The Dr didn't offer any hope...

I’m 28 and finished chemo in November. On Friday I was diagnosed with bone mets in my pelvis. I’m awaiting a scan for the rest of my organs. My problem is my consultant seemed so final about it all. When I pushed for a timescale all she would say is more than three months. She didn’t talk about more treatment - only radiotherapy to ease the pain in my hip and bone strengtheners. She said my cancer was very aggressive to come back so soon after chemo and that it was unusual as it’s her neg but very hormone receptive.
My partner, my mum and myself left the room shell shocked. I was lead to believe I had months left to live. The next day I called bcc helpline where a lovely, level headed nurse told me some women live for years with bone mets. I’m torn between thinking ‘surely my consultant knows best and maybe because it came back so soon it’s some super aggressive cancer that will ravage my body very quickly.’ And then I hope that there is hope, that I do have some time left.
Should I seek another opinion? I want to have some fighting spirit but when you own Dr offers you such a bleak picture it feels so hard to believe.
xxx

Hi Rosie
How awful for you, no wonder you feel shell shocked. If you don’t have faith in your current onc I would seek a second opinion, possibly at one of the centres of excellence? There is The Marsden and Christie’s that I know of but I think there are others around the country depending where you live. Just to say I also have bone mets so there are treatments available but each case is individual so I wouldn’t like to hazard a guess as to why your onc said what she did. Hopefully as you are hormone +ve you would be given some form of hormone treatment. Good Luck and I hope someone else comes along and gives their advice as well.
Nicky

Dear Rosie

I am sorry to read about your recent diagnosis and just wanted to say that our helpliners will be able to offer you more support and information in addition to the valuable support you have here, please call on 0808 800 6000, weekdays 9-5 and sat 9-2.

I am posting some links to various BCC secondaries information and support on offer which you may find helpful, there is also a link to the BCC publication about bone secondaries:

breastcancercare.org.uk/healthcare-professionals/publications/secondary-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/5/

breastcancercare.org.uk/healthcare-professionals/publications/secondary-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/2/

breastcancercare.org.uk/healthcare-professionals/publications/secondary-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/7/

breastcancercare.org.uk/healthcare-professionals/publications/secondary-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/153/

Take care
Lucy

Hi Rosie,I don’t know anything about bone mets because I am only getting used to all this myself so my only bit of advice is to definitely seek a second opinion. You have nothing at all to loose… I really hope you are ok xxx

Hi rosie
so sorry to read you’ve been dx with bone mets especially so young + so soon after treatment :frowning:
It sounds like your onc was unnecessarily negative with you- there are so many ladies who live for many years with bone mets- especially with you being er+ there are many treatment options available to help control the cancer.
I have also had a dreadful experience with a very pessimstic onc following my local recurrence straigh after chemo (mets to skin + chest wall). She gave me a dire prognosis without me asking for it + she suggested I probablywouldnt make it to Xmas (this was said in late sept!). My situation is different as I am triple negative and so I only have chemo to play with but I’m happy to say I’m still going strong 5months later + on my last scan, all organs were clear. I have another ct this week + am praying there has been no progression…
I would agree that a 2nd opinion is worthwhile + if you have little faith in your onc then request another.
Stay positive you have many options + I’m sure you will be fine :slight_smile:
tina x

Hi Rosie, I’m so sorry to hear the doctor didn’t offer you any hope at all. I was lucky in that my Oncologist told me although my cancer was not curable it was very treatable. At that time it gave me some much needed hope and since my diagnosis I have seen new treatments become available.
I was diagnosed with bone mets 8 years ago, I hope this helps knowing there are many treatments out there for you. I had nearly five years of hormonal treatments and I’m now on my first chemo, Capecitabine, (Xeloda.) I have been on these chemo tablets, 2 weeks on 1 week off, continuously since April 2008, I feel very well on them too and you don’t lose your hair on this chemo. There are many treatments for you to try apart from just having rads and bone strengthening bisphosphonates. Bisphosphonates, tablets or infusions are taken by the great majority of bone mets patients. They strengthen bones and my bones are now in much better shape than when I was first diagnosed. Today I feel really well, I have no bone pain, I walk unaided. In 2003 I was diagnosed with both breast cancer and bone mets together when my hip spontaneously fractured, I had a replacement hip and it’s doing ok. I have never asked the ‘how long?’ question and always take some comfort from knowing while some Oncologists can perhaps hazzard a guess they have no way, absolutely no way of knowing just how you will respond to treatment. Good Luck and lots of Love…xx

I was in exactly the same postion at Christmas last year. I finished by chemo/rads in September and in December was diagnosed with Bone Mets- a very dour unhelpful and negative onc who told me that to come back so soon after treatment was very serious and I got the impression I had around 6 months to live- again no discussion about treatment just keep taking the hormone tablets(which if it had spread clearly were not working). Like you I phoned the helpline here and spoke to a very helpful nurse who had lots of knowledge and experience and told me there was lots of treatments and chemo’s available they even sent me the literature. They also suggested a second opinion which I sought - I was able to see someone else within two weeks. Lo and behold at the second consultant actually said they had made mistake and it wasn’t bone met after all ‘just’ Arthritis! They only looked at one scan initally - so be sure they are comparing all the scans they have.

I am not saying this is the case with you but I would seek a second opinion and also find out where the mets are and how many - there are treatments available to you and there are ladies on here that are still around years and years after, 20 years is the max I think. Like Belinda says if it is secondry it can be managed and Lemongrove on here has a host of info on Cyberknife treatement too for small mets.

goodluck x

Hi Rose

I was given ‘less than 12 months’ in October 2009 when my secondaries were diagnosed and I had them in my spine, lungs and liver. AS you can see, I am still here too. I am only weakly positive for Oestrogen and not Her2 positive either. I have just finished my second chemo since diagnosed with secondaries and I am feeling well and able to carry on with my life much as I would want to.

None of know how long we have got really, it all depends on how well we respond to the drug treatment but it really is a case of where there is life there is hope. New drugs are being approved all the time. I was told that I would be ‘lucky’ if I got to 5 years - so that is next April, and ‘exceptional’ if I got to 10 years - I am going for ‘exceptional’. Maybe start with that eh?

Best wishes to you, Sue x

But you will be getting treatment:bone strengtheners and radiotherapy is the usual treatment protocol for bone mets.
I’m sorry you have had this news, so soon after treatment, and hope that all will go as well as possible for you-and that the scans show no further spread.

A friend of mine was given 3 months in 2001 (would you believe on the 11th September) She is still here today and is doing realy realy well. She has had few blips along the way, but doing fine. Get 2nd opinion.
Take care of yourself and let others take care of you too.
xx

Well, I wouldn’t give your specialist a lot of points for bedside manner, that’s for sure. Grr.

There’s new research on something called ‘Jagged1’ pathways for bone mets that suggest we have something that can stop them. Seems that’s how they form and spread, using some protein or other called Jagged1. Other scientists had already been looking at ways to stop that pathway working. Put it into google and have a look. A good onc might be looking at ways to link you into that kind of trial, pronto.

Dear rosie,
my best friend was dx in december last year and was told she also had secondries in lung and liver, we were told she had weeks rather than months, the day before xmas eve i was told to get to the hospital asap as she wouldnt see xmas… 6 months on she is planning a trip to germany to see her sister and looks and feels well, she told me she wasnt ready to lay down and die and she didnt! We are now fighting this together. Echoing what everyone has said do get a second opinion and change your consultant, the last thing you need right now is that negative attitude, prove the idiot wrong. love and best wishes to you xx

I can’t thank you all enough for your reassuring words. After reading your posts my partner and myself are ready to take this on and do everything in our power to fight for as long as possible.
I will definitely seek a second opinion. I need to feel like my consultant is on my side and not writing me off.
Thank you again ladies, you’ve made the world of difference.
xxx

Here is a link to a discussion of the new development in bone mets that Amber referred to above - there is a drug in animal trials that shows promise in halting bone mets:

medicalnewstoday.com/releases/215680.php

fintyx

Edited to correct - animal trials not clinical trials

HI Rosie - my heart goes out to you, thats just way too young.
I’d ask for a 2nd opinion, my Mum had bowel cancer and got Mets and she left her oncologists feeling very very depressed after being told she had a year, but it was the delivery of this information that she had the issue with, that it seemed inevitable and bleak. She went to Cookridge Hospital in Leeds for a 2nd opinion and felt that the dealt with her there with some hope and that they said that yes it wasn’t a good prognosis and she wouldn’t be “cured” but that some people don’t last long, some people last years, and that a year is an average.
I think that it’s how it is presented… it is statistics and some people do defy them. And you want some hope don’t you chick.

Take Care xxxx

Hi rosie,

Being in my 20s as well with bone and liver mets, (ER+, PR+). I feel really sorry for what you have been through and how you are treated by your onc.

When my onc discovered my liver mets less than 6 months after my first chemo, he was really worried and stated that if he couldn’t get that under control, that’s it for me!!! That was April last year. My onc did realize that he wasn’t helping by scaring me, so quickly apologized and I decided to stick with him. After my 2nd chemo, my liver mets was completely disappeared and I’m still here!!! Been on Arimidex, Zoledax and Zometa since Sept.

I’m going to have a scan on Wed to double check because had suspicious signs (again) recently:-( But my onc this time has claimed that he’s intending for me to stay for at least 10+ years. Whatever… who can put a number on our lifetime??? Just “do everything in our power to fight for as long as possible”!!!

Hi Rosie

My secondaries diagnosis came nearly three years ago and following treatment I currently have no sign of disease in my liver and my bone mets in my hip and upper arm are stable. I was also first diagnosed at 28 but am 33 now and expect to be here a good long while yet. My cancer is strongly hormone positive so there are lots of options (currently on Bondronat for my bones and Arimidex and Zoladex combo for hormone suppression). Hang in there it really does get better.

Heather.xx

Rosie, I don’t mince my words (as you will discover if you read my posts), so I’ll tell you straight. You are going to have to take control of your treatment, do your research, and jump up and down a bit. There are people on this forum who will scream at me for saying this, and will complain that not everyone is strong enough to be assertive, and prefer to trust/ rely on their doctor … blah, blah, blah. But this stuff is too serious to keep your fingers crossed.
OK, so chemotherapy didn’t work well on the bone mets. Have you asked why not ?. Could it be you don’t metabolise platinum based chemo well (in which case could they give you a non-platiinum based chemo). Have they biopsied the hot-spots to see if they are actually bone mets ? Are the mets oestrogen receptive (just because a primary is oestrogen +, does not necessarily mean the secondaries will be). Have they discussed the possibility of more localised treatments for your bone mets (such as stereotactic radiotherapy, like Cyberknife or TomoTherapy). I know you say they are offering conventional rads, but conventional rads are only given at a palliative dose, whereas stereotactic rads can be given at a dose that can destroy mets (because they are much more precise).
I’m sorry if I come across as blunt and harsh, but it’s desperately sad to read about someone so young being apparently written off, by a doctor who sounds jaded and clueless.

well said Lemongrove (loud applause from me)!

couldnt agree more lemongrove from another that doesnt mince there words either on here or to gp’s surgeons, oncs etc. We live only one life, so do take control, get a copy of your medical records, hospital records, scans etc be your own surgeon, onc. Let them know you know what they are talking about and that your not to be messed with. Once my lot realised that i was in control of my destiny, ive had nothing but the best. Tis a great shame you have to fall out with them and stamp your feet before they listen.