Fear of cancer returning

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1

Hi all,

its almost 2 yrs since dx and i want to know if the fear ever leaves you. i’m even more frightened than ever before.

I have a niggly pain in my shoulder and neck which comes and goes but sometimes i think im looking for the pain and making it happen. I find it hard to think rationally and logically about health. I keep touching my neck and shoulder and sometimes think by prodding it i making something out of nothing and other times i find myself thinking the worst

I feel like a total hypocondriac and can only really only talk to u ladies as everyone in the family think all is okay little do they know.

don’t know if i should go to docs or not?

Does anyone else feel much the same
Sukes

2

I think we all live with the fear of it returning and I also wonder if it will ever leave my thoughts. For the most I know how to divert my thoughts to something nicer like my grandson or I stop in my tracks and do something to keep me busy. I also listen to mp3 and try to get past the thoughts.

I think the hardest part is the waiting, waiting for results, waiting for scans waiting…

Try diversion techniques as they do work quite well and in the meantime dont be afraid to go and checked out with the GP - they should understand your worries.

Take care
All the best
xxxxx

3

Hi Sukes
Like you I fear this every day. I’ve had a niggling stitch pain in my side (albeit inconsistenly) for a few weeks now and have convinced myself it’s liver mets! - despite running 10 miles yesterday!!! I think this response is completely normal after all we’ve been through. I usually set myself a 2 week rule, i.e if it hangs around for 2 weeks consistently then I’ll ring my BCN. This really works for me, only last week I had fear of brain mets but fortunately it only lasted 2 days and the kids had been screaming particularly loudly that day. Unfortunately a diagnosis of BC robs us of more than our hair and our boobs but it robs us of the security of thinking that sh*t only happens to other people. I think it’s worse when you have young one’s like we do as I find myself bargaining with God if he would just let me see the kids until they are old enough to remember me, old enough to start secondary school, old enough to see their 21st birthdays etc etc etc.
If you are still worried of course you should ring your BCN and they won’t think anything less of you for doing so as they are used to people having to learn with living with this fear. In the meantime try the 2 week rule and see if it works for you.
Good luck and don’t be hard on yourself we’ve been through a lot and the psychological effects of it all can never be underestimated.
Best wishes
xxx

4

Dear Sukes, I think you have done exactly what is needed by writing down that you are worried. As actually saying it out loud is the first step in the right direction.
Only you can decide whether or not you need to speak to your GP about this but what you are feeling is absolutly normal and something most of us have thought about at some time or another. Yes, every ache and pain, is never considerd to be just that, an ache or pain, but we worry that it is something more sinister. I personally have found that time makes things easier. I do still worry, and thoughts like yours still cross my mind even now, but I find it easier to cope with now. But never dismiss something that is worrying you as often we are in tune with our own bodies. What I have found is that every ache and pain I have worried about has amounted to NOTHING. The things that have been a problem were not things I had even contemplated. Hope this makes sense.
That is why this site is so important as we all know exactly what you mean as we have been there too. Sometimes it is hard to talk to very close family members or friends. Sometimes it is better to voice our worries, just as you have done today, to people less close to you. We are always about to share with you worries that occur. Hope this helps just a little. I myself have been dealing with issues like this for more than 20 years now. Take care, love Val (Scottishlass)

5

ladies,

Thanks for the comments. I know what you all mean and appreciate your comments. I too give my self the 2 week rule and its been about aweek now. I do try hard to think rationally but it is hard. I sometimes think that it is easier on kids if they don’t know you (thats only if god was going to rob me from them).

The crap this damn disease throws at you is really hard to deal with and being only 35 with 3 young kids i find it so hard to reason with everything.

I wish i was normal - what ever that is.
I wish i didn’t sleep in fear
I wish i didnt feel fear
I wish i didnt think fear
I wish i didnt have to negotiate my life with god
I just want to live life to the full without thinking of CANCER!

This is so hard to deal with and no member of my family understands. My sis just wants to talk about other peoples misfortunes due to ill health and i hate it.

Sukes

6

Hey Sukes
Sorry you sound so down at the moment. It is crap, I agree with you.
sending you a big cyber hug (((( )))) Please feel free to PM me if you want to chat more.
xxx

7

Hi sukes
I think we all know what u mean,try and put those thoughts to the back of ur head,easier said than done i know.
When i got diagnosed in march i had achey shoulder and a pain in my neck (bc side) i was absolutely convinced I had spread,so my oncologist asked if i wanted a bone scan,this came back neg i was totally in shock.
Since then Ive convinced myself ive had liver mets,skin mets and lung mets !!!
I have decided to stop worrying as its a waste of emotion.
I remember you from when I first started reading these posts you used to talk to my friend lisa (zena) when I just got diagnosed.
Take care and chin up
sharon xxxxxxx

8

Hi Sukes

I do empathise with what you are going through, I too fear the worst about EVERYTHING, its almost like waiting for something to happen. I don’t want to be like this, but can’t help myself.

I am having tests next week because I’ve had a cough for 6 months, I’ve tried to shrug this off as SE from tax, Herceptin, etc. but it doesn 't stop the worry. Hopefully it will all be fine.

I’ve often had pain in my ribs, neck, knee that seem to come up from nowhere, the rib pain has been explained as a fracture from the cough.

The point is, I don’t think we will ever be free from worry, although perhaps with time maybe it will get better and we will worry less. We must try not to let it overtake our lives, somehow, and enjoy each day but I don’t know how we do that.

Hope it all stops aching, and you feel more reassured now.

P xx

9

Hey All

I can total relate to this whole thread & I’m only 3 cycles into an 8 cycle chemo regime with rads to follow!!

I’m really relieved to see that it’s not just me who convinces themselves daily that they have some mets or another!

I also do the whole ‘bargaining with God’ thing re my kids (I’m 35 with 3 young kids too)and I’m forever…if I can just see my daughter start school (she’s only 2)and my eldest start secondary…if I can just get to do this…or just get to do that!

I’ve been finding it so draining & depressing & it’s actually getting in the way of me enjoying my time with the kids…which obviously makes me feel more down! I’m now making a huuuuge effort to push the thoughts to the side & am trying not to stress about every little red mark on my mx scar & why the skin looks a little blotchy today around my side & not panic when I have a pain in my neck/ribs/back!

I’m very aware that my life will be constantly overshadowed with the ‘threat’ of mets (especially as I’m triple negative with 17/30 nodes infected)& I somehow need to learn to live with it more easily…any tips greatly appreciated! LOL

Hazel x

10

Hi everyone

As someone who has recently been told they have liver mets (and had no symptoms at all and in fact had never felt better, probably because I hadn’t had any hormone ‘therapy’ for a while), I do feel very sad that you are worrying so much.

I would urge you to do your very best not to. Living in a state of permanently heightened anxiety every day is physically and mentally exhausting and will destroy your quality of life every bit as much as SEs from treatment.

My fear is in a box and every now and again I take it out and look at it and then put it away again. I’m busy living and despite weekly chemo I feel well, if a little tired and have carried on working and - more importantly - playing!

You only get one life - live it - there are no rehearsals. Be alert for symptoms, but don’t worry yourselves sick, literally.

I would also suggest that the primary diagnosis and several drastic treatments (surgery, chemo and rads) in a very short space of time are a lot to get over. An onc once told me it can take a good two years from the end of all that to starting to feel anything remotely like normal. Our bodies take a terrible pounding and then there’s the stress and shock of a diagnosis to cope with as well. It’s no wonder that we can be beset by all kinds of genuine (but not sinister) aches, pains, niggles and worries as a consequence.

It’s hard to do, but I try to emulate my OH who ‘never looks back’, never says ‘if only’ or ‘what if’, just deals with what’s in front of him at any given time, goes forward all and doesn’t go looking for problems. I’ve found this helps quite a lot.

But I often find myself ‘bargaining’ with God, too! - do you think he feels as tho’ he’s being nagged? :slight_smile:

And in my more philosophical moments I can see that I’m not the first person in the world who’s been dealt a s***t hand and I surely won’t be the last.

The two week rule is a useful one, I feel. Thanks for reminding us, Val. Sukes, I would get your neck and shoulder pain checked out for your own peace of mind.

Thinking of you all and wishing you a peaceful night.

X

S

11

Hi Sukes and everyone else! I honestly thought it was only me that had all these dreadful negative thoughts. I am almost 1yr past chemo/rads and think this has been the worst year yet. I sometimes still wake up in a blind panic with the thoughts and fear of cancer returning, and still can’t accept that this has happened to “me”.

Fortunately my children are grown up but at the age of 54 I have 7 grandchildren and now long to be with them for as long as possible. Time is so precious and it slips away so quickly, oh for a day free from worry from this awful disease . We just need to keep reassuring each other and “talking” as no-one else really understands this hell.

12

Hi susieque,

I’m almost 4 years on from diagnosis and still have many fears, I think most people will say the fears never entirely go away - and how can they, when so many women face recurrence and secondaries?

When I get acutely scared I fall back onto the coping mechanisms I used during the year of treatment. Right after diagnosis, I took up meditation, improved my diet, stopped alcohol completely, had regular reiki healing, took all sorts of vitamin and nutritional supplements, took Bach flower remedies for anxieties and fearful thoughts, went to a weekly support group, did more gentle excercise like hillwalking, repeated positive mantras to myself, and did visualisation excercises - I especially like to visualise myself at my own 75th birthday party (which is another 25 years in the future!)

As life got back to something like ‘normal’ and the pressures of work and family returned, I’ve spent less time doing these healthy things. But I’ve found that fear is a good motivator to return to them. Even if they can’t be proven to keep the cancer away, during cancer treatment these things made me feel much happier and calmer on a day to day basis. Fear of the future may be different when cancer treatments have finished, but even so, when I’ve tried these methods again, I’ve found they have the same beneficial effects as during treatment. For me, taking some small actions like these seems to distract my mind from repetitive worrying.

Lots of people feel sceptical about methods like these, but I decided to try them because they seem harmless enough, and not expensive. They are not claimed to cure cancer but are claimed to help with managing ongoing emotions and reactions. I’ve found they work for me. I can only live one day at a time, and these methods help me live each day more calmly.

Hopefully you will find some methods that will work for you, and the time to do them regularly. Best wishes, Buckwheat

13

Should be Hi Sukes too

14

I went to the GP this morning because I needed some anti-allergy eye drops.I ended up in tears just because the asked me if I had anything else I needed to discuss with her.I am 3 yrs post dx and worry about every little ache and pain,cough and headache-everything.
She was great and just talked it all through till I felt ok-till tomorrow.

15

hi there everyone

its a shame we choose to worry when at least we have some time to enjoy not like some of the ladies like my friend who was suddenly told there was nothing they could do, and died within the week. but i too am like a lot of you, every ache, when im fatigued, etc, start thinking how long have i got. i have secondaries and they are really playing up at the moment(well i think its that) or it could just be the tamoxifen, which also i think plays havoc with our emotions making us anxious at times. i think like one of the other ladies said; our best option is to concentrate on living with the anxiety and trying to manage it, because fear is no good for any of us. so maybe we need to really focus on some of the positive things in our life? and dont think for one moment im not understanding where your at, because im really having to work at being more positive at the moment, and feel utterly fatigued. but we need to keep up the good fight, take care all x

16

Hello ladies, I was diagnosed in August this year and I have already had some worrying moments. My tumour was found on routine mammogram, grade 2, 1 cm, mixed cancer, WLE and SNB no spread to lymph gland. About 3 weeks after the op I developed a severe pain in my knee to the point I could not walk without a stick. I had also recently started Arimidex but had been told by my BCN that it was too soon for that to have been the cause of my problem. After waiting a few more weeks I saw my GP who decided that I needed to see a physio at the hospital so I was referred. I went gaily along to the appointment and suddenly whilst examining my knee he declared “well there is a lump there and in view of your history I think you need to see your GP again for a 2nd opinion” I just burst into floods of tears, to be honest it hadn’t occured to me that this could be a sinister problem. To cut a long story short I have now had an ultrasound on the “lump” and was told rather curtly that it was just an enlarged fat pad and not to worry about every lump or bump - I explained that I hadn’t.

Of course this doesn’t explain the reason for the pain I have been experiencing although he did mention inflammation, after all I am taking Arimidex and we all know how this can effect your joints. I just wanted to say that I wasn’t expecting there to be a problem until the dreaded word lump was mentioned and I felt as if I was doomed. Luckily it was a false alarm.

Chris xx

17

Hello ladies, I was diagnosed in August this year and I have already had some worrying moments. My tumour was found on routine mammogram, grade 2, 1 cm, mixed cancer, WLE and SNB no spread to lymph gland. About 3 weeks after the op I developed a severe pain in my knee to the point I could not walk without a stick. I had also recently started Arimidex but had been told by my BCN that it was too soon for that to have been the cause of my problem. After waiting a few more weeks I saw my GP who decided that I needed to see a physio at the hospital so I was referred. I went gaily along to the appointment and suddenly whilst examining my knee he declared “well there is a lump there and in view of your history I think you need to see your GP again for a 2nd opinion” I just burst into floods of tears, to be honest it hadn’t occured to me that this could be a sinister problem. To cut a long story short I have now had an ultrasound on the “lump” and was told rather curtly that it was just an enlarged fat pad and not to worry about every lump or bump - I explained that I hadn’t.

Of course this doesn’t explain the reason for the pain I have been experiencing although he did mention inflammation, after all I am taking Arimidex and we all know how this can effect your joints. I just wanted to say that I wasn’t expecting there to be a problem until the dreaded word lump was mentioned and I felt as if I was doomed. Luckily it was a false alarm.

Chris xx

18

I was sort of thrown into the deep end from the beginning as I was diagnosed with both bc and bone mets in 2003 when I was 44.
Only my thoughts, how I deal with life now, please ignore them if they sound ridiculous.
Getting used to a new normal and adjusting to this rather than looking back on what used to be.
At first my every thought on first waking was ‘I’ve got cancer’. It’s not now but it took quite a while for it not to be.
Sounding very Pollyanna ish here, sorry, but I really do try to enjoy every day, I really try and savour the small things. Like standing outside at 6 in the morning, listening to the birds, or the silence, just enjoying the start of a new day and my being here to see it.
Looking up at the stars on a clear night, the beauty of a full moon.
Silly perhaps but enjoying the homely things, my winter pansies, home grown summer tomatoes, knitted blankets, knitted dinosaurs! and cross stitch samplers…I enjoy making things…they are not especially beautiful but they are made with love.
Remembering nothing was ever guaranteed in this life, others have had much more to deal with than me.
Sorting out what and who is important, my family.
And not feeling guilty about ‘dropping’ others who are either hard work or draining.
Enjoying now, right now, I’m pain free and for now my treatment’s working well…this could change next week, next year, I will live with the uncertainty as best I can and I will try to deal with problems, situations as they arrive and not before.
Not always adhering to all or any of the above but acknowledging I’m only human and forgiving myself for any failures.
I’ve never done the bargaining with God.
Love to All. Belinda…xx

19

I was diagnosed in Oct 2006 and had hoped things would be better after the 2 year mark. I went for some counselling coming up to that point and after I finished it gave me a lot to think about and things I knew I had to work on relating to confidence issues etc. I have found that things have got better in the past few months leading up to my 3 year mark. A couple of factors that have made me feel differently about my situation are that in the past year someone I know has been diagnosed and treated for a cancerous brain tumour; also about 3 months ago my brother’s long term partner was diagnosed with lung cancer. The guy with brain cancer doesn’t have a great prognosis and they can’t say anything beyond another year at the moment. My brother hopes his partner’s cancer has been caught early, but of course the fact that it’s lung cancer is very worrying and they know tumour is very close to her heart.

These 2 people have made me realise how very fortunate I am and that I have to get on with things. TBH, I’m not afraid of the whole process of death as I was at my dad’s bedside over the weekend when he was dying back in 2005. Being there at the point of death took the fear and mystery away. I have never really thought of death much since I was diagnosed with this (I had a dream about my dad shortly after I was diagnosed and he told me I would not be meeting him again for a very long time).It has always been my philosophy that whilst we all have to die, unfortunately some of us have to go before others. I also think of others who have died before their time and without any warning - for instance, my husband’s cousin worked for a bank and was on secondment to another branch about to open miles away as he was taking care of facilities for the offices. On his last day in the job he was driving home and was killed outright in a head on smash with another driver. His wife just expected him home for the weekend by 7pm that Friday night and he never got there.

For what it’s worth I knda like where I am at the moment. Every day gives me a new challenge.

20

Hi to all

I just want to add my thoughts as someone who is a few years down the line.

I was DX in August 2006, had major surgery followed by chemo, which finished in February 07. I was very ill during my treatment, and used to long for the old me back. However, now 3 years on, I have now learned to live with the new recon boob, the scars and different feelings, and think that only time has enabled me to do this.

I used to have the fear you describe, and worry about recurrence, but now I am living for now, and I must admit it has changed both my and my husbands outlook on life, and we are now doing things as and when we can instead of planning too much ahead. Not because I think I won’t be here, but I am determined to enjoy the here and now.

Also, in April this year, my brothers wife suffered a massive brain hemorrhage at 43 and died without any warning, leaving him to bring up there 13 year old son, and he is devastated, so that as well for me made me determined to enjoy my life, whatever it may bring.

We all need to find ways to cope, so take any help you need, and its true, no one else understands unless they have been there.

Love and best wishes to you all

Deborah xx