Hi all
I am usually a lurker on these forums and have found them a great help over the last few years. This is my first time posting and I would be really grateful for any comments or advice, please, if you have time.
I was diagnosed with inflammatory breast cancer in Jan 2010. Bone mets have started popping up in the last 6 months and I have just found out that I have a 2cm tumour in my liver. I have previously exhausted all hormone therapy and have now been put on xeloda chemo tablets.
My onc has arranged a long meeting on tuesday to go through everything and I want to go in all guns blazing. I am spending the next few days researching any options available…cyberknife, radiotherapy, surery, radio ablation and so on. I don’t know much about my options at the mo and I know that some of you out there have vast knowledge about some of the harder to obtain treatments. If anyone could give me any pointers as to what to look into or what options there may be, I would be hugely grateful.
Also, is it worth a referral to the Marsden just in case? Do they have access to more treatments there?
The reason that I want to explore all options is that I am 42 and have 2 boys who aren’t even in secondary school yet. I need to be able to say that I tried everything.
Right, I’m off to start my research now!
Best wishes to all of you
Rachel
x
Hi Rachel and welcome to the BCC forums
Glad you have made your first post, you have come to the right place for good information and shared experiences from your fellow forum users
In addition, our helpline team are here to offer you information and support, lines are open 9-5 weekdays and 10-2 on Saturdays so please do call to talk through any research information you want to know more about, the number to call is 0808 800 6000
I am posting a link to the BCC secondary page where you will find further information and support ideas which you may find useful:
breastcancercare.org.uk/secondaries
Take care
Lucy
Hi Rachel, I’m sorry to hear about your progression. I’m triple negative with mets to lungs, liver, sternum and nodes and find myself increasingly positive about the many treatments out there and under development as we speak. Others have far more knowledge than me about Cyberknife etc. and I’m sure they’ll be along soon. From my own experience, chemotherapy has worked very well at reducing all of my secondaries. I’m currently on Carboplatin as part of the TNT trial. It may be that your onc feels you need systemic treatment (ie chemo) before looking into local treatments - the chemo may be sufficient to get rid of it. You don’t necessarily have to be unhappy with your current treatment to get a second opinion. I went to the Marsden myself and they told me that they would have recommended the same treatment I was receiving, which gave me peace of mind. I too have young children and will do everything I can to stay around as long as possible. Hang on in there Rachel and good luck for Tuesday.
Moondog xx
I don’t have anything to add to the above advice from Moondog. Wanted to say hello. You sound like you know what you want to achieve and I think you’ll soon work out if you trust your onc or not.
Lots of love and luck for next week xxx
Hi rachel,
I’m not on the forums very often these days, but i just happened to catch your post. When you said about your boys still being at primary school it resonated with me. my youngest was 8 when I was diagnosed with primary bc and liver mets. That was 5 and a half years ago, so be encouraged! She is now starting her GCSE subjects.
I had FEC and Taxol chemo, and have been on herceptin ever since. I had RFA (radiofrequency ablation) at UCLH after chemo, and again this year when I had a recurrence in my liver. That was 6 months ago and I’m just waiting for MRI results to see what’s happening (which is why I’m back on the forums - that horrible waiting game).
There are certain criteria you have to meet for RFA - If I remember correctly it’s 4 or fewer tumours, and only in the liver (but bones don’t seem to count as people often go on a very long time with bone mets), less than a certain size (2cm should be fine), and fit for surgery. I think there’s one more that I’ve forgotten.
I had a general anaesthetic and stayed in overnight. There was some pain in the following 24-48 hours, and still a little discomfort in the area some time later. This isn’t painful but unnerving as for a moment I always imagine it means the tumour is growing again.
i hope this has been helpful. Best of luck with your research and your meeting with your onc.
Jacquie
Great to have you back Jacquie, HOW ARE YOU?
Hi Rachel,
Glad you decided to post (as this forum will help you get some support and info), but of course sorry you had to post.
OK this is what I would do.
(1) You say that endocrine therapies have failed. Do you know why they have failed? The fact is that cancer frequently changes it’s receptor status (in 32.4% of cases), and it could be that your cancer has changed from being ER+ to something else such as Her2+ (that occurs in around 15% of cases and actually happened to me). If you have become Her2 + then you would require Herceptin or Lapatanib (chemo wouldn’t be adequate). Consequently, I would ask your Onc to perform a biopsy (obviously that will depend on whether there is a met they can access). Don’t allow your Onc to fob you off by saying cancer rarely changes it’s receptor, I can provide a link to research evidence if you send me a pm.
(2) With regard to whether Cyberknife stereotactic radiotherapy would be an option for your liver mets. You obviously need to speak to a Cyberknife specialist, but in general, Cyberknife could be an option providing you do not have more than three mets, and they are no bigger than 3.5cm. If you have more mets, or they are bigger, you could look into TomoTherapy. Tomotherapy is actually an IMRT machine, but can be adapted to be used stereotactically. If you are an NHS patient you will need to be referred to either the Royal Marsden in London (not Sutton), or the Mount Vernon Hospital in Middx, or Barts Hospital in East London. If doctors there think it’s appropriate, you may still have a problem because few PCT’s/GP Commissioners fund it (in fact only 29 out of 150 will fund it). Consequently you may need to get charitable funding, and I believe the Marsden have a Charity that sometimes helps, or else you could approach the Victoria Medical Foundation (who paid for my Cyberknife treatment). If you want to be referred for TomoTherapy, Addenbrooks is probably the place to go.
Hope this info is of use, and let us all know how the meeting went.
I sought a second opinion at Royal Marsden as I was concerned about my oncologist.I now see my "new"Oncolgist at Rpyal Marsden,London but my surgeon in Reading. Seems to work well.
Best of luck x
Wow, thanks everyone for the support and encouraging stories. I’m finalising the list of questions today and you have been really helpful. I’m definitely going to push for consideration of RFA, cyberknife, tomotherapy and see if they can do a biopsy to check the receptor status. It would be amazing if it was suddenly HER+. Keep smiling and love to you all. X
Ratsypan, hope you are ok, what happened? Hope you ok and you are commencing some good effective treatment xx