Original dx of BC in June 2000 - lumpectomy, CMF chemo, rads, 5 years Tamoxifen and 2 years Zoladex.
Was dx with secondaries in August 2007 at the age of 42 pre-menopausal- left hip, pelvis, lumbar region with a spot on rib. Started 4-weekly Zometa and back on Tamoxifen. Had rads to left hip and base of spine.
Had next bone scan in March/April 2008, spread to right hip and 2 spots on upper spine.
Had ovaries out in April 2008 and swapped to Arimidex.
Had bad shoulder pain a couple of months ago - MRI to check it out - had it confirmed yesterday that it is in ball in shoulder - rads being arranged.
Looking at the bone scans, there is a possibility that it was already there in March/April 2008.
I know that everyone is different, but is anyone in a similar situation.
I was told that mine was slow-growing - but it seems pretty rapid to me.
Not really similar in that I am er/pr neg. But when my bone mets was first dx in 2002 it was found to be quite extensive. That was in the December. When I was scanned again in April it had spread further. Since then though it has been stable and a year later had stablised. The scan after that the ones in my skull, ribs and collarbone weren’t showing.
Hi Sixpen…yes I’m er+ pr+ and her2-…not sure if this helps but when I had my first bone scan I was told there would be other areas of bone mets that at that time were too small to show up on a scan. This proved true and they showed up later while I was having a great response to Arimidex and there was no measurable cancer activity…I hope the rads will help.
Take Care…Love Belinda…x
Hi sixpen
I have bone mets and am also ER+ PR+ Her2-, diagnosed Jan 08 (primary diagnosed Feb 05) Pre men also. They are extensive although I have had no real symptoms I have been aware of from them, which I grateful for.
Had 6 X taxotere and avastin earlier this year to shut them up, which seemed to do the trick. Now about to go back on Zoladex with Letrozole. Have been on Zoladex before but that time in conjunction with Tamoxifen. Also still on avastin and zometa.
The way it’s been explained to me is that the bone is one organ, and therefore if it’s in that organ, it will show up in various different places from time to time - and they use different drugs and rads (even surgery) to control it as and when needed and it’s also v good if it is not showing up anywhere else (soft tissue) at present. Believe me I know it’s all v scary, but I think if you apply that logic to what has happened to you then it kind of makes sense?
Am thinking of you, and hope the rads will stop the pain in your shoulder soon, and like belinda says, it doesn’t mean the hormone stuff is not working.
x K
Pain-killer wise, I’ve only had to take occasional paracetamol or ibubrofen, but am suffering with my hips - especially the left, and am having great problems getting to sleep - just cannot get comfortable so am resorting to co-codamols. I also had problems with driving yesterday, my clutch leg!! Think that I should’ve agreed with hubby and got an automatic!! I’ve already had rads on this side so am starting to panic!
I’ve got my regular 8-weekly appointment with GP tomorrow - no doubt I’ll be in tears as I leave. She’s just so lovely but will discuss with her.
I should have great faith in Oncs staff, but they are having big moveabouts and one is such a wet lettuce!!!
The one who gave me MRI results was the only one that has been positive of late. I hope that he sticks about.
Thank you again ladies - don’t know where I’d be without you
Hi Anne…do you think it’s nerve or bone pain?..it sounds very similar to the pain I had a while ago in my left hip which was caused by probs with my sacrum…I had 1 dose of rads which worked but before that it was worse lying down. One of the hosp docs I see said the nerves can get a bit mashed up with bone mets…(sorry can’t think of better word than mashed!)…but I’m guessing there are one set of pain killers for bone pain and another lot for nerve pain?? I know what you mean about the hospital…2 people could have the same conversation with me but one puts such a positive spin on it…which helps at times! Love Belinda…x
Love the word ‘mashed’, its as bad as me describing oncs as wet lettuces!!! LOL
The pain thats in my left side is as if someone has got a tight elastic band around the very top of my thigh. I have been wondering whether its coming from sacrum.
I normally take things that people say with a pinch of salt but when I asked to see onc’s staff last time I was at hosp for BishBosh (Zometa), the nurse said ‘You always want to see the doctor’ - she was joking but I took it personally because I DON’T!!! She’s kind of made me wary of asking to seen him if I do have new pain iykwim. It didnt help that the reason why I asked to see him last time was because Occupational Health Doctor had asked me to chase up a report that they hadnt sent because I am going for Ill Health Retirement. Fingers crossed!
Mashed is a good word Belinda!!! my bum & thighs feel mashed. I think before I had the rads I would have described the pain as bone pain but since that has settled down I am left with what I think feels as if it is nerve related - everything around my b&t is so sore. I think the only position that give a bit of relief is standing and moving around but then the bones start to complain. It doesn’t help when they tell me the past two x-rays show degenerative disease as well now. Yes, it probably is my age :(. It doesnt ease up in bed either - so its back on the sweeties. Anne - I do have an automatic but my problem is the leg I need for the pedal on that car! It grabs me in the groin without warning. Whinge is o.k. - it’s great that we can do it here. Good luck with going for the ill health retirement Anne.
Am sorry just caught up wiv this thread, and didnt get to chat last night. Wish I had now. Am really worried bout u now honey.
As u know I have no experience of the bone mets and so cant really offer any advice, but hey you know, am sending u lots and lots of love and big cuddles and will speak to you later on.
Take care and keep on smiling that gorgeous smile of yours
Hi Sixpen,
Im the opposite to you in that I am ER/PR- and Her2+ but I find that the week before I’m due my bone infusion - my boney mets ache a lot. It feels like I am running out of my polyfila and just need a top up.
I’m also ER/PR+ HER2-, on Zoladex (again) and Letrozole. Just started these last week after 6 x FEC. I agree with Kate above that aches can be felt more just before next IV. Also on a recent secondaries day organised by BCC the onc who gave us a talk said that rads can be used more than once on an area of bone mets. It may be worth checking out? Hopefully the rads to the shoulder help and you get comfortable again. Sorry I can’t be of more help but wishing you the best with your treatments.
Dear Sixpen,
Hello! You are my cancer twin!
Original BC dx a year after you , Aug.2001 Treatment : lumpectomy,radiation, chemo ( 6 rounds of Taxotere, Adriamycin and Cyclophosphamide), 2.5 years Zoladex, and Tamoxifen 6 yrs.
A yr ago started feeling severe lower back pain. Finally diagnosed in April of this yr with secondaries in bones (sacrum,ribs, femur and sternum) and abdominal lymph nodes.
Had rads to lower back and ovaries to put them out of action and help with pain.
Am ER+,PR+ and Her2-. Will turn 43 in January, and was premenopausal before this. Have stopped taking Tamoxifen.
Started 4 weekly Zometa in May and also Taxol & Avastin., to which I have responded well.
I am surprised that you are not being given chemo.
Would be happy to buddy up with you.
Best wishes,
Penny (see even our names have something in common!)
Hi Sixpen, I am also ER+ and PR+ but HER -. I have mets to my spine, the top of fmy emur and my ribs. I also have a couple of nodes (one in my chest and the other under my arm) that have mets and a couple of nodes in my abdomen that MAY have mets (“shotty peritoneal nodes” I think is the term used to describe them).
I was on tamoxifen for a while, before my mets diagnosis but when a new breast lump appeared I was switched to arimidex and zoladex (I too was premenopausal at the time of mets diagnosis). After the bone mets were diagnosed I was switched to Exemestane but when new mets appeared they decided to stop all hormone treatment. However, I have heard of trials where doctors have been able to reactivate hormone sensitivity in people where hormonals have stopped working, so wonder whether I might end up on hormonals again in the future.
I was on taxol and avastin from Feb 08 to June 08 and had a very good partial response - over 50% shrinkage. My last scans show that things are stable and I have remained on maintenance Avastin, plus zometa.
I have had relatively little pain from my mets up till recently, when I started to experience hip pain. Originally it was thought that this might be due to nerve compression in my spine, but an MRI has ruled this out. Now the doctors think it is a combination of arthritis and mets to the head of the femur that’s causing the pain. It’s not excrutiating - sometimes there is no pain at all. But sometimes I do hobble around like a ninety year old. It might also, of course, be due to having gone through an early menopause - after the tax and avastin my periods did not come back (and frankly I would be amazed if they every did).
What is interesting at this stage of bc is that no two stories are the same. Encouragingly, though, I also find that at this stage I do get treated as an individual case by my medical team who carefully consider past history, how I have responded to certain drugs etc before deciding on any particular course. I suspect that the treatment given to mets patients will become more and more personalised as we find out more and more about the different biological factors that are involved in bc - even though testing for them is only just beginning to be something that we are seeing as commonplace. At my primary diagnosis just six years ago there wasn’t any routine testing for HER status and I was told I might have to pay if I wanted to know whether I was HER positive or not!
I had my trip to the hospital today - rads planning.
Appointment was at noon. Arrived there and had to park a millions miles away - no spaces anywhere. Left hip is feeling pretty grotty as I mentioned before so I wasnt impressed.
Reported in, to be told that they were running an hour or so behind. Off we went to the cafe then on to the playroom for our one-year old. Reported back just over an hour later to be told to go away again - they would shout us over the tannoy!!! So, off we trotted to the cafe again.
Eventually got in and Top Onc asked how I was - how was the pain in my shoulder. I told him that it had gone but the pain that was worrying me was my left hip. They took an x-ray but there were no obvious fractures or anything so am being sent for MRI. He said he would treat that area again if anything were to show up and that for the time being, we would forget the shoulder - unless the pain came back.
So, I dont know how I feel at the moment - a bit confused I think.
Although, I am now getting my head around the fact that the shoulder bit may well have been there earlier in the year so am finding that easier to accept.
Anne xx
PS I am still very tempted to ask for re-testing to confirm the hormone status ???
Hi Anne…hopefully the MRI might show up exactly what’s causing the hip pain…what a long wait you had at the hospital…especially when you had the little one with you.
I was thinking of being re-tested for her2…I was border line before, then had the FSH test which came back her2-…I wonder how much bc changes over time.?. I was told when I had a good response to hormonals lots of er+ bc cells had probably died out but the more resistant cells are then left…hence chemo now after nearly 5 years of hormonal treatments…think I will ask for re-testing too.
Good Luck with your MRI…hope you don’t have to wait long. Belinda…x
Hi Sixpen,
Sorry haven’t returned sooner, have been having problems with my computer.
Wow, they are slow. I was diagnosed on a Tuesday, had radiation mapping done the next day, and the rads started at the beginning of the next week. Will they discuss chemo with you after the radiation?
Are you receiving pain relief? I take Tramadol which works very well for me,and I have even managed to reduce my dose from 200mg to 125mg.
That is terrrible making you wait all that time with a 1 year-old in tow. I am sorry that you have to go through all this with your child so young. My 1st time around, my kids were 8 and 10 - that was bad enough. Now they are 14 and 16, and fantastically independent. I have taught them to make a lot of their food, they get everywhere on their bikes or the bus and they are great at letting me rest when I need to.
I hope that your medical team pull their act together for you fast.
Best wishes,
Penny
Well, I toddled off for MRI last week and went for the results on Tuesday.
I have further spread!!! Both femurs are now affected.
Rads started straight away.
Discussions are taking place on Tuesday next - next BishBosh - regarding chemo.
I am absolutely gutted!!!
My husband asked about re-testing, but this was just shrugged off - I think that we’ll put this on the back burner for a little while - got to get my head round a few other things first.