Still soooo tired and ache 5 years post treatment!!!

Hi. I’m 48 years old and had breast cancer 2010. I had lumpectomy, followed by chemotherapy and 20 sessions of radiotherapy. I went onto Tamoxifen for 5 years and I am now on Anastrozole for another 5 years. Before treatment I was a very active and very rarely poorly person. Oh how times change!!! I am now always tired, to the point that if I do push myself at work, I feel sick and dizzy. It’s like hitting a brick wall or some one unplugging you. Sweat pours out of me. I do suffer with hot flushes, but this is different. I ache all over and even I’m sick of hearing about my ailments now, so try to ignore them! 

My right breast,shoulder and shoulder blade ache a lot, I’m guessing maybe an after effect of radiotherapy.  Is there anybody out there with similar symptoms and how do you deal with it please.

thanks 

Hi, i am almost 2 years post surgery x2 and rads, on anastrazol and little older than you. Given fatigue and side effects have been switched from generic anastrazol to Arimidex, side effects from this medication reduced, sleeping better , still pacing myself.
Saw a MLD therapist on monday as was concerned re my arm, bra more uncomfortable… (i had been referred by my clinic for assessment) arm measurements good, but some lymphoedema of breast. Following treatment big improvement amd instructed on self management.
Hope this may help.
Lexilou x

I was diagnosed almost 7 years ago and have exactly the same symptoms as you. They have had such a devastating effect on my life I have had to retire early from my job as a teacher. I tried everything to keep my job and fought for 5 years but in the end I was so exhausted and ill all the time I had no choice.
I have to say since I retired last year my health has improved. I still have to be careful not to overdo it but I have some quality of life back. However the financial implications have been huge and that causes worry and stress!
I’m sorry I don’t have anything more positive for you other than you’re not alone and listen to your body, try to get the rest you need. And I understand your frustration, I feel it too!
I’m sharing with you because I often feel very alone and feel no one understands. I hope this helps you a bit.

Interesting about Anastrozle. Thanks x

Hi, I am 49, and like you have always been fit and well. I had Breast Cancer in 2014. And had similar treatment, a lumpectomy, 6 sessions of chemo and 15 sessions of radiotheropy. I was given Tamoxifen, which I took for 9months, but after a few problems this was changed to Anastrozole. I have been back at work now for 13 months, but I am still doing reduced hours, as I am always tired. I ache all over and have the dreaded hot flushes. I have gone from one ailment to the next, and know people are thinking, oh whats up with her now. I was so relieved when I read your post, to know that other ladies were going through the same and it wasn’t just me. I wish I could help you out with how to deal with these symptons, but I haven’t found anything yet myself, other than a good händ held fan which goes everywhere with me.

I was also diagnosed in 2014, mastectomy, chemo, rads, recon failure, further recon due. I am also totally exhausted, aches and pains everywhere. I used to be a gym and exercise adict but am reduced to yoga and dog walking.

It’s so frustrating, I was made redundant during chemo and there’s no way I can consider job hunting yet.

I have found that the antidepressant sertraline has reduced the hot flushes. I have recently had full bloods, bone scan, CT and MRI to see what’s causing the pain and fatigue, but inconclusive, awaiting follow up body MRI in April then review with onc.

I hate to think this is as good as it gets. Any positive stories welcome!

I’m into 18months post lumpectomy,axillary clearance,chemo and 25 rads and felt much more fatigued after returning bto work during and after radiotherapy.Problems that I had with Discs in back have returned and got worse,I also have lymphedema in my breast and armpit.The hot flushes on Tamoxifen were pretty unbearable.

I also never even got colds before but now I feel tired and seem to have lots of ‘odd’ ailments!!

 

One piece of advise I can offer…I was given a free course of Acupuncture through a local charity and all I can say is WOW.

The flushes are much much better and when I do get them,they are less intense and shorter.It has worked so well that all the Oncologists at my hospital send you for it as it has been so successful

 

The other thing I have developed is painful knees and I feel my bidy has aged a lot.

I sympathise with you all!The one thing that keeps me going is walking my dogs but I am finding it hard to keep going at work and regularly fall asleep straight after my tea!

Hi so pleased i have come across this forum i thought it was just me i was diagnosed July 2014 lumpectomy and double breast reduction no lymph involvement luckily stage 3 cancer estrogen positive 6 fec chemo 15 rads letrozole for 5 year never ailed a thing previously i was 54 at diagnosis the tiredness i have now is unreal dropped my contract at work to 24 hours i have even been thinking there must be something wrong to feel this tired hot flushes too but it all seems to be what all of you are experiencing so that makes me feel better i had hoped to feel normal again after treatment but sadly it looks like this is how life will be from now on so true what you said how times change xx

I was diagnosed with Invasive BC five years ago this summer.  Lumpectomy, full lymphnode clearance, chemo then rads.  I have been on Letrozole since finishing treatment, and have been told that I need to stay on it for a further five years, as per NICE guidelines.

I would love to say something positive re the fatigue and joint pains- well the fatigue has only improved in the past eighteen months, but the joint pains are chronic, and sometimes I am hobbling around like someone three decades older than my 57 years.  On really bad days, I cannot drive as my fingers are too painful.  To add insult to injury, the Letrozole has caused bone thinning, so I also have to take medication to try to stop it progressing.

Borisdog- I was in a similar situation to you.  I was simply too unwell to continue in teaching, so I retired early three years ago.  I tried to go back, but the rigours of the secondary classroom were beyond me, as I had totally lost the robust tenacity I had had before diagnosis.

In spite of all this, I feel it is a choice between the devil and the deep blue sea. Studies show how very effective the aromotose inhibitors such as tamoxifen etc are, at keeping the cancer from returning, so it is a very annoying, and often debilitating, side effect I am prepared to put up with!

 

Hi Ladies, particularly Magical Moon ‘Fountain of all knowledge’

 

I have noticed some ladies refer to their ER and PR with a number after it, i.e ER+8 what does this mean and how do you find out what your number is.  I am ER+ had 3 tumours 1 22mm Invasive Lobular, 11mm Invasive Ductal and a tiny 6mm ductal, 1 lymph node involved so had chemo then re excision for clear margins (thankful they were) and 20 sessionsn of radiotherapy. I am now on tamoxifen as ananstrozole just was horrendous after 10 days.

 

I am thinking about stopping the tamoxafin due to side effects but wondered how do I find out my risk. The canadian cancer website says it is 17% but the nhs predict says 6% but they only let you put in 1 tumour so I put in the biggest.

 

just wondering if the number after the ER will help me make choice

 

Thank you

Hey MM,
Ask for 3 months trial, allow time for the old brand to wash out, and time for Arimidex to settle. You may have to go via your onc, my GP is very supportive, but this is a specialist drug with cost implications. Recommendation from onc may carry more weight when your GP has to discuss the prescribing costs with their partners.
Also, if you feel better, you may then be better suited to returning to the workplace, thus contributing back to the system. I have gone from 10 work/ week to 25. (New job took my hours up)
Keeping everything crossed for you x x

Ohh result i hope for you Mrainbow

Thank you Magical Moon, I will ring my surgeons secretary on Monday and ask for a copy to be sent to me.

 

I have started having the tamoxifen with my main meal about 7 and that has stopped the nausea (amazing). Slept a bit better as hot flushes didn’t wake me so I brought the tamoxifen forward to lunch time today and will bring it forward to breakfast over the weekend to see if this time suits me better and have it with food. My mood seems better to - this might all be coincidental but hey if it is working for me that can only be good.

 

hugs - Michelle

Well I’ve been on Arimidex for nearly 3 months now and I feel shocking. My feet are so painful some days I can hardly walk. I am very breathless and my whole body aches. Especially my shoulders.  I ended up on the oncology ward the other day, because they thought I may have a PE !!! CT scan thankfully ruled this out. I’ve lost all my get up and go completely. Back to see the oncologist again today to see if I can go on a different drug. Fingers crossed x

So relieved to read this, thank you ladies!

finished in March and am still struggling with anxiety and exhaustion and was struggling with feeling guilty cos I ‘should’ be better by now. Even tho healthcare people say it takes ages and to be nice to yourself, it’s nice to read others experiences. I’m not being lazy!

any tips for anxiety? And for coping with daily pressures? Everything seems overwhelming and no end or positive outcome in sight. Help!

Hi bondgirl, it’s my understanding that er and pr are graded out of 8 - 8 being the most affected by the hormone. So the higher the number the more receptive it is to hormone treatment (I think - someone correct me if that’s wrong).

I had two tumours. An 8cm and 2cm )yes that is cm not mm), 26 lymph nodes affected and er+8. I managed about 8 months on tamoxifen. 3 months on zoladex injection and anastrazole and have now been off everything since July as my life was intolerable on both combinations.

The predict tool gives me 50/50 but on the drugs I was depressed to suicidal, sweating profusely that I had to carry change on underwear and a flannel to mop up the worst, argumentative and just a right miserable old bag! I dedcided that my children are better off with a nicer mummy for 5 years rather than the mum from hell for 10!

Annual mammogram and check up on Monday - my theory will be put to the test!

It’s a tough decision to make but you’re the one who has to live with it. I’m still pretty tired and have to pace myself if I have a lot on, sleep deprived, and aches and pains. Also having to put up with periods and the bloating, back ache and downright inconvenience that brings!