Bone Mets limbo...

KBeee

Wow. Concerning that he did not review all images. Makes me wonder how often things get missed. Just be meticulous in documenting any new symptoms. Glad you got an explanation

Maureen1

(((Nancy))) so sorry to hear the roller coaster ride you've been on trying to get a definitive opinion on your scans...BC is hard enough to deal with, you don't need the ambiguity of different radiologist interpretations...I'm thinking of you, (((Hugs))) Maureen

NancyHB

Barbe - thus was not the radiologist who initially had the concern, rather he was the doc who read the scan and deemed be "all clear." I don't feel settled about this, but I've come to the end of the road so I'll accept the information Ihave.

KBeee - will be watching diligently for any symptoms - and running and doing yoga as often as possible. Been turned loose by my MO so I'm on my own out here (after only 10 months). Really weird.

Maureen - thank you my friend! **hugs** right back atcha!!

Hopeful82014

What do you mean, Nancy, that you've "been turned loose by your MO"? Who is following you?

NancyHB

My MO has turned me over to a PA for "survivorship" visits once a year. No exams, no blood work, no other tests unless I have any symptoms.

barbe1958

Rats Nancy I was hoping it was the one who saw something bad and now sees his error.

I only saw my onc once a year with no blood work or scans. My PCP would do whatever I wanted with symptoms though.

pupmom

Nancy, what is an NO? Also don't understand what the rest of your message means.

NancyHB

sorry yorkiemom - I corrected "NO" to "MO" (fat fingers, small screen). Since I'm TN I don't take any AIs or Tamoxifen so my MO doesn't really need to see me anymore. After treatment we move into "survivorship" visits which basically covers life after cancer - how to move forward, resources for diet and exercise, things like that. It does not include any physical breast or body exams (I can see my OB/GYN for that - if I had one) or blood work. I'm not sure I see the point, frankly, and have decided to go to my first visit in three months to say goodbye. I'll be having my port removed in a couple of weeks, too - my MO sees no reason for me to keep it (even with a recurrence). I don't like a any of this, but it is what it is

pupmom

No problem Nancy! Was just wondering if I had missed, once again, another new acronym! Best wishes!

KBeee

That lack of follow up seems really lax. I don't even think it meets the recommendations.

Hopeful82014

I agree, Karen. I'd be really uncomfortable with that - and would probably opt for a new MO, given any choice.

NancyHB

KBeee - I couldn't agree more, but I don't know what else to do. I feel surprisingly dismissed as "low risk" even after a recurrence that is now TN. I'm sort of at a loss at this point. At least I have my BCO family

NancyHB

Hopeful, I'd jump at the chance for a new MO, but with treatment completed I've been told by my next choice (UofM) they'd pretty much do the same thing. There seems to be a shift away from the "illness" model to the "ongoing health" model. But it seems to leave no room for questions or "what ifs". Ihave to let go of this whole incongruent CT thing because I've been told with a "clean" scan (my recent one) and "good" blood work, no future tests will be ordered.

Hopeful82014

It's a terrible position to be in, Nancy, and I really empathize. It's pretty difficult to accept that you'd be seen as low risk and cut loose with such minimal follow up.

I think one of the problems of minimal follow up is that it forces us to constantly pay attention to what's going on with our bodies, to pay close attention to aches/pains that we would otherwise have shrugged off, to track their duration, etc. How the heck are we supposed to get back to some sort of equilibrium if we more or less need to be so focused on our bodies?

In your case, Nancy, I'd feel like I'd been abandoned in the wilderness.

barbe1958

But Nancy, aren't you on Herceptin?? I'm stage IV and my oncs only want to see me every 6 months and my rad onc only one more time and then yearly! I go to my PCP with any problems and he gets me the scans I need. When I was at my onc last week he wouldn't even give me steroids for my radiation pneumonitis - wanted my regular doc to prescribe it so he would be responsible to follow up and not my onc.

They even wanted me to do a tele-doctor from a closer hospital to home rather than have me drive all the way to the cancer centre but I'm sorry, I'm old fashioned and want to look my doc in the eyes without a screen involved! Maybe when I'm stabilized I won't worry but right now I just have too much still to resolve.

NancyHB

Barbe, I'm triple negative so no - no Herceptin. I completed TC with in June, no chrmo since or other treatment since then

barbe1958

Wow you really have been left dangling. A bit of a brush off. I'd be offended as well. Are you going to tell them goodbye really and let them know how you feel? Do you have a PCP that you trust?