I’m sure that none of you will take offence when I say that this is a club I hoped never to join. i am 62, and I was diagnosed with BC 5 years ago and had lumpectomy, chemo and radiotherapy. I have been on Anastrozole ever since.
I saw my GP this morning after my CT last week. They have found secondaries in both my lungs and bones.
I am so frightened, and terrified that when I see the onc they will say that there is nothing they can do to help. I know that I won’t be cured, but I want to live some more and see my new garndson growing up
Hi Jayrand56
No offence taken, in fact that’s the way we normally ‘welcome’ ladies to our exclusive club - saying that it’s somewhere we’re sure they never wanted to join.
We all understand the fear and dread of the diagnosis of secondary BC (or mets as we call them). Some of us, lkie myself, have been living with SBC for many years and therefore are a bit more removed from that initial feeling however we all still remember what it was like (well, I do!) I was sure I was going to die pretty much straight away even though I was having chemo - that did make me feel like I was dying. However 10 and a bit years later here I am. I’ve had lots of differnt treatments over the years which sounds so awful but to be perfectly honest I have not suffered from the side effects too much and have breaks in between the harsher treatments with some kinder ones.
I am hormone positive like you are so will have have experience of the types of treatments that you will have. Generally hormone treatments do run out of steam but the fact that Anastozole kept everything at bay for 5 years is a positive. In fact it did the same for me, after I’d had my chemo, and kept my bone mets stable for nearly 5 years (my secondary diagnosis came nearly 5 years after my primary). There are plenty of treatments out there and pretty much all of them have been used at some point by one or more of the women on this SBC part of the forum so there’s plenty of experience, support and knowledge about what they are all like. I think all of us have felt it easier to cope with this diagnosis once we have a trearment plan in place. Don’t panic if it takes a while for your oncologist to start you on something, it often takes a few weeks. My advice for that time is get on and enjoy some treats, if you feel you can, beciuse after that it does tend to turn into a bit of a pain with extra hospital visits etc but this does calm down dpending on what treatment you go onto.
A lot of us, whether we have bone mets or not, or have other mets ‘meet’ on the Bone Mets please join in thread althouygh other threads can become very popular as well, particularly those for specific treatments. To join a thread you just need to be logged in and go to the latest post for that thread and hit ‘reply’ and it will add your post onto it, it doesnt mean you’re just replying to the last person. Be aware the forum is open and therefore anyone can read it whether they are logged in or a member so be careful what you write about personal details.
Good luck and keep us informaed of what your treatment plan is when you know or ask us any questions you might have before your next appointment. Someone is bound to be able to help.
Nicky x
Thank you so much for your reply. I am full of tears and trepidation but everyone is so kind x
Hi, I’m newly diagnosed, today in fact, so still in shock. I had breast cancer 2013, MX, chemo, radiotherapy and 5 years of tamoxifen and now its in my bones. I’m a strong positive person but this has crushed me and I feel like I’m on death row. I’m starting g a vegan diet, by way of distraction if I’m honest, to give me something to focus on. Start treatment on Tuesday.
Some better news I hope. My bc nurse rang on Friday to let me know that I will see my onc this next week. My scans were discussed at MDT. I asked her if she could tell me if I was a hopeless case- she replied 100% not, and that, as I hope, the disease can be controlled to give me the chance to get on with my life.
Until I know more I am still tormented with anxiety, and not looking forward to treatment, but I feel a glimmer of positivity.
My sleep is poor after around 3am, so I read through the forums on here for some reassurance that I am not alone
Thank you so much Ramade. My mind feels very powerful and morbid at the moment. You won’t believe that I work on mental health and spend my time counselling others!
Shock is an overwhelming thing x
Hello Jay
We all do the 3am wake up …I’m used to it …have a kettle in bedroom so make a hot drink, custard cream bicky and play or shop on kindle. .I find I then drop off for a few more hours Kippo then.
I find just laying there fidgeting doesn’t help and quite enjoy my ME time. . .
Good time for online Xmas shopping too !!!
Hi Jay am also a member of the 3am club , my mind thinks all sorts of things .look through all the forums too .Then tend to be tired during the day .There are lots of lovely ladies on here , who are so supportive, it has really helped me .Stay strong xx
JayRand56, Welcome! You definitely are not a hopeless case! My breast cancer mets were discovered in Nov 2005 at the age of 51! Ten years after my primary. This marks 13 years of mets for me. I have lung mets and Mets in chest lymph nodes. Possibly bone mets. One scan says bone mets the other says osteoporosis. Any boo, I’ve had chemo, radiation and hormonal treatment. I still work PT. I’ve done Very well with my treatments and truly haven’t had many side effects.
When discovered I was a basket case! Then one day I decided I didn’t want to be miserable anymore. That I needed to quit crying, smile and enjoy what time I was given! Do I have bad days? Oh yes, every now and then! You too will adjust, it takes time.
FF
I so love this forum. When I am awake with my fears I read your posts and it calms me. Thank you again for your invaluable support
We are real people here that understand fear and can relate to how you feel. .we all have bad days but do have a good day when we think we can beat this.
My mets came back after 11 years. .when i had totally forgotten all about bc …it’s sneaky .
Hi, i’m 58 and in similar situation so totally understand you fear.
Recent breast cancer recurrence, total right MX followed 2 MTHS later by positive biopsies on wound are most probably skin cancer. Tumours grew into my vascular/lymph system and chemo’s only thing to maybe prolong my life. Already had chemo/radiotherapy on this site. Surgeon was honest and said because of speed and nature it doesn’t look good and is quite rare. Covered in growths.
SO 2 days later and waiting for CT scan appt/results I’m in a state of shock, terror, disbelief and anxiety
Any ideas for coping except valium and gin and tonic!! Referral to counseling, 2nd opinion planned as Oxford are one of leading cancer specialists. Have great friends but no spouse or family so daunted by arranging the inevitable final stages.
Thanks if you reply, I desperately need to share
Ps you could ask to be referred to Royal Marsden London who may have trials. I saw a top oncologist there first time around.
I’m so happy to have found this thread. Diagnosed with met on the spine, I will be seeing the onc in 2 weeks and won’t really have any more details until then. So of course I’ve browsed google and it seems to just say this is a death sentence. I am hopeful after reading this thread that it might not be.
no fries thanks I know just what you mean. This thread has calmed me, particularly in the days before my treatment plan was in place. There are so many new treatments available; google is way out of date so don’t browse is my advice! My emotions are still all over the place, but I’m looking forwards again and allowing myself time to adjust. This is a safe welcoming space where people really understand the journey x
God im deparate to join this group 2 yrs breat cancer I hate life lol. My 2 daughters have just found out that they carry this atm tht I do, you feel like you’re act just made there life shit, it’s in my family and I was nxt in line and here I am same age as my mum was but luckily caught it early so just had to a double mastectomy im struggling to get to grips with it all how do we cope.x