Thank you so much everyone. I have taken on board all your excellent advice . I just hope I start treatment soon as the waiting is the worst part. I will keep you posted. X
Hi Spongrmom, the primary diagnosis is bad enough, isn’t it, but to have a mets too is a double whammy! I was half way through my rads when I was told I had four mets in my lungs. I was quite gobsmacked and really didn’t really remember what was said. However, the one thing that did stick was how positive my Onco was as to the treatments available to me. That was in early 2017 and I’m doing really well on Letrozole plus Palbociclib . I attend a secondary support group and I have met lots of ladies with bone mets. This diagnosis is not the death sentence it was. Treatments have advanced so much that there is a good life expectancy now. I’m not saying it’s without difficulties as your body has to tolerate more drugs, but it is ok. I do aqua 2x per week, plus TaiChi and gym sessions. I enjoy a full social life, and I manage my fatigue well. I did reach out for support and attended a sleep workshop , and a mindfulness course through my local Maggies Centre,
and lots of sessions with cognitive behaviour therapy. My Onco got me the cognitive therapy as I registered 20/21 on anxiety levels. This helped me to manage my anxiety over the diagnosis. Sleeplessness was my biggest enemy and you need to eat and sleep well to manage your new med regime. My TaiChi and daily exercise have definitely helped me combat this disease, and I will continue with the treatment as long as possible. My mets haven’t grown at all, and my Onco says he has plenty more treatments in his little black bag! 🍀 Lucky to be living at this time. Good luck with everything. X
i am one of the ladies who had a stage 4 diagnosis all at once. I had a pain in my hip/leg and ended up being told I had mets in my pelvis. The lumps in my breast were buried . Oh to have mammograms at a younger age.
I was only 50 so a real shock BUT I have had masectomy and hormone tablets and 2 and a half years on an living a normal life. I get scanned every 12 weeks and my results are due next Tuesday so starting to fret a bit .
I work full time and my husband and kids (grown ups) are excellent.
once you get a treatment plan you feel more hopeful and cope better.
You don’t realise how many of us three are in this gang . There is a lady I work with in the same position and my sons friends dad has it too but new treatments are bring us all hope.
Hope my post makes you feel a bit better
I certainly know that feeling! Nov 2013 I went to my gp with a small lump which varied in size all the time so the gp was pretty sure it was a cyst but said to be sure I should attend the local one stop shop Breast clinic at the local hospital. I didn’t realise at the time that the very slight inverted nipple was a bad sign. The lump was a cyst but they biopsied the nipple area and lobular cancer was diagnosed Dec 20th 2013. This hadn’t shown up on the mammogram I had had a few years earlier. More tests later and it was found in my liver too, later a tiny amount in one rib was also found. Lots of treatment later and a mastectomy which I demanded although they were initially not wanting to do it so I got a second opinion, I still feel well never had any pain and only felt slightly ill by the treatments itself. I no longer work though, but I did work for the first three years. I’ve had two hormone and am on the fourth chemo but I keep going! Two years ago I bought myself a horse! I’m on a treatment break now so I’m off to visit him today for a week. For me equine therapy works! As does family support. Once a treatment plan is in place you’ll feel more able to cope. You can’t fight this disease but you can learn to live with it and best to stay in the moment a bit of a cliche but life is terminal after all. You’ll find you can plan things ahead for a short time at least when you know the schedule of the monitoring scans. I’ve also found that the oncs are more than happy to accommodate key events birthdays, weddings etc and tweak treatment timings accordingly. So make sure you tell them! Good luck! Sianx
We have all been there so completely understand the shock you are feeling right now. Many of us SBC have our secondary diagnosis some years after our primary but others have, like you, had the double whammy of both at the same time. Hopefully one of those ladies will see this and add how it feels to have that double diagnosis. As it is all of us SBC ladies know just how awful it is to be told you have secondaries and most of us don't know anyone who has had this diagnosis and therefore you will feel very alone. You have come to the right place for support as we can offer advice about treatments that you will discuss and eventually be on plus it's a place to rant if you want. Family and friends will also be struggling with this but probably not be able to help in a practical way as they also are likely not to have come across this before. It is totally devastating to begin with so allow your self time to adjust. Most of us would say don't use the internet to search for outcomes etc all the facts and figures are way out of date. However you can use it once you know what your treatment plan is if you want to find out more about that specific treatment. You will have lots of questions to ask your oncologist so it might be worth taking someone with you to your appointments, at least at the beginning, so you can understand what is being said. There's alot of terminology you won't have come across before and also the drug names. There have been many new drugs that have come out over the past few years which have extended the effectiveness of drugs that were already being used and there are always more in the pipeline. I have been living with bone mets for over 11 years now and although I have had to change treatments during that time I have been able to get on with my life, have holidays, work (when I wanted to a few years ago) and generally not let this horrible disease be the first thing I think of every day. It takes a while, as I've said, so give yourself time but you will find a way of living your new normal.
Hi Spongemom (great name by the way!),
it is such a shock isn't it? Everyone copes in different ways, and there is lots of help on here, you have come to the right place. I am a week on from being diagnosed with secondaries (mine is in lymph nodes, which I think is quite unusual) and still reeling from the shock. When I got my primary diagnosis, 11 1/2 years ago, I coped by having the treatment plan, I haven't got that yet, but know that I will feel better when I have it. I also used the forums on here a lot as no one understands like others going through similar, and forum members did have practical suggestions which helped, especially to deal,with symptoms caused by chemo.
Have you got a treatment plan yet?
There is a bone mets thread on here which might help you.
All the best
Hi Spongemom,welcome to the forum .Im so sorry you have had the double whammy of a primary and secondary diagnosis at the same time .Im not a secondary lady myself but I'm sure the ladies will be along shortly to give you some advice and support .There are ladies on this forum who have been living with a secondary diagnosis for many years -some for 10 years plus and still living life to the full and new treatments are bringing new options and hope as well .Best wishes Jill x
Hi everyone, I am in complete despair. 3 weeks ago I went to my Gp with a slightly inverted nipple, wasn’t really concerned. Yesterday after usual tests etc they told me I have it in both breasts and it has spread to the bones. How does someone cope with this ? My family are wonderful but I just feel sick and numb and I cannot imagine looking forward to what will be a short life.