Finally got to speak to registrar at LGH today to get a idea of what treatment is planned.
So no replacement for the leterozole until I have a bone biopsy to determine if the cancer is Her2 or not.
I feel disappointed that I am constantly having to chase this registrar.
I am feeling lousy at present with tonsillitis which no antibiotics seem able to treat.
Has anyone out there had a bone biopsy? Does it hurt?
Does Her2 mean chemo? Or not?
Sorry to ask so much but I'm like a scared child walking in the dark rather then a 63 year old woman.
I'm sorry to hear how poorly you're feeling at the moment. It can't be much fun having tonsillitis on top of being told you need a bone biopsy.
I'm not a member of this group and haven't had a bone biopsy so don't have any personal experience to draw on but I noticed that your post had gone unanswered. By replying it will bump your post back to the top of the page where it may be seen by someone who has had this biopsy and can tell you about their experience.
You could also post this question in the secondary breast cancer group, which I see you're a member of. If you don't get any responses from either group you could post your question in ask a nurse and one of the specialist cancer nurses will aim to respond within 2 working days.
I know it's not the same as hearing about someone's first hand experience but I've found this information on having a bone biopsy for you.
Do come back and let us know how you get on.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
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I have had a CT guided bone biopsy under sedation for spinal met. I was out like a light and woke up feeling fine. Had to lie flat for 3 hours and went home a couple of hours later. I am waiting for the results and decision about surgery. I am 64 and am scared too. It didn't hurt but take things very gently for the next few days. Take care
Thank you for your kind reply. Knowledge really is key when you are dealing with this diagnosis.
Bone biopsy of Humerus booked in for Tuesday next week. Ive been told I will be given a local anaesthetic and hoping I can have a sedative as well.
All feels like its happening to someone else at present. People tell me I'm brave, but I'm not. Im scared to death as all I want is to live as long as possible with my wonderful husband and 4 lovely sons.
Hope you're getting on ok Catokitty ( great name ) and being treated well
Thank you again xx
I don’t have any experience to help hun but I just wanted to wish you luck and send lots of thoughts your way x hope all goes as well as possible and you get the results through quickly x
I had a bone scan today it only took 20 minutes Just at the end my leg tightened up like a cramp has this happened to anyone else
thanks for your posting as it is giving me advance warning. I am at start of diagnosis and still looking for Primary but I saw my CT scan which shows cancer in many areas. I have not seen regular oncologist yet but phoned this am to let her know scan had happened.
I too, am very scared. I try to think positive but I can’t stop thoughts of, ‘is this the last time I do this, see this etc and oh! I planned to do that last week and now life is so upside down. I had cancer last week but didn’t know it. Life was normal even with the discomfort. This week, now I know, the discomfort seems worse in my head and body because I know. But I also like to know what’s going on like you. I want to be informed so to prepare and plan. I feel vulnerable and helpless so any sort of extra info and information from others I having found wonderfully supportive.
I have a fab husband who is being a brave as he can for my daughter and I. My daughter is keeping me sane and makes me laugh still. I am treasuring my moments and life in a strange way feels richer. I noticing the little things like the way she squints her eyes when she giggles. She has complex needs and learning difficulties and Am her full time carer so I have been occupying my putting support and care in place for met and husband. I have a huge list and feel great relief when I can place a tick next to a completed job.
I have had great support here and now don’t feel ashamed or worried to share my darkest times which normally come now, at night.
I will be thinking of you and sending lots of love to you and family.
I am newly diagnosed with bone mets all over. After extensive tests they have recently found primary under my nipple but only after doing a biopsy. MAmmagram clear, no lumps etc. I know how you are feeling I too am scared and angry. Once your treatment plan is in place you will feel a bit better. It makes us cherish the little things and every minute with our families are precious.
i have been told that I am not going nowhere soon my oncologist so have decided to carry on as normal as possible.
Thinking of you
Thanks for replying to my post.
Sorry to hear about your diagnosis. Amazing that they found your primary. Still haven’t found mine but they haven’t looked since the mammogram and ultrasound were clear. They are assuming it came from the breast cancer from 2015 when I was given the ‘all clear and cured’.
I feel much better now and continue to do lots of positive things in my life.
I started treatment almost four weeks ago. The first treatment was ok after three days but the second treatment really affect my body. Blood in urine for two hours followed by a night of painful bladder but thankfully improved. Now low urea results, nausea, diarrhoea and hair thinning. Caught a cold which went straight to my chest and I don’t get chest infections. After finally getting to see my GP this morning after a 4 day wait, I have antibiotics. Next treatment on Thursday and I am just beginning to feel hungry again. BUT I have a lovely relaxing reflexology session this afternoon, glorious! I almost manage to walk locally everyday. I can only manage 15 to 20 minutes but I walk to my favourite songs from The Greatest Showman which have encouraging lyrics and a great beat to walk to. Or I listen to an audio book.
I like the sound of your oncologist. A positive oncologist must help.
How are you now and do you have a treatment plan in place? You are right, once I knew what was going to happen it was better.
I was referred to CUP and they only did a biopsy because they looked back in my notes and noticed that I had been to breast clinic in 2016 because my nipple had started to sink. I had a MAmmagram and ultrasound then and nothing showed up. Nipple went back to normal. Had another MAmmagram under breast screening in March this year which was clear. MAmmagram in middle of September was also clear. The cancer was behind nipple in milk duct.
They only found the cancer in bones at the beginning of September, 2 weeks later in nipple. I started my treatment a couple of weeks ago.
LetrozolepalbociclibDenosumab injection every 4 weeks. Go back 4 th November for next one.
Apart from slight nausea in mornings, a limp, few muscle aches(hope it's muscular pain) I am feeling fine. Pain in back and ribs which was awful magically disappeared after diagnosis only an ache which I take paracetamol and ibuprofen. I have started to walk better that I could. Can only walk slow, I start to stoop after awhile and get a pain in lower back think this is because I am holding myself stiff, but I can bend a little bit more than a couple of weeks ago. Onc said I can't bend or lift anything.
I am still working full time which is keeping me sane at the moment.
Hope you feel better soon
Well done to keep on working. You are amazing!
I am (or was) full time carer to my daughter who has a complicated life. I am sharing most of it with my husband now. I am not able to support her with her physiotherapy or occupational therapist programmes now. I plan to go back to swimming with her though since the radiotherapy finished. I am still getting over a cold which went straight to my chest. It is my second infection (both different) in the last six weeks. I find it frustrating because I didn't get infections before which needed antibiotics.
I got a call today that my drugs tomorrow will be done from a different hospital from now on but that is fine because it is closer to home. I am hoping that this time I am not affected so much or even better, not at all. I can have better days with more energy almost like the old days if not for the pins and needles down one arm which I have increasingly had since before the diagnosis. Most of the time it takes effort to get around at the moment. My muscles become very heavy like having lead in my legs. BUT I don't give up.
It must be difficult not to bend far. Thinking about it, I was like that a few months ago. Further back, I couldn't get out of bed unless I tried to do a controlled slide off the edge. Toileting was very awkward. This was before I was diagnosed but a chiropractor helped me out which gave me more movement. Then I was told that I could have treatment any time soon by the onc. because my vertebrae were crumbling. I am pleased I saw her before I knew about it.
My daughter keeps me sane. She is amazing.
Keep safe and take care. Let me know how you get on.
Not amazing just trying to remain strong and a bit active. For the past 11 months since pain in back I have not been doing much only going to work coming home and falling asleep on reclining sofa. Going to bed then starting all over again. Just going through the motions of living. Things bit easier now. Still can't walk far.
work has kept me sane, I have worked at the same place for 33 years we are like a family. Sometime disfunctional but still a family.
I was starting to think pain was all in my head as Dr's kept saying muscular pain.
I love your controlled slide out of bed comment. My getting out of bed was very un lady like if anyone saw the struggle I had to endure they would fall about laughing I know what you mean about toileting been awkward. I got stuck in the bath for half hour due to not been able to pull myself out. I had to empty water out, very slowly turn over grabbed towel to put in bottom of bath and go on my hands and knees and get out that way. I have been using a seat in bath filling bath with water and using a jug to wash myself. Lucky things this has improved. My daughter has been home this weekend from uni and I have managed to have quite a few baths just needed someone in house in case there was any problems. I now have confidence to get in/out on my own.
I am getting a shower fitted which will make things easier, hopefully done before Christmas. I have wanted a new bathroom re fit for a couple of years and this has just clinched the deal. Just had a quote from local plumber it's a bit more than what I had intended to spend but so what I can't take the money with me so might as well spend it.
Last Christmas until about end of February I was going to a local physio and having deep massage on back to try to help pain what a waste of money that was. I like to treat myself to pamper sessions which can't do now. I had my hair done last week and usually the high light of visit is when they wash hair they have one of those massage chairs which can't use now. Even can't have my usual pedicure as can't go on their massage chair. Oncologist must have thought I was daft when I asked if I could still use the chairs and he said not as back too fragile. I have even been on a power plate to ease pains.
I live 5 minutes from my local hospital which I too can have treatment at. If I need to see oncologist its 1 hour drive just to get there, and parking is awful.
swimming good for us but I'm concerned about getting out of the pool by the steps in case I hurt ribs again. Idon't want to use the hoist plus I work for a national leisure provider in a dry site and my company runs the local swimming pool which is 5 minutes from my home and all staff know me and as yet don't know about diagnosis. I could not stand the pitying looks. Some of my staff know but not all and want to keep it that way for as long as possible. Make sure you wrap up warm after going swimming especially now it's getting colder.
Hope your teartment is better this time with none or little side effects.
Sorry I missed your last reply. I didn’t get an email like usual.
How are you managing?
I didn’t get to swimming. Too cold. Just don’t seem to get warm now unless I have a hot bath. Also, the treatment is lowering my immune system so I try to avoid populated places.
Drugs have messed up my gut and bowel. Had an unexpected ‘accident’ in the car the other week. Just seen the oncologist too. No warning. I can’t get the meds right to counter it. Too much or too little.
I have had a few good days but today, no energy. Trying to have a daily walk. But got pain almost immediately. Tried to continue but only manage the block. Had to pause a few times and finished me of for the rest of the day.
I still think you do very well - amazing.
Another treatment this week. Really hope it is working. My next scan is just after Christmas. Can you believe it? Christmas. Love Christmas and family, friends and everyone jolly. Got extra outdoor lights this year. Love the sparkles
I have been watching comedy shows to have as many laughs as I can get. QI, Gavin and Stacey, ‘Would I lie to you?’
Hope you are OK.
Just wondering if you've got a fluffy hot water bottle? I got one last year because there were times I just wasn't getting my core warm! But I found that a fluffy hot water bottle on my chest worked a treat! I can get you the Amazon link if you'd like?
There was something else.... *Scans back*...... Oh yeh.
Have you tried drinking those little yoghurt bottles? Actimel type things that are live cultures and in various flavours. Lots of people who are on chemo get the dickie tummy, and lots find that those little drinks really help. Because one a day, and you're replenishing the gut bacteria, even just a little bit.
Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh
Thanks for your suggestions.
I have a large heat pad that sits across my stomach or like you. Up from my stomach to chest. I have it on all night now.
Bowel giving me jip at the moment. I am eating a little kefir but not for last two days. A little yogurt too. Just seems to go through. Trying a probiotic. Not noticed anything yet.
My daughter’s playing up now and I’m too tired to do much. She’ll be off to bed soon. As will I.
Hey, ho! Tomorrow is another fresh day.
Love to you,
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