I haven’t posted for a while but regularly view the discussion forums, they are so helpful.
My Mum was first diagnosed with BC in 2000 and secondary in the bones in 2006. Over the last 2 years, she has had radiotherapy, chemo, Tamoxifen, Letrozole, Exemestane and Zometa and this has managed to keep the secondary cancer from spreading, until last week. She recently completed a course of chemo and had a follow up MRI scan. Last Monday, we were shocked to hear that the cancer has now spread further up the spine, into the lungs and also the liver. The Oncologist expressed her shock at how quickly the cancer had spread given that Mum only finished her last course of chemo 5 months ago. Mum’s Oncologist didn’t really go into things and I think that Mum, Dad and I were so shocked that none of us really asked the right questions, something I am very annoyed about as the whole point of me being there was to ask the questions that my Mum and Dad normally think of when they get out!
Mum has now been put on a course of Falsodex, another hormone treatment, but I really got the impression that there is little the Oncologist feels can be done. I really don’t know what to do or what to expect and feel totally useless. Mum is waiting for the Christmas period to be over and is going to speak to her GP to find out what information has been sent to him by the Oncologist. She also has an appointment at the end of January with the Macmillan Nurses (this was suggested by the Oncologist so they are in place if and when Mum needs them).
I really feel that something else should be done but given all the treatment that Mum has had over the past 2 years, is there anything left? The secondaries in the liver and lungs are completely new and we really don’t know what to expect with this other than the tiredness and the cough that Mum already has getting worse? Any help would be greatly appreciated.
I cant offer you any advise but Im sure that someone will be able to give you some helpful info. My mum too has just been dx with cancer in her lungs and throat though we have been told this is a new primary not a seconday from her bc 11 years ago. We dont know what is being planned for mum and will hopefully know more next week.
Can you not ring MacMillan for advice now before your mums appt?
Thninking of you and your mum and sending positive vibes.
It is so devastating the speed that bc can suddenly spread and I think here we all understand how devastating it is for you, your mum and dad.
I hope that there is some more chemo options that your mum can have as with me I feel better on chemo than off as it keeps my symptoms away. You mentioned the hormonal drugs and bone drugs but not the chemo by names so am unsure what she has had as there could be more options there. It is complicated as it would depend on lots of things as to whether she can tolerate more chemo as you need other parts of your body to be working to tolerate more chemo like good heart function and liver function so your oncologist has to take that into consideration.
I think your oncologist is the best person to discuss specific treatment options with but your GP can support you and help you make decisions and what questions to ask your oncologist but probably won’t know what treatment options are available as it is outside their area of expertise.
I have had the support from the hospice for the last 2 years and they have really helped with symptom and pain control and got me aids for the house and also supported my family really well so I hope you get on well with your MacMillan nurse.
If you are not seeing the oncologist for a while, I would get in contact with your GP or the oncologist’s secretary and ask for an earlier appointment so you can discuss your concerns as you can’t take it all in when you get bad news and you don’t want to spend all that time worrying when an appointment might be able to help you understand what is happening.
Thinking of you and your mum.
kate
Thank you for your support, as you say it is so difficult to take everything in when you are faced with bad news. Mum was offered more chemo instead of the hormone treatment but I think that, having just completed a course, she wants to try something else that won’t make her feel so ill. I spoke to Mum last night and she is going to talk to the nurse next Monday when she goes for her next hormone injection. I think I will see how she gets on then and if not, suggest that Mum makes another appointment with her oncologist as she is not due to see her again until the end of March.
Sorry to hear about your mum - I find it particularly hard to deal with how quickly things can change.
Wondering whether your mother has been on xeloda - it’s a chemo given in tablet form and often (but not always) tolerated easier than other chemos. You can also stay on it indefinitely. I was diagnosed with liver mets 20 months ago and initially had taxol and avastin. Although that shrank things whilst I was on it, (like your mum) within 5 months I had had a lot of progression within the liver. I went onto xeloda in May and it has worked extremely well for me - no evidence of disease on my last scan. I am now on less than half the normal dose and get some problems with sore hands and feet but very little else (no loss of hair, hardly ever any nausea). You take it at home twice daily for 2 weeks and then have a week off, so again it is more manageable in many ways. I am still working 4 days a week and though I do get tired, am living a pretty normal life.
Didn’t know whether it was an option you and your mum were aware of and might like to consider.
No, Mum han’t been on Xeloda before so I will make a note of this and ask the Onclogist about it when we next go. Thanks for the advice and I am very glad to hear that this has worked well for you, its so encouraging to hear good news rather than bad all the time. It’s also good to hear that this chemo is often tolerated easier than others, I think the problem is that as soon as chemo is mentioned, Mum immediately thinks she will be ill with nausea etc and also the hair loss.
Many thanks again and I hope you continue to progress well.