I have secondaries and I think the time when I decide whether or not to go forward with further treatment is if my quality of life is worse on treatment than off it.
Until that time I’m still going to grasp at whatever is offered to me - I might be changing to a different chemo soon so that’ll be another hurdle to get over and how that might impact on my general wellbeing.
I think, as Nikki says, you make whatever decision is right for you which might not be right for someone else.
I too don’t have secondaries and currently under the chemo cloud!!! however, I know what you mean. I came out of the first chemo and within hours I was really ill and asked myself how I can take myself back another 7 times for them to posion me again. I know there are always people worse off - (not to offend anyone - but I keep getting told this - like I will feel better that someone is more ill than me- mad logic eh!!)
I have already written off 2009 and its not even started yet. I hate all the positive people who expect me to smile all the time - this is just me feeling down and don’t want to offend the positive people on here - at least you understand the low moments. I hate that my life has been sucked away and everyone gets on and I am in limbo. I have spent the last 2 years in and out of hospital for my son and hated every moment being stuck to the routine of the hospital, back and to for treatment and surgery and they were wonderful with him it just took over our lives and now this happens and my life is appointments and treatments. sorry for my rant, I will go and lie down now!!!
Vicky.xx
I would echo what snottrags says. For me my prognosis is good having removed all the cancer in surgery, however after my first chemo, I tld my boyfriend that I didn’t think I could continue the treatment. That said now I feel normalish again, I think actualy I can do that again. I have too said if it comes back I would consider my options, saying that I am only 30 so I think my age should (god forbid) it comes back, and what I have achieved would decide for me,
We have a horible thing, I cancelled my holiday of a lifetime for our joint 30th birthdays for this, have PCOS anyway, and now told I would probably never have a baby, if I’m genetic may have problems adopting, had physical changes going on as we all have. We have all had so much to deal with in a short space of time which change the rest of our lives.
I like to think i am positive but even the positive people have bad days. When you cope people expect you to be a wreck when you are not coping people want you to be positive - you can’t win and its extra pressure when you don’t need it.
I can so identify with these feelings. I have just finished chemo 4 FEC & 4 Taxotere and will start rads after christmas. Also just started Herceptin which will continue until October next year.
I thought I was healthy before this. Now I feel I have aged 20 years. Before this I was a young 56 and fortunate to have no major aches or pains - nothing that stopped me from what I wanted to do. Now my legs just dont seem to work. I get very tired.
The thought of another year of Herceptin is terrible but I take it in the hope it extends my life and I also think of those that campaigned to get it available for all. I felt further down at the last Herceptin when chemo nurse said I really dont think we are going to be able to keep getting a vein until October next year and you should think about having a line in. I was then told a nurse would need to come every week to flush it out. How can you plan anything then? A holiday would seem out of question. You would need to stay in for the nurse. I was seriously thinking of no more Herceptin if that is the case. If I really knew it was working I might feel differently.
I have already told OH I am having no more chemo if it comes back. The taxotere I found terrible. I had no quality of life for four months. Just waiting for side effects to kick in and no treatment for them. And I count myself lucky from what I have heard of others. My bloods held up.
At the end of the day I feel whether to have treatment or not must be a personal choice. I feel I have been lucky to have had 56 very healthy years. I feel life should be about quality rather than quantity. If I am living at a hospital, am tired all the time and no real zest for life anymore then what is the point.
I feel desperately that help should be given to us all during and after treatment to get fitness back. Some people are lucky to get offered counselling. Others not. If you have a major heart operation or similar advice is given on life style, diet etc after op not so for bc patients. Considering what our bodies are going through it is no wonder we feel so down and unfit afterwards. I realise it will a long slow recovery.
I thank EACH & EVERYONE OF YOU so much.
Seriously, it means a lot to me that you have all taken the time to answer and some of those answers not easy to write. The great thing about all of you on this site is that because everyone has had a slightly different journey and all had "personalities"before cancer, the comments/ideas/advice cover a real cross section.
I need to re-read and think carefully about what each person has said…but on initial scanning it makes me hopeful as there are obviously lots of you who have had thoughts in this vein…I really did feel it was me “losing it”.
I had a bad morning at another clinic this morning and as a result have made an appointment to see my BCN- after having a brief chat she did comment that some people who deal initially well at dx and then seem to cope really well with everything do have a delayed reaction and reminded me how well organised and unsurprised I seemed at the very beginning and another nurse told me that some people unwittingly block that initial anger and turmoil but it still needs dealing with further down the line so I hope that this IS yet another “phase”.
A couple of the comments that jumped out at me, from pinkdove and starfish about quality of life and balancing that out seem to sum up how I feel.
Once again I thank you for all your replies…some have been edited so I won’t have the benefit of the total effect some of you were conveying,
My best wishes to you all ,
V. xxx
Lots of interesting comments here, but I really would urge caution. Try not to dwell too hard on the ifs and whens. It could be that it may never happen-but let’s assume for a moment, that it does…(I should say that I was diagnosed with mets to pleura/liver/bones a year ago, 12 years after the original BC )
I really don’t think that at this stage you can make a definitive call on how you would react. The human spirit is such, that it wants to survive, even under adversity. I don’t know how old you are, but I think the only way I would be considering no treatment would be under the following situations:
Let’s assume that you do have a recurrence-“X” years distant. So many new treatments are coming on stream so regularly, with drugs that can manage the side effects quite well, that there may very well be something which could extend your life for several years or longer.
I can see why you’ve been having these thoughts-it’s a hard road to walk-but, please, don’t let it take too much of your time. I feel that cancer steals enough from us in a physical sense, that if you allow it to dominate your thoughts too, it really has won.
Violetta, thank you for this thread.
I am not up to articulating much at the moment but can I assure you that you are not alone in feeling this way.
Thanks ElaineD,
I was trying to think how I could write without offending anyone but you put it beautifully!
I have mets in lymph,liver,lung and spine and I want to enjoy the time I have left while I’m feeling moderately ok.
I know everyone is different, with different outlooks on life, but for those with primary cancer I really do think that you should try to be positive and not dwell on what might be.It’s like wishing secondaries on yourselves.Just get out there and enjoy your lives!
Dear Vicky,
Your life hasn’t been sucked away from you if you’ve got primaries.You need to stop dwelling on what might or might not happen to you in the future and get on and enjoy life for your sons sake.
Not everyone gets secondaries anyway.I’ve got two friends who’ve had breast cancer-one 30 years ago and one 13 years ago and they are both fine.
Best wishes,
Alli x
Hi Violetta, sorry you are feeling like this. Having a dx of bc is life changing. Hospitals appointments, treatment etc take over your life. For me finding the lump was the end of my old life. I will never get that back sadly. I will always have this underlying fear. I wish I could forget about it but I can’t. I would, I know always have treatment because my children would not deal with any other decision. I am too afraid to get complacent in case the ‘gods’ turn on me. I actually deal with it better this way. For me it is when not if it comes back. I would love to forget, just for a day. I must mention that I was treated at Christies and went to my muga scan at, I think it was Wythenshawe. They told me that they couldn’t scan during the day as the scans were not funded by the health authority. Christies paid so, in order not to take the appointments alloted to those patients they therefore had to be in the evening, unless there were some empty slots. I found it a pain travelling to Manchester at teatime, and if I’d used hospital transport they would come for me after 12.!! My moods were very changeable and herceptin did cause me a lot of fatigue especially as time went on. I am now feeling a better but still a half empty person ha ha. You may feel different again a few weeks down the line take care. Love Eileen
I agree with ElaineD. I had nearly 10 years of good quality life from my primary diagnosis to secondaries and am so pleased that I got the most out of them.
I’ve had three different types of chemo (and might be starting a fourth) but for me each one has been so different in how I’ve felt on them. The first one (FEC) just floored me and I couldn’t work for 10 months, then I had taxol which was slightly better than the FEC and am now on Xeloda which, for me, has made so much difference.
Even now, while I feel relatively well, I’m determined to make the most of my time because I’ve been in that very dark place when I was told I had 3 months to live and I’d hate to look back at my life and think ‘if only I’d done that when I could’
Its bad enough when people who don’t have cancer tell people with cancer to ‘not dwell on it’ etc but when people witrh cancer do it to others with cancer quite honestly I want to ring your necks.
Everyone is different and for some people reflecting on the ‘what ifs’, being scared, is a part of the complex business of living with and after a cancer diagnosis. There are no ‘correct’ ways to behave though oh boy in cancer culture there are many holy cows of judgement set up about the ideal way to behave…ie. smile, look good and have the time of your life.
Breast cancer is in any case a very diverse disease…many people, particularly younger women, with primary disgnaois don’t have the luxury of 10 years before rceurrence, get secondaries very quickly and die soon afterwards. I think anyone with a not so good primary diagnosis knows this and is scared…I know I was. Others of course have a much longer gap between primary and sceondary diagnosis and then quite a long time living with secondaries. Others again are, like me, somewhere in the middle. I remember that by the time I got to 2 years after my primary treatment finsihed that I was feeling less scared, more cautiously optimistic…then when rceurrence happened I was thrown back into the nightmare I had originally anticipated. I did a lot of nice things in my well time. I also worried about cancer returning. I don’t think it has to be ‘glass half full’ or ‘glass half empy’…its more about glass needing refilling from time to time. I think what each of us tries to do is hold fear and hope in our hands at the same time. We certainly shouldn’t start telling others what is the best way for them to behave or feel. Sometimes the drak place is the only place to be.
We worry about the future and remember the past because each of us is human.
Jane
So I suppose that’s my neck well and truly rung then isn’t it!
Oh no Allicat…I do gentle neck rubs!
Jane
Allicat we are on here to support each other,your comments and opinions are as relevant as anyone else’s,we are not here to be told off by people with different opinions.
Violetta asked for comments and you kindly gave your opinion,and i for one agree with what you have said.I am on a primary diagnosis myself and some days i’m positive other days i’m not.
I think a lot of people will have felt when undergoing treatment that they wouldn’t do it again,i know i have,but the wonderful thing about life is that it doesn’t stay the same forever,and i like to think that if i’m ever in that position i will make the choice that is right for me,not because somebody else wants it for me
Some days I think what will be will be,I cant change it.Other days I feel scared and think what if.I hate being told by family and friends to be “positive”.My oncologist says hopefull which I like much better.When I was having treatment I said I would never do it again.but I think that if it came back now I would take any treatment offered.
love and best wishes Mellx
As another who has had her neck well and truly rung, I’ll be keeping my thoughts to myself from now on.
Hi everyone…
Please don’t have any “oral fisticuffs” on my account! I really do value all your comments and they are all valid and valuable to me and I think judging from the comments that others ,after us ,may see them and be helped by the diversity of the replies.
That’s the beauty of this site that people who understand most what a rubbish position it is to be in … a real sword of Damocles job…are the ones who can comment without fear of reprisals- it is a horribly emotional way of life sometimes for all of us .
I suppose I could have worded my original question a little differently but I guess that there still would have been many different “angles” and comments to that too. I think what I needed to see was that if 20 folk had written exactly the same comment then I would have used that as a yardstick to see if I was way off beam ,
love to you all,
V.
Hi all, well I now have secondaries and am able to meekly accept all the treatment thrown at me, I just think of how terribly painful it will be to say good bye to my family when the time comes.
I was badly depressed for a long time, suicidal and not at all in my right mind, despite getting through initial treatment at first diagnosis cheerfully. The trauma came after treatment for me.
Looking back now, I suspect it was the Tamoxifen, which stopped my ovaries very abruptly. I strongly believe that suddenly depriving the female brain of oestrogen can cause depression or mental problems. Unfortunately the hospital gave no recognition to this and even suggested i was imagining it, which just made me much worse.
It gets better with time, perhaps some counselling would help. The BCN should be able to help, just try not to hide it as I did and do not do anything you might regret later.
Hi all,
was told by so many how well I coped with intial dx etc, which annoyed me at the time, cos I knew I was in shock/denial / had no blinking idea what was going on!!!
For me too the year after treatment was emotionally and phsyically harder than i expected. So I suggest be kind to yourself, get help if you need.
Take care,
xxsam
I w
Reading your post Jane I know I have been ‘lucky’ to have nearly 10 years remission where some people don’t but it also doesn’t mean that I’ve been scared and at times very down.
I’m back in that scary place as Xeloda looks as though it might have stopped working plus they are checking to see if I have meningeal disease so although I’m ‘living well’ re symptoms at the moment my head is all over the place.
Yes, it is a very complex disease because it’s not only about the cancer itself but also the psychological affects and a lot of us don’t get the support we very often need because of the gap between oncology and palliative care. I know that’s probably not the case for every hospital but it certainly is in my area.