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

FLClover
Member
3 years ago
@LibbyA my percentage for chemo was also 1% so that was a no brainer for me.
With your side effects and even lower score for the AI, you shouldn’t be having any doubts about stopping them.
FLClover
Member
3 years ago
@Afraser 4% of 10000 is definitely more compelling!! Also the fact you had no side effects, as that does make it a lot easier. I’d have no problem continuing if I only had mild ones.
It’s extremely unpredictable and individual in the cancer world for sure.
10 years is a fantastic outcome for you so far.
LibbyA
Member
3 years ago
I know my percentage if I had chemo was 1%. They were not game to give me chemo due to my allergies to all but one antibiotic, and my mast cell issues. I couldn’t even have the blue dye for the node finding. And cancer was in one node so I really wanted to stop it coming back. On the UK NHS site I worked the difference at about 3% if I took blockers or not. It makes no difference. If Intake them, I’m in a wheelchair, and fe by someone. Without them, I’m walking, cooking, gardening, etc. It’s not the pain. I’m used to pain, it’s the not being able to move properly.
Afraser
Member
3 years ago
@FLClover

I honestly can’t remember if we talked percentages. I know that he was particularly impressed by one long term survey with a statistically large number of participants - which of course makes a difference about percentages. 4% of 100 doesn’t seem much, 4% of 10,000 is more compelling! But a lot depends on your chances of being in the 4%, which is uncertain too! He was however very much of the view that, in my case, staying on Femara was likely to prove beneficial.

As with all treatment, there’s no absolute way of knowing. I have been clear of cancer ten years - I might have been with surgery only! I’m satisfied that, again in my case, the risk justified the treatments I have had. I am also confident that if I had had miserable side effects I would probably have stopped much sooner. As @Keeping_positive1 says, there are all sorts of issues that might affect our individual outcomes. It’s what makes cancer so difficult - and presumably so fascinating for oncologists, and I don’t mean it in a guinea pig way. If I were going into medicine, it’s one of the great mysteries to be resolved.
Keeping_positiv
Member
3 years ago
@FLClover it is also interesting that those that end up needing to have prolia injections because of osteoporosis caused by the AIs can be protected much more from a recurrence of breast cancer. I find some of these findings very interesting. It was accidentally found it help. It makes me wonder what else some people are doing that has accidentally helped them not have a recurrence besides just alone being on the AIs or Tamoxifen.
FLClover
Member
3 years ago
@LibbyA I’ll have to google Desloratidine as I’m not familiar with it at all. If it’s mostly harmless and helps stop recurrence though then it might be worth it.
FLClover
Member
3 years ago
@Afraser what’s the percentage your oncologist gave you?
Mine is also one of the top researchers at a major cancer centre in Sydney, and he insists 4% is a good number. I’m not so convinced. At my last appointment he also hinted he might make me stay on them for 7.5 years, even though for 3 years he’s been saying that I only need to take them for 5
years. I was not impressed and doubt I’ll even continue to 5 years.
I’m interested in what percentage your onco said yours were helping.
Keeping_positiv
Member
3 years ago
@Afraser some even have to stop chemotherapy treatment because of such devastating reactions to their body. I count those that got through chemotherapy very lucky and I was one whose body could get through that part of treatment. It is not an easy road, we just have to get through the best way possible, and keep counting our blessings. Wishing you all the best as always.
Afraser
Member
3 years ago
@Keeping_positive1

Agreed, cancer isn’t one thing, we all
have different cancers and we all respond differently to treatment (which may differ too!). However hard, it comes back to our own choices from the information we have or seek out. And that we can live with, in every sense.
Keeping_positiv
Member
3 years ago
@Afraser if I had made it to the five year mark, I no doubt would also have been told to stay on it for another five years. I have a friend who was diagnosed at the same time as me who didn't require chemo, and completed five years with a combination of AIs and tamoxifen, she is done, and was not suggested she goes any further on with endocrine treatment for her bc. Guidelines change, all we can do is see how our body goes on the recommended treatment. The tumor I required the AI for was not the one I required the chemotherapy for. It can get a bit complicated for some of us. I had the chemo for the other tumor that was HER2 positive. It can be as clear as mud. You have done well, and wishing you continued wellness with all the suggested treatment. Let's hope as research continues we can eradicated cancer for all. My grandmother passed from breast cancer at age 57 the year I was born. She would have had a better chance with all the advancements in treatments we are seeing now. We still have a long way to go, no doubt.

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Feeling a failure

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