Please, can others tell me how often I should expect to have a Bone Density Scan. I’ve had 5 years on tamoxifen and just before I started Femara (1 November 2010) I had a Bone Density Test. I am now wondering if I should be asking my oncologist for a referral for a Bone Density Scan this November 2011 - a year after being on Femara.
Your help is much appreciated.
Jeannie
I was told I would have them annually on Femara.
Hi
I have been on Femara now for 2 yearsand had a bone scan before I started. This year at my appointment with the onc Iasked about a new scan and she checked my original scan and said that as they had given me a maintenance dose of calcium from The start she didn’t think one was necessary.
I intend insisting next year
Andie
Hi
I started Femara in May 2010 and have had two scans so far, my onc said it was very important to have them annually, he also asked me to keep a note on my calendar to make sure it wasn’t missed by him or me!
Sandra x
Many thanks for your replies.
Andie - what do you mean by a maintenance dose of calcium? Is it Adcal? Are you still getting them? I asked my GP for this recently as I know of other people getting Adcal. She refused saying she needed instructions from my Oncologist in the first instance. I may ask my onc at next meeting. I am doing my own thing for calcium but it is quite expensive.
Sandra4 - think I remember you from way back. You were concerned about your lymph node involvement. I hope you are doing well and feeling a lot better.
Haven’t set up a new post for so long - so much so it took me ages to figure it out.
Wishing you all well.
Jeannie
I had one just after starting Aromasin and was told every 2 to 3 years!
Jeannie, Good memory, or did l make that much of a fuss!! yes l did!! and Thank you for your support way back then!! l too remember you and pleased you are doing well too! finished all my treatment last November, so trying to grow some hair and trying to get on with life! hoping for a recon. early next year!
Sandra xxx
PS. Meant to ask, how long will you be on Femara for?
Fuss - no never! I can remember you being anxious because of your lymph node involvement. It also bothers me. Fortunately, time helps and it’s over 5 years since I was diagnosed. Getting your hair back helps you to move on. I was reasonable on tamoxifen. However, I’m noticing some changes with femara. Eeeeek, I’m getting fat, I’m very stiff in the mornings and can often suffer if I stay in the same position for a long time and my hair has gone very fine. I think these are all symptoms that I’ve heard others mentioning. From memory, I think I have to be on femara for 4 years because of my high lymph node involvement. Keep well and good luck with your recon.
LOL
Jeannie
Hi Jeannie
Just one thing with Femara, l stretch a lot in the mornings and find that really helps, my joints were very stiff, also if l sit in a chair too long then get up!! Lol no need to explain!! but if l stretch my legs first l have no problems!! l seem to spend all my hours stretching!! but it works for me!
Good Luck with Femara, my hair seems thinner since coming back, but hoping it will thicken!! we live in hope of all sorts!!
Sandra xxx
Hi started on Arimidex in July 2010 Onc arranged DEXA scan and on results of that was put on Alendronic Acid and Ad Cal D3 then 3 months later said I was actually borderline for all that ( I had explored it with the National Osteoporosis Society and BCC as well)
Am still taking both drugs and have a scan due Dec just prior to mammo and appt with surgeon and Onc next Jan
Never blooming ends does it?
I do a lot of stretching exercises too and it really helps J X
I had a bone density scan just as I was starting Femara. The letter that followed said I already had osteoporosis in my spine. It said I would have another scan in five years. I was prescribed alendronic acid weekly and calcichew daily (sounds like something you would give a dog :)). It does seem like a long time between scans.
I have the stiff joints when I have been sitting for a while. My hair was already thin so I hope it doesn’t get any worse or I will have the same hairstyle as my OH!
Libby
What does he mean by borderline. I was initially put on Arimidex in April 2010 (with no bone scan). I was worried about this; and my GP did one (july 2010) This showed osteopenia (not sure how to spell it), which is pre-osteoporosis, so the onc took me off Arimidex and put me on Tamoxifen. I am also on Adcal D3 (which my GP volunteered). Linky
Hi Linky I have dug out my DEXA scan results from last July 2010 and the results for my hips were OK ish but for my lumbar spine were mildly osteopenic (all this is age related of course) then due to more research by Oct 2010 my Onc said 'his network’would regard my results as borderline and I needed to consider whether I wished to continue taking alendronic acid and to let him know when I returned in Jan of this yr. I seem to have always been ‘borderline’ for all treatment esp chemo etc etc. I was put on Arimidex as I was post menopausal prior to dx. Hope this answers your questions. J xx
Hi jeannie
My onc referred to my calcium which is Adcal as a maintenance dose. My original bone scan was fine, so instead of the normal dose which is 2 chews daily she just prescribed 1 to hopefully avoid any problems from developing.
Andie
Hi should have added that my Onc’s usual practice is to refer for annual Dexa scan, usually about 2 weeks prior to mammo, then all results can be given at same consultation J xx
Hi All
Many thanks for your replies. I’ve just got home from the docs. I nearly fell off the chair!! She agreed to everything I asked for. I’ve had my bloods taken for calcium and vitamin D levels, been given a precription for Adcal, got urine sample bottle in order to test for acid/alkaline levels (I would like to try and keep my body alkaline) and she will write to hospital for a Dexa Scan appointment. I came home happy for once. However, I don’t think it is right that we should have to ask for these things - they should be telling us.
libby 2010 - I go to Glasgow for my mammo. They only do 2 yearly mammos, saying yearly is too many.
I’ve been having a nipping sensation under my good armpit which they say is nothing to worry about. However, with my background (misdiagnosed for 4 years) I’m not taking any risks. I don’t know if they will give me a mammogram on my next visit. It may be best to ask for a MRI at my next visit? Mammograms are not very good on lobular BC. I doubt if I will get a MRI but I have come to realise, if you don’t ask you don’t get.
Wishing you all well.
Jeannie
Hello
Interesting thread - seems research on Letrozole (Femara) is ongoing and we could be taking it for life !! but if keeps the dreaded cancer cells at bay … Agree with Sandra , stretching before moving out of bed or chair really helps, and just read that sitting too much of the day vastly increases risk of soem disease (think it was cardio vascular) - so as always , more exercise, even low level stuff is really good.
At start of Letrozole treatment I had a DEXA , which showed some osteoporosis and osteopenia, I didnt fancy the drug that was suggested as already had problem with acid reflux, asked for Protelos (Strontium Ranelate) - and surprise surprise got it from GP , no trouble. have to take every day but its part of my routine now, and no side effects. Nervously waiting for result from 2nd DXA , 18 months later, I think for us, DXAs every 18 months - 2 years is the norm, while on Letrozole. As already on meds , dont know what they will suggest if my bones are thinning rapidly. I’m hooked on Letrozole ! feel safe on it.
BONES - its not just calcium you need - its Vitamin D to enable body to absorb the calcium - complicated subject, need other things too but a reasonable diet will probably see to that. Thing is they prescribe a combined tablet - like Calceos (Calcium with Vit D) - now some info leaflets say take Ca on empty stomach, but you need to take Vit D with some food as its only dispersible in fat !!! Our specialist nurse warned about taking too much Calcium and said most diets OK for Ca - so get some Vit D only tablets - but NHS will not prescribe these !!! I’m fed up with all these complications.
Good Luck with it all. Kirsty
Hi Jeannie MAMMOS - in England the norm seems annual mammograms after bc, for , I think its 5 years, then less frequently , but not sure about after 5 years. Definitely its annually for a while after “trouble”. Would be interesting to challenge it - but I guess Scotland has its own guidelines they follow ? not the English NHS ? Thres a lot of controversy about mammos anyhow, but thinking about it simply, I think it does give us reasons to relax and get on with life - when hear that NED report. Good Luck.
Vitamin D and Calcium in blood - Great to hear some GPs are doing this - I too think it should be routine , I asked a nurse for this when having blood taken for something else, said I’d have to ask Dr for that request - didnt feel I could take a whole GP appt for that - feel he’s fed up with me as it is !!! Would gladly pay for these if there was an easy, RELIABLE , way to get these. Wish we could contact GPs by email, dont like the telephone appts - its not private, my end that is. Seeing onc team for annual follow up appt. in 2 weeks , so will tackle them - so friendly and approachable, if they request it , GP will have to do something ! It should have been requested in the letter to GP about my diag of osteoporosis.
This should be routine, will get onto Osteoporosis Society, anyone else get blood Vit D and Ca levels checked ?
Thanks , Kirsty