The whirlwind so far...

Hello @Brainybunch, I noticed you saw what I told the other lady so no point typing it again here. It's a tough situtaion to be in, and no wonder you are feeling as you do. It can take some time to regain balance. Doesn't have to take long necessarily, but it's a very personal thing so give yourself as long as you need, especially as you are not only dealing with the news but also with the recovery from both surgeries. 

Prior to seeing the oncologist I would recommend deciding how much or how little you want to know, and make a written list of the questions you may want to ask (say if you want any suggestions on that.) If the hospital does not allow to bring someone with you but you would like the support of a family member or a friend, perhaps they can listen in over the phone while you talk to the oncologist, and if you permit, participate in the conversation as needed.

Do you have the contact telephone number and email address of your assigned nurse? If not, I would ask for that.

Welcome to the community no one wants to be eligible for. We are here for each other.

Hi Brainybunch, I’m sorry to read your story, what a shock you’ve had as this diagnosis keeps escalating. I wanted to share with you that I have chemo with a lady who has secondaries on her spine and has been living with this now for 4 years and lives well, works, goes out, looks great and is stable. She had to have chemo to knock it back and make it more manageable and now has treatment every 3 weeks to keep it stable, which thank god it has. None of us have a crystal ball mores the pity but I hope you have a similar experience. Anyway as Greycats says, there’s good support here for you, all the best XX 

Thanks GreyCats, I appreciate your reply and the advice you've provided.  My first appointment with the oncologist will be via video conference on Zoom or similar, where my breast cancer care nurse will also be part of it, and my husband and I will sit in front of my computer so it will as if we're in the same room together.  We will start making that list to which you refer.  We have so many questions, so we're bound to forget something if we don't write it down.

Thanks again for your advice and support.

Thank you Anna12345 for your encouraging words.  The crazy thing is I keep being told how great it was we caught it so early (the original lump, as there was no sign of it at all on my bi-annual mammogram 6 months earlier).  I'd hate to think what it would be like if we hadn't caught it so early.  The cancer on the bone scares me a little, but I've been doing some reading up (and so has my husband) on secondary breast cancer on bone, and apparently if your breast cancer does metastasise, it's better that it goes to bone rather than other organs as it's easier to treat.  Of the breast cancers that do metastasise, hormone receptive ones are the easier ones to deal with so, I'm painting my own silver lining on clouds just now, and starting a list of questions to ask, per GreyCats advice.

Thank you too for your supportive and encouraging words.  Hope your treatment is going well too.

It’s scary how quickly these things can grow, like you I’d had regular mammograms as I’d had a previous DCIS, my cancer wasn’t visible at all on the last scan either. I’m pleased you’ve found some encouraging information, it’s very true that mind set is our biggest weapon in all this thank you, my treatment has been very successful so far, mastectomy with diep on Thursday. Good luck for your appointment xx

Thanks Anna12345, had my oncologist appointment yesterday morning.  At least now I have a name for my cancer, which I finally asked for and committed to paper (memory isn't so great with Tamoxifen imposed menopausal symptoms): Invasive Ductal Carcinoma Grade 2 HER2 negative.

The bone scan shows 4 areas of cancer metastases - 2 on spine, and 1 each on pelvis and a left rib.

Bummer.

Good news is that while it's not curable, it is manageable with chemo. I'll be starting next week and thankfully stopping taking the Tamoxifen after this Friday morning's dose. I'll take a cycle of chemo tablets 3 weeks on, one week off (no IV initially) and will have another scan in 3 months to see if any improvement. If none, then l'll be put on other chemo meds; if there is improvement, then will continue, and at that same 3-month mark, will start 6-monthly bone strengthening infusions.

I'm taking a little comfort in the 'non-urgent' approach, and the confidence displayed by my oncologist and breast cancer care nurse in our 'Near Me' meeting yesterday, that this can be managed.

While the doctors are saying I may not be able to beat this, I think they're underestimating how tenacious (stubborn?) our family can be. Just as we're all having to learn to live with Covid, I am having to get my head around learning to live with cancer.

If my experience so far can teach any of us anything, it is don't ever ignore any changes. One thing I keep hearing is that it was a good thing I spoke to my GP within 24 hours of noticing the change. I'm glad we caught this one 'so early'. I'd dread to think where I'd be otherwise.

...and thank God for our Scottish NHS

That’s an awful lot to take in, it’s going to take time for you to get your head around it all. Now you know the plan they have though and you know what you need to prepare yourself for. As you say their confidence is something to hold onto, they always er on the side of caution so that’s an important signal to you that they feel they can do so much for you. The fact it’s HER2 negative as well is good news. Funny what now counts as good news in the new universe we all live in!! One thing I’ve found is it’s funny how we get used to a routine and how quickly our life feels ‘normal’ when it’s far from it!! Lots of love to you xx

You are now on my, "I like this person!" list. Don't tell the doctor, but I actually do think you could beat it. I am a great believer in the power of mind over matter, just a result of things I have seen. 

Thank you  

Thanks GreyCats.