If I am "extremely high risk for recurrance" why no real follow-up?

[Lolly]

I think the "wait for symptoms and then scan" school of thought is a holdover from the earlier days of less accurated diagnostic tools, and certainly for us Her2 gals not appropriate any longer in light of how Herceptin has changed the course of breast cancer, in that IF metastasis is discovered it is much better to discover it earlier and jump on it with both feet, ie Herceptin and chemo. I attribute my long survival with metastatic disease to early diagnosis of small mets to nodes before spread to major organs occured, and we've stayed on top of things with maintenance Herceptin and chemo when necessary.
The other side of the story is valid, in that false-positives are bound to occur and are no fun, but better to be safe than sorry IMO.

<3 Lolly

[Her2nSue]

Hi Kimberly,

Don't feel bad about being annoyed with your onc's attitude. I've encountered that as well, esp. after discovering that my heart was weakened from the herceptin. It was a quick visit with the onc after that diagnosis, just to primarily tell me that I wasn't going to finish my year of treatments as was previously scheduled. After that discussion, it was a wave of the hand as he strolled out the door with "see ya in 3 months". I felt let down and pissed off all at the same time. If the oncologists that behave this way, just took a few more seconds to stop and treat us women who face our futures with uncertainty with a few kinder words with feeling i.e.: "Well, we'll see you in 3 months, do bloodwork and check on things to make sure all is going well" maybe, just maybe, we might feel a bit more secure when they walk out that door.

I send you a hug and hope that the warmth and caring that it brings helps you feel a little less dejected.

Sue

[Kimberly Lewis]

Don't get me wrong - my Onc is a great guy and he is going by the standard of treatment set by the mainstream from what I can tell. He is very understanding and compassionate. Still when I hear the way others on this site are being treated by their Oncs it just amazes me the different ways this disease can be treated!!!! I guess that is more what I am frustrated by - and I imagine underneath it all it's driven by $$$ - how much the insurance companies can pay - how much the Drug industry can charge and we peons in the middle huh? I know there are good people in this Cancer Industry - and I don't want to generalize or be negative, I just get in despair trying to figure out the best thing to do and how to get it! Thanks for your answers and encouragement - I will fight on....

[Margerie]

Kimberly,

I think I know how you feel. After chemo and my ooph and supposedly all of my treatment decisions had been made- I really felt the fight was not over. I wanted to do everything possible- without compromising my quality of life any more than has already been compromised- to PREVENT mets instead of waiting for them to pop up. I also love my onc, he is pretty progressive and really lets me work thru my decisions and gives his input- but never pushy. One day I just told him that since my cancer (triple +, grade3) has the most recurrences the first two years from diagnosis and I am doing fine so far on herceptin (LVEF at 70, minimal side effects) and once you get mets you are on herceptin for life if tolerated, and I am at high risk to recur- that I would like to stay on herceptin for a second year. He said if I want to, I can. I am so committed I just got a port after going a year without one (I am a stubborn woman- love this little port now). I also inquired about adding Tykerb once it is FDA approved- he is all for it. I am also doing the her2 vaccine at Uof W with his blessing.

I have another friend with a similar diagnosis and the same onc. Her comfort level is much different than mine- she had minimal treatment and doesn't want to add anything, or do the vaccine, or do prophylactic mastectomy (bc in her family, not mine, but I had prophy anyway).

So really it is up to you how much treatment you want to pursue. I used to think all of it would give me peace of mind, but now I realize nothing will until they can guarantee a cure. But I really think I want to fight big to prevent a recurr or mets- so much harder to control after recurr happens.

I hope your onc listens to your concerns and you can come up with a game plan that would make you more comfortable!

[Lolly]

P.S. Just want to add that my earlier comment about long survival being attributed to early detection of small mets is not meant to sound "superior" to those of us who've been unfortunate to experience mets IN SPITE OF early detection, vigilant oncs and lots of doing the right things. Sometimes mets just happen, and as reasearch is now showing there's much much more to the Her2 story than we know. Someday we will know the full story, and until then we must just do our best and roll with the punches.

[rinaina]

Kim, I hear you loud and clear and am with you on this. You are not crazy by any stretch of the means. I think most of us feel as you do.