Advice needed please! After reading through the forums I realise how ignorant I am about my own condition. I was dx’d in July 2009, after becoming badly jaundiced, with bc and mets in my liver with a couple of “bits” in my lungs.
I know nothing about the sizes/types of tumours, tumour markers, or any of the other “technical” stuff that is frequently mentioned on here, the only thing I do know is that I’m HER2 neg. This lack of information isn’t because I don’t want to know, more that it was never offered and I wasn’t aware that I needed to know.
My onc is lovely and approachable (for which I’m grateful) and I am confidant that he would answer any questions that I ask. So far all we’ve discussed is the treatment plan, Taxol to be followed by ovaries out and then a hormone therapy. The Taxol has so far reduced the tumour sizes by about 80%.
As I’m not prepared to be written off yet like many of you here and have young children (7&8) who I am determined to be around for for as long as possible, what questions do I need to ask to give me the information I need to be able to ask the right questions in future and to wave appropriate bits of paper about research/treatments under my Onc’s nose?
Any advice would be appreciated for my “Dummies Guide to fighting your corner”!
What kind of cancer do I have?
How far advanced is my cancer? (What stage is it?)
Should I get a second opinion?
What are all my treatment options?
What treatments are best for me?
Will I have to stay in the hospital for treatment? How long?
Will treatment keep me from doing certain things I enjoy?
How often will I be checked after treatment?
Can I go back to normal daily activities after treatment?
Are there any clinical trials that might be beneficial?
What has been your experience with cancer patients similar to me?
Can you recommend any patient support groups in my area?
Are there materials I can read about my cancer?
here are a few questions, take a note book and take your time writing out the answers don’t let the specialists fluster you
Hello Claire, I’m so sorry to hear about your diagnosis. I was diagnosed with stage 4 from the beginning in 2003. I’ve never asked the how long to live question but have asked about all other kinds of info and talking to others here has REALLY helped me…both for support and information. There was a really good book, now sadly out of print which helped me when I was first diagnosed. You can read chapters of it online here, advancedbc.org/content/advanced-breast-cancer-guide-living-metastatic-disease if you’re interested.
Good luck with your treatment…xxx
Hi Claire,
I would add some questions about what happens after the Taxol is completed in terms of being monitored, ie how often are they going to scan you? Are they going to use blood tests to monitor things (tumour markers and/or liver function)?
Also questions about surgery - there is some evidence that removing the primary tumour in the breast has benefits. There’s been a couple of threads about this.
I too have liver mets and have had SIRT on them (not available on the NHS) - you may want to ask though whether you might benefit from some targeted treatment for the liver such as radiofrequency ablation. Not sure whether there are similar targeted treatments for the lungs.
I have always tried to get some indication of how long they think the current treatment will keep things stable for. Often oncs are very reluctant to answer this as a straight question but I have found the 2 I’ve seen have been prepared to answer it as a “worst scenario vs best scenario”. I’ve found it helpful myself to know that but you have to be ready to hear that it might not hold things for very long (though clearly there would then be other treatments that could be tried and might hold it for longer).
I too found Musa Mayer’s book very helpful, Belinda, and do have my own copy (picked it up 2nd hand). Still dip into it quite regularly.
Belinda, thank you for the book link, I sat and read through the bits available last night.
Kay, thank you too for your reply. The radio frequency ablation on the liver sounds interesting, definitely going to add that to the list of questions along with the primary tumour removal question. I did ask about surgery at my last appointment but was told that it wasn’t on the cards.
My next appointment is next week … plenty of time to compose my list of questions with all of your suggestions.