Fear of return

[Arl]

I had breast cancer a few years back and I must admit at the beginning was constantly on my mind from the morning you got up until you went to bed. I was bumping into the wrong people before treatment started, and that always set me back. Every ache had was living in constant fear of it returning or even going somewhere else. I took all the treatment, thought if you take everything offered and it ever comes back you gave it your best. Was off work a long time, but have to say when I got back to work, it was the best thing that could have happened, got my mind of myself and thinking about other people, took a little while but was for the best. I’m not saying you don’t ever worry but it does get less of it being in your mind, at the beginning I did struggle and the breast care nurse got me on a Moving Forward Course which really helped me a lot, meeting with people that were the same as you, understood you better and it was them that always knew what to say to you. The time when I felt quite low was when all your visits to the hospital stopped, I must say though we are all looked after very well, fingers crossed that we all can be cancer free.x

[Owl lady]

Thanks Jane for the book recommendation,  I have just ordered it, waiting for it to arrive.It's good  to know its normal to have these worries like all the rest of you lovely ladies I wish sometimes I could switch my brain off.

[Jane101]

It is totally normal. I had breast cancer two years ago.....was told i had one tumour and an area of concern and would need mastectomy...after mastectomy was told they found another tumour. Please know it is normal to feel anxious. I read " The Cancers survivor's handbook" ...it may help you
X

[Owl lady]

Hi all. I have really been struggling lately worrying about every ache and pain. For the last month or so I have had a back ache, of course our minds go into overdrive and think its the cancer back, even though I have previously suffered with back pain and probably is related to work. It is really good to see that you are all the same . Hopefully time will make it better I finished my treatment a year ago this month and I worry more now than when I was first diagnosed. The chance it will return is constantly on my mind, I'm now even getting worried about booking future holidays. Doesn't matter how many times you tell yourself not to be silly and be positive it still doesn't help. Sorry I have been such a worry guts , hopefully airing my feelings on here will help. 

[Chick1]

Hello Pili,

Thanks for reply.  Very glad you sorted out the cause of your stomach issues and hope you are feeling very well.

Not freaking out about the hip leg pain. I detailed my last meltdown in another post which seemed to be due to a combination and culmination of things, but the persistant pain was probably the bleeding last thing needed .

I have had lots of differing pains and effects since going through treatment and feel that I have taken them in my stride as usually there is a simple explanation for them and I have not felt the need to contact or see medical staff. I get frustrated when I don't know the reason for something! 

I think it is a bit different after you have had a cancer diagnosis rather than pre cancer days  and one of the things you are experiencing is on the "get it checked out if it persists list".  Anyway,  whatever the reason for the situation, I would rather be in the know about it.  Just wished the BCN had maybe arranged a more detailed check when I saw her a couple of weeks ago (not specifically for the hip)  but can't undo that.

Best wishes to you x

[pili pala]

Hi Chick1
I am sorry you are struggling with leg pain at the moment. It is very worrying isn't it? I can understand and empathise that any prolonged pain now and we instantly think 'cancer' when in fact, the odds are, it won't be! Just think about it this way, if you had not been previously diagnosed with cancer, would you still suspect it was causing this pain? Probably not. Please try and stay positive and I hope it turns out ok for you.

[Chick1]

Hello all,

I am also having a bit of a fear moment at this time due to pain in my leg possibly coming from lower back/hip and that is not going away anytime soon.  Will get it checked out again more thoroughly next week so fingers crossed and all that.

Cazbo04 - Just seen your post below.  Just wanted to say I can identify somewhat with your surgical experience, the leeches and the loss of the "same" boob for the second time so to speak.  It's like having a double mastectomy on the same side. It really stinks doesn't it and just more physical and emotional truama to get your head around as if we need anymore. 

I found the leeches a bit nippy at times.  I even got the nurse to take a pic of them as they were enjoying their meal on me. I know - maybe a bit wierd but there you go. 

Wishing you all the best and hope your headaches have reduced x

[ladybowler]

pili pala

Hello lovely to hear from you and that they have identified what the problem is.  Easy to say dont stress though!!  I remember when I was having my pre op and my bp was high the nurse told me to relax otherwise if my bp didnt come I couldnt have the op, and that really helped to bring it down, NOT!!

Now I know this might sound a bit mad!!  When was the last time you changed your mattress?  The only reason I ask is that since we changed ours on news years eve, I have been having the best and longest nights sleep I have had in absolutely ages.

Sending you hugs

Helena xxx

[Lesley21]

Pila Pala, thanks for the update, it’s reassuring for you and guess also for us worryguts.  I think for me now sleep is something of  a luxury, hey ho, I can live with that, when i get a few hours of uninterrupted sleep it’s like a win on the lottery,at least I havent got to get up at 6am for work aanymore so that’s a bo us, always a silver lining if you look hard Enough. So relieved for you and hope that you can find some peace of mind now and relax, we’ll as much as those of those affected by BC can xx.  

[pili pala]

Hi all, sorry for taking so long to reply.  After carrying out very thorough bood tests (6 bottles in all), they all came back negative which was such a relief.  Following this my GP went back to original diagnosis of gastritis and doubled my Omeprazole.  Lucky for me, it has now all cleared and I'm ok.  I understand that me stressing about it was making it worse which in turn made me stress more!  When tests came back clear though I was at last able to relax about it and the pain eased off.  To be honest, I think that stress caused it in the first place.

Where sleep is concerned...I am still struggling, despite trying various pills off my GP.  She has now told me that I need to accept that that is how things are for me as there's not much else she can offer.

[Lesley21]

Meant to say, Cazbo, my sympathies, I am a fellow headache and migraine sufferers.  I suffer from daily chronic headaches and although they’ve been going on for years, long before the BC they have got worse since so I know where you’re coming from.  When your head hurts so much you do start thinking the worse.  I just tell myself that they’ve been going on for 20 years now but when it’s raging you can’t stop yourself xx

[Lesley21]

Hello all,

just noticed  thread and its made me feel better.  I regularly post on another thread where a group of us went through treatment more or less at the same time and rely on each other for comfort, support and laughs.  I too (although I don’t Mention it)  am lately getting more and more anxious about it coming back, every ache, pain and twinge anywhere in my body fills me with a sick feeling of dread.  Got my second mammogram coming up in a couple of weeks and am so worried about it, whereas I wasnt last year.  It’s good to know that a lot of us feel this way, it means it’s completely normal and to be expected.  Once again this site had reassured me xx

[Caro14]

Hi pili pala and everyone...sounds like we’ve had a similar experience, WLE, rads and now I’m on infusions for 3 years....reading everyones comments is really helpful...nice to know you’re not the only one living in fear and dreading that every little niggle and pain is bad news....still learning to cope with that. I think sleep is a great healer and if you can sort that out then it gives you the strength to cope with everything else.

I had lots of stomach problems too this time last year and wasn’t sleeping well either, after a massive weight loss had lots of tests done but nothing conclusive was found, but was taking all kinds of meds for stomach and trying out food-elimination etc..... in the middle of all these tests got the BC dx...it just floored me! Doctor suggested Mirtazapine to help sleep which I resisted....Did a lot of googling, read reviews and fixated on the negative ones (!) and didn’t take it for 4 weeks, worrying about the side effects. At yet another blood test appointment I was in pieces, crying, shaky, nauseous, exhausted....a lovely nurse said “ take half a tablet, take it on a Monday so if you have a bad reaction you can call us, no point starting on a weekend when we’re closed! If you don’t like it stop it....but prepare yourself and treat sleep like a job!” So prepped my son to get up early to sort the dog, had a bath, milky drink, lavender oil, half a tablet and woke up 10 hours later! Felt a little woozy during the day but only for a couple of weeks. Saw gastroenterologist to follow up tests but stomach had settled down by then. He said the stomach is like the body’s real brain, it reacts to everything especially anxiety..... I still do have problems, mostly around appointments, tests etc then it calms down again. I’m still on half a tablet at night and sleep is so much better. It’s a vicious cycle I’m afraid and the more you worry the more stress your stomach will react to.....I know it’s not for everyone and believe me I resisted but the Mirtazapine really helped the stomach problems and all the anxiety that went with it, just makes it a bit easier to cope with everything. I hope you’ve had some positive results back from all your tests and you start to feel better soon. xx

[pili pala]

Hi Cazbo04

OMG that must have been awful for you! No wonder you are worried about it, I would be too. I really hope you'll be ok.

I saw my oncologist last Tuesday and she was very pleased with my progress and has now discharged me back to GP.

Unfortunately though my stomach pains are getting worse and worse and I can't help but worry about it. My GP has arranged for me to have blood tests on Tuesday, in the hope to rule out anything sinister, and I will see her again on Thursday. I can't stop worrying about it which then makes the pain even worse!

I went on a Moving Forward course in February, it was really informative. They had arranged for different people to talk about various topics from dieticians, oncologist, aroma therapist, breast cancer nurse and bra fitting etc. I found it useful as it was easier to discuss treatment and effects etc as I knew more about it by then and when they first tell you it is hard to take in all the information at once as you are in shock. I would recommend everyone to attend if they can.

[Cazbo04]

Hi I worry all the time about will it be anywhere else I had a lumpectomy last oct was then told I need to have a mastectomy so brave me opt for a reconstruction, at the same time big big mistake 10hr operation ..the day after I ended up back in theatre with blood clot 5blood transfusions and then in icu &hdu 3long days of having leeches on me yes leeches day 9 they told me my reconstruction hadn't worked and it would all need to be taken away . So yes im really scared I get headaches alot and then in thinking its gone to my brain.its the worst feeling in the world just over thinking all the time .xx

[ladybowler]

Juliewulie

Glad I have been able to be of some help.  I am sure your Onc will put your mind at rest, and you will be able to get reassurance.

I had been booked on one but unfortunately I had to cancel because of other commitments at the same time but i know that a lot of ladies on here have attended them and have only had very positive comments about them, so on this one you will have to let me know how you get on 🙂

Helena xx

[Juliewulie]

Hi Ladybowler

Thanks for all your advice on here. I've been reading them avidly as I too am petrified it will come back. I see my Oncologist on 27th March so hopefully will put my mind at rest - a bit. I am the world's worse worrier anyway.

I noticed on an earlier thread that you went to the Moving Forward course. I am attending one early May and wondered what you thought of it and what it entailed.

Thanks Again

[ladybowler]

pili pala

Unfortunattely every little ache and pain does send us into free fall and we think that there is something seriously wrong and that the cancer has returned.  That too is totally natural, but it does get better.

Let us know how you get on with your Onc on 27th.  I am just about to have my first mammogram post surgery and see my oncologist again at the end of April.

Helena xxx

[pili pala]

Hi Helena

Thank you for your reply and welcome xx

It is very reassuring to know I'm not the only one to worry about this. I've had stomach ache past few days and I just had to go and get it checked out on Friday as it was getting worse and my fear increasing by the second! Turned out to be gastritis but am suppose to go back next week and if I'm not better by then they will do blood tests. I still can't stop worrying about it and the stress of it all is causing the gastritis to get worse. It is probably stress that caused it in the first place.

I am due to see the oncologist where I had my rads on 27th which is a week on Tuesday. Not long to go but I think it makes me worry more!

Thank you again xxx

[ladybowler]

pili pala

Hello and lovely to hear from you again.

It is totally normal to have the fear of it returning again.  It does get easier with time, I am 18 months post diagnosis and it no longer the first and last thing I think of in a day honestly xx

Have you had a follow up with your oncologist post rads finishing?  If not I would suggest that you give your bcn a call and ask if this should have been done, it is always possible that this has been missed.  I know I saw mine in March last year 8 weeks after I finished rads

Helena xxx

[pili pala]

Hi all, I haven't been on here for a while.  I was diagnosed with grade 3 stage 2 back in July.  I then had a lumpectomy to remove two tumors, where a seed of another was later found, and radiotherapy followed in November for 3 weeks.  I assume I am now all clear but not been told this or anything else.  Lately, however, I can't stop thinking that the cancer will return and not necessarily in the breast this time.  I am so scared of this happening and can't shake it off.  Does anyone else share the same fear?  Please tell me this is normal.