Forum Discussion
Feeling a failure
Does anyone know if there is a phone consult available for breast cancer mental health? I had two lumpectomies and axillary clearance due to cancer in one node in early 2019. Then rads. Then hormone blockers.
Started on Anastrozole, then Tamoxifen, then Exemestane, the Letrozole. All had such bad side effects I was taken off them. My liver went mad. I had such bad neuropathy I couldn’t walk or even hold a cup of tea. I had brain MRI to rule out MS. After being off them for a few days most of the neuropathy has gone except one spot on my leg. I have many other chronic conditions so pain is usual. However now I’m feeling better, I’m starting to regret not keeping on them. I know I can’t have them, but it’s making me feel like I should have persisted even if I needed help going to the loo and eating. Off them I can go walking, shopping, visiting, cooking, etc. I certainly am more healthy physically without them and I tell myself being active should help stop recurrence more than just sitting on the lounge or lying in bed. But my mind is telling me I failed. I should have tried harder. Has anyone else gone through this? I know I can get a mental health care plan but I really want to talk to someone who understands breast cancer, or any cancer actually. Any ideas?
Started on Anastrozole, then Tamoxifen, then Exemestane, the Letrozole. All had such bad side effects I was taken off them. My liver went mad. I had such bad neuropathy I couldn’t walk or even hold a cup of tea. I had brain MRI to rule out MS. After being off them for a few days most of the neuropathy has gone except one spot on my leg. I have many other chronic conditions so pain is usual. However now I’m feeling better, I’m starting to regret not keeping on them. I know I can’t have them, but it’s making me feel like I should have persisted even if I needed help going to the loo and eating. Off them I can go walking, shopping, visiting, cooking, etc. I certainly am more healthy physically without them and I tell myself being active should help stop recurrence more than just sitting on the lounge or lying in bed. But my mind is telling me I failed. I should have tried harder. Has anyone else gone through this? I know I can get a mental health care plan but I really want to talk to someone who understands breast cancer, or any cancer actually. Any ideas?
32 Replies
- The shift in the time on an AI certainly seems to have been around 2017/18, as that’s when my oncologist recommended I stay with it for a longer period. As his research background is good (up on latest research, cautious about adopting until he sees real evidence) and the research he cited had a significant number involved, I agreed. I doubt if he’d have been impressed by four per cent. But it’s also true that a significant number of women don’t last for five years on AIs and I am not aware of any research on how many have made 10. You do what you reasonably can, on the best advice available and give yourself and your body as much kindness as possible.
- @LibbyA I can second listening to Dr Charlotte Tottman's podcasts. I would also recommend if going to see a psychologist to see one that specializes in cancer related distress. Unfortunately the one I saw did not have a clue in that area.
Interesting about Desloratidine!
I have heard that those that have ended up with osteoporosis because of being on an aromatase inhibitor and then require a prolia injections, it can have the added benefit of lessening the recurrence of breast cancer. - Thank you @Julez1958
- Hi @LibbyA
I got a referral early on to a psychologist who specialised in cancer related distress .
I was initially told there was a 6 week wait but I asked to go on a waiting list and there was a cancellation so I got in quickly.
I only had 2 sessions which was enough for me at the time .
So I agree with you that it would be good for you to see a psychologist who specialised in cancer related distress.
There is no roadmap for this disease and everyone is different - I remember when I had terrible pain after my mastectomy and was on Endone for 6 weeks I felt a failure , but my breast care nurse told me not to beat myself up as everyone is different , eventually as lot the pain went and I got off the Endone.
The other thing worth doing if you haven’t done it is to listen to the podcasts on this website of Dr Charlotte Tottman “ What you don’t know until you do” - she is a psychologist who specialised in cancer related distress who got breast cancer herself - I found it very illuminating.
Take care 🌺 - @FLClover I looked at the results from Europe and US on Desloratidine and the ‘p-Value’ was 0.001. I had no idea so asked my pharmacist uncle and biochemist friend. The p Value is whether the drug in the test was the reason it worked or if other things came into play, like chance. A p-Value of less than 0.05 is considered to be the drug is what caused the result. Desloratidine was 0.001 so they are pushing for more research. The other antihistamines didn’t come out as well. Desloratidine is sold as Aerius or just Desloratidine generic. My immunologist told me to give it a go. I find it useless as an antihistamine so have to take others as well for Mast Cell activation, but he said just to add it to the others.
- @LibbyA .... When I started on AIs it was late 2017 and the recommendation at that time was 5 years on an AI. My understanding was that whether a person had required chemo or not, the standard for those with hormone positive breast cancer was just 5 years. The guidelines changed later (maybe around 2018) to those that had required chemo, then 10 years was the recommended time to stay on an AI.
All the best with the test results, and no wonder you are feeling a bit doubtful of decisions made to come off the breast cancer hormone treatment. You have a lot going on at present, and I understand the anxiety/scanxiety around test/scan times. Remember what @FLClover says..... we are superheroes. - I was told that the percentage they’re helping is 4, which quite frankly isn’t enough to guarantee that’s why those women stayed alive. In my reasoning, those women probably did other things that helped them stop recurrence, but it looks like it was because of the AI.We’ve been programmed to listen and obey to experts etc, which is why we feel we have failed when we can’t follow through. In actual fact, this should not happen as I don’t believe there’s even enough studies done to prove the efficacy of so many meds. And we should not be made to feel like others (this includes doctors) are the authority over us. No one knows you better than you do. Your body is not failing you, it’s actually trying to tell you that you don’t need those meds, that it’s healthier without them. Symptoms are a sign of distress that what we’re doing is hurting our body, and that’s never a good thing.Don’t be hard on yourself for feeling like this. You’re most definitely not the only one, because as I said we all get programmed. Give yourself time to get used to being off them, and I’m sure you’ll adapt soon enough and stop feeling guilty 💟.
I am almost at the four years mark, but the onco wanted me on them for ten years. Apparently that is the new idea. I also left the stove on several times……… I feel healthier off them. I am using Desloratidine as well as other antihistamines for a mast cell issue and Desloratidine is being researched to stop recurrence, so not sure what else I can do. I’m sure I’ll get over it. I am currently waiting for my four years tests results.Keeping_positive1 said:Please don't beat yourself up! I also had severe side effects and stopped taking them at the 4 year mark. My understanding also is that the most benefit in my case was in the first three years of taking an AI. I nearly burnt my house down because my memory got so bad I forgot I left the griller on in the kitchen and went outside. I also could not toilet myself properly because of the stiffness in my elbows. I would mix up my thyroid med (my thyroid packed in after the chemo, radio and one year on AIs) and AI and take the wrong one, and I also lost balance a couple of times and fell over in the street. I probably would have been dead by now if I continued on with an AI.
Will my cancer return? I don't know! What I do know is that I have a better chance of staying alive not remaining on an AI that was causing me so much pain and not to mention the insomnia I was going through. I ended up seeing a psychologist not knowing whether I was "arthur or martha".
For what it is worth I also started to feel better once off the AIs, and wondered should I try them again. The oncologist said no! After what I went through I know I made the best decision to call enough is enough, with the blessing of my oncology team. Besides, even though those that remain on an AI for 5 to 10 years, can still get a recurrence. Give yourself some grace and love yourself, because you know how much you went through, through no fault of your own. Take care and enjoy your life. xx- Thank you all. I know I shouldn’t feel like a failure, as it’s the doctors who have taken me off them, but I’m just frustrated with my body I think.
- Please don't beat yourself up! I also had severe side effects and stopped taking them at the 4 year mark. My understanding also is that the most benefit in my case was in the first three years of taking an AI. I nearly burnt my house down because my memory got so bad I forgot I left the griller on in the kitchen and went outside. I also could not toilet myself properly because of the stiffness in my elbows. I would mix up my thyroid med (my thyroid packed in after the chemo, radio and one year on AIs) and AI and take the wrong one, and I also lost balance a couple of times and fell over in the street. I probably would have been dead by now if I continued on with an AI.
Will my cancer return? I don't know! What I do know is that I have a better chance of staying alive not remaining on an AI that was causing me so much pain and not to mention the insomnia I was going through. I ended up seeing a psychologist not knowing whether I was "arthur or martha".
For what it is worth I also started to feel better once off the AIs, and wondered should I try them again. The oncologist said no! After what I went through I know I made the best decision to call enough is enough, with the blessing of my oncology team. Besides, even though those that remain on an AI for 5 to 10 years, can still get a recurrence. Give yourself some grace and love yourself, because you know how much you went through, through no fault of your own. Take care and enjoy your life. xx
