after several days in hospital got diagnosed with this on thursday. Havent been well since december, cough, backache etc and generally feeling unwell. Went in to get my lung drained at hosp. where they carrried out further tests as they were suspicious. Starting chemotherapy on tuesday morning. Absolutely devastated to say the least. I am 36, married with a 6 yr old son. They let me home for the weekend still attached to this drain where fluid is still coming out my lung. I look and feel ill now, cant believe how quickly this has all happened. I am not goin to ask for time scans as i know everyone is different but i would like to know if there are ladies in the same situation and how is life living with this.
In a very black hole just now, feel very angry wondering how it has come to this.
I would appreciate any replies, thank-you. Max
I am sure lots of ladies will write to help you.
It is a very scary place when you get a secondary diagnosis. I had mine, almost 2 years ago.
When your treatment starts you will feel better and you will have some days when you feel normal, well a new normal.
As I said, there are lots of helpful people on this site in your situation. Some with very young children too!
sorry to about your recent diagnosis, i was diagnosed with liver secondarys in december 09, i only finished all my treatment 6 months ago and was told there was no evidence of disease and i had done well !! i am 39 and have 2 children ages 6 and 10 years , i was devestated and could not believe it , i am back on chemo and herceptin , it is a horrible place but a few weeks down the line i am tolerating chemo well and feel ok and determined to give it a good kicking !!!
Sorry to read that you are having such a difficult time, BCC have published some information about liver, bone and lung secondaries and further support you can access which you may find helpful, just follow the link below:
Hope this helps a little, please do also use our helpline for support and a ‘listening ear’ on 0808 800 6000, it’s open weekdays 9-5 and Sat 9-2.
I just want to welcome you to BCC. None of us want to be here but everyone is so friendly and knowledgeable, I think you will find it good to know that there are others out there who understand what you are going through.
Though I am older than you (50 now) I had my children late on, and when I was diagnosed with BC and liver secondaries, my daughter was just four. I’ve been living very well with this disease for nearly five years now though I’ve been on treatment pretty much constantly. Like you, I’ve never asked about life expectancy. I want to know a lot about this disease - but not that much!
I hope you begin to feel better after draining the fluid from your lung, and that the chemo treats you kindly - and works.
Max - I have been reading your original thread and am so sorry to hear that it has been confirmed as secondaries… I do hope the new chemo is kind to you.
Your situation is so like mine. I had my primary diagnosis and treatment in 2007 and felt fine until September 2009. Just like you I started with back ache on the Monday and I went downhill rapidly, by FRiday I was struggling to walk - 2 weeks later I started feeling breathless and was diagnosed with pleurisy by my GP and was sent for a chest Xray because of my history. The Xray showed shadows so I was referred back to my Consultant. A bone scan and CT scan followed swiftly after and in October 2009 I was diagnosed with tumours in my bones, lungs and liver.
To say my husband and I were devastated is an understatement. Like many women here I have none of the risk factors. Always been fit, lots of sport, not over weight, non smoker etc, etc, it doesn’t seem to make any difference. I also felt very scared as it had spread to all THREE places at once!
I started chemo again in November last year and have had 4 of my 6 treatments, number 5 is due on Monday. I having Carboplatin & Gemcitabine. THe good news for me was a scan after 2 sessions that showed that the tumours were shrinking - I hope that after another 4 sessions things will have improved some more.
So yes, I understand and am so sorry that you have had such dreadful news.
I’m really sorry Max what a shock for you. I’ve never asked ‘how long?’ I’ve been living with bone mets for over 6 years now. I know many with mets in the liver and lung who are doing well. I don’t know if it’s useful but there have been many times when I have found these words from Musa Mayer’s Secondary BC book helpful.
‘‘Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.’’
This forum is a very supportive place. It took me a while to get my head round having secondaries…one day at a time…Take Care…x.x.x
Hi Max - so sorry to hear your news - i have mets in liver and bones - dx i8 months ago - i know you will get support here from many - but you must be in shock - i echo what Julie and others have said - starting treatment helps - but meanwhile i send you much love, jayne x
Hi Max, So sorry you have joined this group but I am sure you will get lots of help and information from the Ladies on this site. There are many who have been living with this disease for a long time. I was diagnosed in June 2008 with secs in Liver, Lungs, Lymph and Bones 10 years after my original dxs and yes it was a shock and there are days when I feel down but there are days when I feel normal (a new normal as Julie says) and hopefully you will feel better when your treatment starts. Much love Lesley xx
Thanks for that quote, I think it is very helpful and puts into words in print what we are told by our Consultants. Often it is only the negative things that you remember, especially when you are tired or drugged up. This helps to reinforce the positive.
Thank you, I will send for her book.
Hi Sue and anyone else interested in the book. It is now unfortunately out of print and 2nd hand copies are usually hard to find or expensive but the author, Musa Mayer, has put a great deal of the book online to read…for free…here, on her advanced breast cancer website, advancedbc.org/content/advanced-breast-cancer-guide-living-metastatic-disease
If you scroll down the page I’ve pasted here the chapters are there to click on and read.
Really sorry that you’ve had to join us here on the secondary forums but I am sure that you will find a lot of support, knowledge and understanding here. As others have said, the first few weeks are really difficult but things do generally feel somewhat better when a treatment plan is given - for me it’s a bit like being in freefall until then with no idea of how to get any sort of control back. A treatment plan always gives me something to focus on.
I too heartily recommend Musa Mayer’s book - was lucky enough to pick up a 2nd hand copy just after my secondary dx coming upto 3 years ago (I “just” have liver mets although more recently I have new node involvement both in the abdomen and near the breastbone). I think the bit quoted by Belinda is so pertinent to the “how long?” question and the fact that some (unfortunately not enough) do live long lives after a secondary dx, can give you hope that you can too. What also has given me hope is the fact that many are still living pretty full lives with a good quality despite the rollercoaster of treatments etc.
I hope you find out about your treatment soon, that it works well and holds things for you for a very long time.
Hello - I too have secondaries in lung liver and bone. My primary cancer was diagnosed 1n 2002 and the secondary in 2007. I am now 55 years old. I have been on almost permanent chemotherapy since secondary diagnosis. Taxol - six sessions, then Capecitibane (2 years)and at present Vinoralbine and am taking Bondronat daily for bone strengthening. Though the various chemos have had side effects, in the main they have been overcome and I am managing to live a fulfilling life. There are treatments out there and hopefully you will find one asap that suits you. There is plenty of help and information available, but I have found that you do have to seek it out. This forum has a wealth of information. which is what I use it for mainly, but also there is emotional support as well if you need it.
I remember what a horrible place i was in at diagnosis 3 years ago with lung secondaries-I was 37 and my little boy was 3. This forum has been so supportive and I hope it gives you some comfort to know that there are women who do understand what you are going through. Take care of yourself and accept any practical help you are offered. Best wishes,
thankyou all so much for taking time out to reply to me. I am still in such a state of shock, that i cant fully comprehend everything at the moment. Glad to hear that many of you are doing so well after secondary diagnoses. Just want tomorrow over and done with so i know what the plan of action is going to be. All i know is chemo is getting started. Just feel absolute fear and dread.
Thanks again girls will keep u posted.
Love to u all xx
Wishing you luck for tomorrow, Max. Will be thinking of you.
Hi Max, Will be thinking of you tomorrow and hope everything goes ok. Love Lesley x x x
Hi Max only just found this tread and so sorry to hear the outcome for you.Thinking of you today, hope all goes as it should.
more purrs and kisses Wendy
Hope chemo is goin ok and you aren feeling too rough.
Im in the bones, liver, lungs club too. not a great club i admit, but you get used to fighting and thats what you must do
I have had bc for 7 years now (dx when i was 29) and in that time have had primary in my breast in 2003, then 2005 in my sternum bone, then 2007 double wammy recurrence in my breast so bilateral mastectomy/t4 spine in april and then dx in both lungs in november, then 2009 april spread to my liver and l3 in my spine and now been on capcitabane chemo since june 2009 which is (touch wood) shrinkin all my tumours. Altho get latest ct scan results tomorrow - so fingers crossed!
So, what im trying to say is there are many treatments available and have kept me going. im still working 4 days a week, albeit a bit of a struggle with tiredness, but, im leading life to the norm. So hope you can deal with this and FIGHT this too!
Take care xxx