I may ramble and for that I apologize but as those know who are here we need to talk obviously.
DCIS, surgery, refused radiation, everyone wanted me on tamox.
I run, mountain bike, hike and am an accountant. I am mid life and healthy, in fact others my age envy my drive and how healthy I am, considering.
My thought is: Since the first day I took it, the second day I felt sick and lightheaded, took a day break, took it again and felt out of it, couldn’t focus or pay attention much, very tired but not tired really just could not get moving. I am very active and this is not good. I take a day break and then take it to see if it is me or the meds. It’s been a month now and I’ve taken almost the whole bottle. In that month both my legs are a painful numb ( I have a standing desk at work so it’s not from sitting too much ) my body aches, I have little energy and mentally push myself to get over the physical aspect of it. Sleeping at night when it hurts to lay on myself along with the hot flashes means I sleep little most of the time. I also had a hysterectomy so hot flashes are going to happen and I accept that but the rest of the symptoms are so dibilitating to someone like me who is used to being so active. I am concerned about losing muscle and my doctor said “we’ll keep an eye on you” but in the mean time my every day health feels impaired. I do not like this. I feel like my body is deteriorating.
My thought? If I stop and get a repeat cancer then cut them both off so i can be done. That would be worth the risk, being able to be “normal” in the mean time as it’s not guranteed it would come back. There is no guarantee either way so why should I have to be in pain and suffer for the next five years in hopes it wont come back while giving up or reducing activities because of the side effects?
I am so mentally twisted by this whole thing right now. I am stubborn and don’t believe in meds, I’d rather go homeopathy but doctors don’t believe that way typically and I fought off getting radiation. I am one that is hyper sensative to all meds as it is, usually half a prescription is enough for me, don’t drink really and don’t do drugs at all, and don’t smoke.
Anyway, thanks for “listening”. I am just so frustrated and want to believe in this med but the side effects really suck.
Hiya Tammy - Im replying but I dont really have any answers as I am a Office person too and not medically trained !! I took Tamoxifen for 2 years and then switched to Arimidex for 3 years which I found easier to tolerate but I think you have to chat with your Breast Care nurse and weigh up the pros and cons about reaccurance of your primary BC . These hormone therapies are designed ( I think to mop up any rogue cells )
They all have side effects which affect people in different ways and sometimes they do settle down once the body gets used to them.
Before BC I never even took a paracetamal as I hate drugs of all sorts too but needs must sometimes. I was 51 when I got the primary and up to then was very active and fit too .
If you do get a reaccurence - it will be harder to treat if you have not done the "belt and braces " mop up treatment offered but once again - trust your Oncologist to give the best advice.
Hi Tammy ,don’t worry about ranting ,this is the place to vent your spleen!!!Where to begin…,.Well I’ve been on Tamoxifen for 7 months and I definitely thought about packing it in in the first 2 months ,as I felt rubbish and had painful joints and my hair started to thin out quite considerably ,but the side effects did settle to a manageable level after about 6 weeks.Couple of suggestions ,have you tried taking it at night,I found this helped with grogginess,have you thought about trying another brand of Tamoxifen,people(not all) can find a great difference in terms of side effects depending on brand ,Teva and Mylan seem to be the kindest.Finally have you had a chat with your Oncologist about what percentage gain you get from taking the meds,I found it was only going to make 1% difference over 5 years and 2 % over 10 years ,not sufficient in my mind if my quality of life was seriously affected.Im guessing that with DCIS you probably only have a small percentage gain too?? Jill
Just to add, my oncologist said it may take time for your body to adjust to the Tamoxifen so side effects in the first 3 months may be transitional/temporary. x
Sorry to hear that you’re suffering. I can’t offer any advice as I haven’t started my tamoxifen yet. I had surgery in January to remove a very small tumour. I am starting 15 sessions of radiotherapy next week. Just reading through the warning leaflet for tamoxifen I’ve worried myself sick. I’m thinking any side effects I might experience will be confused as could it be the radiotherapy or medication?
I completely understand where you’re coming from regarding the way you feel and I hope you will receive good support from your doctor. We have to stick with what we believe in.