Fear of recurrence
2MC
Member Posts: 59 ✭
after being diagnosed early January 2020 with stage 2 TNBC
First went through chemotherapy then lumpectomy and finished in September with Radiation
all my results came back with great results no lymph node activity clear margins and full pathological response to treatment
I was coping quite well with day to day life after much Counselling
until I went for my recent 3 month appointment with specialist
I got a student Dr who was adamant I had a new lump.
as I lay there on the bed waiting for my actual specialist to come and check me over my mind was going crazy with the worst kind of thoughts
My specialist of 40 years experience checked my breast and said there is no lump and told the student Dr to remove the notes from my record and the reassured my husband and I it was only normal breast tissue
I have been a mess now for over a week and have examined my breast now 3 times or more a day finding lumps that now seem bigger and hurt
is my anxiety taking over?
I called the cancer council and they recommended to stop self examination’s for a bit and believe my specialist
my Mammogram 1st since diagnosis isn’t until February and the specialist doesn’t see me again until mid February
sorry for long rant (Anxiety does this) x
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I know students have to learn but......it seems to take a long time to realise the practice object is sentient, not deaf and may grant the student greater knowledge than he/she has. You can take your specialist’s advice and stop worrying but, as he/she will know, test and scan anxiety is a real thing, and you have already had counselling, so easier said than done! Or try and have a mammogram as soon as possible, which should be possible if your specialist recommends it (for your peace of mind not because his/her assessment is wrong). After all, your specialist presumably allowed the student access! Best wishes.
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@Afraser
thank you for your fast response I’ve really needed some advice from a survivor
Im going to see my GP as I can’t straight contact specialist
cancer council told me I couldn’t rush ahead and have mammogram as things after radiation and surgery need to settle down first
and that’s why specialist has set a particular date
she also said I could be feeling a lot of normal changes to breast tissue after all it’s been through
I feel I’ve lost my faith
all my joints have ached since chemotherapy after long walks especially my digest system has only just got back on track
I fear if I had to have chemo so soon after the 1st time I wouldn’t survive
sorry if I’m putting to much out there/ asking to much of you xx2 -
Hi @2MC, Firstly,it’s absolutely normal to feel anxious about recurrence after what we’ve been through.It took me about 2yrs to relax abit about every ache and get some confidence back in my health.You see your body let you down and you don’t quite trust it yet.Radiation can leave your breast sore and hard for ages. Your type of bc responds very well to chemo and it sounds like it did for you.
These are facts you need to remind yourself of and then try and do things that help you relax- a walk,a spa, being creative?You’ll have your’go to’
I DID have a local recurrence in the same breast 7 yrs later so I had to have a mastectomy and chemo.That was 10yrs ago and I’m totally fine because it was caught early again. And I’m not telling you this to worry you but rather to let you know that we are kept under good surveillance by our doctors and they will act quickly if need be. If you are happy and confident with your specialist,then be guided by him/her. BCNA have a fact sheet about Fear of Recurrence that you could download or ring them to post it out to you.Big hug xx4 -
Fair enough - about the mammogram I mean. Sounds perfectly sensible - I had a mastectomy so missed that particular kind of anxiety. Certainly my underarm (axillary clearance) took a long time to feel like it was even mine let alone normal!
Your body and mind need time to absorb all this stuff. Everything happens very fast after diagnosis but it doesn’t all land. Anxiety, aches and pains, anxiety about the aches and pains, funny sensations, anxiety about the funny sensations are all par for the course!
I saw a counsellor for a few weeks after my third potentially lifelong side effect - I wasn’t depressed or particularly anxious, just a bit confused about how I was supposed to be and to behave. Among a huge amount of useful skills she imparted (still using them eight years later) was to spend at least 20 minutes each day in nature doing nothing. Just breathing, feeling the sun or wind on your face, looking but as far as possible not thinking. Can possibly be done while walking (also a really good thing to do). The purpose is to engage with simply being alive. Our anxiety is all about dying. Focusing on living helps regain some balance.
The panic is understandable - I discovered a lump under my other arm while still on chemo. Long story short, utterly benign unrelated tumour, possibly been there for years. We think EVERYTHING is cancer, for a while. We need to take every opportunity to practice the other stuff - laughing, enjoying, relaxing - before we lose the knack! Be kind to yourself, this is all very new and raw, and at a difficult time. It will improve. Best wishes.6 -
Hi @2MC,
I really don't have much more to add than whats already been said. However, student doctors are not really supposed to see patients without supervision. Nor should they be giving you any form of diagnoses without getting a reg or consultant to check first. Radiated breasts tend to always feel firm with lumpy bits (mine does anyhoo). I often wonder how the heck they could feel any changes when I can't and belive me at the beginning I poked and proded that thing all over the place for months
I would be having a word with your hospital. Student doctors are just that students not doctors. Don't forget you are well within your rights to have a chaperone for breast examination. This is generally an experienced nurse who probably would have given that student a good clip around the ears for telling you anything like that.
Hope you feel better soon lovely. Trust your specialist sweets.
xoxoxox
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@TonyaM
@Afraser
thank you ladies
I’ll go to my GP and see if he can communicate to my specialist how his student created so much worry and anxiety and hopefully I can get a proper visit and check over by him personally
if he checked me this previous visit and said no problems I would have happily waited until my next appointment and mammogram (although anxiously) I still would have been better then now.Before all this I was doing everything the psychologist recommended
walking through a beautiful reserve everyday and saying my prayers when I got to the top of a reasonable hill with a magical view
started painting water colour’s and getting back into baking
amazing how far this Scenario sent me back and stole all the pleasure and energy out of me.
thanks for all you lovely support
bless you both x1 -
Hi @2MC
Unfortunately, I think we’re all going to have these moments occasionally, whether we see a therapist or not 😕. Such is life. We are always a work in progress. There’s always room to grow, and there will be setbacks. But you did it before, and you can do it again. The strength is in you. Remember, we are thrivers, not survivors. And hopefully each time will get easier and easier to bounce back to your ‘usual’ happy self 💗4 -
@kezmusc
thank you for sharing the over checking thing it makes me feel a little less crazy 😅
yes I agree a student Dr shouldn’t diagnose me and express it so loud and clear until the specialist arrived and checked me over
sadly once anxiety is triggered on a already anxious person it snowballs into a very terrible situation
my poor husband 😊 but bless him for his constant reassurance and support
and thanks for your’s x2 -
You’re very welcome @2MC ☺️. I’m also an overly anxious person and have a history of panic attacks, so I know what it’s like. I also had heightened anxiety and hardly slept for a whole month right before I found my lump (one of 4). Now I’m seeing a psychologist regularly to deal with this whole thing. It’s so tough, and can seem incredibly hard, but surprisingly I’m at a very good place right now. I have my moments, but I’ve also never felt better. I was at the polar opposite only 6 months ago, never thought it would happen this quick but thankfully it did. But as I said, it’s a work in progress, and always will be. My point is, we should never lose hope, learn to trust ourselves and others, and persevere in continuing our growth, despite the setbacks. I hope your anxiety over this disappears really soon 🤞
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@2MC I am sorry you have been put through such anxiety by a student Dr. I agree with all the supportive comments made by the wise ladies. I had mild anxiety before my breast cancer diagnoses. Now I am very much aware how quickly my anxiety escalates. I want to say thank you to @Afraser @FLClover @kezmusc @TonyaM for their wise words. Many times their wise words have helped me cope along this roller coaster. xxxx 2
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@Locksley
thank you! living with health and death anxiety since I was a young teen was difficult enough
my councillor was amazing and said I was doing so well considering facing my cancer journey.
somedays it isn’t easy to stop the mind from getting busy.
yes I agree all those lovely ladies that are so quick to help and offer support are amazing and so strong to help other when they are going through their own journey
@Afraser has been a constant and and I have so much respect for her and her advice x
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@FLClover
oh I’m so happy you are in a great space now
that’s fantastic!
I was and will do everything to get back there. I really want to enjoy Christmas this year
The beginning of 2020 I lost so much
cancer diagnosis in January my Dad passed from cancer in February and someone baited and killed my much loved dog in September
things can only get better..right 🙏🏻0
