I’m wondering how others feel in terms of tiredness post-treatment. I’ve recently finished 21 months of chemo, rads and Herceptin, leaving me with just Tamoxifen. But although I feel a bit better than a year ago, I find I have no stamina and am just so often tired. That makes me wonder whether it’s secondary cancer brewing so I wondered how others in a similar position cope.
Second question is, what kind of gynae check-ups should you have while on Tam - my onc doesn’t think anything is necessary unless there are obvious problems. And have I read something about smear tests causing bleeding when on Tam?
Last q is the most difficult: how do you cope with living with the possibility of secondaries? And does anyone else feel bitter when with parents or friends who are in their 70s and 80s? I can feel really bitter because, at 43, I’m afraid I won’t have the 20 years of grandchildren that I’ve given to them. I want to see my sons graduate, have children…
Jenty
I’m not surprised your tired 21 months is a long haul, my treatments took 7 months and I was left wiped out at the end so don’t be too hard on yourself. I had a smear test shortly after DX just cos it fell due so presume I won’t have another one for a few years so may not come across this problem. No one has mentioned the need for any other check ups just cos of this.
I don’t feel bitter towards older friends and rels although you can’t help yourself wondering if you’ll get to be a ripe old age or not. I just try not to dwell on it. I have to say I haven’t ventured into the secondaries threads as it is too much for me, I have total respect to the ladies [and gents] who are in this position but if I read something that I think I relate to I then stew on it for days so I tend to avoid it. If you are worrying about the tiredness and thinking there is a problem just go and see the doctor and they will put your mind at rest. It’s what they are there for and we musn’t think we are being a nuisance or a hypercondriac [is that spelt right?]
I am also 43 [well very nearly] and have every intention of being around to see my two do all the things your sons grand parents have enjoyed and so will you.
again my treatmentwasa double mastectomy,then 1 month after that i had 8 months of chemo again horrible! then radiotherapy,i then had to wait 12 month to have my breasts put back on!!! and that was 8 weekks ago i have just turned 31 years and i agree jenty thats what is wrong with me TIREDNESS!!! this is what has got me down through the good and bad times which have been many i am generally a very happy confident person,always have been and i now know i don’t want that to change i now feel as if i have a second chance and i’m always having to feel positive even when i don’t,my whole life has changed as well as me and i can’t change that back but i do believe that at some point yes we’re all diff,but at some point you can either go oneway or the other,i carry a gene on my mums side,she died with bc,and other in the family,yes it may come back who knows?? but while i’m here believe me i’m not going to waste it worrying all the time keep your mind busy with anything!!! take care em ; - }
Thank you to Aj and ema for your positive comments. Maybe tiredness is just expected, then. It sounds like we all go through so much but ema, yours is really tough and at your age. Well done on getting through it and being so determined not to waste whatever time you have. I think keeping busy with things that we would have otherwise have been doing is a great idea. You can quite obsessed with this cancer, can’t you, and it makes no difference. I do look at the secondaries section and that is pointless for me just now and I think you’re right, AJ, not to go there. But it seems like a line you have to tread between being realistic and being unnecessarily afraid.
Hi,Jenty
Im not surprised you still get tired after all the treatments . I finished chemo/rads in Feb and like you am on Tamoxifen now. My onc told me it can take 12mths to get back to near normal energy levels .Tiredness ia also a side effect of Tamoxifen so i wouldnt worry to much ,cancer treatments take a lot out of us.
As far as i know we dont get any extra Gynae tests whilst on Tamoxifen unless we present with any unexpected symptoms such as unexplained bleeding, which should always be checked out. Ive also just had a smear test last week and had no bleeding at all. So try not to worry.
I realy try not to dwell on the what ifs , i know its difficult sometimes because like AJXXX says sometimes i might read something and it will put me on a downer for a while, so i try to only read whats relivant to my situation . None of us knows what will happen in the future and thats also true for people who dont have cancer, so enjoy the here and now cos wouldnt it be a waste to worry about something that may never happen, 2 ladies i know both had BC 20yrs and 25yrs ago both are now in their 80s and have never had a reacurrance (one of these ladies had a very aggressive BC and was initally given 6 months to live) but shes still very much alive and well. Being realistic to me is what i know now not what might or might not happen. I intend to get to that ripe old age and so will you.
Take care
Lindiloo x
Hello Jenty and ladies,
I am also 43 and have just finished my chemo, radio due to start in 4 weeks. I know EXACTLY how you feel Jenty - i too feel sad when i see older people with grandchildren and wonder whether i will be around that long. I am worried sick about secondaries and wonder how i am going to get on with my life without fear. My children are 5, 8 and 10 and i just don’t want to think about putting them through any more especially the loss of their mother. I know all the statistics and i know i should be thinking positive but i find it so difficult. I never drank much, kept fit and breast fed all my children so my biggest question is Why Me? I had a large tumour and 16 out of 24 nodes were cancerous so i also find myself jealous of other women with small tumours and no nodes infected! It does horrible things to your mind doesn’t it? And the tiredness takes so much out of you.
I hope you are all enjoying the sunshine - that makes things a little brighter don’t you think?
love to you all,
Liane
Like you, I have just finished 22 months of treatment which has gone really quickly, chemo, WLE, chemo, rads and 12months of herceptin. I finished my herceptin in March and have started to notice that I have quite a lot of energy returning. I have been lazy for the past 2 years due to treatment so I am taking it slowly and doing what I can when I can and if I have a splurt of energy I make the most of it. I put my tiredness down to herceptin as near the end of the treatment I was exhausted. I am not on Tamxifen so the other girls are best to advise yu on the side effects of that. You need to remember that you body has been so busy fighting this disease with all the drugs in it that it needs time to recover and we are all different.
I don’t feel bitterness about older people, I just find it so annoying when they whinge about something really stupid and I have to stop myself saying I wish I had had that instead of this!
I had a really bad day about three weeks ago and this site really helped me get through that day, I don’t want to look back in 10 years and think ‘all that worrying I did and I am still here’. As my BCN says, we will deal with it when it comes back. Its out of our control and if it comes back then ‘bring it on’, I am determined to see my daughter get married, she is 2 now.
I too was dx in dec 07 and the hardest thing I have found is the lymp nodes - 5/9 involved. I keep on thinking how do I know it hasn’t gone else where and how do I know the chemo is working. I have 3 daughters 8,4 and 2 and I too want to watch them graduate, meet boys, have mood swings, have kids and help them as a grandmother when they get older as its hard work being a mom, working and running a household which I’m sure you call all agree with.
I look at old people and think how lucky they are to get to that ripe old age and sometimes think i wonder what experiences they’ve experienced during there life time. Even though some may moan and look sad I’m sure they have some fun along the way and I would love to get to there age.
I know I sholudn’t but sometimes i can’t help myself looking at the threads on secondaries - they best thing as most of you say is to not worry about what hasn’t happened but I think I’m almost mentally preparing myself of the what ifs ? Yes it does knock me around emotionally when I read them and I need to focus my energy into th things that are important but when your feeling low both physically and emotionally you can’t help but dwell!
What would be a good pick me up it to hear of positive stories of women who have survived many years with lymp node involvements.
Thanks
Sukes
Hi Jenty,
I have only had 12 months of treatment and i am tired all the time, your post summed up exactly how i feel, im 35 and i know i have a good prognosis, i have 3 children and wonder if ill be still here to hold my grandchildren, i find it really difficult to talk to older people ( people in there 80’s) because they just dont realise how lucky they are, i neighbour of my parents had cancer in his 70’s and he keeps telling me if he can survive it then so can i, i know he means well, but im sure i could come to terms with it better in my 70’s then in my 30’s, if that makes sense!!!
Anna
Hi,
I was dx in jan., 04, grade 3 12mm tumour, no nodes involved, WLE, chemo, rad’s now Tamoxifen…I think the tiredness you are feeling Jenty is probably due to the length of treatment you have had…21mths is a long time and alot of treatment your body has under gone a great battering of different drugs etc.,.
I can appreciate exactly how you feel re., wondering how long you will live for, I was 43 when dx…I live in constant fear…had to have a FNA on Friday as I as concerned about an area round my scar so am now waiting the results and very scared…I don’t think the fear really ever goes away I think we just try to put it to the back of our minds…until check up time is due or you are worried about something after examining yourself…its not easy to live with this constant anxiety.
Well I to am 43, I have 6 kids and have never considered that there was an alternative to seeing them growing up. I have every intention of living into my 90s and I will treat this as nothing more than morning sickness ( something that has to be indured to recieve a beautiful outcome). I have only started treatment but do have tamoxifen finish off with for 5 years. I refuse to let myself get negative and I do stay positive. When I was first diagnosed I couldnt think 1 person that I wished had it instead of me, so now every day and every night I am grateful (not a religious person) that the doctors found it, that there is treatment, that I am well, that I will get great boobs (after feeding 6 kids I need them) but most of all I am grateful that I am well, that I have a healthy body.
Hello to all you have added comments. It’s been so reassuring to read all of them because you realise what you’re going through mentally and physically is normal. Having said that, it would be far better if all of you weren’t going through it too! It makes me feel really angry at this disease - although the medical profession is getting a bit better at treating it, they don’t seem much closer to working out why it happnes. For so many of us, we’ve done the right things like breastfeeding, keeping in reasonable shape etc.
Mentally, it seems we just have to make the best of a bad position. But I think Lindiloo’s points and Mandy’s were really helpful - it might happen, but then again it might not so deal with it when it comes. I know exactly what Sukes means about preparing yourself for it - I think so we’re not as shocked as the first time - but it could all be such a waste. It’s also not a disease that you give the benefit of the doubt to. But I agree that it’s always heartening to hear about long-term survivors.
Let’s hope it’s all of us. And that there will be increasingly better treatments available for us.
I’d be really interested to know whether anyone has had effective counselling about how to deal with the mental / psychological side of all this. it seems to me there’s going to be an ever-growing portion of the population that needs it. Doesn’t it seem sad that there is such a real need for magazines for breast cancer sufferers and even children’s books to help the children of victims? Where will it end - in a haves and haves-not society?
Thank you so much for replying to all of you.
jenty
I find my mental state goes up and down with my tiredness. I was dx in Feb 07 at 44, and have had the works - mastectomy, 4 x FEC, 4 x Tax, rads, and now been on tamoxifen for six months and had 8 out of 18 and herceptins. I was at a low ebb when all of this started as my mum was dx with untreatable cancer, completely out of the blue, in Nov 06 and died in Jan 07.
So why am I tired? Is it the after effects of the chemo? Is it the tamoxifen? Is it the herceptin? Is it because I’m not sleeping with the hot flushes? I don’t know what to blame and so don’t know when to expect things to start to get better. My hot flushes have gone ballistic recently, I’m getting them every 40 minutes, ending up wet all over my upper body. Then I get cold as all the sweat dries on me. I was at the ladies cup final yesterday (not my choice of how to spend my bank holiday, but my 13 yr old daughter plays football) and our side of the pitch was in the sun all afternoon. It was awful! Never been so hot & dripping in my life.
Add to all this a daughter doing A levels and a son doing GCSEs…
Dear Roadrunner
I wish I could help in some tangible way. What an awful lot you’ve been through and you’re still having Herceptin and having menopausal symptoms. Is there any help for them if you ask your onc / GP? No wonder you feel so exhausted. And it is a real pressure having teenage children doing important exams - mine are around the same stage.
Maybe you could think that all the treatment you’ve gone through is an investment in the rest of your life? Surely all that treatment will pay off.
Just out of interest, is the Tax much worse than the Fec? I had my suregery in france and they recommended 3 each but here my onc went for 6 FEC. I’ve always wondered whether I would have been more covered had I had the Tax for the second half, but I had/have a feeling it’s much worse than FEC and didn’t ask about it at the time.
Be kind to yourself - don’t expect of yourself what you used to do at this stage and have an many treats as you want!
Thinking of you and trusting that things will gradually improve. From my experience of recently finishing Herc. I can say that it’s easier to forget about cancer when
you’re not at the hospital every three weeks.
Well ladies I am 64 with grown up kids and little grandchildren,I’m exhausted 12 months after end of chemo and 11 after treatment.I’m not ready to die,I dont feel lucky to have got cancer latish.There are still so many things I want to do.BUT I agree with you all.Better in my 60s than in my 30s but oh dear friends how much I wish it had never happened to any of us.Love horace[val]xx
Hi Jenty
I was due to have 6 FEC but i was raken ill after the 3rd so my onc changed me to TAX. He said that I wouldn’t get the nausea which I was very pleased about cos I was on 3 different anti-sickness drugs but the TAX was horrendous. I went from 1 week bad and 2 weeks good to 2 weeks bad and 1 week better, had no blood count so had to go in for 6 days with complications but hey ho we got there in the end.
My sister is a nurse on intensive care and although she hasn’t got any experience of cancer or treatments she has alot of experience of bodies in trauma and she explained to me that because the treatment attacks cells, both bad ones and good ones we can only renew the goo d cells when we are asleep, your body cannot do it whilst you are awake because it is “in use” so that is why we sleep so much after the treatment has finished it is to give us time to repair ourselves. My treatment finished in early January and I am now starting to feel my energy levels getting back to normal.
AJxxx
Thank you for your kind thoughts. I’m having a better day today - my hot flushes have died down a bit.
Yes I found Tax much worse than FEC. It was truly horrendous, but I hope that it has done was it was meant to do. I plan on seeing my grandchildren get married!