Decision: is HT worth it?

Hello, new member here.

I was diagnosed with invasive ductal carcinoma in Mar of 2020; age 54. HR+ Pghg+ HER2-. I was on HRT (hormone replacement therapy) previously for about 4 years. I quit HRT cold turkey upon results which was a horrible experience in itself. I was on birth control for most of my adult life prior to HRT. I was stage 1B, which I don’t really understand cuz there was no spread to my lymph nodes; I should be stage 1A IMO. I had two lumpectomies in my left breast. One was benign. I had the tumour tested which came back only 3% effective to have chemo, so didn’t need that. Did 16 sessions of radiation. I am told with HT (hormone therapy) I have 3% chance of it returning and 10% chance without HT. Does 7% warrant all the side effects (some cause permanent damage not just side effects)?

I did Tamoxifen for 1.25 years and the biggest side effect was mood swings. I was angry extremely easily. Zero patience, flipped out over nothing. Crying, couldn’t sleep. Felt pressure in legs, leg cramps, I took a break for about 3 months, felt so much better. Was put on Anastrozole as I am post menopause; age 56 now. It’s even worse. Can’t sleep, tired, no energy, liver enzymes increasing, cholesterol increasing, bone pain increasing, hand is tingly and numb, not happy, lose train of thoughts in middle of sentence, still freak out but trying to control it, edema, incontinence starting. Over all feel like I’m aging rapidly. 

So now I’m thinking is the 7% worth it? Being I’m not feeding estrogen and progesterone into my body; I’m actually producing trace amounts. And I had clear margins and no lymph node spread. I feel like I got into this situation from the HRT, which is done, shouldn’t I be fine now? Also being I had a benign cysts… Wouldn’t it have been cancerous if I was that bad?

Also something else to consider, I had a very bad mammogram 4 years prior to my diagnosis. Immediately following the mammogram I had bad pain and when I got home I had secretions on my left breast. It took 10 months to heal from this. I feel like a duct was popped in the process. Couldn’t this have caused a foreign object for my HRT to attach to and grow? No one seems to have experienced this. Maybe BC has increased so much due to this stupid method of testing?! 

Today I am about 8 days into stopping Anastrozole. (on it for 3 months) I feel better mood-wise but do not feel myself yet. Still stiff, achy and tingly. More time required. This medication goes deep in a short period of time. I just can’t imagine 3 more years of this!

I am scared to stop but also question if it is really necessary in my case? I may die of liver disease or a heart attack first if I keep going… Or break in half… 

Anyone else out there like me?

Thank you for your time in responding. 

hi there

I guess no one can tell you what your really asking …statistics are just numbers around probability…they don’t relate to an individual…if your odds are 90% chance of no recurrence That’s good…but always consider you could be one of the unlucky 10% …I had grade 0 cancer DCIS 4mm initially …I was told a 1 to 2 % chance of recurrence …I was one of the unlucky ones…and have gone on to have primary BC twice more…I took tamoxifen for 2 years…but I still got a new primary ER+ BC…so there’s no guarantees, even when you take the advised treatment,

 I’m now on letrozole… it’s not the best experience but there is no way I would not take it…I am not a risk taker…I need to know I have done everything I can to reduce my own particular risk…but we are all different…you don’t say what grade your BC was? Or the ER+ number? …mine was 7/8 …so highly receptive … when I had a previous BC it was 3/8 … so not as receptive…these will likely be factors when you are weighing up the information to make a decision I would imagine…I’m 57 now…I too feel like I  Have aged…but chemo has taken its toll ( Permanent ectopic heartbeat and neuropathy) …Even though I look the same… and the letrozole side effects are tolerable for me when I consider the alternative of potentially developing secondary BC …which is my absolute fear…my cholesterol increased after my first blood test at 6 months but the next blood tests showed no increase and it now sits at just 5…certainly not high enough for my go to consider statins…i initially gained weight when starting on letrozole …but this could have been due to better diet after chemo…My BMI is now around 19 and stable…so I’m back to a healthy weight…I still work but will be taking nhs retire and return this year…so will be reducing my hours to part time…which will make a big difference to my work life balance…I have 3 little grandaughters…I want to be around to see them grow up…but really, what I’m saying is…you have to decide what’s right for you and what risk you can live with …what risk you are prepared to take…I wish you well with your decision