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?

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 💟.

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 🌺

@Afraser I believe if I had not had the need to go onto levothyroxine as I was diagnosed with hypothyroidism one year into taking the AI, then I would have been in a much better place as my side effects were manageable. When I had to have two different endocrine therapies, that is when I fell of my perch, so to speak. @LibbyA you already have an immune disease so that has made it so much harder on your body. Hats off to you for being able to get to the four year mark coping with that wretched hormone treatment also, as well as your preexisting conditions. Take care lovely. :)

@Cora I’d be tempted to look for another therapist or counsellor. Any professional is going to be paid, that’s their right but the aim is to assist you in either improving your state of being or learning coping mechanisms, often both. To be fair, anyone can (and should) show concern. A good counsellor who helps you to a better way of living is a very good thing. Just listening can provide some relief but maybe not long term improvement. Best wishes.

We are made to feel like failures if we don’t continue on with treatment, but realistically we’re not. Not even close. I understand your feelings because I’m also not happy on my meds (Anastrozole and Zoladex) and after almost 3 years on them I want to stop them. I think that it will be a good decision as I’ll be much happier and stronger generally due to the side effects which will go. I will need to, and am currently working on that more than ever, make radical changes in my lifestyle to eliminate the root cause of getting the cancer in the first place, and then I will not be worried about it returning. In these situations, I believe eliminating the root cause is more important than a band aid fix such as these meds. This is my thinking, others are free to disagree. But we’re definitely not failures. Considering what we go through, we’re more like superheroes.

Feeling a failure | Online Network

Afraser
Member
3 years ago
@LibbyA
Many people experience two reactions - fear of treatment because of the side effects or fear of not having treatment because of the possibility of recurrence. It’s quite possible to have both!

I have limited effects of peripheral neuropathy ten years after diagnosis. No pain but my feet feel pretty weird, and more so if I have been on my feet a lot. It’s a nuisance, but that’s it. Chronic pain is an entirely different matter.

You didn’t fail by getting cancer in the first place. Or by seeing through your surgery and radiation. And you’re not failing now. But you may have to make a definite decision about not continuing hormonal treatment given the side effects and trusting that the completed treatment will do the job. There are no absolute guarantees either way.

A good counsellor may well help you to settle your feelings about that decision and to be happy with it. Which is the main thing. We all do what we can to avoid cancer in the future but if the cost is misery in the present, some priority setting is in order. Best wishes and take care of yourself.
FLClover
Member
3 years ago
We are made to feel like failures if we don’t continue on with treatment, but realistically we’re not. Not even close.
I understand your feelings because I’m also not happy on my meds (Anastrozole and Zoladex) and after almost 3 years on them I want to stop them. I think that it will be a good decision as I’ll be much happier and stronger generally due to the side effects which will go. I will need to, and am currently working on that more than ever, make radical changes in my lifestyle to eliminate the root cause of getting the cancer in the first place, and then I will not be worried about it returning. In these situations, I believe eliminating the root cause is more important than a band aid fix such as these meds. This is my thinking, others are free to disagree. But we’re definitely not failures. Considering what we go through, we’re more like superheroes.
Keeping_positiv
Member
3 years ago
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
LibbyA
Member
3 years ago
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.
LibbyA
Member
3 years ago

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

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.
FLClover
Member
3 years ago
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 💟.
Keeping_positiv
Member
3 years ago
@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.
LibbyA
Member
3 years ago
@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.
Julez1958
Member
3 years ago
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 🌺
LibbyA
Member
3 years ago
Thank you @Julez1958