Hello all,
sorry to intrude but I am after some help and/or advice really. A bit about me first if I may…I was dx with bc in March last year, grade 3 stage 3, ER+, HER2+, 25/28 nodes involved. Had mastectomy, E-CMF chemo, rads and 3 Herceptin. Currently on Tamoxifen and Zoladex (I’m 36, was 34 when dx). Only had 3 Herceptin as developed heart failure so it had to be stopped. I was always told my prognosis wasn’t great, given the amount of nodes involved and the fact I’m HER2+ but not receiving Herceptin. My onc said they would keep a very close eye on me and monitor me closely as the risk of me developing secondaries is v.high.
Well, lately I have had terrible back and hip pain in specific areas. Also I’m permanently nauseous, have constipation and am showing other signs of hypercalcaemia. All of which I know are indicators of bone mets. My gp is concerned as ct and bone scans done prior to me starting chemo showed ‘hot spots’ on my spine. On friday I had my bloods done to check the calcium and my gp has made an urgent referral to my onc, recommending further investigation.
I am seeing my onc on thurs afternoon and hope to have a bone and ct scan asap after that (providing he takes me seriously, which is one thing I’m worried about!). Don’t get me wrong, my onc is great but I do worry that he’ll think “here we go again, another bl**dy hypochondriac!” So, I am worried out of my mind and this is gonna be the longest week ever!
I’m not sure what I’m after from you guys right now really. Perhaps just some idea of how your bone mets were diagnosed. If anyone is willing to share their experience I would be v.grateful. I know that Tamoxifen and Zoladex can cause aches and pains, but (rightly or wrongly) I’ve just got a bad feeling about this
Many thanks,
Kelly
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Dear Kelly,
I have no experience of this, but others will soon be along to read and reply to your posting, I’m sure.
I’ll pray your Oncologist does take you seriously.
I’ve had experience of feeling like I’m wasting the Drs time with my anxieties about further ca developing, but it’s our body and we know what doesn’t feel right.
((HUG))
Ann
Hi Kelly
You’re not “intruding”! This forum is (as I understand it) open to any who have concerns re the possibility of secondary spread of bc.
I have bone mets (diagnosed by bone tracer scan) and am doing well on treatment, but I’m herceptin negative and aged 58 so in a different situation - I’m sure others will be along soon who can give you more relevant answers.
Hypercalcaemia and bone pain are both very treatable by drugs (bisphosphonates).
The onc SHOULD take you seriously, but if you have had previous bad experience with this particular onc, maybe have a word with your support nurse or Macmillan nurse of there is one.
Will be thinking of you on Thursday. Don’t forget to let us know how it goes, whatever… we’ll be here for you.
Hi I have the same oncologist as you and I find him very willing to listen.I am sure he will take you seriously.The very best of luck.Love Valxx
Hi ladies,
thanks so much for your prompt replies. I have only had good experiences with my onc so far, so goodness knows why I am paranoid he won’t take me seriously this time!
Many thanks for your good luck wishes ann & val, much appreciated.
Mrs Blue - I am pleased to hear you are doin well on treatment. Thank you so much for sharing your experience with me, I will be sure to let you know how I get on,
Take care and thanks again,
Kelly
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Hi Kelly
Encouraging!
It’s a bc thing, unfortunately… we understand. 
Hi Kelly
sorry to hear you are having problems with your bones I am sure your onc will send you for a bone scan or maybe when he checks your last scan if the pain you are now suffering is in the hot spots he may start you on byphosphonates I am on pamidronate and have been for the last 4 months. I have it every 3 weeks with avastin. No side effects and my pain is a little better I am under the impression it takes a few months before it takes effect. In Feb I had several blasts of radiotherapy so that might be an option for you. Crazy to say but please try not to worry we have lots of ladies on here who have problems with bones and they seem to be able to get it sorted one way or another.
Sorry to hear about your problem with herceptim I think lapatinib is given to her2+. I am her2- with spread to liver and I remember asking about it and being told it was not for me.
Hope this helps.
Love Debsxxx
Hi Kelly
Have seen your posts in the past and what a great help you’ve been - notably the top tips for going through chemo - well done there!
I came onto this site after being dx with bone 2ndaries in April this year. I had a local reoccurrence and had to have a CT scan and bone scan before a potential mastectomy. Unfortunately they found an area on my hip and a possible area on my spine. I was so scared so know what you must be going through at the moment. However the ladies on here in the ‘secondaries’ club have really helped me with their experiences, answers, support and inspiration. If you read through previous posts, including the archives you will get an understanding about the treatments that are out there. I am currently going through chemo and biphosphonates and at my half way point I have had very positive scan results to show it is all helping. My boney area on my hip is showing signs of repair/healing which is down to both drug types I’m having. After chemo I will go on to hormone therapy as I am ER and PR+ but HER2-. I’m sure your onc will take you seriously and arrange any tests that are needed, if there’s any doubt I’m sure they’ll run them just to make sure anyway. I really hope they don’t show anything abnormal up but I know what you mean about having a feeling about something. If there are areas of spread be reassured there are many treatments available and, from what I’ve read on here, many ladies have secondaries and treatment keeps things in check for a good number of years. Fingers crossed that your appt goes well on Thurs and you get the tests you need asap. There’s no point me saying ‘don’t worry about it’ as I know that’s pretty much impossible. All I can say is we are here to support you and answer any questions you may have. Go have a glass of wine, after all, as somewhere I read said that nothing will change between now and your scan or results and you are getting it dealt with.
Take care
Nicky x
Hi Kelly, I was diagnosed with both bc and bone mets when I had a fracture in 2003. My quality of life has been good, it’s sometimes been hard to believe I have mets. I hope all will be well for you…x
Sometimes when I post i think 'here we go again’LOL. But I think my story is worth repeating. I have had bc for 18 years now and in 2002 i developed sciatica after having a biopsy done on lymph nodes in my neck. I thought it was due to a having my neck in fixed position for too long and that had aggravated something in spine. Well we try to explain it away don’t we. My hospital was onto it very quickly and I was back that week for bone scan, ct scan and xrays. Extenstive bone mets were found in skull, collarbone, ribs, pelvis/hips and all areas of spine. I had had no previous pain or warning of this apart from the sciatica. When I looked back I remember finding my head got very tender and any pressure - even resting on a pillow was uncomfortable. It didn’t occur to me that anything was wrong. But all that was back in 2002. I was put on a bisphosphonate (pamidronate) 3 weekly and after a few treatments had another bone scan which showed the drug was working well for me. I was relatively pain free and life went on pretty well as normal. I continued having problems with lymph nodes in neck, collarbone and chest area and was on chemo for them - but nothing seem to work. It was at that time the onc checked on previous biopsies and found that I was her2 positive so since 2004 I have been on herceptin as well as pamidronate. I have just recently developed pain in lower spine & hip and am having radiotherapy to those areas and hope that will be successful.
Kelly I really hope that these scans show no change re the bone mets - but if it is then the treatment is not bad and as long as the pain is under control it is bearable. Wishing you all the best and let us know how you get on
Dawn
xxx
Hi ladies,
thank you so much for all your encouraging responses and especially for sharing your experiences with me. It is very reassurring to know that IF anything sinister is found there are plenty of treatment options available and its not necessarily all doom and gloom.
I will remain anxious between now and thurs, and no doubt that anxiety will quadruple as I wait for any scans and results. Despite my best efforts I am finding it hard to chill out and put this to the back of my mind. My OH is fab but can’t really understand why I am so worked up. I guess you need to be in the unfortunate position that we are in to truly appreciate how worrying aches and pains can be.
So, thank you all once again for your help and support. It is very much appreciated,
Take care all, and I shall be sure to let you know how I get on,
Kelly
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Hi Kelly
No experience of this just just wanted to wish you luck. Remember you well from my furst days on here and you have been brilliant and so helpful to others. Sending you a big cyber hug. Will keep everything crossed for you.
Much love as ever
Dilys
xxxxx
Hi kelly
I am so with you on this as I am waiting to hear about a CT scan result as I had a worrying MRI about a fracture in my T5 vertebrae. I was told nearly 2 weeks that I MAY have a spread. I am still having chemo for primary dx in Jan only had 2 lymph nodes involved and 26mm tumour grade 3 so I have been left in limbo land yet again.
I am also anaemic which doesn’t help when trying to look after a 6yr old and 20mnth old. I am sooooooooooooo fed up with my Onc and the lack of urgency. I waited 3 and a half weeks for my MRI results just because my Onc was on holiday. I am due to see him Thursday but have been on phone to my trial nurse today as I am so peed of with this.
My thoughts are with you Kelly too I hope you get good news hun…
Sorry my rant is over…xxxxxxx
Paula x
Hi Kelly
Well know I have emailed u, but wanted to say hope the results are good news and will be keeping everything crossed for you. Hopefully it is nothing and just aches and pains from treatment etc, cant be old age yet LOL.
Take care honey and willing you all the best news in the world.
Lots of Love
Dawn
xxx
hi kelly
i know you replied to me on a similar thread a few days ago, i am so sorry you are in this horrible position and playing yet another waiting game!! i had my bone scan on thursday and i am still waiting for results , i have a bad pain in my ribs that is just not going away , i had a chest xray and another mammogram and they have come back clear, when i was discussing this with my lymphodema nurse she told me ( yes ive got that as well !!! ) she told me she is hearing a lot of reports of painful ribs and joints and it can have a lot to do with radiotherapy, the effects can last for months, i really hope you go on okay kelly, my herceptin is a little in limbo i went for a heart scan and my lvef was 41% if it drops below 50% they give you a break from herceptin but my onc said because i dont appear breathless they will crack on !!! which i found a bit scary, anyway i am praying its just after effects of all the treatments over the months and i pray for the same for you kelly, im going for a jacques fruit cider try it you will love it !!
love galen xxxx
Hi all,
Thanks as ever for your responses,
Paula - I wish you all the very best for your results on thurs. Its only a shame that you’ve had to wait so long for them. Mind you if they’re good then I’m sure you won’t care about that. What time is your appt, mine is not 'til 4.30!
Dawn - Your support is always appreciated, especially when you say such kind things about my age! Thanks v.much for your best wishes and I’ve no doubt I’ll be emailing you all on thurs night! Hope you are doing ok x
Galen - Playing the waiting game is just horrid isn’t it? I’m worried and getting impatient already, and I haven’t even had my onc appt to get the scans arranged yet!! I do hope the results for you are good, but I’m sure you realise by now that if they’re not so good then there’ a wealth of support right here for you. All the very best, I will be keeping everything crossed for you, be sure to let me know how you get on.
Now, my blood results have come back ok according to the nurse at my gp’s surgery. Not sure what is causing the nausea, extreme thirst and consipation but it doesn’t look like its hypercalcaemia. I don’t wanna be clutching at straws, but if that is the case then does it make the chance of me having bone mets at this time less likely??
Take care all,
Kelly
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paula43 - hi, I think you go to Brighton -?
I am waiting for HER2 results and Liver biopsy histology. was told 2 weeks and now will wait 5.
have started a Epirubicin in the mean time - had one dose.
seeing Richard Simcock next week for results and decision on whether I am staying on Epi or changing.
let us know how you go
gill
Hi Kelly,
We were diagnosed around the same time last year and I have followed your progress… you are a wonderfully supportive person and you started some cracking threads last year… tips to get through chemo and of course the legendary “wind” one! I am really sorry you have all this worry at the moment and will be keeping everything crossed that your news is good.
Take care,
Polly x
Hi Polly,
thank you so much for your kind words, much appreciated.
I hope you are doin ok,
Take care,
Kelly
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I would say - at your visit to onc insist as firmly as you can for a bone scan and CT and or MRI scan. My secondary diagnosis was delayed for 6 months because the GPs,a physiotherapist and the Breast clinc (for routine annual check up) did not spot the signs or take my query - could it possibly be secondary breast cancer in the bone? seriously enough. I had terrible back pain which came on suddenly. I called out the doctor to my home as could not move, which was diagnosed as a bad strain. It did get better and I carried on for six months, but kept returning to GPa few times as a niggly pain was still there. Eventually a different GP did blood tests and sent me to the hospital. I then had all the tests and secondaries found in bone ( including two collapsed vertebra), lungs and liver, since then have a had good treatment, but I would have preferred to have had the diagnosis 6 months earlier. Better get it checked out asap in my opionion!! Hopefully it will be nothing to worry about, but better to know rather than delay.