I'm struggling :(

All things being equal I should be a happy bunny. I’m 2 years post WLE, negative lymph nodes, but although it was only a 6mm IDC, it was surrounded by a large ‘undefineable’ mass (they only told me 2 weeks ago that they are treating it as IDC as well and that I’ve been ‘upgraded’ from a Grade 1 to 2!) which meant I had chemo, rads & Tamoxifen. Just had my 2 yr mammogram - some changes but they think they are scar tissue so all ok for another year.
I ‘should’ be a happy bunny getting on with my life but I’m not…
I mentioned to my oncologist that I have had pain in my right hip. So I’m now waiting for a bone scan. Ok, all things being equal it will be fine BUT, a lovely lady who I met through the Internet when I was diagnosed - fabulously positive & supportive, who is nearly 5yrs post diagnosis, had to have her gallbladder removed in the summer and purely whilst checking that, they discovered her cancer had spread with liver, lung & bony mets :'(.
I’m also suffering fairly unpleasant menopause symptoms esp hot flushes which are disturbing my sleep. I work full time & I’m falling asleep most lunchtimes! I’ve got an incredibly short temper, overreact to the slightest thing & end up in floods of tears!
I’m not sure if I’m depressed or just menopausal? Fear of recurrence is in the forefront of my mind most days, I don’t seem to be able to put that one to bed :/.
Any wise words (or kicks up the backside) would be very much appreciated!

Hello mythos15. Not really sure how much help I can be, but I thought I would post as you haven’t had a reply yet. What you are feeling is perfectly normal. It’s only to be expected that, as a cancer survivor, you will worry about any little change in your health and it’s difficult to cope with your feelings when everyone else expects you to put it all behind you and get on with your life now you have been ‘cured’. It does get easier over time, but never goes away completely. What you have to hang on to is that you are just as likely as anyone else to have a non-malignant health problem. Several years after my cancer treatment I had to have investigations for hip pains which made it difficult for me to walk and drive. They never gave me a proper diagnosis (just said it could be one of several things). It wasn’t bone cancer, and it cleared up after several months. It has come back a couple of times since, but not as severe nor as long-lived. I hope your scan shows nothing to worry about, and you can relax a little. I don’t think you need a kick up the backside. Sending you a cyberhug instead!

Thank you sdfmeg :slight_smile:
I’m not sure if what’s making me feel like this is related to the cancer worries or simply menopausal *rollseyes*!! Its really good to hear some positive news, I’m getting slightly fed up with people at work and friends (!) who feel a need to tell me abouty Great Aunt Jessie/Maud/Agnes who is still going strong 12 year after breast cancer diagnosis…oh they are riddled with it and won’t see Christmas but they’ve made it to 12 years!!!I want to be there a long time after that :-/.
I bit everyone’s heads off last night and I’m feel horrid this morning. Thanks for the hug, much appreciated :slight_smile:

Hi Mythos, big, big hugs from me too!! Because you have just had your mammo and have now been referred for a bone scan ofcourse your head will be all over the place. It brings everything back into focus again, I was terribly worried a few weeks ago and the ladies on here gave me so much support that when I went for my appointments, I was really calm. So my advice would be to speak about your worries to everyone. It’s very difficult sometimes to speak to family because you don’t want to scare or hurt them, that’s why I found it brilliant to spill the beans on here and get things into prospective and off my chest!! When you are very worried it is hard to take that Great Aunt Jessie is fine after blah blah years, you just want to scream I don’t care!! Bad I know but it’s all about you just now, really hope your bone scan goes well, I think you would be odd if you weren’t reacting at the moment, take care and keep talking xx

Hi mythos.
I’m not sure I can offer any solutions, but I can completely understand how you feel. I was 19 months post diagnosis yesterday. I was Stage 1, Grade 3, 18mm, ER+/PR+, HER2+. Node negative. I know, as my BCN said, there are a lot of “positives” in there, but like you, I cant help focusing on the negatives. I live in absolute dread/fear of it coming back. So much so, that it has an impact on my daily life. Every newspaper I read…breast cancer. Every “well meaning” friend/visitor, telling me all about friends of friends who are doing fantastic, X years after diagnosis. It doesnt help does it?! All you focus on is yourself and your own future and prognosis. And like you im snappy, tearful etc. ? menopausal as Ive not had a period since February 2011.

All I can say is, try and keep busy (works for me) and do lovely things with lovely people. Fill your days with anything, to occupy your thoughts. Ive almost got the knack of pushing it out of my mind when it creeps in. But it aint easy.
Sending you hugs.
Love Mandy xx

I decided that the mood changes were not something I could cope with, on top of all the non-cancer rubbish I was having to deal with, so I am now taking anti-depressants and don’t know how I managed without them. I still have my down days, but so does everybody. I just don’t tend to have them for weeks at a time any more.

I personally believe (not backed up by any research, I have to say) that my body LIKED its oestrogen, and when it was snatched away and I was thrown at breakneck speed into chemo-and tam-induced menopause, my body has kicked back with the moods, flushes and totally over-emotional inability to function. If I’d had a broken leg I wouldn’t have felt a failure, or ashamed, or embarrassed, to rely on a plaster cast and crutches to enable me to function. So I now refuse to feel a failure, or ashamed, or embarrassed, that I need help to cope with my cancer treatment. (Well that’s on a good day - I can still beat myself up about it when I’m having a bad one!)

You might find counselling helpful as well. Sometimes it really helps to get things into perspective if you talk things over with someone who is not emotionally involved, either with you or with your situation. Your BCN might be able to point you in the right direction. And then, of course, there’s the wonderful helpline on here. Give them a ring and let it all out. They don’t judge, they don’t criticise, but they DO listen.

Thank you so much everyone for your lovely replies and for your support. I decided to take my daughter out for lunch instead of sitting at home feeling sorry for myself!
Katytc - thank you for your support. You are exactly right about family. They expect me to be as happy as larry and do not understand (and I think get rather fed up) when I am constantly down. I feel guilty for burdeoning them with my worries and fears and find it really hard to strike a balance, especially with my teenage daughter between them not worrying about me but understanding why I am feeling so low.
Mangochutney (love the name!) - You sounds exactly as I feel. I too haven’t have a period since Feb 2011 and they did bloods on me recently, because they were debating wether to change me to an AI, which showed that I am well into my menopause but probably not ‘post’ menopausal just yet. I’m a nurse in a GP practice and for some reason my patients - most of whom know what I have been through as they know I was off for a while, then came back with VERY short hair!! - feel that they should share their cancer horror stories with me!! Sometimes its very difficult to remain polite. I also had a work colleague (when I was going back in for a breast reduction on the other side, which by the way failed big time!) say that it was ‘all one big holiday’ for me!!
Chocciemuffin (brilliant name!) - I’m at the stage at the moment debating wether I should go talk to my GP but have concerns about the interaction of some anti-depressants with Tamoxifen. I have had counselling which helped me through the initial stages but I’m not sure how much they can help me with my underlying fears :-/. I think I might give the helpline a ring when I am next home alone, might help to talk it through.
Have just received the date for my scan - Monday next week. My BCN is actually an old school friend (small world) and she has already said she will get my results for me as soon as they are available. I just ‘know’ they’re gonna be calling me back :frowning:
Thank you all, its nice to have somewhere where I can express my deepest fears and not have someone banally say; oh it will be fine - yeah right, coz I haven’t been there before!!

Hi Mythos
Thought I’d reply to you even though you’ve had some lovely replies.
I was first diagnosed in December 2000 at the age of 46, had chemo, mastectomy and radiotherapy.
I didn’t want any reconstruction but did have my remaining breast reduced so I could wear a ‘Contact’ prosthesis. I took Tamoxifen for 5 years and had regular annual check ups for another 5 years until July 2011 when I was discharged from the clinic. Such a wonderful appointment, oncologist gave me a big hug !!
So, why am I back in here reading the forum posts ?
In January this year 2012, I felt a lump above my mastectomy scar, I describe it as being where my bra strap meets the bra cup if that makes sense. GP thought it was fatty tissue but referred me to breast clinic. My oncologist has retired so I saw his replacement Sascha, not used to being on first name terms with medics. She did a biopsy and two weeks later I had surgery. It was a cancerous node behind my chest muscle which she was amazed I’d found. It was only because I was coughing and holding my chest !!
So, what’s my message to you ?
It’s to be positive and look forward to your life. In the last 10 years both my sons have married and I now have 4 grandsons. I refuse to be down about my life, it’s not something I could’ve changed so I’ve got on with it. Of course I’ve had my monents, really feel angry that I’m back on the old treadmill again, but I can’t change that so am just getting on with it. I now have lymphodema in my arm from the second lot of surgery but have compression sleeves to wear.
Friday I’m having a CT scan and all being well will go back to work next month.
Good luck
xxx

Hello - thank you for posting but if I’m completely honest you have just vocalised my worst fears :frowning: I’m terribly sorry you have a recurrence and truly hope that it can be managed so that you have many many more years with your grandsons.
I consciously avoid the Secondary breast cancer threads as I’m too terrified to look at them. I’m afraid at the moment I am struggling to be positive - hence my thread. I had been doing OK up until recently when my friend was re-diagnosed but that has really knocked my confidence. I admire you for being so positive and for just getting on with it, but in my current state of mind, I feel light years away from being able to be in that position.

Hello there,
I think a little chat with your GP about anti depressants would really help you as like Chocciemuffin I really do think that Tamoxifen causes the depression symptons. I was in such a dark black hole, I could not function to even go shopping. I felt absolutely dreadful. We are used to oestrogen in our bodies and this interacts with serotonin in your brain. There are lots of studies on the internet about it. The meds worked after about 6 to 7 weeks and I gradually started to feel improved.
Dont worry about the stigma of taking more pills, just think if you had high blood pressure you would take them anyway. I also go to a Self Help Depression group in my town , which really helps. I follow the Mindfulness Training and relax by doing my deep breathing exercises.
We can overcome it, we just need a little help sometimes and my GP says I will probably need to stay on the meds whilst ever I take Tamoxifen. She was very sympathetic and gave me Setraline which was increased 3 times as she could see I was not getting any better on the lowest dose.
Take care and lots of hugs . I hope you get some help soon, it really is worth it !! xxx

Can I just say, mythos15, that I totally understand where you are coming from. I am sick and tired of ‘battling’ my cancer demons, which I have been doing for the last 18 months, and doing a ‘great job’ according to all those people who think it is their job to comment on how well I’m doing. I have ‘bucked up’ and ‘just got on with it’ with the best of them! And it is all cr*p. Tomorrow, I am off to get some help with this from my GP. Never had antidepressants before, thought they were for weak people who couldn’t cope with the sorts of things that ‘normal’ people just got on with. So I am going to shove my ‘positive attitude’ where it belongs! I am going to be honest about all this and the impact it is having and do something about how I feel; because I can’t do anything about my cancer. Sometimes, trying to have a ‘positive attitude’ is frankly just another way of being in denial and is not the be-all-and-end-all goal. Living with cancer is the goal and I don’t mean living with it happily; tollerably will do, so that you can actually HAVE a life even if it’s not the way it used to be. I wish you the very best of luck and hope you can find the place from where you can build a new foundation for what is the rest of your life. I hope I can too because, for all my bravado over this, I am in much the same position as you are, if truth be told. Xxx

Deat Mythos, Just want to wish you well for your bone scan and I hope that it doesn’t show anything nasty and that you can get on with your life. Cancer can muck up your head and do all sorts of odd things. I hope you can get some help with your depression or at least have a chat with someone who can help you through this difficult time. Will look out for your your future postts. Wishing you all the bst and here’s another hug to help you through the next few days. Val

Mythos15 and tomskimum,
I too echo many of the thoughts you have expressed. I am now finding myself avoiding people so I don’t have to soak up that ‘positive’, ‘you are so brave’ stuff. I just cannot bear to hear it. I am only allowing myself to be around people who will acknowledge the true shock of getting a breast cancer diagnosis. This does not mean that I am crying into my hanky 24/7 - merely that they allow me to express my own thoughts and feelings. I do not have time for people telling me I am going to fine, unless it is my consultant!
Yes tomiskimum, ‘Living with cancer is the goal’ - that is all I feel I can do. but, it is a very unpleasant bedfellow, I have lost my job, my income, my hair, my breast and what else - who knows?
The ‘positive attitude’ for me is more about managing other people’s (non- cancer) feelings of discomfort and fear. I am not in a place to do that. at times I can not manage my own.

Ladies, thank you all so much for coming back to me. Its both reassuring but also sad that many of you feel the same as I do.
I’m not entirely convinced that my current low mood is not related to the bone scan as I was doing ‘OK’ before this happened, so I think realistically, I will battle on until I have those results and then go see my GP if I need to after that.
If one more person tells me I need to cheerfully ‘be positive’ I think I might shove it where the sun don’t shine. I AM positive…I am positive I have had cancer, I am positive that it has had a detrimental affect on both my life and the lives of those I hold most dear, I am positive that it will continue to do so pretty much for the rest of my life and I am positive that I will never be allowed to forget the dark shadow that hangs over my shoulder.
I do find it hard talking to family and friends about this now as its almost as if they’ve had enough of my whingeing :-/, I really do feel like I am burdening them now and so I’ll give the helpline a ring tomorrow when I am home alone and can have a good weep if I need to (!) but thank you all so much for listening, for you support and for your reassurance that its not just me!

Mythos, I too had a bone scan recently and you immediately think worst case scenario, the fear is always hanging around, it maybe at the very back of your head usually but when you have a change, it’s all you can think about!! My bone scan results were not bc related and as I said because I spoke on here, I actually really felt fine prior to receiving results. I would keep using the forums and it’s excellent that you are phoning tomorrow, really wish you well xx

Mythos
Thanks for replying to me.
I too was worried about secondaries and that was the first thing I asked Sascha when she confirmed my lump was cancerous. Her reply was that no, it’s classed as a primary as it’s connected to my first breast cancer diagnosis and not in another area of my body.
Good luck with ringing the helpline, I’m sure they’ll be able to help you.
Love
xxxx

Hi again, Mythos,
You may well remember that I had surgery about the same time as you, Im 2 years this month since finding my lump and it was december 2010 i had WLE.
I do have a lot of aches and pains, this time last year I was facing a bone scan due to back pain which had lasted for 4-5 months, And my bone scan was negative !
Since February this year Ive been suffering with left hip pain, it comes and goes now, but earlier in the year it was waking me up at night and I was finding my leg was dragging a bit behind me, then midsummer it all developed into quite severe sciatica pains, in my back/left buttock/thigh and ankle. My 3-monthly checkups with oncology have revealed no abnormalities on my blood results, in fact theyve improved, and ive refused a scan cos of scanxiety!!
Anyway, to get to the point, I feel loads better and have started cycling and I think I do agree with the onc’s opinion that these bony aches/pains can all be due to the tamoxifen. I do still get hot flushes but I see them as a positive thing, I much prefer to be warm than cold, and last year they kept me warm throughout the winter, lol!

I do agree that you’re doing the right thing and getting checked out, and I agree with what the others have said about getting on some medication to help the low feelings. I do sometimes get low and tearful but my main issue is anxiety so I still happily take the beta-blockers which were issued me at the time of my diagnosis.

I hope your work is being a bit more supportive towards you.
Take care ,

Truddles

Hi Truddles,
Glad to hear all ok with you - love the scanxiety - perfect word!! My gut feeling is that my hip pain is related to a long standing back problem, but its different to what I have had before. I didn’t actually go with the intention of them checking it out, it was purely that I have recently moved hospitals (another long story!) and was meeting my new Oncologist for the first time. I mentioned to her about my friend and said, its difficult to know when you are being neurotic and when you should get something checked! Immediately she asked what I was worried about and when I mentioned the hip pain, she said, right x-ray and bone scan.
Work - well lets not go there! My manager who was also diagnosed just before me, is very much of the ‘if you don’t talk about it, its not a problem’ gang so sticks her head in the sand and is one of those ‘be positive’ people >:(!! They are good from the point of view of paid time off for appointments, but I think fed up with me verbalising my worries!! I did apply for another job not long ago - got offered it too - but it would have been more pressured than where I am now and at the moment I feel more like reducing my hours than taking on more responsibility.
I think I will ring today and book an appt to see my GP in a couple of weeks time. I can always cancel if not needed but I should know by then if this low mood is long term or just reactive.

Mythos, I have PM’d you xx

Thanks mango - have replied :slight_smile: x