Letrozole - aches and pains continue

HI All

First time poster, so not sure if this is relevant but my 2 cents worth....

I was diagnosed in June 2024, completely randomly and underwent my first surgery - a skin sparing mastectomy (they took the nipple), and sentinel node removal, from my right breast, less than 48 hours after confirmation from the breast surgeon of the extent of my cancer.

Prognosis following surgery at that point was revised to become a multifocal cancer in the ducts, glands, nipple, tissue and lymph nodes - grade 3, stage 3C requiring further treatment ASAP. 

After a few weeks to recover from my initial surgery, I underwent 5 months of chemo (AC Rubociclib) and Paclitaxel, followed by a further three weeks of Radiotherapy.

I then had a few weeks to heal, before my second surgery - a mastectomy to the left breast, including nipple etc, (DCIS and calcification present, likely leading to breast cancer), removal of the temporary expander to the right breast (previously removed), axillary clearance, an autologous DIEP procedure, which in my case required my abdominus rectus also being knitted, along with the portion of my lower abdomen that was removed being used to reconstruct both of my breasts. At this point, pathology indicated that of the 11 lymph nodes removed, 6 had still been cancerous, and that cancer had spread a small margin into the tissue surrounding the axilla.

I experienced post surgical complications and have also since developed fluid in my breast (am still trying to fend off lymphoedema) and on-going shoulder restriction and pain. I continue to work to strengthen my body, now almost 9 months following my most major surgery, but it is a very slow path. 

I am on CDK 4/6 Inhibitors and Anastrazole. I was on Letrozole for a couple of months early following my second surgery, however the bone pain in particular was excruciating! After extensive discussions with my oncologist and breast care nurse, I shifted to Anastrazole. It is far from perfect but the bone pain is much less and I'm more able to function day to day. 

While I have further surgeries and treatments to undertake, I can attest to advocating for alternatives when your body is at its limit. 

Wishing you the best of luck. 🙂

Thanks Tri.  

I really want to find others who've made the decision I have made to stop hormone blockers.   I am still seeing and talking to my oncologist, keeping the door & communication open.  

My oncologist started me on Exemestane and I had 3 very bad days of nausea and stopped.   I'm waiting for him to respond and know he will suggest I try one more before he gives me his "blessing" to discontinue.   

I'd really like to find other women who have decided not to proceed with hormone blockers.   Is anyone out there?   If so pls feel free to send me a private message.    I was fine with my decision at first but anxiety is starting to rear it's ugly head and it would be so nice to find a support group of some sort.     I have actually met at least 5 women who stopped hormone blocking therapy, one was 15 years ago and she is still cancer free.     Many of these women don't actually want to talk a lot about their decision past their initial conversation.   It triggers them and I understand this.   They have made their decision and want to move on with their lives.  Everyone makes their own decision and I'm 99% sure I'll stick with mine.   I'm still in early days and I know I won't want to talk about this for ever...but right now I do.

I applaud those of you who want to continue and push past any side effects.... but I'm not in that camp.   If it was 10 weeks or maybe even 10 months  of treatment I would consider this but 10 years on something that has serious side effects to my quality of life is not an option for me.  

I know the cancer may come back one day...but I also know from women I've met that it may not.

If anyone else has made (or is trying to make the choice I've made I'd really love to connect somehow.

Hi!

I was on letrazole from Feb this year and stopped taking it three weeks ago as I fell into a deep, deep depression (as in, I wanted to leave my husband and kids and was very , very low). I have no previous anxiety or depression. It took around 10/11 days to feel like myself - what a difference!! 

I am now one week into Exemestane. So far so good - but it is early days.

oh and the joint pain is insane. In.Sane. 

HiJosephineB1​ 

Your post came up in a reply toDianeD​ … I am sorry this sounds like the Aromatase Inhibitor (AI ) Letrozole has been a rough ride for you. My situation is a bit different as I have a slightly different breast cancer type (Triple Positive) and had chemo and immunotherap, but I am also taking Letrozole. The choice whether to continue is one that features in a very good BCNA webcast but if you want to continue I hope your oncologist can discuss the options of trying a different brand with you. With great respect to your GP, I imagine the oncologist will have a broader experience of different AI’s. From other posts by BCNA network members I have heard members say they’ve tried different ones and have found some suit them better than others, and there’s no real hierarchy, it just seems to depend on the individual. 
I hope you can get in touch with the BCNA helpline who might also help direct you to some resources to manage the anxiety you’re experiencing. It seems more than a few people reflect back on their choices and wonder if they might do things differently so you are among friends on the network. Sending you positive vibes as you navigate this space.