i feel compelled to reply because I recognise what you are going through right now. I had the same sort of hellish shocking experience last June, with diagnostics tests and meetings with surgeons and oncologists revealing increasing bad news. It is devastating, and I remember feeling completely numb and couldn’t bear to be hugged touched! But......things do move on once you start treatment....people on this forum always say that and it’s hard to believe when you’re in the early days of diagnosis, but it is true.
it seems that cancer treatments are back in the mix, now that the NHS has capacity and treatment is good these days. You’ve just got to get through these next few weeks as best you can.....and yes, I think it does help to get your affairs in order, it gives you something useful to do, puts you in action mode and is quite satisfying when done.
good luck with everything
It is, and was, a huge shock when all of us secondary ladies found out that our BC had returned - we do all understand how you are feeling right now as we have all been there, even if it was some time ago.
Life is difficult with this diagnosis at any time but at the moment with COVID19 it is even worse as you can't be close to the family and friends who would have helped you through your primary diagnosis.
It is good that your hospital is continuing with seeing referrals and dealing with scans and what to do next. Some hospitals are reducing services but many are continuing and a lot have moved their oncology departments off site (if they are normally based in the general hospital where COVID19 patients also are treated). This should mean that you will get the treatment, particularly if surgery is involved, however that is something you will find out at your next appointment (whether thats face to face or by phone again it will depend on your own hospital).
I don't know what will be the outcome but almost certainly some form of Herceptin based treatment will be used going forward but that could be after any surgery is done. In almost all cases of secondary BC the receptor status is the same and anyway the biopsy will show the receptor status in the lymph nodes so you should be on the same type of treatment as before which involved herceptin. This can be an issue if there are heart problems, caused by having herceptin, however there are specific cardio-oncology units set up that help with this notably The Brompton In London and I think elsewhere. This is NHS treatment that diagnoses and then treats and protects the heart by medication (normal heart meds). You can get a referral from your GP or oncologist but I have no idea at present how the referrals are working at the moment.
As to getting support to be honest secondary BC nurses are not in every hospital so it will depend on yours as to what support you get from the hospital however places like this give support as do MacMillan etc.
And as to is it worth it? Then yes it is. Lots of us have been living with SBC for many years (I have for the past 12) so the treatment is worth having. No-one knows exactly how our own BC acts so there's no definitive time scale and its not helpful in most cases to either ask your oncologist or for them to tell you (and for that reason don't Google any stats - they are way out of date and too scary to contemplate!)
It is a huge shock as we all know so give yourself time to deal with it, we all do eventually but we all do it in our own time, there's no magic answer. However most of us have been able to deal with the diagnosis once we have a treatment plan in place and know what to expect and how it will be dealt with. These are also not set in stone, they vary so whereas you might have a particular treatment others may have things in a different order or a different drug. Your oncologist and the MDT will determine what is best for you. If and when you feel like looking on the internet at that point, or some point in the future, (I have found it useful to understand those treatments) but only in the context of you, not the general public (which is why stats online can be so scary)
I hope this helps. The forum here gives great support and there is almost always someone who has gone through the same treatment that you will so can offer practical advice. You may need to search to find a thread that is particularly relevant and you can post on that by just hitting 'reply' to the last post seen. Some posts might not be relevant depending on the treatment you go on to.
was diagnosed with primary in 2016 , grade 3 her 2 +. Nodes involved, mastectomy , chemo herceptin and rads. Ended up with neutropenia sepsis so chemo reduced a bit then herceptin had to stop as it was damaging heart 12/18 found out Friday it had spread after going to breast nurse concerned about increase in Lymphodoema in arm,Biopsy and scan and yes it’s back full scans ordered. Friday night ended up in a&e after been woken by severe chest pain, anyway scans show nodes all lighting up ( had a lot removed in 2016) chest , breastbone shoulder lymph nodes and mets on lungs . ( ward doc commented lymph nodes were tiny but to be honest if it’s spread it’s spread regardless of size) Kind of numb appt with breast surgeon wednesday as per original plan MDT talking about me wed morning , but what can I expect . I’m doing the must get everything in order regardless of what time I have, that’s prudent. Do you still get the same support when it’s secondary ? This covid happening are people still getting treatment, is there any point ( sorry negative moment there) Don’t know what to say to hubby who is being fantastic again, don’t want to make anything worse than it already is . Sorry rambling post as I get my head around where I am - Ann