Hello first time on this forum.
I’m Anna,
How if you are very depressed, anxious and negative but trying to fight to live - some mixed up head - do you cope. I feel our family, me - we are in crisis. Told my cancer had returned - this time in lungs, small cell at moment? on 17 November. Since then so much fighting, phoning, searching to get help regarding alternative therapy, I just cant do chemo again, I cant, anyway consultant said let’s not do it yet, lets wait for next scan on 21st Jan to see how fast it’s growing. No-one believed I said it had come back yet again, (last time 2008, first diagnosis end 2005) but they said you are just anxious, it’s your anxiety.
Snow, Christmas, everything shuts, cant get hold of breast care nurse when I want her; I thank God that I have mental health counsellor who is wonderful, without her I’m sure I would in la-la land or dead, but I cant see her all the time obviously. But she, of course she would be, is very positive, I want to scream, cry, yell I’m going to die, I cant get a time span, all I know consultant said I could have 2 -3 lots chemo then thats it plus she said we’d be lucky to get 5 years. I cant live like this, please tell me how you live like this, the not knowing is horrendous… I have a new degree course to do, a family who need help, I need desperately peace in my head before I die. All this cancer researching is taking so much time, my very precious time.
Positively this week I have spoken to wonderful person at last at Cancer Options about Vit C intravenous and supplements and many other things - and wish I had found her before Chrismas - but hopelessly I feel how can we afford all this stuff to try and make me well. How do the logistics work when you are miles from the private clincs.
Anna
Hi anna -o
Welcome to the forums. You’ve come to the right place for support as many of the users of this site have a wealth of information and experience between them.
While you are waiting for replies could I suggest that you give our free helpline a ring on 0808 800 6000 and have a confidential chat with one of the breast care nurses who are here to support you through this, lines are open to Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
best wishes
June, moderator
Hi Anna,
My heart goes out to you and I know exactly how you feel. I was diagnosed with mets in my brain, lungs, bones and liver in June 2009 and felt desperate. I didn’t think I would see my 42nd birthday (Sept) let alone Christmas. The first month of scans, surgury to remove the brain cyst and then immediately chemo for the liver mets are still a blur. Slowly I have got my head around it with the help of my fantastic husband, some councelling, a very honest oncologist and lots of crying, shouting and laughing. I had 6 cycles of doctaxere which successfully shrunk my liver tumours. My brain reamins clear and I have no pain or problems with the bone or lung mets so my oncologist is not too worried about those. I am now on letrazole which if it is working ( I wont know for a few months) may hold progression for a year or 2. Slowly I have come to see that I may be around for quiet a few years yet. I remember how desperate I felt in the summer and empathise with you. There is plenty of support here and a thread that I find particularly helpful is the ‘anyone else with liver secondaries?’ There are lots of discussions about how we get on with life and don’t worry about not having liver mets, you are just as welcome.
Hi Anna
Sorry to hear of your secondary diagnosis, I understand how you are feeling and your post brought back memories of how I felt when I was diagnosed with bone mets in 2002 (primary in 1999). At that time my head was all over the place, my oncologist gave me a 2-3 year prognosis and all I could think about were the things I would miss when I died.
Everyone deals with their secondary diagnosis in the different way and I have a very supportive husband who has been there for me. I think it was the little things I did that helped. For me I’ve always felt I needed some control and to gain this I did things like decide each morning one thing I would achieve that day. It could have been something as trivial as ‘today I’ll make a chocolate cake’ (I enjoy cooking), or ‘today I’ll sort through my knicker drawer and throw out all the old grey ones!’ At the end of the day I’d felt that I’d achieved something and this gave me a small feeling of normality and control. Actually, come to think of it, I still continue to do this I just don’t seem to consciencously think about it. Treatment wise I did have chemotherapy at the time of my secondary diagnosis, which I absolutely hated, and started on Herceptin. Since then my disease has progressed, I’ve had more chemo plus radiotherapy, a vertebraplasty (to help stabilise collapsed vertebrae) and continue on Herceptin, Arimidex and bisphosphates. Life does go on and I’ve come to accept it for what it is, remembering that no-ones life is perfect.
Another things that helped me come to terms with my diagnosis was a week’s stay at the Penny Brohn Centre in Bristol (formerly the Bristol Cancer Help Centre). They look at complementary therapies to run alongside conventional treatment and during the week there I felt nutured and cared for and was given lots of information and tools to help me and my family. Their regime does not suit everyone, and I know they have many critics, but they helped me a lot.
I’m fairly new to this site but I know there are many others who have been living with secondaries for several years and no doubt others will reply and give you support.
I’ve rambled on enough, but hope my rambles are of some use to you.
With best wishes.
Judith
Anna,
you are not on your own,and I hope our replies go some way to help you get your head around what is happening. I was diagnosed with primary and lung mets in April 2007, and am still going strong despite some progression. I am on my first course of chemotherapy,planned by me and onc to happen over the winter so I can go back to hormonals/herceptin over the summer,and have a very good quality of life. There are dark days but also a lot of very good days.
I am very sceptical about alternative therapies that claim to cure metastatic cancer-I saw too many people spend their precious time and savings on them when I was a palliative care nurse,so please listen consider all the options with your oncologist. I have recently taken early retirement, and am spending some of the money on holidays-much better for my mental and physical health anyway.
Be kind to yourself, and take care,
nicky
Anna,
I feel for you so much and can completely understand your anxiety and panic at the moment and can remeber feeling so similar when my secondaries were diagnosed almost 2 years ago.
The answer is I don’t know how we live with it really but for me things have definitely improved with time. I also thought there was no way I wanted to go on chemo again after having it with my primary diagnosis in 2003.My onc. was quite clever in that he never said how many I would have this time and just said I’d have a scan after the first 8 weeks and there was immediate huge improvement so that gave me confidence and reason to manage more. I’ve now had 4 consecutive scans showing No Evidence of Disease (having been diagnosed in Feb 08 with secondaries in both lungs and in lymphnodes round my collarbone)and have been off chemo a year and just on Arimidex and Zoladex and have been so well over the last year. I’ve found a new way of living - it certainly doesn’t happen overnight but I agree with Nicky’s advice to do nice things and be kind to yourself. I’ve had to practically stop working save for a few hours from home a week but really live for the moment and have a wonderful social life and get lots of things lined up all the time so that I don’t have to think too far ahead. I am fully aware that things could change overnight and of course I have black days but really didn’t believe I’d be feeling so relatively normal nearly 2 years with secondaries. I too have been down the alternative route - you do what feels right for you but I know for me I’ve found far more contentment and been feeling better by going to concerts,plays,etc and spending quality time with good people. I don’t know how I’ll react when I become poorly again but I’ll cross that bridge when I come to it and surround myself with supportive people.
Thinking of you,
Take care,
Anne
Hi there, Anna, i know exactly how you feel and i am so sorry you are feeling like you are.
i was dx in april last year with grade 3 BC, had mx, chemo rads and now just started tamox. Rang work to arrange going back this tuesday just gone but guess wot, i have been told by 3 seperate people they are sure i have bone mets in my arm!!! i had an xray last week which showed a small leasion on my upper arm. They then continued to tell me it was in the same place as a leason showing on my CT scan i had done BACK IN MAY!!! would have been nice if someone had told me then.
I feel robbed!! why didnt i get 1 - 5 - 10 years free before it returned???
We are all gutted at the moment, waiting to have CT scan and bone scan in next 2 weeks with results in 3 weeks. This must be what turture feels like!!!
Any advice would be greatfully recieved, wont be back on till monday evening, going on a planned trip to centerparks tomorrow with 18 fantastic ladies off this site, let the drink flow is all i can say!!!
luv pauline xxx
Hi there Anna, and the other ladies on this thread, some of you I already “know” from the site.
I remember well the anxiety and stress you are feeling. I never thought I would still be here where I got the dreaded news of bone mets in 1999. I had my original diagnosis in 1989 when I had awful chemo followed by a mastectomy. But all these years later and I am still here. I have recently finished a course of chemo which was not nearly as bad as the first chemo I had and this time I had the chemo in tablet form, called Cappacitabine. I am off chemo now but am on other sorts of pills and painkillers. But I would try anything which would give me more time…chemo included. I was 39 with 2 kids when I was first diagnosed and will be 60 next month.
I know you are scared abut only you can decide which treatment you are going to have/not have. But I have absolute faith in my Consultant…after all she has allowed me to have more years than I ever thought I would have. It is hard I know Anna but whatever you decide there is a lovely bunch of ladies who know just what you are going through. I hope you find the strenght to get through all this. I am sorry that you have joined us, but we will support you all the way. Love Val XX
Hi Anna,
Yes I remember the panic, trying to be an expert about breast cancer in a day when our oncologists had taken years to begin to understand this disease. The truth is we all (those that want to know, that is), seem to have a mad rush on for knowledge at diagnosis time and then this steadies off. Knowledge is power i suppose - especially useful when we feel powerless. As for chemo, - well i am reliably informed that nothing is as bad as the first time, - and actually we all surprise ourselves in terms of what we can endure - i’m sure you are no different.
My onc has never given me a time frame - because as i am on herceptin it’s unpredictable, but your timeframe of five years+ - who knows what may get approved in this time.
I don’t know which part of the country you live in, but you may find there is a secondaries group nearby - try to get in touch.
Pauline i hope it goes well in centreparcs - this and other events like this is how we manage to live with this sword of damocles.
Thinking of both of you
Take care
Hi there,
Lots of great advice on here from some really positive ladies, center parcs sounds like a great idea. This is my 4th year of living with bone, liver and lung mets and have had a normal life for 3 of those years, first year was intense chemo which is never really nice is it, but been on capceitabine for 3.5 years and am fine - although got a stinking cold today!! Try your best to deal with any time frames people give you with a pinch of salt, we are all so different and it vitally important to enjoy life and try and normalize everything Go for it with your degree course, I finished my masters degree whilst on my taxotere - I don’t know how I did it looking back, but it gave me personally the focus I needed to move forward.
Seek the solace of others and every step is a step forward no matter how small.
Good luck and god bless.
Lisa (37 yrs old)
Hi Anna and everyone else
I was diagnosed with primary and bone mets in July 2009 I can remember the sheer blind panic and am amazed that it receded so quickly. The only thing is I tried to keep on as normal I work full time in a really stressful job. But found that I just couldnt hack it the way I used to. I have now decided to take some time off to see how my treatent goes. I wondered how other ladies further down the line have managed. I know some people get to NED status do you still feel tired I feel pretty wiped out most of the time.
Julie x
Hi there, we’re back from Cp. It was the most amazing weekend ever!!! For 3 days i nearly forgot was hanging over me. All the friends made sure i had a wicked time.
Back to reality…CT scan booked for next monday
Luv to you all xxx
Hi Pauline, great picture and so glad you girls had a fantastic weekend. Get that CT scan out of the way and I am sure you will feel better - as I have said before, to be told you have mets is dire - but once I got my head round it and read how many people live pretty normal lives I calmed right down and you will too - let us know how you get on and read some of the threads , they really helped me squash the panic, speak soon, love xDebbiex
Thanks debbie, i have my bone scan and ct scan booked now. Am more scared about what could come back on the CT scan!!! 2 weeks of waiting before i will find out the results. I dont know how i am going to get through them. At the min i feel like i have 50% chance of 10 years at best or 50% chance of …well who knows?
Not good options on either side…
Thank you for being there, pauline xxx
Hi, I don’t know whether anyone can offer me any positive advice/information? I have just been diagnosed with a local recurrence of breast cancer two years after my original diagnosis. I am awaiting tests but they do not feel that it has gone into other organs. I am absolutely gutted and worried about the future as I am a single parent with a 7yr old child. The doctors can only talk in terms of statistics whne you ask about prognosis and it would be wonderful to hear any positive stories that would help me get through this time.
Thank you
AJ
Hi AJ
I am sure your fellow forum users will be on here soon to support you, in addition I wanted to let you know about our helpline. You can call between 9-5 on weekdays and 9-2 on Saturdays, this gives you a chance to talk things through with one of our specialist nurses or trained helpliners in confidence, they are there to offer you further support and information. Hope this helps.
Take care
Lucy
Hi there, had a bone scan yesterday because of suspisious area on an xray on my arm, but guess wot they ended up concentrating on my head!!! found a ‘black area’ so sent me for a skull xray and a closer skull bone scan so guess what, my head is all over the place now. I have CT scan on monday and results EARLIEST time wed afternoon. if there not back i have to wait till a week on wed!!!
Might have gone out of my mind by then! Its the not knowing…
Luv to you all and thanks for listening, pauline xxx
AnnaO It has been a few days now since you started this thread and I wondered how things were just now for you. As you can see there are a few of us dealing with secondary problems and some of us actually feeling almost content. It doesn’t happen overnight. I remember feeling scared and I am not saying it is easy. But because of all we have been through, the life we do have now is so precious.
Pauline, I am sorry that you are having more added worry, thinking it was your arm that was the problem and now you have been having more scans on your scull. I hope your CT scan goes ok on Monday and that you manage to get your results this week rather than waiting yet another week.
To everyone else on this thread, I read your posts with great interest. Knowing that there are other woman getting on with life although they have secondaries makes me feel less alone. Long may our lives continue. Love to all from Val
Hi Pauline,
I thought I would post reply to you cos to have anyone looking at your head is so scary and hope my post will help you through the waiting time. My original dx was back in 1990 - so like our Val (Scottish Lass) I have been kicking this crap into touch for a good few years now. In 2002 I was dx with very extensive bone mets and it was fascinating to see the scans on the light screen back then. My skull was covered in perfectly formed black holes!!! It really is amazing how these things can happen without us even being aware of it. I am HER2 positive so eventually was put on herceptin when they checked back on tissue taken a few years earlier. I am also on a bisphosphonate drug which is used for bone mets. One year after that diagnosis I saw another bone scan and asked them to put the two side by side for me to look at. The difference was unbelievable - there are no black holes to be seen. Of course no-one wants to learn they have secondaries and I do hope that yours is a false alarm but wanted to post and tell you a bit of my story cos it does give hope. Good luck with the scans.
Dawn
xx
Hi anna
I have had secondries now for the 3rd time-my advice is not to read up on web sites etc as it will not help-keep smiling and live a normal life-easy I know to say, hard to do, I couldn’t tell you the names of my chemo/type of cancer because I am not interested. Yes we all take things differently. I am on another chemo now-tablet form and went back to my job today as an officer in the navy, that keeps me going.
I will you well and that your faith gives you the strengh to live life to the max