Anxiety over secondary breast cancer
Hello everyone
I am hoping for some sort of advice/reassurance as since my post-op consultation with the surgeon I have been in a complete state of anxiety and going through some real funky moods. Have been on anti anxiety meds for 10+ years so I may need to increase my dosage but before the cancer diagnosis it was very well controlled...
At my first post-op consultation at the end of May (bilateral mastectomy and reconstruction with sentinel node removal), I was told by the surgeon that I did not respond to chemotherapy and that I may need further alternative chemotherapy treatment. I was also given the news that the sentinel node was positive even though in hospital I was told it was negative and because of that I would need an axillary node clearance in July.
Later seeing the oncologist he stated that no further chemo would be necessary but that was before my second operation to remove the additional nodes.
I got the results last Thursday from the axillary node clearance and had one positive node out of the six removed. So in total two out of seven nodes removed were now shown to be positive.
During this consultation the surgeon again stated more chemo may be required but speak to the oncologist for further info. He also reiterated his view about the original chemotherapy not working.....
I began freaking out again - internally because I tend to bottle things up and almost pretend to myself that I am not worried or concerned.
Anyway, my thoughts at this moment in time are screw what the surgeon is saying, the oncologist is the one with the real knowledge/information on chemotherapy and hormonal therapy. I see him on Monday so I will get some further clarification then...
In the meantime, what I really wanted to find out was what have others done to keep healthy during and since completing active treatment?? Have you managed to exercise, are you often doubting if you are doing the right thing to prevent secondaries. I am eating the right things. Am I being too hard on myself ??
I am worrying so much about secondaries and can't seem to get these thoughts out of my mind - is this common at this stage of the game?? I am seven months into active treatment - had chemotherapy, bilateral mastectomy and reconstruction and a recent axillary node clearance.. There is a now a slight lull now between my surgery and radiotherapy so I have had more time to be worrying about what the future holds...
I work full time and find it really hard to fit in making healthy meals, keeping active and maintaining good energy levels. My anxiety seems to have escalated further because I am worrying about eating the wrong thing, not doing any exercise (because of feeling flat/down and no energy since my op on 15th July, not to mention the tactless remarks of the surgeon. I also have very painful cording after first and second op - worse since the lymph node removal).
I have cut down on practically all of the naughty foods I used to consume before my diagnosis and have actually lost around 8 kilos since diagnosis and my BMI is within a healthy range. I now eat reasonably well trying to incorporate green veggies with most meals, very limited alcohol but I haven't managed much exercise in the past few weeks. Certainly I am not active on a regular daily basis, working in an office 40 hours per week.
I am doing some aromatherapy when I can to try and calm me down which helps a bit with my anxiety.
Sorry about my stupid ranting - I am probably not making any sense. It's all in my hands and I need to start exercising to increase my energy I guess, its when to fit it in though.....
Many thanks for listening and hope you may have some suggestions or ideas to put this all into some perspective...
Thanks
Anne
Comments
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Hi Anne,
reading you post, I was sitting here thinking is it any wonder you are anxious! The fact that chemo didn't seem to work and it looks like you might have to have more chemo would be enough to freak most people out. Let's face it, who would want to do that again! Not me. The worry of recurrence is strong for many of us. If you can manage a walk, that's still exercise. You've had some pretty major surgery and chemo and you are working. Give yourself a break love! I am 12 months post treatment and am only just getting to the stage that I am managing the fatigue. Like you, I kind of pretended like I was fine and kept pushing through. It was only when it was all over I fell in heap and was able to acknowledge how sick I had been and what impact treatment had had on me. Counselling helps greatly. As far as eating properly etc is concerned, yes we need to take responsibility for our health but I have met some health nuts who don't drink, don't smoke, exercise and eat well and they still have gotten cancer. I don't drink alcohol or smoke, yes I am over weight but I eat well. I tell myself that it is a disease and it doesn't discriminate. Everything in moderation. Exercise doesn't have to be a full gym session. One big change I have made (it was forced on me as I was sacked whilst having treatment) I have stopped working full time. I now work 3 days a week. It has allowed me time to recuperate, time to spend time doing things I enjoy, time to rest when I need rest. Things are harder financially but we manage. good luck for your results on Thursday. Take care. Karen xox
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Hi Anne - what a journey! Your anxiety is completely understandable. I've been going through a similar emotional roller coaster for different treatment reasons. I also work FT. I have tried a few things to help me manage. I have always done quite a bit of walking but it wasn't helping. I tried meditation and ended up with dual conversations in my head - my anxious ruminations fighting with the meditation cd. It didn't work. I was tossing and turning all night and couldn't even read a book. This went on for about 6 months. What helped me were thtee things 1-a series of counselling sessions with a specialist counsellor for breast cancer ( referred by my breast nurse). I got a mental health care plan from my gp so i could claim most expenses. 2- i did join a female only gym. I needed a lot of physical exercise to get my brain to stop. I decided to make the trip to the gym on the way home from work a high priority 2-3 times a week. 3- i joined the research program ICanAdapt.com and this has given me some helpful techniques.
I hope you find something to help you. It's exhausting to be in that state!
K
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I agree with Karen. I would add, you need to learn patience. That is my biggest hurdle in managing and coping - patience. With patience follows peace. Don't get in a tiz about foods but good wholesome vegetables in your diet must be a plus as my step grandfather lived to 94 and he always had himself a fruit and veg garden.
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Hi Karen
Thank you so much for your helpful response.
I am so sorry to hear about what happened at work - that must have been awful to go through on top of having treatment. Seems like it was a blessing in disguise though.. So glad that you are able to find the time now to rest and do some thing you enjoy
Take care too
Anne
xo
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Thanks K
Yes I have been thinking about counselling. Walking seems to help a bit for me so I will aim to fit in as much as I can during the week when the lighter evenings come in..
I haven't tried meditation but like you I can tell it would probably end up the same way it did with you (due to my obsessive type of personality).
Thanks again for your useful suggestions
Anne
x
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You are going through an extremely difficult time physically and mentally and yet you work full time and eat well. You are a hero. Please do not be so self critical, what you are doing is wonderful. I am retired, thank goodness, I could not have worked even part time through chemo and radiation. I am still very tired and my brain doesn't work as well as it used to.
I agree with other people who commented, cancer does not respect anything. Even babies are born with cancer. It's not your fault you got cancer, it was your bad luck. Eating healthy food is a great idea, although sometimes chocolate is a life saver. Exercise is a great idea, if you have the energy for it. Maybe you could do a short walk at lunchtime, perhaps to buy a sandwich. Walking is great exercise for the body and the mind. you don't need to hit the gym necessarily. My oncologist recommended walking around shopping centers, they are flat, warm, dry, free and when you get tired you can sit down and rest. Eventually I am supposed to walk outside but to begin with, keep it gentle and safe.
I too suffered from much anxiety. I tried listening to guided meditations I found on the Internet. The ABC website has a stillness mediation I liked. I too have a monkey mind constantly thinking different things. I have read that this is fine, just observe the many thoughts you have and don't follow them. The point is not too have a blank mind, just not to mind the thoughts. I am not much good at mediation but it is definitely worth a try. The cancer society can send you a free cd with guided mindfulness medications in it.
I found a piece of music that I loved and listened to it a lot, it helped me feel less anxious. Mine was Pictures at an Exhibition but it would be different for different people.
A friend who had cancer finds listening to pod casts helpful for relaxing. There are many free ones in the Internet. Again the ABC website is a good place to start.
I agree, your oncologist has the most knowledge of cancer, follow his/her advice.
I suspect anxiety is very common with cancer sufferers. If medication works for you, talk to your oncologist about whether you should increase it. You won't be the first patient he/she has treated for anxiety. I discussed mine with my oncologist every visit. He was extremely understanding and prescribed Ativan. I could take it for a week after each chemo. I found it very helpful but did not enjoy coming off it. I had an unpleasant day and night, then the withdrawal was pretty much over.
I hope hearing that others experience anxiety helps you realise you are not weak or lazy. You are human. Anxiety sadly is very common in human beings. It's horrible but you will endure it in the the end. I learnt with cancer treatment, you don't have to like it, you just have to turn up and do it.
Wishing you the very best. Karen
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Yes Anne it was very stressful getting the sack. I really should have taken them to court (the cancer council provided me with pro bono legal representation) but by that stage I had had 14 months treatment, I still had two more months of treatment to go and I was just so tired and sick, I didn't have the energy to fight them as well. I regret to this day not taking it further as I feel they have gotten away with it but the fact is I just had to take care of my health. It has been a blessing in disguise but it is still very much a thorn in my side. Nevermind.
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Anne you are amazing and you should value you are doing everything that's right for you.The Cording must be terrible.I also suffer from anxiety,bitch,am not working and how you do it is amazing.Socially that would be good as I am very alone with minimal family and friends support.I had wide resection ,sentinel node and started chemo on Wed,and seemed to cope ok but unfortunately let myself get constipated till this arvo.So although I was keeping up fluids I would normally so it all built up.There's nothing like being alone vomiting and a temp when the house is quiet.Feeling better now never will do that again.The women here have great suggestions and I find helpful and supportive.Aromatherapy seems to be the go any way you can relax and pamper yourself is good.Take care hugs Debza
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Thanks so much Karen
Such wonderful words of wisdom
And so lovely to be hailed as a hero!! Made me smile I have always been pretty self critical but as I have got older I have lightened up significantly, thank goodness but unfortunately I have never quite managed to beat the anxiety. Cancer has obviously not helped with that but I do hope to get in the swing of exercise/healthy living and I hope that my own body may begin to right itself so that I no longer have to rely on medication. That is my aim anyway when the time is right for me.....
On the whole, I am pleased that I have approached the whole cancer thing with a positive outlook, embracing whatever treatment that has been deemed necessary. It was really only the odd couple of times I slumped into a decline after seeing the surgeon. Now that surgery/follow up is over and done with, and with the help of everyone on this forum (such wonderful people), the help of my family and the correct information I am bouncing back - hooray!!
After seeing the Oncologist yesterday. I am reassured again that I do not need further chemo and that the chemo did a reasonable job of reducing the two masses found in the breast after my mastectomy...More importantly the response to the chemo was typical of the hormone positive invasive lobular cancer I have.
Oh and I definitely agree that chocolate can sometimes be a life saver, or a coffee/muffin at the dome cafe maybe? All in moderation .....I know that and should tell myself that it is sometimes OK to have that little treat....
Thanks so much for taking the time to respond and provide some helpful advice.
Anne
xxoo
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Thanks Debza
So amazingly awesome to get everyone's feedback and your's equally as awesome. You are amazing too to take the time to comment whilst going through that wretched chemo....I feel for you - I remember it well. My first one two days before Christmas. It sucks so much to hear you are alone with not much support. I relate to that too as all my family are in the UK but I am lucky to have a supportive partner and he has been a tremendous support over the past few months since diagnosis in November last year....
If you ever need a shoulder to vent on - feel free to PM me at any time
Hugs to you too
Anne
xo
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