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 | BCNA Online Network

32 Replies

Afraser
Member
3 years ago
@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.
Cora
Member
3 years ago

LibbyA said:

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?

Im happy to chat. I am in a similar situation. I see my therapist today, but it's a paid consultation where she shows concern for 1 hour. Apart from that there's no one to talk to.
Abbydog
Member
3 years ago
I’m glad she was able to put it in good perspective for you. As you said not your fault. Unfortunately being on these drugs is not a guarantee either. Let us know if you do try these new options. Take care.
LibbyA
Member
3 years ago
Thank you all. I spoke to a new oncologist yesterday. Mine is on maternity leave. She said with the side effects I have had on all four of the hormone blockers, she would refuse to prescribe them for me. She had read about the trials with Desloratidine overseas and said if my GP or immunologist was happy for me to take them, to keep going. She also said no smoking, no alcohol, lots of veg and protein and walking and less stress are all good at stopping recurrence. If I sit around feeling bad because of pain or neuropathy and or walk and fall, they are bigger risks. She told me not to doubt myself. I’ve given them a try. She has seen people get recurrences while on them and others who have never taken them have no recurrence. Sometimes these things just happen. So I feel better now knowing she would refuse to prescribe them for me. It’s no longer my fault, but the fault of the drugs.
Abbydog
Member
3 years ago
I can sympathise with you. I'm going to have a serious talk to my Onc next visit.
It is hard weighing up the benefits of trying to keep the cancer away with AI's.
I'm quite fed up with feeling so much older than I am.
I don't understand why some weeks are better than others.
I don't suffer with depression, but last week I was feeling so bad and wanting some relief from my aching legs. I managed to book a remedial massage, and it seems to have helped.
I'm considering Medical Cannibis, as I can't use non steroidal anti-inflammatory drugs.
I want to travel overseas, and worry how complicated that might be with Cannibis.
My aches and pains are one thing. There is also the damage to my bones. I'm now on Zometa every
6 mths, and that has the risk of bone necrosis in the jaw.
There are other side effects I may yet to be diagnosed.
I don't think you are a failure. We all have our breaking point. I don't know if I will continue to 10 yrs.
So far I'm only at 2 1/2yrs.
Mez_BCNA
Community Manager
3 years ago
Hi @LibbyA, sorry to hear you are going through a challenging time. Just to add to the wonderful, supportive responses and suggestions; It sounds like the professional you are seeking is a ‘Psycho-oncologist’, you can ask your GP for a referral to a clinical psychologist with experience in dealing with cancer-related distress. Alternatively, visit the Find a Psychologist | APS (psychology.org.au) and go to ‘Find a psychologist’; ‘General Health’ and select ‘Cancer support (clients and carers)’. BCNA have an article in The Beacon publication Time to talk: the benefits of psycho-oncology which you may find useful.

Additionally, Cancer Council Queensland's Cancer Counselling Service offers an opportunity to talk with nurse counsellors and psychologists who can help you with cancer-related challenges. To discuss a referral or your support options call Cancer Council 13 11 20.
FLClover
Member
3 years ago
@Afraser 🙌🏻🙌🏻🙌🏻
LibbyA
Member
3 years ago
Thank you all.
Keeping_positiv
Member
3 years ago
@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. :)
Afraser
Member
3 years ago
@FLClover

I did have side effects - like most people on AIs my bone density has taken a battering, happily it was excellent before I began treatment. Vaginal atrophy has been helped by oestrogen cream. It all depends on what’s too much for the individual.I consider my side effects manageable and I am no stoic. Some have only intensified more recently, so your reaction changes when the end is in sight! Roll on May when I will pop my last peach coloured pill!