9 years survivor

[4951]

I had grade 2 ductal breast cancer late 2014 when I had just turned 60

I had surgery , Chemotherapy (and radiotherapy it was hormone related Her2 oestrogen and progesterone positive

I also had 18 doses of Herceptin

So I had belts and braces as the oncologist said

I have also been on letrazole since June 2015 the surgeon says I can stay on it until it’s 10 years

I have had side effects mostly muscle and bone pain I also have osteoporosis but to be honest I cope with them as I need to

I am so very grateful to be able to have the medication prescribed

I have a friend who is on letrazole and suffers baggy from pain in her joints and can’t wait for the five year’s minimum so she can come off it

I do feel as I’m getting older my joints are more tired so to speak but I’m trying to up my swimming and walking to strengthen my bones

Does anyone have any suggestions on how they cope with it

Thanks

[Happyrosie]

my story is very very similar to yours. I was 68, had mastectomy, chemo and radiotherapy and herceptin , then letrozole. I changed from letrozole after two years to another similar medication which had perhaps ten percent less side effects, then changed again to another similar one with no change to side effects. I think MacMillan has details of these on their website - have a look.

After eight years on this regime I asked oncologist her view as to whether I could come off this drug. There has been recent research which, in essence, says that a 75 year old woman with a 5 cm growth has the same chance, after eight years on letrozole or equivalent, of living another ten years as any other woman of similar age. But, my growth was nearly 10 cm and very fast growing and there are no statistics for my cohort.

So the oncologist said it was up to me.

I chose quality of life over extending my life. Having given up the drug a year ago I sleep better, hardly any night sweats, reduction in joint and muscle pain, lost about 4 kg in weight without trying.

I have a supportive GP (who has an additional degree in pain management) and after trying various pain medications, the usual, he put me on Butec (look it up). This has been really really helpful. I reduced my dose of Butec after I came of the letrozole equivalent but don’t want to come off it entirely as it’s so helpful for the continuing osteoarthritis that I suffer. Other than that, healthy eating, plenty of water to drink, and I do 10,000 paces a day on average even at age 77. I saw a physiotherapist for advice on exercises to help various joints and she said I looked exceptionally healthy for my age! I’ve never played sports and don’t enjoy swimming, but love walking.

Hope this helps!

[4951 in reply to Happyrosie]

your reply is very informative thank you

As you say good quality of life is more important as you get older

I have never heard of butec but I will look it up

It’s good to hear someone else’s story I hope you continue to enjoy your life

We are so very lucky

Take care

[Clyde12]

hi there,

My story is very similar to you and happyrosie. At 65 I had a Mastectomy plus all lymph nodes (R) removed. I had 2 tumours about 5cm each discovered on routine mammograms. Chemo, radiotherapy and a year of herceptin and I’m also on letrozole. I now have lymphoedema, osteoporosis, AFib, all thought to be as a result of treatment. Joint, particularly my hands and feet but others as well hurt but though I suspect most of this pain is from letrozole causing lack of oestrogen I also am sure that at 74 I now have osteoarthritis. Life is good and I wouldn’t mind having to take letrozole for ever cos I’m sure it’s keeping the aggressive cancer at bay. I actually dread being told I can’t have any more. Like most cancer patients I think it’s coming back all the time….I swim (badly) and do exercises in water as well as walking about 5 miles daily (in total) with our two rescue whippets. I used to drink alcohol to excess and don’t touch the stuff these days (I think it probably caused my cancer and it also sets off AFib so I’m better without it!) I do drink a lot of water and feel pretty good really . Life is worth living and a hot ‘seed’ bag in my back works wonders. Good luck to us all.

[4951 in reply to Clyde12]

great to hear from you and your journey and it’s so good to know we are doing so well after our treatment I like you would take it as long as they prescribe it to me

I would just like to see if there is anything they can give me for joint pain

The lady I spoke to before talked about betec I will speak to my GP

Good luck for the future

[Clyde12 in reply to 4951]

I’ve never heard of Butec either but will look it up.

Best wishes. X

[waveylines]

I was diagnose with bc back in 2014 it was a large very aggressive tumour, 10cms Her positive, estrogen positive, multifocal. . Had the full works 6x FEC-D, 6 months of Hercepton, 15rounds of Rads, Masectomy,, examastane 7yrs and breast reconstruction. Also had Alendronic as bone strength dropped due to treatment.I stopped at 7 yrs as the Examastane was affecting my mental functioning (recent research shows this) and my QoL The estrogen blocker cause prolapse and bowel incontinence. Which Im being treated for Also Afib which waiting for an op. I'm 67.

A year off it and I feel much better.

Given how aggressive my bc was it's highly likely it will return at some pount

.. I don't think about that but focus on what I have now. Every year is a extra year that if nature had it's way I wouldn't have had.... so am beating the odds.

[Linkj]

thank you for your post. I was diagnosed in 2017 at age 63 with ER, PR and HER2 positive and like the others had all the treatments, mastectomy with delayed reconstruction chemo, radiotherapy, Herceptin, zometa and exemestane. Interestingly I also have AF, responding well to my second cardiac ablation. My oncologist said caused by meds but cardiologist says my age!!

I have seen some American research showing that the risk/benefit of Letrozole, exemestane etc is 7 years. I am 7 years October 24 and so intend to have a second opinion oncology appointment as this drug has aged me 10 years!

[Runmash]

Hi everyone, hope you’re all doing well today! I was diagnosed in late 2018 at age 54 with invasive lobular bc HER2 negative ER+ 4cm tumour. (My mum was diagnosed aged 41 and died aged 44 when I was 12). I had a mastectomy and radiotherapy. I opted for reconstruction but this ultimately failed. I initially started on tamoxifen (I was perimenopausal) in Jan 2019. I only had one period after starting tamoxifen but had no joint issues. I even completed couch to 5k and was running regularly and generally felt quite good about myself. In June 2020 I had a bleed and obviously thought the worst but it was checked out and I was ok. However a couple months later it happened again and it was determined to be a side effect from the tamoxifen. I was offered a hysterectomy or a move onto Letrozole. I was planned to go onto Letrozole at some point so I went with that option in Jan 21. By August 21 I was feeling I lot of joint pain although I stuck with it until September 22 when I saw my consultant by this time I had to stop running and put me into a bit of a negative spin. I was moved onto exemestane and although I no longer run (I do use an exercise bike, walk and do some weights - I have osteopenia due to treatment so trying to do weight bearing exercise) the joint pain is much better than when I was on Letrozole. Unfortunately I think it’s all down to the individual but if you are struggling with the side effects I would certainly try the alternative aromatase inhibitors to see if one is better for you. My 5 years is coming up in Jan 24 and I am not sure if it will be suggested that I come off the exemestane for good - I guess that will be a conversation I will be having later this year. Take care and best wishes

[4951]

hi Runmash

It’s great to see the different medicines we can all have

My oncologist said in the early days there are so many treatments made to fit each person and their diagnosis available today

My Mum passed away at 69 with BC she only had it two years and my Sister at 57 again had it about 2 years just after she passed away the treatments changed massively and tailor made to each diagnosis

A few of the ladies I met while having treatment were on trials and lots more across the world I read all the information on them which was mind boggling at times but having worked for 40 years in the NHS I couldn’t stop myself

I am forever grateful because some of these trials ended up becoming the preventative treatments we are all having today

What brave women they are

Keep well and positive I swear that’s a huge advantage