Fear of recurrence

Posted by newgranny @newgranny, Fri, Aug 9 5:33am

After 5 years on Anastrozole (Arimidex) and dealing with my joint pains (lots of yoga helped me), the Oncologist recommends discontinuing hormone therapy due to osteoporosis. Any advice on how to cope with anxiety related to this? I am feeling so alone since my family and friends think I’m just fine!

@newgranny @newgranny Has your oncologist offered you Tamoxifen? It is not an aromatase inhibitor. Mine suggested if I cannot tolerate the AIs that I would need to be on that as I have a neuroendocrine component of cancer and have to be on something. Unfortunately, it does come with side effects. For your osteoporosis, have you had Zometa infusions? I came to cancer already with osteoporosis…had my first Zometa infusion a few weeks ago and am told I need to do these every 6 months for 3 years. Don't give up and don't let anxiety take over…get outside in the fresh air and sunshine. When I start to get upset, I think of everyone that needs me and keep pushing forward.

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Fear of recurrences is a very real thing, I am part of a couple survivor groups and I would say almost all who admit it to themselves, fear it. Especially if the treatments were very hard. Some people run to the doc with each ache and pain, some people avoid the docs like the plague. Some try to outrun cancer by being the invinceable energizer bunny, and some just suffer in silence. Some like myself have tried all or most of these methods at one time or another. I now take an anti depressant, low dose Zoloft, and try to just enjoy every day I have. My husband has a mean bone cancer and now I just try to be grateful for each day. I will add that I still worry about each little thing but, I am more likely to go do something fun than run to the doc, I do however bring it up at my regular appt. I don’t really have advice but I hope somehow my story can help. It is always a big step to discontinue a treatment and or monitoring, because you are leaving behind a kind of safety blanket.

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@trixie1313

@newgranny @newgranny Has your oncologist offered you Tamoxifen? It is not an aromatase inhibitor. Mine suggested if I cannot tolerate the AIs that I would need to be on that as I have a neuroendocrine component of cancer and have to be on something. Unfortunately, it does come with side effects. For your osteoporosis, have you had Zometa infusions? I came to cancer already with osteoporosis…had my first Zometa infusion a few weeks ago and am told I need to do these every 6 months for 3 years. Don't give up and don't let anxiety take over…get outside in the fresh air and sunshine. When I start to get upset, I think of everyone that needs me and keep pushing forward.

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Thanks so much for your kind words! Taking Prolia injections for osteoporosis which I also had before BC. Will see oncologist in 2 weeks. I guess it’s one of those statistical benefit risk issues for me. I guess research points to 10 yrs on Anastrozole but they fear 5 more yrs will affect my bones adversely so bone doc suggested stopping Anastrozole after 5 yrs.

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@auntieoakley

Fear of recurrences is a very real thing, I am part of a couple survivor groups and I would say almost all who admit it to themselves, fear it. Especially if the treatments were very hard. Some people run to the doc with each ache and pain, some people avoid the docs like the plague. Some try to outrun cancer by being the invinceable energizer bunny, and some just suffer in silence. Some like myself have tried all or most of these methods at one time or another. I now take an anti depressant, low dose Zoloft, and try to just enjoy every day I have. My husband has a mean bone cancer and now I just try to be grateful for each day. I will add that I still worry about each little thing but, I am more likely to go do something fun than run to the doc, I do however bring it up at my regular appt. I don’t really have advice but I hope somehow my story can help. It is always a big step to discontinue a treatment and or monitoring, because you are leaving behind a kind of safety blanket.

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You have said it exactly right! I’m fearful of giving up safety blanket!
Trying to eliminate all stress from my life…
It’s a difficult journey as you well know. Thanks for reaching out on this. Helps to share.

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I also fear recurrence. I feel like if my immune system didn’t destroy the cancer cells the first time, how can I trust that immune system to catch it and fight it off when rears it’s ugly head again. It’s always in the back of my mind. Most people who have not experienced a life treating illness do not understand, even my family sometimes think I’m “silly” to be fearful. Perhaps they are just trying to help me feel better by ‘dismissing’ my feelings of the chances of recurrence. I’m so grateful for this web site to connect to other women who experience many of those same feelings.

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lisman1408
You most definitely are not alone, and my family and friends dismissed this as well. It was one of the driving factors for me to keep a couple of informal survival groups going. We have team meetings (we all go to lunch or dinner). Then we can talk about all of it without judgements or dismissals from the uninitiated. We can make fun, laugh, cry whatever is appropriate for us in that time. I am considering trying to get a caregiver/spouse team started as well. I am In that category now as well and it comes with a different set of fears, or worries, jokes etc. it is an uplifting thing to realize you are all experiencing many of the same things.

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I live with that gnawing feeling too. Every time something new happens in my body I think ooh has it spread to somewhere else now! I talk myself back to being positive and normal but sooner or later it rears it’s ugly head again

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@geronimo1

I live with that gnawing feeling too. Every time something new happens in my body I think ooh has it spread to somewhere else now! I talk myself back to being positive and normal but sooner or later it rears it’s ugly head again

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We are all right there with you!

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Indeed we are!

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@lisman1408

I also fear recurrence. I feel like if my immune system didn’t destroy the cancer cells the first time, how can I trust that immune system to catch it and fight it off when rears it’s ugly head again. It’s always in the back of my mind. Most people who have not experienced a life treating illness do not understand, even my family sometimes think I’m “silly” to be fearful. Perhaps they are just trying to help me feel better by ‘dismissing’ my feelings of the chances of recurrence. I’m so grateful for this web site to connect to other women who experience many of those same feelings.

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Thanks for sharing.

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@auntieoakley

We are all right there with you!

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Yes!

Liked by auntieoakley

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