good to hear from you...yes......we must expect more time xx
my primary was 2001, with 12/13 lymph nodes...bc affected......bc returned in 2013....liver and bones.
i know it's hard not to feel that trickle of fear at the back of the mind.....but there is so much more in our favour these days. Moijan xxx
Juma- there is a drug you can inject, which will boost your white cells and help against infections as a result!
gcsf or filgrastim...you could ask your onc. Xx
I know exactly how you feel Happy, bone met found responding to chemo when rescanning to check lung nodes (which are benign) Shocked at diagnosis but relieved it’s been found now. Having said that, I am still finding it difficult to come to terms with, and feel completely out of control at times.
6/8chemo done, then another scan and breast surgery. Haven’t seen the surgeon yet so don’t know what would be the best option (WLE or Mx) and whether radiotherapy is needed. Decisions also to be made on plan for bone met (high dose radiotherapy and/or surgery) Herceptin and hormone therapy then for the long term.
I guess it’s no wonder I feel so uncertain?
I hope your chemo went ok and your veins were willing. Good luck with the SE. Xx
How did today go? Happygolucky. (Love the name)
as as the others have said.....we are here for you.I was missed in 2000, mastectomy 2001, mets to liver and bones 2013 ish
looking forward to hearing how things are, when you are ready.
Moijanx 🤗 💚💚💚
It's a huge blow, as you say, to be given a secondary diagnosis - let alone a primary one. There are several ladies on the form, with various mets, who have had the 'double whammy' so they know what you're going through. It takes time to adjust to all of this especially the thought of having to continue treatment once you're friends (and fellow chemo ladies have sailed off) think you've finished and conquered all (as one of your other posts mentioned). However, you do have us so you are not the only snowflake in the globe (love that description) and we are all here sparkling with you. It is really tough at first and you do need to give yourself time to adjust to waht we call the new normal. The read that is most popular here is 'Bone mets, please join in' - even if you dont have bone mets. We hang out on there quite a bit although there are also other threads about particular treatments and also different mets.
I started off in 2003 with primary, then diagnosed with bone mets in 2008, then liver mets in 2013 - it's been a rollercoaster but I'm still here getting on with things. I found even with my primary and especially when I had my secondary dx and was on FEC chemo that I needed to plan some small treats for when I felt OK (mainly on my days off treatment and the side effects). Something to look forward to and then plan something a bit bigger for as and when you feel more able to enjoy it. As to hunt the vein, alot of us have had that delightful experience. Mine have pretty much given up after FEC destroyed them and I now have a portacath fitted which makes life so much better - and easier. Others have a PICC line - it might be worth considering even though it needs flushing every week? Once you've had your chemo presumably the Herceptin will be the subcutaneous injection every 3 weeks so at least you won't have to face the IV each time.
Anyway I hope treatment goes well today and you have your catchup, I actually liked going to our chemo ward as I used to have a nice natter plus someone made me cups of tea and brought me a sandwich for lunch. The nurses are all so lovely and I'm sure they are where you go. You seem to have a positive head on your shoulders which is good but expect a few ups and downs, we're here for you and understand what you're going through as we've all been there, done that, got the T-shirt!
Juma ..... Wishing you all the very best for the second opinion. In my first oncology appointment, I just sat there and listened - I think I, too, was just in shock ... not able to process the information, let alone ask anything or take any decisions. In the second, I worked through my list of questions, despite feeling a slight impatience from the oncologist. I have my third appointment on Monday, with the results of the new scan - and will go armed with a new list of questions. I find it hard to be strong and articulate, at a time when I feel desperately vulnerable .... but I think it's just what we have to do ... to have some sense of clarity and a modicum of control. Sending you love xxx
I agree ... it means the world to me to read these comments and sense the solidarity.
Juma - sending you love and support. I sense that these early days of diagnosis bring their particular challenges. Apart from anything else, I feel plunged into a world of unknown vocabulary and processes - within which it's incredibly difficult to have a sense of control. Everyone is different and needs different things, but, for me, it will help to have the new scans done and have more information, whether good or bad - as my own mind is not my best friend right now. Thinking of your.
Hi SML yes we often chat about other people's comments...someone said to me last year..'you are lucky with your cancer much more options for drugs...my mum has hardly any'. That b annoyed me...but they 'know not what they say' to quote someone miraculous...we must just plod on..say, 'I'd rather not discuss it if you don't mind' with a smile xx
they cant know what it's like and are mainly pretty ignorant.xx
Thanks, everyone. Having only been diagnosed in September and been completely fine until then, I find the severity and unknown of my disease and situation pretty much impossible to get my head round .... not knowing if any symptom I now feel means 'this is it' and I'll be checking into the hospice or whether it's about adapting to a new kind of life and having a few or many years to go. I have no idea how you're supposed to cope with that. I know some things can help - like I'm having a new set of scans done this week - but, even so, the unknown is just too much. And, yes, people have the best possible intentions, but don't always help. The 'breast cancer is one of the best cancers to get' and 'I have a friend who had breast cancer [stage 1] 20 years ago and she's fine' comments. I absolutely don't want to become someone who isn't empathetic to other people's diagnoses and difficult circumstances .... but I also need some understanding that I've been dealt a particularly harsh hand of life's cards right now and I need people to listen and understand without me having to repeat horrendous information time and again. xxx
Hi Girls, I wasn't stage 4 from the start. I have been in treatment for 12 years. I don't even try to explain that hormonal treatment is different from chemo. This is what I listen too! When do they think you will be cured? You can't possibly have been on treatments for 12 years! They wouldn't give anyone that much chemo (I guess I'm a liar)! How did you get 3 kinds of cancer (breast, lungs and bones)! You're just like my sister she had 3 kinds of cancer! Her sister had metastatic breast cancer in liver and bones and was an oncology nurse. She tried to explain metastatic cancer to her. She never could get it! Another person, I've never heard of breast cancer in the lungs! That doesn't sound right! I think you need another opinion! Why don't you come on a bus trip with me and a bunch of other ladies. We just walk around and enjoy the shops and take a few tours. GRRRRR this is after I told the person that I can't keep up with others. I walk slow and can't walk around all day! Is your daughter going to get her boobs off to prevent this? Questions are never ending!! FF
Thank you, Moijan ... it's so powerful to hear other voices. I just worry that, at the moment, my fear and panic are so strong I can't offer anything to others. However, it means the world to me to not feel alone. Thank you xxx
SML, please do not ever apologise for sharing....this is why we all post on here...by hearing about others it helps us, and also if we can share helpful hints or experiences, then that too helps us.
lovely to hear from you. I too am making excellent use of my local Macmillan centre......fear is a very tough cookie....the brain tries to protect us by pointing out all things that 'could' or 'might' happen...which of course isn't that helpful!
Thats is why sharing on here is so very valuable...it can help us find other possibilities xx
You might wish to try headspace...which is free at the basic level...which is all you need.....helps us stand outside our thoughts...makes them more manageable
Juma ... I just want to send you love and solidarity. I, too, was 'straight to Stage 4'. In September, I was absolutely fine, with no symptoms and just found a lump in my neck ..... then, scans and biopsies later, here I am with a diagnosis of BC, secondary in my bones and various lymph glands. I am going for a second set of scans this week - as I now have symptoms and the oncologist doesn't know if it's that my treatment (letrozole, palbociclib, denosumab) is stirring things up, or the cancer is getting worse. To be honest, I find it almost impossible to control my fear. However, I've just started going to a Macmillan counsellor and am planning to go to a support group. Sorry ..... I don't want to make things worse my sharing my own situation .... I just want to say that I'm thinking of you xx
Yes Juma, of course it does. The brain works overtime.....tries to protect us...would you believe?
hope you get sone peace...lots of love,
.....hello Juma....good to meet you,
My initial diagnosis was stage 4 ...2 1/2 years ago.....I had lumpectomy, axillary clear out, 6 months chemo. and a month of daily radio. I'm on monthly Denosumab injections and daily Letrozole. I've just had the 'no new mets' a few days ago. I still have quite a few aches and pains....arthritis related......but I'm alive and relatively well.....
Going back, I was shocked at being diagnosed at stage 4....but 'they' will tailor make your treatment for you....a day at a time....
All good wishes,
Good luck Juma,
theres loads of of us with mets and also with bone mets.......there is a thread 'bone mets, please join in' when you feel like having a look. I had my primary in 2001, but even at that time, bc in my lymph nodes in my axilla had spread to the tissue in the armpit, so I wasn't too surprised that it came back, to my spine and liver in around 2013
myself...I don't really worry too much about 'staging' as we are all different with pretty individual outcomes
to be honest, these terms are pretty scary and often don't mean much in the long run.
very best of luck, let us know how you get on...oh and there is a 'private group' on here you can ask the moderators to access you to join, 'secondary private Group' where the posts aren't public...if you want.
Treatment for stage 4 BC is usually less aggressive but can still be very effective. If BC has spread to spine it is classified as stage 4. I was diagnosed with primary bc, commenced neoadjuvent chemo and midway scan after 3rd chemo showed extensive spine/pelvic mets. Completed further 3 rounds of chemo at reduced dose, no surgery or RT, then put on Aromatase Inhibitor and IV bone strengthner. That was 6 years ago and I am still doing well. No cure (as yet!) but lots of effective treatments available to manage this almost like a chronic disease.
Your oncologist will taylor your treatment plan according to your pathology. All the very best to you.