Oncologist Response to Fear of Recurrence
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Sister
Member Posts: 4,960 ✭
I went to my checkup with my oncologist on Thursday and I thought it worth sharing. I like my onc and trust him to be doing the best for me but I know that to a large extent, that's on faith and recommendations from other health professionals. He's a fairly quiet and reserved man who I have come to know more over the last 11 months and in all of my dealings with him, he has shown concern and care.
Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis. Now, this may have been told to me early on and I just didn't take it in. I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read.
Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday:
Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence. With Letrozole, it is even better. Obviously, these are statistics and while statistics tell a story, they don't help the individual. He said that he knew for me, there is only "cancer" or "NED". But at this stage, I have to believe in NED until it is shown to be otherwise. Because living, thinking every twinge or pain is a recurrence, is no way to live. And between him and my surgeon, they will be monitoring me closely. He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try. His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living.
Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault. At no time was my onc suggesting that I was being foolish or that my feelings were unfounded. And these are my words because my memory is terrible (something he is aware of and understands!). This was all said in both a very professional and considerate fashion.
I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards. While I know that I won't stop worrying immediately, I do hope it lessens. I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly. I have to try to live with what has happened to me. I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not. But I do know that I don't want to live them under a constant cloud of anxiety.
Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis. Now, this may have been told to me early on and I just didn't take it in. I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read.
Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday:
Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence. With Letrozole, it is even better. Obviously, these are statistics and while statistics tell a story, they don't help the individual. He said that he knew for me, there is only "cancer" or "NED". But at this stage, I have to believe in NED until it is shown to be otherwise. Because living, thinking every twinge or pain is a recurrence, is no way to live. And between him and my surgeon, they will be monitoring me closely. He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try. His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living.
Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault. At no time was my onc suggesting that I was being foolish or that my feelings were unfounded. And these are my words because my memory is terrible (something he is aware of and understands!). This was all said in both a very professional and considerate fashion.
I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards. While I know that I won't stop worrying immediately, I do hope it lessens. I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly. I have to try to live with what has happened to me. I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not. But I do know that I don't want to live them under a constant cloud of anxiety.
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Comments
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@Sister. Thanks for your story.
I also have pleomorphic lobular carcinoma. I am also a librarian. This disease is not going to beat me. There are too many things that need to be done.
My oncologist told me that I am very driven. Well, yes I am.
Life is for living and it certainly isn't a spectator sport.8 -
Librarian's are go!4
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Finishing treatment and stepping off the precipice as I call it lol, is difficult. In my experience and I did what your oncy said, exercise, I did weights, cardio etc. Physically this helped with the aches after treatment. I have this anxiety that sits there and at times rears its ugly head, i manage to keep at bay. Mindfulness has been suggested to me but sometimes you think, oh geez something else I have to do lol!
This challenges our personalities I think, we really get to know ourselves through this experience. Live each day at a time, that's what we all have! Good luck @Sister8 -
Hi @Sister I understand the constant fear of recurrence which dominates our thinking after active treatment ends and how it colours our life.
I was very low and thought life not worth living at one point .
I stumbled into phoning the Cancer Council who arranged Cancer Connect for me which was a turning point for me.Within 3 days I was rung by a lovely Irish lady from Maroochydore who had had lobular cancer like me some 10 plus years beforehand.The life in her voice and her words lifted me out of the mire as she was not only living her life but enjoying it.It started me thinking I too could have a life.
I started to look outwards for contact with other women who had been thru breast cancer.I joined the BCNA blog and a local breast cancer group . The blog was a godsend as I found support from others who understood what I felt and could also offer practical ideas to help .From the local support group I learnt about Encore and an online support program Flinder Uni provided called Finding My Way.The big thing for me was knowing there were others out there like me and I was not alone.Further to see people walking around my community participating in life be it shopping at the supermarket or having a coffee with friends etc meant a great deal to me.
It takes time and also practice to get back into life but it does happen - slowly but surely life once again starts to absorb you and as it does confidence starts to grow with fear no longer every moment of every day.I still worry before each check up and yes if something unusual happens I head for my onc.
I agree strongly about exercise .I have found daily walks a real help in dealing with feeling low .I walk twice daily now for an hour which helps clear my mind.I use it as thinking time and listen to music on my phone as I go.I bought a runners band on eBay too as I tripped one day and find I need two hands free.It has been a godsend dealing with the stress of dealing with my twins studying year 12.
Basically I think it starts with realising we are not alone , that we can get through this and enjoy our lives again as others have and are , but it takes time and practice with the occasional slip up along the way.Its about looking outwards after months of looking inwards .8 -
Well said ladies.
My radonc ( a very open minded and straight down the line lovely Californian lady) said similar words. She was the one as I was discussing the aftermath of treatment and hormone therapy with mostly as she was a bit more empathetic to my concerns than the oncologist and I really connected with her.
I was leaving her office contemplating whether or not to continue with the HT, she gave me a wink and said, "Whatever your choice, have a break from it and see how you feel but don't forget, life is for living man. Whether it's 5 or 30 years don't waste too many days overthinking, we could all get hit by a bus tomorrow." Made me laugh.
The futher you get away from diagnosis and treatment the stronger you tend to feel and the easier it is to put those recurrence thoughts to the place in your head where they should be. They are there, especially leading up to scans etc, but they aren't constant anymore.
The forum is a godsend. You are right @Romla, connecting with people that have been there and done it is invaluable. No body understands unless they've done it especially about after treatment. I just thought I would finish treatment, recover from rads and that would be it, life as per normal would resume. I never even thought that it would be harder than the treatment itself.
xoxox
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Sounds like a wonderful wise oncologist. On my doubting days I hang on wise words my surgeon and oncologist have said to me. It helps to just think on the positive to help our dark thoughts go back in tbe shadows and get on with life.5
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Sorry to harp on about walking/exercise but feel I need to explain a bit more.
I am 64 and never been an exercise fan. I started walking when I began Letrozole as I was worried about joint pain and recurrence.I started a one hour walk in August 2017 the depth of winter here and found it tough as it is very hilly and I was unfit / overweight plus was cold , wet and windy. I persisted and gradually it became easier physically and oddly enough I found I wanted to do it as I did feel better for it but I did go through joint pain too thanks to Letrozole but found mostly I could walk through it and it did make things easier during the day as well as sleeping at night.I hasten to add it was not just physical improvement I noticed but how I felt myself emotionally and tbh the latter was what motivated me the most.
I live in a bit of a community so many observed and commented on my walking but thankfully they have moved on from that and I even noticed a couple of neighbors seem to have taken it up.Must add Letrozole still causes discomfort when I wake up in the morning as my walking doesn’t seem to take away the initial morning stiffness but once I get moving it eases.
I did have an 8 week gap in my walking this year because of a lot of eye surgery but when given the go ahead by my specialist decided to walk twice a day for an hour.I am luckier being retired that my use of time during the day is mine to determine and so was probably easier for me to do. However with teenagers still at home studying year 12 and volunteering shifts it can be a bit of a juggle at times.The family adapted btw around Mum’s walking accepting it as my time and even put music on my phone for me.
I guess I’m saying it’s helped me and I’d encourage anyone to give it a go but do persist as it does get easier.Two tips - wear supportive shoes and check the weather before leaving.I am still overweight , moderately sane despite living with teenagers and above all enjoying my life.And yes I had breast cancer.
@kezmusc you are right it is hard after breast cancer treatment even harder than the treatment itself. A breast cancer diagnosis changes how we view ourselves and our confidence is badly knocked but we can rebuild it and rejoin life .There is help available on that road back some of which I mentioned in an earlier post but we each have to take that first step forward .I read this a while back - the 10 most important two letter words are “ If it is to be - it is up to me”. It’s bloody hard but true.10 -
Oh, to be finished treatment. I had to have another blood test this morning, one week after the last one. It is easy to understand why people say "enough is enough". Just leave my poor arm alone!1
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Wise words. Thank you for sharing
Paula xx0 -
Thank you all for sharing your stories, they have helped me today to not feel alone xx
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@Sister well this all sounded extremely reminiscent of what my Oncologist told me at the end of Treatment in 2015. Though I'm 3 years on, he's told me clearly he's not worried of me getting BC again but a secondary...gee thanks
though he said diet and exercise are great to feel better but won't change an outcome of genetics. He said to me exactly the same thing, there is NED or you have it, there's no test to show before it happens, that's why they don't do constant tests. Remembering there are hundreds upon hundreds of mutations that have not been identified in BC at this point. So I bounce in every 6 months because he wont let me go to a year LOL, doing great and just tell him all good and see you later. I don't worry about it anymore, why? can't change what will be, I tried with a passion after the 1st time and I never dreamed I'd get it again. It's a beast...but ladies just live, live, live and enjoy in whatever capacity you choose, I certainly do 
It's been a really long 7yrs but I focus less on looking back and more moving forward. Hugs xo 3
