Feel like i'm living on borrowed time!

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Hello Ladies

My active treatment finished in July. I’ve had a lumpectomy with lymph node clearance, chemo, a baby in March (diagnosed with CF in April), last chemo, and then rads. As well as a baby I also have a 2 year old.

People keep saying ‘oh I bet you’re so pleased it’s finished and that you can get on with enjoying your life life’ and yes of course I’m glad it’s finished…but I feel like I’m waiting for it to come back!

My Onc said I have a 30% chance of getting cancer again within the next 10 years but that in his personal opinion, if I get it again it will be within the next 3. He said before I started chemo that it would give me a 5 year clear window where I shouldn’t have to worry. So now do I owrry for 3, 5 or 10 years!!!

Maybe things are catching up with me and I am still tired but I really don’t think I’m going to make it past 3 years. I know this is daft but I can’t seem to get past it. I’ve been to buy and expensive camera to make sure that my girls have photo’s of us together when they’re older as I’m convinced I won’t be here - and keep trying to think of other ways I can let them know just how much I love them (and things for hubby too). I am even starting to think about planning my funeral.

Technically I’m not depressed so I’m sure this must be a short term thing. I’ve been told by another survivor that it took her 6 months to get past it.

What are your experiences?

Thank you ladies - stay well!

Faye

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Faye

I completed my treatment in april and it sounds like it was the same as yours. I was told my percentage rate for it coming back but i’ve forgotten it! I find that every ache and pain is either cancer or some other life limiting illness. Manage to convince myself recently that my hand tingling was motor neurone disease! Of course, when I checked out se’s of chemo, it seems that tax can cause the tingling and numbness!

I think its quite normal to worry about everything. Everyone expects us to be up and running as soon as treatment is over, but we know it doesn’t work like that. I’ve been told it can take a year for the effects of chemo to leave your body. Then there is also the hell of chemo induced menopause that a lot of us have.

Has your baby been diagnosed with cystic fibrosis?

Julia xx

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Hi Faye - I went through a time like this and I have decided not to ask the ONC what my stats are so that I don’t end up in the same situation you are- sorry to hear that it is pressing on your mind and I don’t blame you for it but do try to focus on the future of you and your young family

big hug - R

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Hi Faye - so sorry to read your post and i can identify with lots you say in it, i finished treatment in May and have just started back at work. I worry so much that it’ll come back and my kids (11 and 18) will be without me. I’m sorry i’ve no answers for you other than huge hugs and a whole lot of empathy. I try to hold on to the hope that its early days and i won’t always feel as fearful - lots of ladies on here speak of a “new normal” and less anxiety as time passes.

Lynn

x.

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Hi Faye -
your feelings may well be a delayed reaction to everything that has happened. I found I soldiered through everything with determination, there is so much to organise while being treated that there isn’t much time to think! After it was finished I felt a bit at sea, and in many ways this was the most difficult bit.
However you have been told good statistics. It is much more likely that you will still be around in 10 years than not. Still your plan of taking photos etc and making the most of the next few years is still a good one. I sat and thought of a list of what I would like to have done, supposing the cancer recurred in 5 years. I am still here after 6, but it was still a good list as I have done quite a few of them!
I am sure you will feel a lot better in a few weeks
Sarah

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When your oncologist said if its coming back it will be within three years, because of his experience with this type of cancer? It doesnt mean at all that it will come back, only that its more likely to be sooner than later with this particular type. This was the same with my son’s cancer. They knew from experience that it recurred usually within two years and if it didnt, it was less likely to return. My son is now 17 years off treatment and I am almost calm about it.
Oncologists do have a funny way of putting things sometimes which can be very confusing. Like the five and ten year statistics - very, very generalised so basically are meaningless to the individual. If he thinks your chemo will take you up to the five years stage I would take that as encouraging. If he didnt think you had much of a chance, he would tell you. They do not flower up the truth.

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Hi
From my experience with onc’s some are so scared of giving you false hope they end out giving you no hope. You are at an emotionally vulnerable time for lots of reasons. I cannot imagine the whirlwind your hormones have gone through and will continue to go through. But I hope you regain some faith in your future and enjoy each minute with your children. Be patient with yourself and continue to be honest about how you feel. Hopefully then you will recognise the days that you do start to feel better. Debx

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Faye - It sounds as if the figures were for recurrence, not of dying. Even if it were to recur, it could probably be treated, or managed, and don’t forget that new drugs are being developed all the time. Have you read this article about feelings after treatment?

cancercounselling.org.uk/northsouth/extra4.nsf/WebResHarvey?OpenView&ExpandAll&Count=500

It is normal how you are feeling. This thing makes us all paranoid.

Good luck.

Ann x

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Dear Faye

I’m sorry that you are so beset with worries. I thought I’d try and give you a bit of my perspective in the hope that it might help. I actually have secondaries (diagnosed this Jan) after being 4 years ‘clear’. After finishing treatment the first time round I also was full of worries - it’s often worse after active treatment has finished as you feel a bit alone and everyone is assuming that you are cured and can therefore carry on from where you left off. However, after a period of readjustment I just carried on as normal and barely gave the big ‘C’ a second thought. It came as an almighty shock to be rediagnosed this year but I feel that I’ve adapted to the situation quite well. My point is that you could worry away your time thinking about the ‘what ifs?’ or you could embrace life and deal with things if, and should, they arise. Easier said than done sometimes, I realise, but I don’t regret the life I lead up to this point and now I try and concentrate on the ‘now’ rather than what might happen to me further down the line. I hope this doesn’t sound patronising - adjusting to real life after a major illness is not often easy but it’s so tiring to be bogged down with thinking about negatives all the time. It’s great that you are taking photos and no bad thing (though some people are scared by it) to think about how you would like your funeral to be. Are there any support groups in your area? These might be helpful for you to voice your fears in a sympathetic environment. I know I find them enormously helpful. Without being flippant, enjoy your life with your family and friends. If you have any health concerns discuss them with your oncologist or GP. Cancer changes everyone because we are faced with our own mortality but it’s important to not become consumed by this. No one can predict 100% what is going to happen. I try to concentrate now on doing things I enjoy, spending time with people I like and eliminating negatives and stress from my life. Not always easy but I think I’m living a full life and very much wish you joy and happiness with yours.

Take care
Alison x

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Dear Faye, like you I have just finished active treatment and going on to tamoxifen. I think it’s normal to be concerned, whatever prognosis the onc has given you, overall it’s still a statistic and really there is no predicting the future for any of us! If it does come back, we will have to face it as and when it happens but for now I am trying to enjoy my kids and be grateful that I have had/have access to excellent healthcare. My ILC was >7cm, grade 2 and multifocal. Negative nodes. The statistics say the risk of it coming back on the other side are 20-29%, depending on which research one reads. I am hoping and working on not dwelling on what might or might not happen.
Here are some statistics from the Cancer Research UK website that may help:

Small, early breast cancers
The earlier a breast cancer is diagnosed, the smaller it is likely to be and the lower the chance that it has spread. For breast cancers less than 2cm across, with no cancer in the lymph nodes and either low or intermediate grade (grade 1 or 2), between 8 and 9 out of every 10 women (80 to 90%) will live for at least 10 years after diagnosis.

For early breast cancers less than 2cm across, with no cancer in the lymph nodes, but where the cancer cells are high grade (grade 3), between 7 and 8 out of every 10 women (70 to 80%) will live for at least 10 years after diagnosis.

Breast cancers that are larger or have spread to nearby lymph nodes
It gets more complicated here. Between 7 and 8 out of every 10 women (70 to 80%) in the following situations live for at least 10 years after diagnosis

A cancer smaller than 2cm, low grade, with cancer in 4 or more lymph nodes
A cancer smaller than 2cm, intermediate grade, with cancer in 1, 2 or 3 lymph nodes
Cancer between 2 and 7cm, low grade, with cancer in 1, 2, or 3 lymph nodes
Cancer between 2 and 7cm, intermediate grade, with no cancer in the lymph nodes

Between 5 and 7 women out of every 10 (50 to 70%) in these situations live for at least 10 years after diagnosis

A cancer smaller than 2cm, intermediate grade, with cancer in 4 or more lymph nodes
A cancer smaller than 2cm, high grade, with cancer in 1, 2 or 3 lymph nodes
Cancer between 2 and 7cm, low grade, with cancer in 4 or more lymph nodes
Cancer between 2 and 7cm, intermediate grade, with cancer in 1, 2 or 3 lymph nodes

Between 3 and 5 women out of every 10 (30 to 50%) in these situations live for at least 10 years after diagnosis

Cancer between 2 and 7cm, intermediate grade, with cancer in 4 or more lymph nodes
Cancer between 2 and 7cm, high grade, with cancer in 1, 2 or 3 nodes
Any size cancer in the breast, high grade, with cancer in 4 or more lymph nodes

Also, you can access the adjuvant online or use the Nottingham Prognostic Index Formula. However, all these programs are based on statistic of women treated some time ago and outcomes have improved since then. I think Alison has summed it up correctly, it’s the present which counts, we cant change the past, we only have the power to affect the present. I know it must be hard, especially with looking after a CF baby. Sending you a big hug. Tina xx

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Hi Faye

I’m sorry you are feeling so down - but please remember as Ann said these are figures for recurrence - which even if it happens is likely to be picked up very early as you are being constantly monitored. I agree that the onc wasn’t saying it is likely to come back in 3 years - just that if it does it will be more likely sooner than later.

I recognize exactly what you are feeling - like Tawny I have secondaries and have the occasional very black weeks. I had one recently when both the kids were away and I had too much time on my hands to think about the future, and I spent the whole time thinking about my death. But I’ve bounced back and have felt really good since then - nothing changed except I was busier and snapped myself out of it. The cliché about a roller-coaster of emotions is truly apt.

One thing I have found which has helped me enormously is to read as much as I can about what I can do for myself to improve my chances - these involve radical diet changes, lifestyle changes to make sure I exercise enough, mental well being with things like meditation, being much more aware of chemicals in the environment etc. I am also going to the Bristol Cancer centre soon for a 3 day course. Making these sorts of changes may be too much for you - but they have helped me feel much more positive and in control - less at the mercy of fate. Maybe there are some small steps you could make to help you feel more positive about your outcome - I’d be happy to recommend a book to get you started if it would help.

finty xxx

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Hi Ladies

Thank you for the positive replies - it feels better just to know what I’m feeling is generally normal that will pass with time.

Julia, yes she has Cystic Fibrosis. She was diagnosed at 5 weeks old from the newborn healprick test. As it happens she was already in hospital on IV antibiotics with a chest infection when the results arrived…and I was admitted to a different ward the previous day for an infection following chemo!! Life has settled slightly since then but it’s still hard to relax wondering what else is going to be thrown at us.

I appreciate people pointing out that the statistics are based on the past and that medicines have changed. It’s so easy to forget this important fact! I have to do the same with Eva’s CF. The average life expectancy for a CF person is around 30 but that is old information and the most advanced drug developments have only happened within the last 10 years. Who know’s what will happen within the next 10?!

Before my rads I started seeing a counsellor about everything and she really helped even though I only went a few times. I think I might book some more time with her and also with my reflexologist. I don’t sleep well through worry so she might be able to do something to calm me…she is recovering from BC too so it’s always nice to speak with her :slight_smile:

Thank you again

Faye

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Dear Faye
May I ask if your cancer was triple negative?The statistics you quote sound as if this may be the case.If it is I will post at greater length.If not I’ll just wish you luck and joy with your beautiful daughters.
Just read your other thread and see that you are indeed tn.I was dx in 2006 with a 2cm Grade2 tn tumour.I had chemo[4xfec and 4xtaxotere] and rads.No lymph nodes involved.Yes tnbc is more likely than some to come back in first 3 years post dx but if you get to 8 years it is very unlikely[posted link to research in Triple Negative a while ago].Your tumour was less than 2cm with no node involvement.You have so many reasons to be hopeful.
Love Valxx

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Hi ohbaby and others, just wanted to say that I think I know how you feel. When I first found my lump, over a year ago, ( and back then I wasn’t even sure it was actually a lump at all, and I more than likely apologised to the doctor for wasting her time) I was pretty certain that it wasn’t anything serious. Boy did I get a shock ata the breats screening clinic! Now I don’t trust my instincts anymore and every little niggle, ache and pain sends my head into a tizz, because I was caught so off-guard last time. I have found it difficult to return to normal after treatment ends, and the more time passes the more I dwell on it. I’m quite a positive person really, so this doesn’t fit with my image of myself as a ‘get-on-with-life’ person. I WANT to trust my body to keep me well, but I just don’t… I DO get on with life, and not many people know I’m bothered, but deep down I am, and if anyone knows the secret to shrugging this off I’d like to know.

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Hi Faye

You’ve been so supportive to me since my diagnosis of a recurrence, I wanted to lend my support to you.

It may well be that I’m making things worse, because despite my very good prognosis more than 5 years ago I have had a recurrence so I’m not exactly a fine example, but it does go to show that those stats don’t really mean a lot.

However, i lived by stats last time, and used them to comfort myself a lot. A 30% chance of getting a recurrence does not mean 30% chance of dying, or that recurrence being distant metastases. It’s very likely you’ve seen the end of your cancer - that is the probability. And I promise, the longer you go in the clear, the more confident you become that cancer is becoming part of your history rather than your life. It just takes time.

Since I’ve had a child, I do think it was easier for me to get over BC after my initial diagnosis, when I didn’t have a family. Now, I am terrified of dying and I don’t know that I’ll bounce back in the way I did last time. So I realise it’s harder for you now than it was for me then.

I’m sure that your checkups will be hell for the next few years. Mine always have been and I’ve had every extra lump, bump and peculiar symptom checked out too! The fear leading up to a scan or xray is awful, even years down the line, but the relief after each clear check is fantastic.

I do think that after BC we appreciate our precious lives so much more than those who haven’t had their life threatened by disease or circumstance.

I don’t think it’s possible or healthy to ignore the very normal fear your have right now. And admittedly, it is a real fear, I’m not dismissing it (a fellow cancer-sufferer couldn’t do that). Perhaps you just have to live with it, through it, and you may well find that life gets in the way of worrying about cancer. Not yet, but eventually.

Keep taking those photos, cos who knows, you may well enjoy looking back on them when you’re an old lady. Lots of hugs xxxx Jane

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Dear Faye,

Seeing your counsellor again sounds like a great idea.

I think it’s no surprise you feel as you do: you have been through so much in such a short space of time, and are still going through it. On top of that you have a toddler and a very young baby to look after - no wonder you are exhausted and overwhelmed. As SarahAL says, I wonder if this is a delayed reaction to everything that has happened.

I know you say that technically you aren’t depressed but I wonder if perhaps you do have a form of depression - possibly post-natal. Depression doesn’t necessarily mean feeling down all the time (or not in my experience anyway).

Research shows that women who have suffered a traumatic event are more at risk of post-traumatic stress (PTS) following the birth of a child. Typically this trauma relates to pregnancy or a previous birth, but I don’t think that is always the case. You have suffered the trauma of a cancer diagnosis and treatment and what I would imagine was to some degree a stressful pregnancy following the diagnosis, as well as your little girl’s CF diagnosis. These are immensely stressful events on their own; cumulatively their impact must be immense.

I mention PTS not to add yet another “diagnosis” to those you already have to cope with but as a way of giving some further context to what you are experiencing.

I really hope you can see your counsellor again, perhaps for a few months, and that you begin to feel better very soon.

I wish you and your family health and happiness.

xx

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scottiedog - I think a lot of us feel just like you.

Ann x