I’m so sorry that you have been struggling with the severe joint pain and it certainly seems like you have given it a fair go - rather longer than me .
My Oncologist said she would like me to try Exemestane but yes my impression was that she was philosophical about it when I mentioned that I might not stay the course . Some of my side effects on Anastrozole settled down after a couple of months ( though sadly not the joint pain ) but it might be worth giving the Exemestane a little bit longer for that reason. Nearly all my joint pain and stiffness cleared up after coming off Anastrozole and I felt generally better in myself .
I’m ok nearly all the time but a bit of worry does flare up now and then - it’s a roll of the dice really and I might have made the wrong decision .The decision I made was for myself alone because of my particular circumstances and I try to give a balanced answer to people as I don’t know all of their circumstances and don’t want my experience to be the thing that makes them decide to stop. Another thing that influences me is the fact that I’m a Nurse and I’ve seen a lot .
It’s good that you have sympathetic Oncologists to talk to as not everyone does and they sound open to you stopping but obviously it has to be your decision and unfortunately when you have had breast cancer there are lots of decisions to make and they’re all scary. . Maybe you could ask your Oncologist or your cousin to go through Predict with you and any other tool they think might be relevant. Whatever decision you make you need to be able to live with it . One factor in my decision was that I have no children so no grandchildren to look forward to or to miss me if the cancer were to come back . I’m also not the healthiest specimen so I tend to think something else might get me before the cancer - that’s me being realistic not pessimistic though currently I’m feeling very well .
Wishing you happy holidays as well and the best of everything whatever you decide. Xx
Hello again everyone, Just a quick update. I still havent started Anastrazole and the longer I wait the less likely I am to do so. Since last posting an mri has revealed that my fibroids have grown on letrozole and i have also developed endometriosis and an ovarian cyst. I also have vit d toxicity. I conclude that the medication is doing me more harm than good. It has also increased my stress levels. My thinking at the moment is that keeping up with a healthy anti inflammatory diet, addressing my stress levels, and getting plenty of fresh air and exercise will do more to reduce my risk of recurrence than taking a drug that is worsening my pre existing hormone inbalance. Also my fear of recurrence will still be there and need to be addressed and accepted whether I take an AI or not. This is my personal decision in relation to my own personal circumstances and not one I would advocate to others. It has been very helpful to read about everyones thoughts and experience in this regard and I am very grateful for your contributions. With love to all from Tulip x
Hi,
Joanne , I am a RN also. I haven’t worked in the field for many years but I did work in Oncology. It also impacted my choices. I chose to skip an axillary biopsy because of fear of Lymphedema. I am part of a Clinical trial studying women aged 65-70, Stage 1 who skip it.
I reluctantly got radiation, mostly for my husband. I feel like the Radiation is extra insurance that all cells were killed, so it makes me more likely to stop AI. I agree, that it is a personal decision and everyone has different factors to consider. I wonder what percentage of women can’t tolerate AI. It’s very helpful for me to talk to other women who have stopped it.
I took a Nutrition class after my diagnosis. I eat extremely healthy, mostly vegetarian and plant based. My cholesterol actually went down. My Oncologist was shocked. I will continue to exercise and heat healthy. I am not obese and only have 2 alcoholic drinks per month. I think we all can all do the best things for our body. I wish I was a few pounds lighter but oh well. I will keep you all posted about my decision to stay on Exemestane or not. Happy Holidays!
This really resonates with me . I’m on month 8 of Anastrazole. I have an underactive thyroid , so fatigue has always been my middle name but the hormone therapy just makes it worse .
I work part time and I make myself go the gym 3 times a week just to keep myself healthy but a 45 minute session can wipe me out .
I was lucky enough not see a professor of breast oncology a few weeks ago and he has written to my GP to say he is happy for me to try letrozole or Exemestane.
As I understand it , letrozole and Anastrazole are interchangeable but Exemestane works on a different way?
Supposedly kinder to bones , as my 1st DEXA showed I had mild osteopenia.
I’ve always run and lifted weights , so I think it must be thyroid related .
I’d love to hear if anybody has positive stories of a switch to Exemestane . I’ve put it off until new year to think about it .
I wonder if it’s better the devil you know as I have the same brand of A prescribed, which keeps the dreaded vaginal side effects at bay .
I was a 2cm lobular , no lymphs or LVi . Just radiotherapy . Oncotype 18 …
I’m seeing similarities in our cases here - I’m also on a medical trial called the SMALL trial and was initially randomised to have my cancer removed under radiological guidance with just local anaesthetic and like yourself no lymph node surgery at all . This was to be followed by 5 radiotherapy treatments and 5 years of hormone therapy . The initial procedure failed so then I went to lumpectomy under general anaesthetic and in order to stay on the trial also had SNB . I had the radiotherapy and fully expected to be kicked off the trial when I abandoned hormone therapy but because my initial procedure failed and I had lumpectomy / SNB I’m still on it. The idea is not to over treat people but I wonder if they’ve ever considered that the worst part of the treatment might be the hormone therapy especially when there’s so many years of it -I’ve heard the failure rate quoted as being 25% but also up to one third. I’m now glad that my initial procedure failed though it was fairly traumatic at the time as I know it’s out with clear margins and hopefully the radiotherapy will have mopped up anything else as you say. I also like talking to people who have stopped it as of all my real life Breasties I’m the only one who has though many have swapped drugs.
I need to follow your example with the nutrition and healthy eating - I had lost some weight but it’s gone back on unfortunately though i rarely drink alcohol .
Happy New Year to you @jeannej xx
Hi Joanne,
Are you in the UK or US? I am in the US. I would recommend the class I took by Rachel Beller, a dietician. She also recently wrote a new book for people with Breast Cancer called Spice Rack. You can find it on Amazon.
Yes, we do have extremely similar stories. I am giving Exemestane a try. I am already getting some hip pain. If it worsens, I’ll stop. Good to know those statistics. Can we keep in touch? I don’t know how to direct message people on this site or share emails. Thanks. Happy New Year@ JoanneN When did you get diagnosed? My Lumpectomy was July, 2023. Thanks
I’m in the UK but will look out for the book you recommended - I need to do something to take control. I was diagnosed in November 21 first procedure was in December then lumpectomy February 22 . I’m quite happy for you to DM me but although I have sent DMs myself somehow can’t remember how to do it. All the best to you whatever you decide to do xx
I only stuck it for 5 months actually - initially I was told the side effects usually settle in 3 months but they got worse then someone said 6 months and someone else a year . At the time I felt I was being lied to which I now know is probably not the case . Yes - keep in touch and thanks for the link . Xx
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