The Difference Between Metastatic Breast Cancer and Terminal Breast Cancer

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For those who are unfamiliar with the Stages of breast cancer,  I'll give a summary:

Stage I is when there is a malignant lump which is within the breast and is smaller than 2cm

Stage II is when there is a malignant lump within the breast which is larger than 2cm

Stage III is when the cancer has left the breast and invaded one or more lymph nodes

Stage IV is when the cancer has invaded other organs, usually lungs,  liver,  brain,  and/or bones

Stage IV is also referred to as Metastatic because the spread of cancer is called metastases.  It's also referred to as Advanced breast cancer.

Stage IV does not become Terminal until all treatment options have been tried and have failed.  Some people confuse these two Stages but it's important to note that, while some with Stage IV can live for some years if they have the right treatment, it depends upon other factors how long their life span is after diagnosis.  Some breast cancers are more aggressive and less treatable. The form of breast cancer, hormone positive breast cancer,  that I have, is the most common and the most treatable one, for which I'm eternally grateful.  About 70% of women have this form.

Within the Stage IV group there are some who are experiencing a recurrence of an earlier breast cancer and there is a less common group who are diagnosed for the first time with Stage IV breast cancer, called De Novo diagnosis.  This is what happened with me.

There would be very few women who are not shocked, horrified and frightened when they receive a diagnosis of breast cancer.  We feel that control of our lives has been taken from us.  This is perfectly legitimate because it's exactly what has happened and, when it's a Stage IV diagnosis, those feelings are magnified by the knowledge, once it has seeped into our minds, that whether we survive or not is entirely dependent on treatment for the rest of our lives.  We soon learn that some treatments do fail and we will then be put on a different treatment.  We pin our hopes to each treatment, hoping it will give us the years we want to spend whilst still relatively healthy.  I use the term "relatively healthy" but the fact is that we are all ill and we are all feeling the influence of side effects to some degree.  Some of us are in extreme pain, some have had several failed treatments behind them and are frightened that they will run out of treatment options quite soon and receive the news that nothing more can be done for them and that they are now Terminal.

We all have a different way of coping with this knowledge and it depends on so many factors I can only summarise them into whether we have good support from people who understand and care; whether our disease is causing us severe pain and therefore causing us to feel the future is bleak; whether we still have some independence or not and how relatively easy or difficult it is to continue with life the way we'd like it to be.  Some women have a difficult time finding anything positive at all about their situation and that's so understandable that I'm sure no one would find fault with that.  Some find their feelings swing wildly between optimistic and pessimistic.  Some are able to put most of their worry aside and try to find a way of enjoying life as much as possible because we are aware that at any time our condition could take a turn for the worse.  At the same time we are all hoping for a turn for the better!  So you could say that we live in a world full of topsy turvy emotions, sometimes not knowing when we wake up in the morning which emotion will be uppermost in our mind that day.  Then it's a case of either getting through the day as best we can or trying to find a way of restoring our equilibrium.

For anyone who wants to do the best they can for someone close to them who has Stage IV breast cancer and who has not before encountered this situation and just has no idea what to say or do, I can give you a few tips.

Telling them that they can defeat this cancer and be cured is not helpful because the fact is that for a person to defeat Stage IV a miracle is needed and they will have been told this by their oncologist.  Oncologists generally make it very clear what is involved with metastatic breast cancer.  They have to; it's important that a patient understands the oncologist cannot cure her.

It needs to be said again and again that metastatic breast cancer is incurable.  It is treatable but not curable so telling someone to "fight hard, you'll win" is not helpful because they know that they won't.

Telling a person who is in the depths of despair to "think positively" causes them to feel that their despair is not understood and is, in fact, being trivialised.  We all go through periods of despair, even the most positive of us and to be told this makes us feel guilty for not feeling positive at that moment; it makes us feel embarrassed that we dared to tell someone how we truly feel deep inside and it makes us feel isolated and marginalised because we know that, from then on, it's no use trying to share our feelings with anyone who doesn't get this.

Telling us to find an interest to fill our time is also risky.  We might or might not be well enough to expend energy on a hobby.  Sometimes we are so ill we can't even read or watch TV because it's too tiring trying to concentrate for even 30 minutes.   For a person in normal health, this might seem incredible; these seem like passive pursuits but no.  Not for someone whose brain is full of pain killers, who is in pain and discomfort and who is tired beyond the kind of tiredness a normal person has ever experienced; a tiredness that is not refreshed by sleep and rest.  In fact, for a lot of us for a lot of the time, sleep and rest elude us because of the pain, discomfort, nausea and other symptoms.  Being told to fill our time is also a teeny bit insulting because the thing we're afraid of most is that we might not have enough time to do those things we'd planned on doing.

People mean well, we know that.  We also know that it's a situation fraught with possibilities of offending the cancer patient.  Those of us with metastatic breast cancer are fully aware that our friends are trying hard to say and do the right things and we appreciate it but what most of us would like to say but don't, is:  "Please stop trying to give me advice.  All we want is your cheerful company, a laugh, to know what's happening in the outside world, to talk about the things we used to talk about before we became ill.  You can't make things better for us by telling us to think a certain way or to fight harder but thank you for trying."   

We all need at least one rock solid friend.  Three would be even better and six or seven people whose support we can always rely on would be a luxury but most of us don't experience that.  We find that people rally around at the beginning and gradually, at around the six months to a year mark, they begin to fall away as they realise that this isn't going to be over any time soon, it's going to take patience, perseverance and a lot of love if you want to really support a much loved friend or family member through this time.  For some of us, and I suspect and hope I'm one, we will be chronically ill for quite a number of years without progression but even so, it's a hard road as we try to balance friendships with the cold, hard facts of our illness.  The inability to socialise as we used to,  the constant feeling of fatigue that we fight off just to have a normal conversation, the necessity to have our medications on hand at all times and to remember when we have to take them.  In my case I have to keep a diary of the time I took my medications because I'm a participant in a trial (more on that in a future blog).  There are the side effects of the treatments and pain killers that, at times, cause a change in our personality, forgetfulness, foggy vision, weakness and instability on standing and walking.  We have to strive to remain the person we always have been because there is always the over-riding fear that friends will grow tired of us and our illness.

What you can do:  Keep in touch regularly, even if it's only a short text, message or email (phone calls are sometimes too difficult to manage).

Treat your friend or loved one in the same way you always have.  We're still the same person inside that we always were and we long to be seen and treated that way.

If your friend is going through a particularly rough time, a tiny gift, nothing expensive but something thoughtful is cheering.

Ask her if there's some food you can provide that will tempt her appetite but don't press her for answers and don't continue to make suggestions if she turns green at your suggestions!

Above all, don't let her think you've forgotten her.  We tend to feel a bit paranoid at times because we're on the perimeter of our friends' lives, not in the middle of them because of our inability to socialise unless we're having a really good spell ~


My next blog will be a piece I was given which was written by a lady who was about to enter hospice with terminal breast cancer .  It's very confronting and sad but I have decided to include it in my next blog for several reasons:  this lady wrote the piece in the hope that it would be shared widely and I encourage any of you who would like to, to share it on social media or by email on behalf of someone who was desperately ill but who could write about it eloquently, in the hope that her situation and that of so many thousands of others would be understood.  I will also share it because I am in a positive place right now.  I'm in a treatment which is working and, although I have pain, side effects, physical limitations and am socially isolated a lot of the time, I believe it's important to balance out my positivity with the facts about living and dying of terminal breast cancer.  I ask you, if you do share it, to treat it with the utmost respect.  I made a promise to this lady that I would share it on her behalf and that I would treat it with the respect it deserves ~


If you have any questions or suggestions you may email Leapfrog at: positivetrialsblogspot@gmail.com