Hi everyone,
This is my first post although I’ve been logging onto this site for quite a while. I just want to know if anyone has been dx with bone mets in the skull; I can’t remember hearing of anyone with this. Last week I had brain scan (had lots of headaches) and my onc said that brain was OK but mets in skull - I wasn’t surprised as I’ve had quite a of of pain above my eyes and side of head even when just washing my face. Been on capecitabine for 11 months due to bone mets in spine and pelvis (also have zometa 3 weekly) but when I ask onc whether it’s working due to spread she just says she can’t tell and, as I feel, well she doesn’t want to change anything. I’d appreciate any info - Ta!
Hi tinkle
Sorry to hear you’ve been having skull-met pain, and hope some pain meds might help. I’ve been on continuous capecitabine, exemestane & Bondronat since my bone & liver mets dx in 2003, and very lucky to be relatively stable for so long. My bone mets are fairly extensive, and include skull mets at the top of my head – it is definitely weird to think of them sitting there so close to my brain, but I’ve been very lucky not to have had any pain from mine. I know a couple of others who post here also have skull mets, and hope they see your post.
I do think the position of our bone mets determines their impact on us, including bone/nerve pain or mobility problems. I have had several episodes of new bone pain (pelvis, ribs, sacrum) over the years – each time, the pain lasted a couple of weeks, after which it slowly disappeared. Bone scans showed there had been some progression where I had the pain, so all I can think is that the Bondronat “kicked in” and somehow stablised the new mets. Maybe time for a change of bisphosphonate?
I do hope that the pain you’ve been experiencing is just a “glitch”, and that your treatments sort it out quickly – please keep in touch with us – you’ll find a lot of support here.
Marilyn x
Thanks for that Marilyn, my onc is very good but her time is so limited that I don’t always feel that I can ask all that I want to. Each time I have a CT she tells me that there’s no change but I feel that sometimes she works on a ‘need to know’ basis. Last year between scans the practice nurse sent me to A+E due to a pain down my leg and I was told that the secondaries had spread to my hips, but at the next scan my onc said that there was no change which was obviously not true. Normally I’m a very positive person but recently I’m beginning to get a bit negative about things - people keep telling me well I look and I feel really bad wanting to tell them that they can’t see my inside!!!
Hi tinkle,
I hope joining the forum will bring you some reassurance and help. I have had extensive bone mets since 2002 and that included my skull. On the first bone scans it appears like black circles all over my head. In fact, though I say I had no symptoms prior to dx in 2002 of the 2ndaries I had been experience a tenderness all over my scalp, especially going to bed at night and resting on a pillow - it got so sore. A few years later I was getting quite a lot of pain in my head and headaches (2 different things and hard to explain) but my onc was concerned and did an MRI brain scan - no problems with the brain but the damage from the mets to my skull showed up. I was told I could have some rads to my skull but I preferred not to. The pain went after a few weeks.
Have you also been on the zometa for 11 mths? I am not on any chemo now although at first dx of the mets I also had a lot of lymph node involvement and did have capecitabine, but had too many side-effects. I then had a course of navelbine which got rid of the lymph node swellings, but they returned when I finished the chemo. It was then they found I was her2 positive so have been on herceptin since 2004.
I don’t know if any of this is of help to you. If you want to ask any more questions then please do.
Dawn
xx
Hi Dawn,
Your skull pain sounds just like mine!! When I go to bed I too have pain when my head is on the pillow - I just try to get in a comfortable position and generally am able to get enough sleep.
When I was dx with bone mets in spine 18 months ago I was devastated but I suppose it was inevitable that they would appear at sometime as 3rd dx I had 15/16 nodes+. I now have them in pelvis which is really the only area that gives me trouble now and again - (having rads tomorrow on this bit!) As usual I shall battle on and not let this C beat me just yet!! I’m lucky in that I can lead an almost normal life although, I think like many on these forums, I do have the odd ‘down day’ which is only natural. My bc nurse hasn’t contacted me since before I had mx in 2008 so I’ve given up on her!
I think you’re a real inspiration Dawn so thanks so much for your post and take care.
Tinkle
Hi again Dawn,
Sorry but I didn’t answer your question in my last post! I’ve been on zometa for 15 months (was on bondronate for 2 months before but didn’t like having to sit or stand for 1 hour afterwards!) I have the infusion 3 weekly when I get my tablets. My onc has mentioned the chemo which you had (navelbitine?) and said that she may put me on this along side the capecitabine but at moment she doesn’t want to change anything as I feel well although I do worry as I’m getting more mets. (had FEC/Tax 2007 after ax clearance).
tinkle
Hello Tinkle,
I have three Breast Cancer metastasis in the bone (the right temporal region of my skull), and this does not cause any pain. The other thing in my case, is that I don’t appear to have mets anywhere else, so the medical team caring for me are attempting curative treatment (by curative they mean keeping me alive long enough that I die of something other than cancer).
Don’t worry about the proximity of mets to your brain - spread doesn’t work like that.
As far as treatment is concerned, the only problem with skull mets is that conventional radiotherapy can only be given at palliative doses, because to give it at a curative dose might damage surrounding tissue/your brain.
I have had 6 lots of FEC 75, 25 sessions of conventional radiotherapy to the mastectomy site, Lymph Nodes and Neck, and am currently on Bisphosphonates and Letrozole (as my BC is oestrogen receptive. The mets in my skull have shrunk, so my medical team are just about to start Cyberknife treatment to finish them off. I don’t know if your Doctor would refer you for this, because you have mets elsewhere, and unfortunately, Cyberknife is mainly available privately (because most PCT’s refuse to fund it). However, if your Doctor does feel specialist radiotherapy could be an option, then you might consider Gamma-knife (which most PCT’s do now fund). While Gamma-knife is mainly used for brain tumours, it can be used on the skull in a curative way (if your Doctor disputes this, ask for a referral to a Gamma-knife specialist who will confirm what I have told you). Gamma-Knife is super precise, and can therefore be used at a curative dose.
Anyway hope this is of use. PM me if your require more info.
Hi Dawn and Lemongrove,
Thanks for all your info, it makes me feel very ignorant even though it’s 13 years since my first dx !! In the last 2 weeks I’ve had bone scan. MRI and CT. Went for results Weds and took my daughter as she works in oncology (but unfortunately over 100 miles away) and is able to remember what the onc has said, unlike myself!!
Anyway, CT was OK and cyst that had ‘changed’ at last scan may now have shrunk! Bone scan showed extensive spread of mets right up spine and also into my left arm but onc still doesn’t want to change chemo(capecitabine)at moment. MRI showed mets now in cerebral fluid at front of head but onc repeated what you told me re. barrier between skull and brain. I wonder if the problem with my eyesight (double vision on left side where I get most pain) could be connected to the mets over my eye and in temple - I see opthalmic cons Weds so may know more then - I can’t drive until it’s resolved and it’ driving me mad!!! (sorry about the pun!)
Well, thanks for all your advice, it’s much appreciated - I find more advice/info here than anywhere else.
Just been told have skull mets so above info very useful ladies… Mine have made my left side of face numb! But am now armed with questions to ask after MRI to skull and neck to see what action s needed. Best wishes to you all x
Hi all
I have just found this thread after yesterday we were told that my mum, who has stage 4 breast cancer, has now got bone mets in her skull.
She was originally dx around 3 years ago, HER2 positive breast cancer in her left breast. She underwent an initial course of chemo/radiotherapy and a subsequent op to remove the affected breast tissue (as the tumour had completely gone by end of chemo). However it had spread into her lymph nodes under her arm so she underwent further ops and eventually had a double mastectomy. This didnt work however and near the end of last year she found that it had spread into her lymph nodes in her neck. A follow up CT scan identified a lesion in her spine and one of her vertebrae had collapsed but oddly she was getting no pain from this.
She was offered chemo at the time but my mum declined. She had opted to try some alternative therapies to treat her cancer and has therefore been visiting nutrionists etc. About 10 weeks ago she began to get pain in her groin and has been visiting the docs/physiotherapists to try and heal this however two weeks ago she had a blood test which identified that she was hypercalcaemic and went into hospital. At the same time they x-rayed her groin area and identified that the issue was actually a fractured hip - caused by cancer spread. We have been told she cannot put any weight on the hip as it is currently at risk of breaking through her pelvis.
On friday she was admitted to hospital as she was suffering with blurry vision in her right eye over the last couple of days and has also lost a lot of weight and the MRI/CT scan results came back yesterday. She has bone mets in the right side of her skull. I wasn’t present when the doctor informed her, but apparently the bone has disintegrated and it has begun to impact the membrane and some nerves which is why she is suffering with the vision issues.
I am visiting today to see the doctor and need to know what the best questions are to ask - I have written down some of the treatments you have talked about to ask him and actually reading this thread has made me feel more positive. We were certain it was a death sentence but these posts have made me see we might be able to battle this. I know the last posts were a couple of years ago but I would really appreciate if anyone can let me know how their treatments went and how successful they were. I cant lose my mum :(
Thank you
Charlotte
I have mets on the top of my skull . At present I am not having any symptoms and am on ee . I found mets after having pain down my leg as I had a fractured hip . I also have mets in ribs and shoulder .
Hello Chrissielv
Welcome to the forum sorry you have found yourself here but you will find ladies in the same position as yourself. Many ladies post on the bone mets thread it is where most of the activity for information concerning bones.
I have been on E/E 16 months but now I am on Capecitabine. I have bone mets sacrum(spine) ribs pelvis femurs and tibia 6 bone mets. I do have a friend who has a met in the skull and has not had trouble with it now for 3 1/2 years. It must be a worry to have it in such a sensitive place. Look at the old posts on this thread but do not let it upset you.
Hoping to see you on the Bone Mets Love and hugs marirose xxx
I just had my bone scan back and it said they found prominent activity in my scull a and spine. The rest of my joints have arthritis . I’m just wondering if this is how mets are described as I sacked my oncologist!
Hi Everyone I am new to this site andhave only today learned that there is even such a thing as skull mets. Learned today from my onc that I do have them. Will learnmore Friday after PET scan. I am shaken and so frightened. My hurt on both sides just in back of my ears especially when I lay down. Headaches so badly that I vomit from pain.
Hi. Dalton,
so sorry you have this worry and pain. i have bone and liver mets, but so far…no skull mets so not really able to offer much…but just wanted to welcome you to the thread/forum.
if you read all the previous posts… as I have just done, there seems to be some reassuring advice in some of them…it seems thst they( apart from the pain which must be awful) are often not immediately life threatening and that the pain often settles down as they heal xx
this forum is full of lovely supportive ladies who may have advice and information for you…do please check in on the bone mets thread, as this is where you will find a lot of them…very best of luck for the scans…please come back and let us know how things go xx
we are all here for each other,
Hugs,Moijan???
Hi dalton im new too so i hope the date is jan this year lol. Ive been replying to posts that are 6 months old. I have bc and bone mets everywhere head to toe. In my skull its on the right hand side but to be honest ive only just started having problems. Headaches and jaw pain and numbness. Im due a mri scan on my liver & head. My onc leaves things alone unless they are causing a problem. I
Once you’ve had your scan they will know how to treat it. Ive heard some people have had radiotherapy for the pain in head mets. Ive had a lot of radiotherapy for pain relief and it woks on me. I hope results go well. Keep us posted. Sending a hug sue x
Hi
My mum has recently been diagnosed with widespread bone met which is in her skull as well as various other places. She has also got mets in her liver, adrenal and possible skin recurrence just at the edge of her armpit where the original breast cancer was. She had her original mastectomy in 2002 and had a mastectomy, radiotherapy and Tamoxifen. She has been struggling for the last year with pain and was advised that she had arthritis. Following a fractured femur they have now realised that all this is going on. They have started her on Letrozole and Denusomab for the bones. I just feel that every time we speak to someone they are just really vague with everything that is going and don’t seem to answer any questions. Has anybody else found this?
Ollie, sorry to hear about your mum but you are both very welcome here.
I have skin and bone mets (sounds daft when put like that) and i post on the cutaneous mets site and the bone mets site, as well as many others. I have found that there arent many of us who have skin mets and it seems to be a bit of a rarity…not many medical people seem to have heard of it or know very little about it. Mine was misdiagnosed for ages as a sebaceous cyst!! It may be worth a read back on the skin mets site as you may find tips and useful info relevant to your mum.I think Drs are vague and dont like answering questions directly simply because they dont have the answers. Everyones cancer is different and responds in different ways so what is a right answer for one person will be totally wrong for another. All you can do is really push to get your questions answered and dont be fobbed off. If you are unhappy with something, keep pressing until you are satisfied. Dont think you are being a nuisance or being awkward. Your mum knows her own body better than anyone. keep posting and let us know how you get on. x
Ollie, sorry to hear about your mum but you are both very welcome here.
I have skin and bone mets (sounds daft when put like that) and i post on the cutaneous mets site and the bone mets site, as well as many others. I have found that there arent many of us who have skin mets and it seems to be a bit of a rarity…not many medical people seem to have heard of it or know very little about it. Mine was misdiagnosed for ages as a sebaceous cyst!! It may be worth a read back on the skin mets site as you may find tips and useful info relevant to your mum.I think Drs are vague and dont like answering questions directly simply because they dont have the answers. Everyones cancer is different and responds in different ways so what is a right answer for one person will be totally wrong for another. All you can do is really push to get your questions answered and dont be fobbed off. If you are unhappy with something, keep pressing until you are satisfied. Dont think you are being a nuisance or being awkward. Your mum knows her own body better than anyone. keep posting and let us know how you get on. XX