I think it’s come back…
Teabaglady
Member Posts: 6 ✭
Hi, I had a lumpectomy nearly two years ago now, it was ER+ caught early with no spread to lymph nodes. Supposedly straight forward. It took three surgeries and four weeks of radiation therapy. Then started on tamoxifen which drove me crazy so took the gamble and stopped taking it. Anyway I’ve been getting some soreness/discomfort/somethings not quite right here kind of vibes and eventually booked in for a mammogram which will be on Monday ( a couple of months before I was due to have my regular check). It’s getting harder to stay calm about it and I’m getting scared that maybe I’ve left it too long, and I’m currently awake worrying about it, remembered this site so thought I’d have a little rant about it.
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Hi @Teabaglady, I hear you. I have major scan anxiety. The thing is you just won't know until that scan. I had a lumpectomy in 2020, chemo, radium and tamoxifen which drove md crazy too. I switched to Letrozole and I am still on it.
In January this year I had a fracture at T9 of my spine on s funny little node there. My oncologist has been doing mri's every 3 months since then. Last week I had a mri in preparation for my appointment with her on Monday.
My oncologist phoned me the next day and said something wasn't right, she wasn't sure but said it would be safer to have a PET scan and contrast CT. I did that yesterday and will get the results on Monday. When the oncologist phoned me I freaked our, major anxiety attack.
It is very hard not to worry I gave myself 1 day of freaking out (Tuesday) but since then I think I have done ok. I just keep busy. Of course it sits in the background of my mind but I can't do anything or change anything until I get those results on Monday. Keep busy, do what you like and try to stay in the present moment. Best wishes for your results.2 -
So sorry you've been having this anxiety @Teabaglady - but try not to get ahead of yourself & let this overtake you, difficult tho it is, I know. xx I hope you can get your results asap after your MG on Monday & lay it to rest. If you have unusual aches & pains - ask your GP/Onc to refer you for a bone scan/bone density as well as the MG - maybe an ultrasound as well.
As @Cath62 says - scanxiety is VERY real & I am wishing you all the best for your scan results too, Cath xx
Staying 'in the moment' (the Buddhist method of Mindfulness) has been suggested to me too, as a way of helping to control extreme emotions .....
I had my yearly episode of scanxiety a couple of weeks ago when I had a full bone scan, to make sure mine hadn't recurred as I'd been having back pain on & off for 4 months+ & then 2 weeks of debilitating back pain after a holiday - so I was very happy to get the all clear. I had a bone density test this week & am awaiting the results there too but not so concerned.
Absolutely - keeping busy, by doing the things you love doing to try & keep your mind AND body busy ....
take care, and all the best to both of you xx
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Thankyou ladies, it’s just good to be able to have a blurt about it, nighttime is the worst for worry. I’ve been pretending that it doesn’t exist, but I can’t ignore it anymore. All the best for your journeys too.2
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@Teabaglady
Hopefully it turns out to be nothing to worry about however you may have to reconsider your Tamoxifen or something else more suited to you - you are in a world of worry at present - hopefully you have something on the go to keep your mind occupied
Best wishes and fingers crossed for a good outcome
Take care1 -
Just to say, I am nearing 9 years of AIs. I started on Tamoxifen and Zoladex injections, then went to Letrozole (also known as Femara), Anastrozole and back on Tamoxifen.............it takes time for the body to adjust and my Oncologist keeps a good check on me and if the side effects are too much he changes it up! Like most I picked up other specialists along the way and learnt terms I didn't know how to spell let alone what they mean...........it's certainly interesting on the Breast Cancer bandwagon!
Glad you came back here for some emotional support as we all get it!
Hope that help as I can see from your opening post that you struggled
Take care1 -
thanks iserbrown, I had been thinking I should go back on it. I have a script for Anastrozole that I didnt fill, might be time to do that now. Very thankful for everyone on here, I hope I can be an encouragement to others and give back a bit. the journey never ends!!
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Anything that can stop/ reduce anxiety is worth serious consideration. It’s pretty normal but it’s not fun. Once you get the current problem sorted out, it may be possible to consider what you can do to reduce anxiety. I found anxiety about scans reduced significantly after five years, but that’s still a long time. As @iserbrown suggests, going off a medication can increase anxiety even if it stops unpleasant side effects. Has your oncologist discussed any alternatives? I managed to do a full ten years on Letrozole - some side effects but none of the joint pain type. Best wishes for reassuring results and the future.1
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@Teabaglady - I started on Letrozole & had bad side effects, then Exemestane that went the same way after 6 months - so changed to Anastrozole & have done MUCH better on it for the last 4 1/2 years! I've just passed the 5 year mark on AIs and I have the choice to stop altogether, or I can have regular breaks & continue for the next 2 years and then it will stop. So right now, I'm having a break from Anastrozole for 6 weeks ..... and will see how I go!
The AIs can actually make you more 'emotional' as well .... so the break should do me good. Take care xx
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Thankyou everybody, the mammogram came back clear, apparently pain is just a thing that can happen? I’m also guessing crazy anxiety brain makes it all worse too. Will have some follow up appointments to address that. All the best to you allxxx4
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Good news @Teabaglady - now you can relax and go forward with your life. We all get those annoying seemingly sinister pains and we go into anxiety mode. The mind is a powerful thing ....1
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@Teabaglady, I reckon the little bell that rings in our heads sometimes is the last vestiges of our primitive selves. It's giving us a warning that something is wrong even though there is not yet any evidence to support those feelings.
You've listened to your bell, you've followed up on it. Well done. Your fears are valid and now you have had them addressed. Never feel bad about asking questions.
The pain is a 'thing'. Very difficult to keep track of it and scarring changes over the years which means you can never be sure what is a natural progression and what is new.
Keep listening to your bell. Mxx1 -
Terrific news, @Teabaglady - that is a huge weight off your mind & well done for following up on it - that is the correct thing to do. xx
I hope you can go out & have a celebratory dinner with family & buddies xx
take care & just get out there, doing the things you love, even MORE now xx0 -
Dear @Teabaglady
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Great that it has worked out clear @teabaglady.
The advice I give people is don't invent demons to wrestle with. Focus on the ones you know are real.
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