Anniversary and ILC recurrence: help

Anonymous

Elizabeth in Bethesda, that's very sweet of you to write. Thank you. I would probably avoid the fly away balloon (wildlife--ducks, elk, deer, etc.) eat deflated balloons which can turn into internal blockages, thus allowing animals to slowly starve to death or worse, so I hope everyone remembers that when you have an idea to release a helium balloon. But I do believe in rituals, and maybe I need one before each 5 month check up.

Your attitude sounds great even with your recurrence. Thank you for sharing your positive energy.

Claire

hlya

Hi, Claire,

Are you feeling better now? Actually I worry the same as I am a worrier.

Anonymous

Hi hyla,

I still have PTSD experiences before every check up, but at least I know what they are, and that knowledge by itself helps a little.

Hugs,

Claire

lisa137

I think we all worry to some degree or another. I have General Anxiety Disorder and suffer from depression, so you'd think I'd be a complete basket case with the worry, but I'm not.

I decided soon after my diagnosis that getting breast cancer was a total crapshoot, and I think that for me, the idea of recurrence has landed in that same zone. I take my femara religiously. I take a baby aspirin five days a week. I do what my oncologist tells me to do. And I feel like, once again, it's a crapshoot. It might come back, and it might kill me. But it also might not. So, miracle of miracles, I don't really stress about it. Maybe as I get farther away from diagnosis (it will have been 4 years this fall,) I will start to stress more--because of ILC, you know, the reasons have already been stated in this thread, but as crazy as this sound, if I got the news that my cancer is back I will be just as surprised as I was when I was diagnosed in the first place. I'm just not expecting it to come back....even while I idly wonder if I'm jinxing myself by NOT being extremely anxious about it.

But yeah. I think it's a crapshoot, I don't think the five years thing means much at all, and I think most of us are going to be just fine.

9lives70

Claire, my heart goes out to you. I am brand new to cancer world and if there's a couple things I've learned they are:

1.) no one other than those of us going through it "gets" it. The fear, the anxiety, the chronic low grade worry....our constant companions.

2.) personally I don't think I will ever feel "safe" or in the clear....at year one, two or 10.

Hang in there. You are a positive and strong force and even being new to this community I've noticed your many supportive contributions here;

grandma3X

So here's a story - my dad was diagnosed and treated for melanoma a few years ago. He's now 87 and his mind is starting to slow. I recently had lunch with him and my sister, who also had melanoma. I mentioned that all three of us have had cancer of some sort and my dad looked at me and sai "I've never had cancer!" He honestly has no memory of this. I thought how wonderful it must be to simply forget.

Meow13

That works for me just a bad dream there is no cancer.

beth1965

Claireinaz you worded so much of how we all feel its nice to know the scary thoughts are not mine alone

hugs to all

antonia1

I feel exactly the same way you do. Yet, to everybody around me, I'm completely cured. I hope I am.

Anonymous

Antonia1, I hope you are too. Hugs.

alpLewes24

What did you decide to do about the prolia injection? I have very mild osteopenia, diagnosed by a DEXA scan. My oncologist wanted me to get the injection, I said no, I did not like the side effects...lock jaw, no thanks. I said I would just up my calcium and Vitamin D but I won't know if that is really working until I can have another scan in two years.

Anonymous

I had a Prolia injection in Feb after my check up. Absolutely no side effects whatsoever. I like the idea that the drug seems to protect us a bit from potential bone metastases. I agreed to the injection more for that protection rather than from osteopenia, which seems to be a made-up condition to sell Prolia (see link below). I'm not worried about the mild osteopenia I was recently dx with, nor am I worried about osteoporosis. I'm doing everything I am supposed to be doing to reduce chances of osteoporosis anyway (yoga/strength training/cardio/eating well/not smoking etc.).

http://www.npr.org/2009/12/21/121609815/how-a-bone...

I am also taking Vit K2 for better absorption of calcium. My MO told me to eat two extra strength Tums a day and that would be all I needed now that I'm getting 2x a year Prolia injections.

Claire in AZ

Anonymous

Here's a good link that addresses Prolia and further protection from b.c.:

http://www.medscape.com/viewarticle/855803

Theresanne

I feel the same way...5 1/2 yrs out...feeling worse every day....as I hear lobular recurrence does peak later and that er/pr+ cancers are really never cured and can surface even after 20 years...I have major depression and no life at this point....

Anonymous

Theresanne,

I go to my therapist whenever I need some "grounding" with my own PTSD. I was a caregiver for my late husband who died of cancer in 96 (we were only married 3 months when his aggressive cancer took his life) and I was 37, so had no framework to rely on since no one in my family had ever had cancer or had a spouse die like he did. So when my own dx happened in 2011 I was already hypervigilant and scared about cancer and doubled my PTSD. I couldn't even get treated at the cancer center where my late husband was treated because I felt like his treatment was sloppy and lackadaisical, so I drove 45 min to another city every chemo infusion and did the same for 6 weeks of 5 days a week radiation.

I also take anti-anxiety meds as needed and make sure I get enough sleep (my sleep hygiene is really important) because when I don't sleep enough my anxiety is worse. I also make sure I go to hot yoga regularly, walk and run with my dog, lift weights, and don't watch anything that will trigger sadness or worry (pretty much limited to sitcoms on Netflix and old funny movies )

Every time I go for a 6 month check up I am so worried for the two weeks prior. I recognize that as part of my life and who I am, and giving me permission to simply feel anxious and worried actually relieves some of that worry. I don't judge myself for feeling the way I feel because i know exactly where it came from, and it's part of who I am now--the whole package.

I don't have any magic tips for you but I can tell you that what you feel is normal for a dx such as ours. Try not to judge yourself and just treat yourself like you'd treat a loved one or friend who felt like you.

Hugs,

Claire in AZ