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

[Kimberly Lewis]

I can't understand that when my original Oncologist says something like this why I am sent on my way after my last herceptin treatment with the "you've done all you can" see you in 3 months comment. Am I crazy or is this crazy? The woman who is pushing for CT scans to prevent lung cancer thinks we can prevent something like 80% of lung cancer deaths by early detection. Why not do this for breast cancer patients? They should for any high risk person like a smoker. When I read stuff like this it makes me feel like they expect 50% us to die anyway so that is a acceptable risk. Sorry - I am a little worked up by this but what do we do? Am I the only one not willing to wait around till I have a metastisis?
Thanks for letting me rant...

[Yorkiegirl]

Kim you wrote "Am I the only one not willing to wait around till I have a metastisis? "

No, your not the only that feels this way. I certainly do. My Onc is tha same way, WILL NOT DO ANY SCANS ON ME AT ALL. Say's all is fine. Follow up and blood work in 3 months.

I'm checking into having my PCP order the scans for me, for peace of mind.

[tousled1]

Kim,

You are not wrong in feeling the way you do. I'm happy that you have completed your year of Herceptin. I can't wait until I reach that point. As you are at high risk for recurrence, as I am, you should insist on a PET/CT scan. My oncologist will order a PET/CT scan for me every 3 months along with my echocardiogram. Once I finish with my year of Herceptin I don't know what she will do. At that point I will insist on a scan at least every six months. If you onc won't order your scan then I would do what Yorkiegirl suggested, go to your primary care physician and him/her order it.

[Sherryg683]

I think it depends on your oncologist. I get PET/CT scans every 3 months and wouldn't have it any other way. I am stage IV (NED for 9 months now). A friend of mine who uses the same Oncologist as me was a stage II and she got PET/CT scans every 3 months also for the first year and half, and now every 6 months. My Oncologist will do whatever we want to give us peace of mind. I am lucky. I wouldn't just sit around waiting for mets either. Because I know from experience that mets don't always present symptoms and it's better to catch them early that have them spread all over your body and then deal with them. I recently read on the John Hopkins website that those with single small mets in any major organ has a better prognosis than those with many mets in multiple organs..it just makes sense. Get your scans or find an Oncologist who will work with you...it's your life..sherryg683

[Linda]

Hi all.
The other view on scans; I'm super high risk (stage 3a) and have an onc who likes to do routine scans. I've been scanned twice since finishing tx and each time have gone through a false positive before having to do more scans and find out that, no, I do not have metastic disease but do have radiation scarring on one lung. I can't tell you how disturbing and stressful these two events were. Both times, my doc was talking about doing open lung biopsies! Can you imagine going through that -- major surgery -- for a misdiagnosis! Anyway, I know scans can provide much peace of mind and find things early -- but I just wanted to let you know that there is another side to it.
Best to all, Linda.

[Lauriemn]

I have talked my onc into having routine scans, after he at first told me that he would not do scans unless I had symptoms. I don't believe the thinking that finding a metastisis before you have symptoms doesn't improve your survival.I believe it is the ins companies pressuring drs to not do so many scans. In fact, in today's paper, it was announced that certain ins co will now make drs get prior approval for diagnostic scans. My ins co is one of them and I am now worried that I won't be able to continue to get scans.

Laurie

Stage 2b
4.5 cm 2+nodes
er/pr-

[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.