Hi!
Looking to meet everyone and find out what goes on in this brave new world…
I was diagnosed in August 2001 with breast cancer at age 35. I had a 1.5cm lump with one micrometastasis in my lymph nodes. Had a lumpectomy, chemotherapy (with taxotere, adriamycin and cyclophosphamide as I was on a clinical trial), radiotherapy, zoladex for 2.5 years and tamoxifen which I am still on.
Last October I started to have bad backache which was diagnosed as herniated discs. I had an MRI which showed this and struggled along taking Paracetamol and Nurofen. Then in January I broke a rib with no cause. My GP insisted that I went for a bone scan which I got around to at the beginning of March which showed hot spots in my rib and sacrum. Then I spoke to my onc. and she said to see the orthopaedic onc. who looked at my MRI from Nov. who immediately saw something and sent me for a biopsy on my sacrum. The biopsy showed that I have mets from my original breast ca.
So here we have gross medical negligence in that the person doing the report on my MRI missed a very obvious tumour. All the doctors I have seen since have been apologising to me, not that it was their fault. Do you think that I should sue?
Anyway I would like to hear what treatment people in a similar situation are receiving.
I am starting a 2 week course of radiotherapy tomorrow in order to shrink the tumour and allow the bone to reform, and reduce my pain. I am on some lovely pain killers - Tramadol and an NSAID which also seem to calm me a bit as well.
I am having a PET-CT scan in a week and they are retesting my tissue for Her 2 as there was controversy the first time around. I was positive here and negative in Switzerland for the clinical trial.
So if I am +ve then I will get Hercpetin ( altho’ my onc. doesn’t think that I will be), and if I am -ve it will be Taxol and Avastatin
What else are people doing?
Thanks for any and all responses,
Penny
Hi Penny
Sorry to read of your recent diagnosis. Whilst you wait for some of the other users to reply with their experiences I thought you might find our fact sheet on secondary breast cancer in the bone helpful, it can be found by following the link below:-
breastcancercare.org.uk//docs/secondary_breast_cancer_in_the_bone_0.pdf
I hope this helps.
Best wishes
Sam
BCC Facilitator
Hi Penny,
so sorry to read of the problems you have. So often it is the GP who is negligent in recognising symptoms and referring promptly, not those experts who read the scans we have. It seems the danger here was that they focussed on your presenting problem of the herniated discs. You would expect with a previous dx of breast cancer a more thorough reading of scans. It seems from the round of apologies you have had that clearly an error of judgement has been made and I might be tempted in your position to go for the medical negligence but it is not an easy road. I think there are others here who have pursued this and will give you good advice. For myself - I was dx back in 1990 and for the last 6 years have had extensive bone mets which are being controlled with bisphosphonates quite successfully. I have also been on herceptin for over 4 years now. Just recently I have had low backache for a few weeks and getting various scans. They seem eager to treat it with rads but I am pressing for a more specific identification of the exact area that is causing the problem. I would hate to have the rads and then find I still had the pain! I hope the rads treatment goes well for you and wish you luck tomorrow at the start of it.
dawnhc
Hi Penny
Sorry you have to join us all here. I’m really new to this too but have had some very helpful advice/experiences back from any posts I’ve done so I’m sure you will get some good feedback.
I don’t know about the ‘should I sue?’ question, maybe someone else here has knowledge about that and can help, but I thought I’d get in touch as I’ve also just been dx with bone mets.
I have an area in my pelvis that I hadn’t been feeling any problems with but was found on a bone scan. I am due to start FEC chemo and biphosphonates in about 10 days after several discussions with my onc. We decided on this course to give the old body a blast of chemicals in case there’s any of the little critters hiding elsewhere that haven’t shown up on scans! The idea is to kick start my treatment which will continue after this with hormone therapy and bisph. However all of us are different and I’m sure it will depend on what they find when you have your PET scan. Also if they are re-testing you for HER2 then they will decide what course of treatment is most appropriate. From what I’ve read here and in other places there doesn’t seem to be right or wrong answer but by getting some feedback from others in your position, as we did, it will help you understand why a course of treatment is being given.
Don’t be afraid to ask loads of questions to your onc or anyone else involved in your treatment plan and get them to explain why when decisions have been made.
I hope your rads help and are not too bad to endure, having had them once before you will know what to expect and from what I’ve read should help with the pain as well as act on the tumour.
Good luck and feel free to ask any other questions either now or later.
Nicky x
Hi Penny
I was 37 at original diagnosis in 2002 and had lumpectomy, radiotherapy, zoladex and tamoxifen. At the end of 2005 I had bad pain in my hip which I put down to a sporting injury - I was kick boxing at the time - however it didn’t go away and xray and bone scan in feb 2006 diagnosed mets to hip,pelvis and spine.
I had radiotherapy to affected areas (and to my ovaries too as I am ER+ wanted to stop as much oestrogen as possible) - that stopped the pain and shrunk the tumour in my hip considerably - moved to Aromasin and Bondronat (oral tablet) to help bone strength - scan in March 07 showed small progression so moved off Aromasin and onto Faslodex (monthly injection) still taking Bondronat. I am currently stable and have no pain and feel well with no real side affects from the treatment. I lead a normal life and do all the things I used to (except kick boxing!!)
It is scary to be diagnosed with mets and I felt frustrated that no-one had suspected it when I had pain in hip but I guess that wouldn’t have changed prognosis or treatment anyway.
You will find many on this site who are living with bone mets and some who have done so for some time - good luck with treatments.
Smartie
Hi Penny
Sorry to hear about your diagnosis and also how badly you were let down in getting that diagnosis.
You ask for advice on whether to sue and I’d say that if youa re thinking of doing so you should get some solid legal advice now from a solicitor who specialises in medical negligence claims. This will give you an idea about whether you have a good case or not.
I know a bit about this because I was misdiagnosed after a mammogram recall…was told I had cysts and 7 months later diagnosed with locally advanced primary breast cancer. I took advice from a good solicitor…the law is very complicated in the area of negligence and I was advised I would not have a case for any finanicial compensation. I did however take a formal complaint against the Trust which eventually went to the Healthcare Commission and against the doctor which eventually went to the GMC. I got an apology from the trust and the doctor was found guilty of negligence. But this all took well over 3 years.
If you do decide to pursue a complaint through the internal NHS procedures or in court I think you have to be very clear about why you are doing it, and try if you can to disengage yourself from the emotional trauma which it entails. I managed somehow to pursue my complaint without getting eaten up with bitterness (as I have seen some people pursuing complaints do). I feel I did something to stop the doctor ever making the same mistakes again…but early on I had to accept that I wouldn’t get any compensation…and nor could anyone take the fact of my cancer away.
I don’t have bone mets and hope you will continue to get good advice from those who do.
very best wishes
Jane
Thanks everyone for your responses.
I am now halfway through the radiation. They are also zapping my ovaries Smartie as I am also very oestrogen +ve.
Unfortunately they did not take enough tissue at the biopsy of my sacrum to be able to check the Her 2 status! It just keeps on getting better! So either they will have to do another biopsy maybe from my rib, as that has not been radiated, or…actually I do not know what else!!
Had the PET-CT today so hopefully will get the results later this week. Am feeling a lot better now that the pain medication is working. Plus it seems to help me feel calm and sleep quite well.
Have been quite encouraged by reading the other posts from bone met people.
See you again soon,
Penny
Hi Penny
Just wanted to say I’m sorry you’ve been dx with bone mets, I also struggled on with paracetamol and ibruprofen after my GP told me I had a pulled muscle (I went to see him 3 times in 2 weeks). I’m 39, my mets were found the same time as primary last October, primary is only 1.6cm. Had taxotere, know on herceptin. I hope your treatment goes well for you. I’ve found this website really helps me.
Take care Liz x