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when's the onc not your md anymore

suezav
Posts: 42
Joined: Dec 2005

i'm really confused here and can use some advice from you guys. brief history----my daughter was 22 when dx with stage 3c rectal in april 05. she had chemo, then surgery november 05, radiation and more chemo, finishing up last may. she's been doing really well(knock wood), working full time and enjoying life again. she has bloodwork done every 3 months and ct scans every 6 months. latest bloodwork was done last week and everything was normal. yesterday she started having some weird chest pains radiating up to her neck so we decided to go to the emergency room to have her checked out. 7 hours and several tests later they had ruled out embolisms and heart problems and felt it was just some kind of inflamation. they gave us copies of all the bloodwork and today, my daughter noticed that her hemoglobin had dropped 4 points from last week's bloodwork. she has been feeling a little tired. i'm concerned about the drop and she contacted our "right hand man", the oncologist's np. (via e-mail, letting the onc know what's going on also). the np wrote back that since her bloodwork was fine last week when they drew it, it's basically not their problem and she should contact her pcp. (pcp is brand new to her having only been seen in his office once)

so, is this what happens when you have completed treatment? shouldn't the onc push up her ct scan from may to now just to double check that there's no bleeding going on somewhere? i'm so shocked that the onc doesn't want to pursue this. when does your care shift back to a pcp? maybe my expectations are all wrong. i figured that a drop in hemoglobin would be of concern to them. what would be your expectations? who would you call? i could really use your words of wisdom! god bless you all. we are all warriors in this together.
sorry for the long post...
susan

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Susan -

Your daughter is still actively under care of her oncologist. I am sorry the nurse-p kind of blew you off, but if it were me, I would just make an appointment with oncologist - have your daughter call and say she has some concerns - she has a right to make an appt any time she wants to. Then, she can have a face to face with the onc, and discuss the issue. The oncologist may explain why she/he is not concerned or may refer her back to her PCP (but in the latter case I suspect only after doing more tests or explaining a clear reason why she thinks this is warranted.) I love nurse-practioners, but I would not give up just because your daughter received this answer to an email. Email is great, but when it doesn't work to your satisfaction, the old fashioned approach may be the best.

Take care,
Betsy

CAMaura
Posts: 719
Joined: Feb 2005

OUCH! No, this is what happens when, sometimes, we encounter rudenss within the medical field. You aren't ten years out from chemo or diagnosis...and even then, your onc should know about things are be interested. It was spot-on for your daughter to notice the quick change in her hemoglobin. I would get right into the pcp's office and then ask for an agenda to figure this out. Be assertive; if your daughter's pcp hedges, I would clearly state that your need is to get to the bottom of this through a clinical and defintive diagnosis of what is going on. If a specailist needs to be brought in, so be it. (I am assuming that your insurance will cover the flow of new docs if necessary.)
I am sorry that you had to encounter such treatment. Unfortunately, there is not guarantee that because someone is in the medical field that their services will be great or even good. When all is said and done, you might feel comfortable writing a letter to the onc and the medical group he is affiliated with...it never hurts for them to know if you are happy - or not - with their services and it might help you receive better treatment.
All the best to you. And most importantly, I am hoping your daughter is feeling better and that her docs figure things out very soon. Let us know! Take care - Maura

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I think the oncologist should be informed and she should make an appointment with him/her. However she needs to get that hemoglobin rechecked again now by her pcp to see if there is a further drop. By testng they should be able to get an idea if the drop is from blood loss or from hemolysis (breaking up of the red blood cells). If the latter some type of autoimmune process could be going on. If the former then she needs to be rescoped-possibly upper and lower to see where the loss is coming from. This would likely be by a gastroenterologist who her pcp would refer her to.

Have her keep pushing until an answer is found. It is unfortunate that everyone in the medical field doesn't have the good bedside manner but don't let that stop her from getting the care she needs and deserves.

Dick

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Susan,
I don't know if that is a significant drop in the hemoglobin or not, I really have no idea, unless it was "flagged". However, normally, a patient continues with the oncologist for at least 5 years after treatment before being turned back over to the FP. So, I agree with the others, at least try to call the oncologist and find out if they feel that this is significant or not and if you are still uneasy about it, you could go ahead with the CT, etc. I don't think that is unreasonable. However, try not to get overly worried about it since you don't really know if there is even a problem.
Best wishes,
Susan

suezav
Posts: 42
Joined: Dec 2005

thank you all for responding. i appreciate your imput so much and it helps validate my gut reaction that this was handled very poorly by the np. we discovered today that a new med prescribed by my daughter's rheumatologist to treat her psoriatic arthritis (the kid can't get a break) can have the very rare side effect of affecting the hemoglobin count. she's off the med for now and will have new labs drawn next week (ordered by the rheumatolgist) hopefully, things will be normal again. if not, she will make an appointment with the onc. you're right betsy, she has every right to see the onc.

by the way, the np is very fond of my daughter, even inviting to her home to meet her family. she's had her over to her pool and is so proud of my daughter's accomplishments. maybe she was having a bad day. i will let the onc know exactly how i feel (nicely) but promished my daughter i would wait until i cooled off a bit.

again, thank you for your words of wisdom.
susan

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