Cancer was easy Tamoxifen is killing my life

NewBoobsPLS

Hi all, it's been awhile since I posted. 
As some of you may have read before diagnosed 2020, double mastectomy with recon, chemo finished and now Tamoxifen for almost a year. 
I got through everything realatively well and held it all together for so long. 
I'm now not in a great place.
I feel i need a break from life.
Hormones are up and down, my poor husband doesn't know if I'm leaving him or madly in love, i cry at nothing and then don't blink an eye lid in other circumstances. I feel like I'm bipola, manic and a gold fish at times but i keep it together.
My job is demanding, my life is fast paced but i think i just need to stop.

I came off the medication for four weeks and felt amazing. Spoke to my oncologist, we were going to try something else but decided to go back to Tamoxifen whilst we await a blood test and see if i am in menopause yet. I have three weeks till i see her again.
I really don't think i can do this hormone shit for another 9, yes 9 ,(lucky me because I'm "young" they recommend 10yrs not 5) years.
FML anyone else experience this?
And yes I'm at a low at present i recognise so i have told those close that I'm breaking.
I just don't think anyone gets it.
Don't worry i would never hurt myself. I lost someone dear to suicide so i know what it does. This just sucks. Just looking to see if anyone has tried anything different.
...

FLClover

So good to hear from you @NewBoobsPLS, I’ve been thinking about you a lot lately. 

I’m not on T, but I know a close friend who is, and she has reported exactly the same symptoms. Then there’s all the ladies who have also written of these same symptoms on the various BC pages. I’m not sure if changing to an AI would help, but it might be worth a try. You’d have to get the Zoladex shot too if you’re not menopausal, but it could be worth it. 

Then there’s also the ladies who don’t take hormone blockers, who had hormone positive BC and are still doing well. 

I’m not sure what the right answer is, but I think continuing like this is probably not the best. It’s not good quality of life at all. We didn’t try so hard to beat this just so we can be depressed all the time. 

I think maybe talk to your onc about different options, as this is obviously not working for you. 

♥️

Zoffiel

It's a shit show @NewBoobsPLS

Over the last 16 years I've done every version of indignation. Twice.

There are many reasons no-one wants this disease.

Anyway, given there seems to be no alternative, we just keep plodding on. Not being pleased about the whole process is, in my opinion, healthy.

Hang in there. Mxx

Julez1958

Hi I am not on tamoxifen but on Astrozole as my cancer was hormone positive and I am post menopausal.
I got carpal tunnel and trigger finger and my oncologist (who looks like she is 20 ) said “ oh you can have surgery for that”.
I wanted to say how about YOU have the surgery then?
I am still contemplating surgery ( I am 18 months in).
I didn’t know anything  about breast cancer until it happened to me .
I had no idea that the “cure “ would cause new and horrific assaults on my body.
But at the end of the day we follow the medical advice to give ourselves the best chance  of survival.
Take care
🌺
 

Cath62

Hi @NewBoobsPLS,

I hear you about tamoxifen. I was post menopause but started on tamoxifen 20 months back after treatment. What a nightmare it became. Mood swings, breathlessness, fatigue beyond belief. I felt like I was 80 something not 60. I stopped it for 6 weeks and felt 50 and Fantastic. However I now have just started Letrozole used in hormone positive post menopause bc women. Early days but some joint soreness and a bit of mood stuff again. I am hoping it settles. If I struggle with this I may try another. My pathology should a very high risk of return so keen to continue to try with the AIs. Fingers crossed for you. Best wishes 

HappySoul

Wow @NewBoobsPLS you have just described exactly what I’ve been through! 2 years of Tamoxifen & I nearly quit my career & left my husband to run away & live all alone, I couldn’t stand anything or anyone. Zero tolerance & angry with the whole world. 2 months off Tamoxifen & I’m like the old me, I am actually feeling great.
But the break is well & truly over & I start Letrozole tomorrow, I’m kinda anxious!
I was almost at the point to say no hormone blockers but the med onc wants me to try this. I wonder if it’s really worth the poor quality of life - hot flushes, mood swings, dreadful sleep & brain fog. 

BUT I’ve also started using a hypnosis app for hot flashes which gives me great hope! And I’m in my 3rd week of using it & I’ve already noticed my flashes are less often & less severe. I think it’s also helping me be calmer & less anxious too. There are some really legitimate studies about the effectiveness of hypnosis and it’s also been shown to even help people who are sceptical (which I was until I started feeling better). I’m not even sure if it’s actually hypnotising me but at least it makes me feel more relaxed & more in control of my life. It’s called EVIA if anyone is interested.
Plus, I found the podcast by Dr Charlotte Tottman “Upfront about breast cancer - what you don’t know until you do” extremely helpful too. Even my husband listened to it & said it’s helped him understand what I’m going through & why I’m all over the place mentally & emotionally. These things give me so much hope.. maybe they can help you too

HappySoul

I just wanted to add that episodes 5 onwards of Dr Charlottes podcast were what my husband found most interesting. Also, my McGrath nurse has been an invaluable beacon of support through all of this, they are amazing!

TonyaM

Hi,I had all those awful symptoms and the only reason I got through 5yrs of Tamoxifen was because I took a very low dose antidepressant called Endep (10mg). It didn’t seem to have any side effects either.

NewBoobsPLS

@cath62 i just had a meeting with my surgeon and he is going to meet with my Onc and they can decide if it's worth it for me. I also have a referral to see a psych so I'll see what they have to say.
I resigned from my job today to take a month off for me time. 
@HappySoul ill review the podcast thankyou. The hypnosis also sounds interesting. I'm willing to give anything a go at this point. I'm only 1.5 yrs into a 10 yr ai journey. 🫣