39 y/o Stage 2 now stage 4

Ok. I don't want to overdo the advice at this point, especially as I am not sure what part of it you want now and what part later. Not everyone wants to deal with practicalities or finds doing that helpful, but since you indicated this might work for you, here are a few other things.

While I was determined to beat this thing even against the then-given odds, I knew I had to take into account the possibility of some "worse case" scenarios: situations where my capacity might be reduced, temporarily or permanently; what if I die. So I then had to figure out if I wanted to give anyone power of attorney, both on the medical and the financial sides, to be activated if someone else had to act on my behalf. I also made a list of all of relevant passwords that might be needed if someone else needed to access my information, and made a decision who to trust this list to. The person I chose to act on my behalf medically received a detailed briefing from me on what I wanted, and also told to consult with one other specific person if certain situations developed. These could be applicable to anyone. Specific for myself, but also possibly for other in similar positions, was the question of dependents. I have raised enough children to populate a small village (only several were mine) and thankfully, other than one, they are all now independent. The one, though, was a concern. He is still fully dependent on me for everything, but would find himself in a really bad situation if I expired at any time. So now I had to figure that one out. 

In a way, dealing with practicalities associated with the possibility of worst case scenarios helped me face these possibilities. Thankfully nothing dramatic ever happened, but at some point I figured I have done my preparation and felt ready to face whatever happens. (That does not mean I really was ready, who knows how I would respond if something does happen, but I felt ready, which was the point at that time.)

Moving away from the worst now. When it came to the medical side, I came into every appointment armed with a list of questions and issues I wanted to go over, and made sure everything was covered. I also had my partner on the phone with me for every oncology appointment, so he could listen in, support as needed, remind me if I forget anything, and basically be there without being there physically.

When it came to hospital stays, I made a list for myself of what I needed to take in with me, and had a bag half-ready at all times in case of needing to move fast (such as when I had to call an ambulance and they decided we needed to go in.)

I made contact with Maggie's, who referred me to their benefits adviser. She filled in all the forms for me, uploaded information when needed, and made sure I got everything I was entitled to, as well as several travel grants. 

At work, I told me boss I had cancer and was going to need treatment. At the time I did not share with him the stage or the prognosis, just focused on needing the time off, which he was and still is absolutely fine with.

Getting groceries and supplies. I found a couple of good online providers, and so, no one from this household has been in a supermarket in over a year now.  

I use Uber to get around, and most of the time they are reliable, but not always. In any case, knowing where to find a taxi when you need one would be good.

Ok.... this is starting to look like a booklet rather than a post, and I am probably inundating you with too much. So last thing for now is this: anything you don't understand on scan and test results or letters sent, ask the team to explain. You have the right to know about your body. 

Specific to treatment plan and surgery, there are questions that are probably good to ask to make sure you know everything you need to know, but that's for later.

Hi Greycats 

thanks for this and I have read it over and over and you are absolutely right. Once I started to try to be in a bit more control, I found things easier to process. I have definitely started looking into some of the more difficult scenarios. 

thanks again 

S

This is interesting. I seem to be waiting forever for them to decide whether I have bone mets. Its been so stressful allowing the possibly of a shortened life to touch my mind so deeply. I can't imagine how bad that would be for you for a year! What relief that must have been. I dont have a lot of faith in scans now. We really have to fight for ourselves in this. 

How did you deal with your fear?

I am not a great fan of scans either. Too much assumption and guesswork, it seems. 

At the time, I was not scared of dying, I was scared of leaving open ends and people in bad situations due to lack of preparation, so I focused on the practicalities. That is not to say I am immune to fear of dying, just that it didn't hit me that way at the time. I did feel a degree of sorrow thinking that I will likely not be here to see certain things come to pass, but mostly my mindset was concentrated on fighting back and beating it for as long as I could. 

Have you asked what is taking them so long to come to a conclusion? I really don't like that they are not coming back with answers for you.

Staff shortages due to covid. Finally got phone up today for my biopsy this Tuesday. Trying not to future think about possible 'miracles'! Anyway, at least I will know one way or another. I have a rare type, invasive micropapillary carcinoma which tends to have high lymphovascular involvement. The possible bone met is on the otherside of my body from the breast tumour and in an unusual place...the acromion marrow.

I've searched possible benign differentials but nothing quite matches. I guess they are not really sure either. Hence biopsy. 

How are you? I see that post I replied to was 5 months ago. 

Watch them. Good that they are taking a biopsy. As for benign differentials, when my five "mets" were taken out and examined under a microscope, they found the following: two lymph nodes, one hamartoma, one fibrosis, and one thing that was not benign but had nothing whatsoever to do with breast cancer. Since they are taking a biopsy, you will know soon.

I hate the covid excuse. Covid has been around for over two and a half years now. I told a hospital department recently that they have had plenty of time to re-organise with that as a factor, and that if they have not yet done so then their management needs a long, deep look into. 

As for how I am, still dealing with things, surgery again at the end of this month, and I have also gone back to work, which may have been a mistake. My breast oncologist tried to warn me that it was too early, but at the time I just couldn't face sitting at home any longer and really wanted to get back to work as it's part of what I see as my path to recovery. So I am struggling and feeling impatient.

I hope you will update here once the results are in from the biopsy, and I hope they come back fast with a report.

Not bone mets! Most likely Pagets disease according to Radiologist but not a big enough sample to determine whether pagets or not. Anyway, that was a hellish trip to possible stage 4 and back.

Now it all puts me at a 7 week break between 1st and 2nd AC chemo (same as your EC) which worries me. Also they are also going to drop the dose by 20% from dose dense to every 3 weeks instead of 2 due to side affects...mainly zero neutrophils and dizziness. Trust in those playing about with my life/ body is diminishing :(

That is just fantastic news! so pleased for you. xx

That’s great news Rader123, what a relief for you.
I’ve joined this thread a bit late, but to add my experience of this, I was referred (following CT scan) for an MRI on the spine as two spots had been picked up. I was terrified. They told me that the MDT did not think they were serious, but they had to go through the tick boxes (and I am glad that they did). MRI didn’t really give much more info, so I was referred for a full bone scan. In the meantime, I went for my radiotherapy planning session. The consultant told me that she ‘had wondered if she should still follow her plan based on CT results’ but she had looked at scan and was sure they were hemangiomas - she had seen them before. I’m sitting there looking like a rabbit in the headlights and just doing as I am  told. So I signed up for 15 rounds of radiotherapy with this cloud over my head. Eventually had the bone scan (I couldn’t go during radiotherapy) and had to wait for results. The consultant radiotherapist was right - they were benign hemangiomas. But it took nearly three months of CT, MRI and bone scans to get to the bottom of it - however I am glad they were thorough. 
As a side issue, some years ago, and following routine tests, my dad was told that he had a spots on his liver. He was told they were secondary tumours, but that they couldn’t find the primary cancer. Further tests revealed that they were not - I can’t remember exactly what they were, but I just thought to add this bit of info. 

Yes I think they scare the living daylights out of us unnecessarily. There are ways of telling patients and there are ways not to tell them about suspicious findings. I'm glad they didn't stop your treatment while they found out. These delays of mine should never have happened. 7 weeks gap between my 1st and 2nd chemo. Plenty of time for my grade 3 cancer to grow and build resistance. However I do think my biggest weapon will be hormone blockers...as mine are 100% hormone positive.