breast cancer. I'm posting to tell you I was diagnosed with breast cancer when my hip fractured ten years ago. I've had good responses to treatments and my breast cancer has been very treatable despite my being stage 4 from the very beginning. Do keep in touch, my thoughts, my good wishes to both of you..x

pollym
Member

Re: Aggressive (?) Bone mets

Hi budster, I just wanted to say that i am so sorry to hear about your daughter. I am in the position of awaiting further news re a possible bone met in my hip. I am therefore no expert. However, i have used this site for years and have always been touched by the helpfulness, concern and expertise of the ladies here. I'm sure someone will get back to you soon who has far more expertise and experience than me. I know you'd prefer not to have to but you've found a unique and incredibly supportive bunch of people. Big hug to you. Xx

Lucy_BCC
Member

Re: Aggressive (?) Bone mets

Hi Budster
I am sorry to read that your daughter has had this news, I am sure you will find lots of support here and in addition please do feel free to call our helpliners to talk things through, lines are open today 9-5 and Sat 10-2 ( weekdays 9-5) on 0808 800 6000

You may find the following link to further information and support about secondary breast cancer helpful, there is a link on the page to secondary bone cancer information :

https://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_ca...

Take care
Lucy BCC

budster
Member

Re: Aggressive (?) Bone mets

My Daughter was diagnosed with breast cancer in Feb. 2012, she had a mastectomy then had chemo and radiotherapy, she finished her treatment in oct 2012, and  in Feb. 2013 found out she was pregnant, she gave birth to a beautiful baby  girl in sept, and a couple of week later went to her gp because she was getting pain in her shoulder, the same side of her mastectomy, but was told it was were she was lifting the babies car seat in and out of the car, after 7 weeks they finally sent her for a bone scan and on the 2nd Jan she was diagnosed with bone cancer, I am at a loss what to do, because it has come back so quick is this more aggressive??, there are so many questions I want to ask but do not want to upset my daughter, she is so brave and she is just 30 years old and has 3 young children, where can I get the answers I so desperately need.

lucinda
Member

Re: Aggressive (?) Bone mets

Yes I was a bit confused too! Westie I was dx in May 2009 with exstensive bone mets but no prior bc dx so that came as quite a shock. The pain you are experiencing could be entirely innocent, I had spent a fortune on physio before i went to my gp in desperation when it became too painful to walk and because I also mentioned a pain in my armpit he sent me to bc clinic. As Dawn says because you have a prior bc dx it would be wise to get checked out at hospital and I would insist your gp does this. Hopefully it will turn out to be something other than cancer related, lots of my aches and pains are arthritis rather than bone mets. Good luck and keep us informed.

Mildred1602
Member

Re: Aggressive (?) Bone mets

Thanks Dawn!

Bit confusing......

Ingrid

dawnhc
Member

Re: Aggressive (?) Bone mets

Hi Ingrid, (and anyone else reading this thread)

 

It is only the last two posts that are current - there is a two year gap between those and the posts made earlier!

 

Dawn

Mildred1602
Member

Re: Aggressive (?) Bone mets

Jacqui
Can I suggest you stop worrying about Xmas? There's still 7 weeks to go & I think time to get that 2nd opinion sorted. It's your life, why delay?
Ingrid
dawnhc
Member

Re: Pain in shoulder for a few months

Westy congrats on finding the one thread here that you needed!! I think that the first thing you need to do is to ask your GP to refer you back to the hospital that treated you for your breast cancer and get some scans done. I have heard so many tales like yours and am quite shocked how often women go untreated when they have a history of bc. Does the physio you are going to see in a couple of weeks know that you have had breast cancer? When I was diagnosed with bone secondaries in 2002 I was really surprised that it had spread to so many of my bones with hardly any warning even in retrospect. My first warning was sciatica one day that was so bad I couldn't bear to put my foot to the floor. In the couple of years leading up to it I had been having a lot of trouble with lymph nodes swelling up around my collarbone and neck/jawline which I suppose did suggest something might be going on so when I spoke to my oncologist about the sciatica his suspicions were immediately aroused and I had a bone scan done which showed I had extensive bone mets.

 

Reading this back sounds awful but I really think you must get this checked out just in case. It could be that there is an innocent explanation for your aches and pains but the fact that you have come here to ask your questions tells me that you have your suspicions too. Do keep in touch with us all here - and if the worst is confirmed you fill find a lot of support amongs the 'girls' here.

 

Dawn

xx

westy
Member

Pain in shoulder for a few months

hi I have breast cancer in 2007 had mastectomy, chemo and radion, I have been feeling good for a couple of years but over the last year have had a lot of bad back pain on and of, I have now had pain in shoulder and nect for 3 month, have been to doc and got pain killers but nothing seems to work, will be going to physio is a couple of weeks, should I be getting an x ray in case it is cancer or am i being over cautious.

cheers Westy

 

dawnhc
Member

Re: Aggressive (?) Bone mets

Rozita I would echo what Jacqui has said. I do find it so disturbing when GPs dismiss our concerns about any aches & pains in our bodies. How many times I have heard people say their GP wasn't concerned, only later for them to be dx with 2ndary bc. Of course many many times it won't be but I would still be happier to hear GPs being more proactive in getting another opinion. I think if a new pain doesn't settle in 2-3 weeks then we should get it checked out.

Dawn
xx

jacqui37
Member

Re: Aggressive (?) Bone mets

Hi Rozita,

Yes thank you, tho forum is a great support .

My Onc said that it is quite an unusual place to get it, so hopefully yours won't be BC.

Initially I thought I had some muscle pain in my upper arm and it just hurt when I did certain things, like the post-op exercises that I was still doing, or getting things out of my boot etc. I wasn't too worried and assumed it was possibly from my lymph node surgery, It gradually got worse, but for the longest time it was mostly my upper arm that was painful, not my shoulder at all. I had mentioned it to breast clinic at my first year check up, to my GP and to my plastic surgeon, who all said that they thought it was related to either my surgery or rads, I wasn't at all worried that it might be BC. I only contacted the BCN when the pain moved into my shoulder too and changing gear became increasingly difficult about 6 weeks ago, but it still didn't occur to me that it was BC ... I was still taking tamoxifen.

I became worried once the pain became constant and not just when I moved my arm, and when paracetemol and ibuprofen did nothing to shift it.

I was not proactive and took every specialist at their word. If you are at all worried call your BCN and ask to see the breast surgeon again ... just by-pass the GP, that is what I had to do as he didn't really take this very seriously. Once I did see the breast surgeon I found myself having x-ray and bloods on that day, bone scan within a couple of weeks and then suddenly everything started moving very quickly and I have gone from thinking I had a bit of pain from radiotherapy and taking ibuprofen, to having a big hole in my shoulder and taking liquid morphine .... it's all a bit mad! But if someone had sent me for a bone scan in August I wouldn't have to tell my kids on Christmas Eve 😞

Sorry that got really long ... but call the BCN if you have concerns love. btw, I haven't really had headaches, but have quite a lot of referred pain in my neck now as well as my arm and shoulder.

Have a good Christmas,

Jacqui xxx

rozita
Member

Re: Aggressive (?) Bone mets

Hi jaqui hope your feeling a bit stinger now with these comments. I just wondered how you found your mets. I have been having trouble with my shoulder for months n giving me headaches but my go says it's not breast cancer related. I'm hoping it's more my lymphodemia but I am worried when you said you had it in your shoulder I just wondered what your symptoms were. Have a good Xmas xxx rozita

jacqui37
Member

Re: Aggressive (?) Bone mets

Thanks Granny.
This is still very new to me - just wednesday, so I hadn't ever thought about benefits. We have been planning to get an automatic though. x

GrannyScouse
Member

Re: Aggressive (?) Bone mets

Hi jacqui37

So sorry to hear about your bone mets. There are many ladies on here much more knowledgeable than me, so please take note of their recommendations.

As for me, I was dx with bone mets at original dx so I've lived with it since 2005. I've had relatively few problems, although my onc said from the outset that chemo wasn't particularly good on bones, so I've had the occasional radiotherapy in trouble areas, which have worked very well for me.

You say you can't drive at the mo. Here's another area to consider. Have you applied for DLA? If so (and I believe you'd be granted the higher rate which enables you to Motability) then an automatic drive would undoubtedly help you. It's my left side which affects me most so an automatic drive is essential for me.

Sorry if this all sounds airy-fairy but it's very late and I wish you all the very best in the future ...

Good luck to us all.
xx

jacqui37
Member

Re: Aggressive (?) Bone mets

Thank you so much.
I will certainly research more before my next appointment and take along your recommendations to the ONC. I had already decided to seek a second opinion and will get onto that straight after Christmas.
Jacqui

Lemongrove
Member

Re: Aggressive (?) Bone mets

This is what I would do under the same circumstances:
(1) I would ask my GP to refer me to an Oncologist who is up for the challenge (either Charing Cross Hospital, the Royal Marsden, Mount Vernon, Barts, or St Mary's).
(2) With only one met, I would probably fall into the category of oligometastatic, and so I would be pushing for treatment with curative intent. This does not mean cure in the traditional sense, but there is quite a bit of evidence that this approach can be very beneficial, in terms of survival (try googling the terms oligometastatic and Anderson Cancer Centre - which is part of the University of Texas).
(3)I would be pushing for radiotherapy at a curative dose (most radiotherapy is the given at a palliative dose to reduce the risk of damaging healthy tissue). If you go onto the Cancer Research Site there are links to info about radiotherapy, and it say's that rads are a very under-rated treatment, and in fact the only treatment capable of completely destroying cancer (even more so than chemo or endocrine therapy).
(4) If I was told that it was too risky to give conventional rads at a curative dose to the shoulder, I would ask for a referral to an expert in Cybeknife stereotactic radiotherapy (the Royal Marsden, Barts and Mount Vernon have Cyberknife), as Cyberknife is so super accurate it can treat tricky areas at a curative dose.
Good luck, and hope this info gives you a few ideas to consider.

jacqui37
Member

Re: Aggressive (?) Bone mets

Thank you all. I am feeling a bit more positive this evening.
My onc did give me a prescription for Letrozole, so I started that today. SHe has also arranged for a palliative blast of rads, which will hopefully be between Christmas and new year as my arm movement is severely restricted because of the pain and I am not able to drive at the moment.
I think that once I have told my sons I'll feel better. I am just a bit wound up about that right now. I know how upset they were when I told them about my primary, but it was much easier for me to present it to them in positive way, because I was very positive first time around.
Thanks again ... I expect I'll get to know you all in the coming months 🙂

Have a wonderful Christmas.

Jacqui x

lizcat
Member

Re: Aggressive (?) Bone mets

Hi Jacqui,

Sorry you've had to be in this position and have to tell family, especially at this time of year. Try to be positive even if your onc isn't - easier said than done I know. Why not see about a 2nd opinion after Xmas?? My onc has always been positive yet realistic at the same time.

Compared to Dawn and Belinda, I am still a newbie but I was diagnosed with bone mets in spine and ribs along with primary diagnosis in July 07 and am still here, relatively fit and well. I had chemo, mx, anc and rads initially and needed a one-off rads blast at the start of this year. My treatment for the last 3+ yrs has been zoladex, arimidex(AI) and zometa for bone strengthening and I will remain on these drugs while they still keep me as stable as possible. I retired from work early on ill-health grounds but still manage to live a great new lifestyle with trips away and lunching with friends.

Hope this helps you a bit and do look on and join the bone mets thread. Wishing you, and everyone else, a less scary and better Xmas and 2012.

Liz

Magda
Member

Re: Aggressive (?) Bone mets

Hi jacqui
Yes What s**t news for you but like the other ladies have said I shouldn't think that there are alternative options. I am taking aromatise inhibitors and bone strengthening drugs. I was dx in Jan this year with BC nd then mets to hip iaround may time half way through chemo, I think they were there ll along.
Telling your kids is so hard but hopefully if they see you handling it ok then that might dictate how they handle it. So hard being strong I know!
Get a second opinion
X

Guest user
Not applicable

Re: Aggressive (?) Bone mets

Hi Jacqui

Sorry to hear you are joining us! Hopefully we can give you some hope! I too am shocked that the oncologist was so pessimistic! I have bone mets (and liver, lungs and brain) my oncologist has also been there with the next treatment, and even with my brain mets he is still talking about the future! You mention that you are on Tamoxifen, so must be hormone positive, many ladies on here have had their BC controlled by hormones for many years, you could be changed to an AI or chemo tablets ( I take xeloda with few problems!) I guess you should also be on bisphosphonates to strengthen your bones.

I like Belinda had extensive bone mets in my hip and thigh and had a proximal femur replacement! Can you asked to be referred to a orthopaedic hospital, they may be able to give you surgery to help, or even remove the whole area of cancer!

It will be hard telling your family,particularly at Christmas, maybe tell them that the cancer has returned, but it can be treated for many years!

I hope once you get your treatment plan sorted you will feel more positive, if you oncologist is not proactive and pessimistic...get a new one, we all need hope!!!

Take care and do keep us informed of how you're getting on x

dawnhc
Member

Re: Aggressive (?) Bone mets

Hi jacqui,

It is specially tough having to cope with this sort of news with Christmas happening all around you - and not feeling you want to be part of it all. I am a bit concerned at an onc that is so pessimistic and if he/she holds to this I would certainly be seeking a second opinion. I remember when I was originally diagnosed (primary) in 1990 that my bc was pretty aggressive but successfully treated. Then 5 years later recurring again - then the big gun stuff was rolled out - from then on it was every couple of years it came back. This was all in the days before herceptin and I proved to be her2 positive. I think what I am saying is that you may have had what they think is aggressive treatment already - but it just may not have been the best one for you. There are plenty of other chemos and as nicky above has said - other hormonal treatments. I have lived with very extensive bone mets for nearly 12 years now successfully being treated with bisphosphonates & hereceptin. I hope all of us girls on the bone mets thread will be able to give you hope- especially people like belinda, scottishlass(val) and a few others who have been dx some years now with bone mets.

Dawn
xx

belinda
Member

Re: Aggressive (?) Bone mets

Hi Jacqui, I'm sorry to hear your news but if it helps, my experience. I was diagnosed stage 4 from the very beginning, bone mets, 5 days before Christmas in 2003. My hip spotaneously fractured, I had no pain (until it fractured) but I had developed a limp...anyway I had a hip replacement and 8 years on I'm pain free and I feel well. I've been on Capecitabine, constant 3 weekly cycles, since April 2008 and it's been a kind tolerable chemo. I will stay on the chemo until it's no longer working. But this is nothing compared to others, particularly our Capecitabine queen on the Xeloda thread. I will bump the thread up for you. Hope this helps..take care..xx

nicky08
Community Champion

Re: Aggressive (?) Bone mets

Hi Jacqui37
Sorry that you have to join us ladies with secondaries and, in my case, bone mets. It is a very scary and upsetting time, as we all know but I think we have all found that once our treatment plan is in place we adjust more easily to this new 'normal'. I'm not saying we accept it but we all seem to be able to adapt to it and get hope that the treatments are knocking the secondaries on the head. I guess from being on Tamoxifen you are hormone positive? This sometimes stops working, or even didn't work in the 1st place with some women. For me it definitely stopped working which is when my mets were diagnosed. However there are other hormone treatments (aromatase inhibitors) available and, for me, they are working really well. You will almost certainly be put on bisphosphonates which strengthen the bones and possibly have a shot of rads if you are in a lot of pain. Chemo could be on the cards but I expect your oncologist will discuss all this with you. The horrible thing of course is telling family and friends, especially your children, and being Christmas won't help. However, have a read of the 'bone mets, please join in' thread on here, you will see a lot of us boney ladies doing really well years after diagnosis. Some even have had bone mets from initial, primary diagnosis so it;'s not unusual for them to be present at the start, or undiagnosed from the start. Good luck and do ask any questions, we are a friendly bunch with a lot of experiences that we can use to help you.
Nicky x

jacqui37
Member

Aggressive (?) Bone mets

Hi
Sadly yesterday I got the news that I least wanted - the pain I am having in my shoulder is caused by a large hole in my bone caused by my breast cancer. I received this news 2 years to the day since my first mammogram ... pretty sh*t timing on both occasions.
It is a single lesion which is good, but apparently the fact that is back so quickly is bad ... I'm still on Tamoxifen and rads only finished on 22 October last year.
Oncologist was quite gloomy and seemed not to think that it was worth trying more chemo as I already had the big guns last year (FEC-T).
I have another app't in early Jan.
What do you think bone mets ladies? Should I try chemo? Maybe Capcetibine?
Thanks
Jacqui
Dreading telling my sons tomorrow 😞