Off to the semi-annual checkup and PTSD'ing all over the place!

Anonymous

...as usual, big sigh....off to my semi-annual check up tomorrow and freaking out about what she might find in the CBC. Question: do you think there's ever a time that ILC'rs, knowing our risk for "late" recurrence, and someone like me with + nodes ever stops having to go see our MOs so often? Is there ever a time they say, that's enough--and trust us to go to a doc when we notice something out of the ordinary?

I'm so tired of what feels like an endless looped treadmill, running a marathon where the finish line keeps moving and we never get to end our involvement with this disease, etc. etc.

Weary of feeling like I'm living from the end of each visit (so far, elation) and then the slow run uphill to the next one, where I feel threatened, frightened and angry at the same time, and apprehensive.

I guess I just needed to vent since the above seems to be more a stream of consciousness than anything. Thanks for listening.

Claire in AZ

EastcoastTS

ClaireinAZ:

All so many understandable emotions! You're further along than me -- and at this point -- I want any surveillance I can get. In fact, I'm going through the "fear" with finishing active treatment and wondering if I did enough. All that stuff. Ugh.

May be a good question for your MO. Just what you posed above. Especially if the appts every 6 months are creating additional stress for you. Perhaps your PCP can run the labs - and you see the MO once a year. Idk.

Is there a survivorship care group associated with your cancer center by any chance? I haven't checked it out but I think there is one with mine. They discuss all this stuff apparently.

It kinda sucks, to be honest, that we have the late recurrence chances. Almost takes away from us saying: we're __ years out. I'm coming to grips with how to feel about that.

Hugs for the appt tomorrow!

MmeJ

Yet another indicator that follow-up plans can vary so much depending on location, and not just dx!

claireinaz, are you still on anti-hormonals? If so I'd bet your MO will want to keep seeing you every six months until you're not.

I think these jitters are inevitable no matter how far out we are. It's simply how it is for us and I don't know that we really need to try to do anything about it, so yep - vent away. The apprehension will always be there and not even always conscious for some of us, but it sure comes front and center pre-MO appointments.

The Stage IV people doubtless have a different stew of these feelings before appointments/scans.

Anonymous

Good point mmeJ. I didn't think about the AIs. I'm taking my MO a copy of a recent report (see discussion board: clinical trials, news, research) that claims being on AIs for more than 7 years doesn't improve our recurrence rate enough to merit taking them beyond 7. Since I've been on them for going on 6, now, perhaps there's an end. I am beginning to have joint pain from the Aromasin, and have had mood swings and increased anxiety for some time. I thought I could manage that but the joint pain (thumb and hips, intermittent) is becoming increasingly annoying.

I think it's simply the weariness of always having to be so focused on our bodies. I was never a high-maintenance woman--high pain threshhold, bumps and scrapes don't bother me, surgeries I sailed through--but now I feel like I'm simply terrified of my body. I don't trust it anymore, that's for sure, at least not before these stupid appts.

I guess after 6 years I still haven't adjusted to the knowledge that I'll have to be monitored, and self-monitor, the rest of my life.

beach2beach

Claire,

Hope all goes well. I'm still new only 6mths out of surgery, and I thought I had what if's in life before cancer, now forget about it. If I'm not thinking about it then I worry that I should be more worried about it, then when I worry too much I get mad at myself for letting it take over. My sister is 9 years out of Inflammatory Breast Cancer, I had asked her if it gets any easier. She was honest. She said she found herself thinking a little less about it after a few years, but any time an ache or pain comes up, the fear is right back. Since surgery I think aches/pains i dismissed before I am noticing now and worry it's something ominous. There were no guarantees before with life, but we certainly could use some sort of positive benchmark in all this. For us with ILC it's flipped. Others worry for the first few years and slowly move on, and we are more confident in the beginning and then will worry later on. Though we all keep worrying throughout the whole time. Ugggh..

toomuch

Hi Claire,

Unfortunately, I don't think that the worry will ever go away.... I wish I had some reassuring words of wisdom about this but I don't. I just want to reassure you that I think it's normal!

Please come back and post what how your MO responds to your question regarding 7 vs 10 years of an AI. I've been on Arimidex for 7 years and I asked my MO about that study at my 6 month follow-up a few weeks ago. He basically told me that unless my bones are disentigrating, he wants me to stay on it 10 year. I developed osteopenia about 3 years after starting Arimidex and then started Prolia. I had a stable bone density study 2 years ago and am due for another but I keep putting off scheduling the appointment. I would love to stop taking the Arimidex because I have almost daily pain but on the other hand, I think I'll be even more worried when I stop it. Ultimately, deciding to continue or discontinue it is no different then the decisions we made at the beginning of treatment. We just have to follow the plan that we're most comfortable with based on the information available at the time.

I hope that you're feeling up again soon.

Anonymous

Hi all, and too much, thanks for the kind words. I am happy to say I was reprieved for another 6 months, my MO even told me my labs were perfect, so it's nice to get a good "grade". Ha ha. She didn't even offer to let me see her once a year. I know I have the choice to see her whenever I want to, but I guess I'll stick with the 6 month visit for now. I got my 2x year Prolia shot-3rd time, and so far so good--MO likes it because it protects further against recurrence in bones, one of our ILC "places".

I printed out the article linked below, and talked to her about it. She knew about the study already. She even counted up how long I'd been on all my anti-hormonals and I thought she was going to tell me I had less than a year to go, but then she remembered my + nodes. She mentioned that (although the research used women that had no + nodes) because I had more than 2, we probably should go ten years, if I could.

She did also tell me that I can stop it at any time, if it gets to be too much. Since my mood swings and increased anxiety are the biggest problem because they affect my relationships, my idea is to re-evaluate with my husband at each check up and decide for myself how long I will last on aromasin after I reach the 7 year mark.

She also offered to put me back on tamoxifen, but frankly I was bloated and pretty fatigued on it from time to time, and turned her down. My desire was to get off AIs entirely, not just take a different one.

I think I'll begin to look into the benefits and drawbacks of DIM as a potential substitute for aromasin next, whenever I decide I don't want it anymore.

http://www.breastcancer.org/research-news/5-more-years-of-ais-no-better-than-2-more

beach2beach

Glad it all came back good. I'm interested in any information you uncover. I've only been on Tamox for about 6mths.. doable so far and I know once I go through meno the plan is to switch to bone sucking AI's.

Once again, glad you got the all clear