Hi there. Firstly, of course im sending hugs. Im no medical expert but part of my mums  my mum secondary cancer is in her bones. This we were told cant be cured.....however....it can be treated with palliative care and can be lived with for the rest of a lifetime. This does of course depend on a lot of things such as tge redt of her diagnosis. I would suggest seeing her oncologist together. The gp may be able to give initial advice and be seen quicker but the oncologist would be the best detailed source. Much love to you x

[@J500]‍ thanks for the reply...she says she is due to see the oncologist again around October time after having the denosumab injections every 4 weeks so was hoping to get a better idea of what we're facing before then hence the GP appointment. Her friend came over yesterday and my mum said if they say the chemo will only be a 60/40 chance of getting rid of it then I'm not going through that again so I don't think they mentioned to her that it wasn't curable which concerns me as it will come as a huge shock to her as she's only 61 and although thinks she doesn't have the energy to fight again (this will be her 3rd round of cancer as she also had it on her vocal chords in 2011) she also has so much to live for (2 beautiful grandchildren who she adores) I however will back and support her 100% no matter what she chooses as I'm not the one who's body has to endure it. 

Monday cannot come round quick enough so I can find out from the GP if it definitely is secondary bone cancer and then get it explained to mum so she understands..might see if the GP can get in touch with the oncologist to get an appointment sooner so we can then discuss it further with him. 

Lots of love and hugs to you and your mum too

Xxx

It's tricky. I sometimes think that people start to tune out the unpleasant things and go into some kind of shock and denial. 

My mom had secondary cancer in her breast and in her leg (which I think was bone) and was told it wasn't curable. Even though I was there when the oncologist told her this, and she did seem to understand it, as the weeks went on she seemed to go back into denial. She believed that she was going to get some kind of radiation or something and eventually go home. 

I'm pretty sure your mums oncologist would have explained her situation to her. But sometimes they aren't super blatant in how they describe it. With my mom he didn't say that she was "terminal" and that was only going to live for a few months. He kind of softened it a bit, saying that she might be able to have some kind of treatment to slow the spread, but that she couldn't be cured. Eventually my mom forgot about that and seemed more focused on getting radiation and eventually going home. She had convinced herself that she was going to be ok. Or at least, she stopped thinking about it and mostly tuned out what doctors told her. 

I wish I had been more pro-active and asking doctors questions. But I left it up to my mum and she wasn't at all involved. 

I don't think the GP will be able to answer your questions. When my mom was in the hospital she dealt with a LOT of doctors (so many different ones on different shifts etc.) and I found that when I asked them questions about the cancer they really couldn't answer and would always tell me I should talk to her oncologist. 

You could always call up your mums oncolgist and ask him all the questions you have. 

As far as your mom refusing chemo, you would be surprised how people can change their minds about treatment. My mom said she would NEVER go through radiation treatment again after last time. But that was until she found out she had metatastic cancer! Suddenly she was quite interested in having radiation, particularly as she wasn't a candidate for chemo! 

I wish you and your mum all the best 

Hi there,

Sending you a big comforting virtual hug!!!!

Cancer Research have some information on secondary bone cancer that might be of use to you (https://www.cancerresearchuk.org/about-cancer/secondary-cancer/secondary-bone-cancer).  I don't want to worry you I only post it as it's obviously from a reliable source so it takes away any concern you have about the information you've read being wrong.

It's great that you're going to the GP with your mum, and your mum's experience of seeing her oncologist is a good reminder to us all to always take someone with us, even if we think it's a routine appointment, so I am grateful for that.

I understand your dilemma.  My mum had breast cancer for a second time 9 years ago now.  I know from previous training that her type does always recur in either the bones or the liver and also that having gone 8 years clear now it really is statistically a matter of any day...  I haven't said that to her, I don't know if she is aware of that aspect of the type of cancer she had, and I just make as much of the time I have with her as I can (albeit our previous positions are currently reversed and she's now supporting me through cancer).

Of course it isn't that simple because statistics are always based on the last 5-10 years of treatment and cancer treatment is continually improving and so are survival rates, so to consider your mum's actual prognosis now means having a look into the future to what survival rates will be published in 2023.

You know your mum, so you know if this is a conversation you can have with her and it might be better to have it prior to seeing the GP as I can't imagine a scenario where you ask that of your mum's GP without having given your mum a 'heads up' as it were.  Is there a chance she knows but is trying to protect her loved ones?  Might she be in denial?  Or is it a simple case of the fact you don't hear much after the doctor tells you it's cancer (we've all been there!)?  The other thing is that it's quite common to want to know how long we have to live, but that doesn't always mean it's beneficial.  Given your mum's previous experience she might have her affairs in order already (a good reason to need to know that your condition is terminal).  Again, you know your mum, so you're best placed to consider whether knowing (assuming she doesn't already) would change how she lives her life in a positive or negative way, or if she's already one of those people that just makes the most of each day she is given.

Sorry it was a long one, just some thoughts that went through my mind when I 'put myself in your shoes'.  But I would suggest that unless your mum is a vulnerable adult that you discuss with her first any questions you may want to ask her GP.  One way to bring that conversation up might be the simple fact that when you get a cancer diagnosis one thing everyone tells you to do is get together a list of your questions and take it with you to appointments.  You could prompt your mum to do just that and prompt for any things she might want to consider.

Hope there's something helpful in my chemo-brain ramblings!

Take care, and if you find it helpful please do stay on here for support through this time.

LJx

Thank you both for taking the time to respond. I am sure the doctor will have told her something about her situation but as you say perhaps wasn't as direct or to the point as saying terminal etc which is perhaps where the confusion lies. To be honest I think it is a case of her hearing it was cancer again and tuning out pretty much everything else he said. Apparently he told her it was cancer but wasn't cancer...i was like I'm pretty sure it either is or isn't?!? 

[@TwinTwo]‍ To be honest I'm not sure how she will take the info as much as she says she doesn't want to go through chemo etc again (made her really poorly and she suffered a heart attack while on Chemo last time) she's also got 2 grandchildren that she wants to see grow up so I think she will want to fight for as long as she can. We said yesterday we need to make a list of questions before we go to the GP on Monday so I think I will steer her towards asking the questions that need asking...what is treatment going to be? Will that treatment get rid of it? - at least then once she knows that it might prompt her to get an appointment with her oncologist soon that we can both go to to ask more in depth questions. She said she's got these injections every 4 weeks for the next 4 months (I'm assuming she's having denosumab from reading online to strengthen the bone) then having a comparison CT scan then will see her oncologist in October time...now she seems to think the CT scan will be to see if it's shrinking it and if it's not shrinking she'll need to start chemo but from what I've read online she'll need to keep up those injections until they're no longer working and the scan will be to make sure it's working and containing it in that one place and not spreading and she'll need the chemo either way...i don't know. Monday can't come quick enough just so I can get a definitive answer from a medical professional about what her actual diagnosis is. 

J xx

Hi J,

It sounds like you've got a good plan set up and hopefully that's helped calm you down a bit.  Don't know what the cancer but not cancer thing is, wonder if they're referring to just evidence of cancer cells rather than a tumour having grown (no idea obviously, it's the only scenario I can think of).  Hopefully what ever they're saying it means it's been caught early and treatment will give your mum a lot of time to see her grandkids grow.  My mum had heart problems with her chemo too so I'm really sorry your mum's had that complication too, I can totally understand your mum dreading chemo again even without the heart situation, it does seriously suck.

Just over 24 hours now and that will pass pretty quickly so I've got fingers and toes crossed for you all!

Let us know what they say.

LJx

Thanks [@TwinTwo]‍ I have no idea what the cancer but not cancer thing is all about to be honest my mum could've got the totally wrong end of the stick. I found a blood form in her bag for pre chemo bloods so I'm fairly certain it is cancer. 24 hours will go super fast, she keeps saying she fees bad because it's my bday tomorrow and said you don't want to spend your bday in the doctors with me...i was like be quiet I'm coming and that's then end of it!! 

I've made a list of some things I'd like to ask and am going to sit with her this afternoon and see what questions she has too so we can be ready for tomorrow. 

Thanks for your support and I will let you know what they say tomorrow. 

Jade xx

Thanks [@TwinTwo]‍ I'm trying to have a good day, the kids are keeping my mind occupied.

The GP appointment was a huge waste of time as there wasn't a letter sent from mums oncologist to the surgery so he had no idea about the diagnosis etc...he did say that the blood test she had last week (before the denosumab injection) showed high cancer markers. He wasn't very happy with how the oncologist had handled it so was faxing him a letter asking for an appointment for us to see him or for him to call us to explain the situation. Fingers crossed that will work but to be honest if we haven't heard from him by Weds/Thurs then I'll be calling the oncologists Secretary on Friday and asking for an appointment asap. X

Great to see your GP is taking some action for you, that should really help.

I saw my GP for the first time a couple of weeks after my diagnosis and he had actually just received notice of my cancer the day before, it does seem to take a bit of time as it has to be done by post.  It would be useful if the GP and Hospital computer systems were linked somehow but they aren't at the moment.

If they're saying "high cancer markers" then my take on that is they've found certain proteins present at a high enough level that it indicates there is most likely some cancer causing the higher production.

I'm just hopeful that your mum is one of those for whom treatment (albeit unpleasant) is bearable and allows her to continue on for many years having an overall enjoyable life with you and the rest of your family.  I've been in physical pain for 2/3 of my life now as well as feeling nauseus more days than not, but after a while you get so used to it you almost 'forget' and I go to work, see my mates, go on holiday and I do genuinely enjoy it all.  It is possible to be chronically ill and genuinely enjoy life so if that is how it has to be for your mum then at least it's better than not being with you all.

LJx