Standard of Care?

I wouldn't expect a doctor to follow up to see how you are doing. That would keep them pretty busy. Usually if you have problems you can call and talk to a nurse at the infusion centre. 

I wasn't told about side effects. I learned that from here. I think in general doctors answer questions but many people don't want information and just want to do what they are told.  I think docs tend to wait for the questions.  My friend has lung cancer and gets less information than me because she doesn't want to know whereas i do.

I don't think your standard of care was much different than what i have read about.

If your OncoTypeDX score is in the gray area, many MOs will leave the decision up to you because it comes down to your comfort level with regards to risk. That part is not unusual at all from what many women here say. I had Triple Negative, so chemo was a certainty. 

I went to a major NCI designated Comprehensive Cancer Center. I had TC and it was definitely not easy for me; however, it is gentle on many people. We are all so different that one person's experience can vary drastically from that of another person. I wouldn't call any chemo "easy", but some people have much less difficulty than others. My MO discussed the major side effects like hair loss, nausea, red and white counts. The rest were listed in the paperwork that was given to me as part of the informed consent portion. 

Vitamin D was not part of the panel during my pre-chemo labs either. It's not considered standard in many places. It is common that no one called to follow-up after chemo. I'm sure some places do it, but I don't think it's the norm for them to call and check on you in the majority of oncology practices. The MO's nurse is there to field calls for the MO who is usually very busy. Unless you specifically ask that the MO touch base with you, the nurse will usually handle things unless/until they feel the MO needs to get involved. If you feel you need to speak with the MO, then it's best to relay that to the nurse; otherwise, you are not likely to get a call from him or her. 

I'm sorry you feel this way. I can't say if your experience is something to be concerned about, but from what you've written, it doesn't sound too unusual. Certainly, if you feel you're getting sub-par care, you should look into options.

Best of luck. 

Did you have a Neulasta shot? 

 Sometimes nurses aren't so great/experienced/skilled what have you so they are incapable of veering from their superiors instructions ... Ask your MO about getting your vit D levels next time blood is drawn., and ask MO what they think generally about vit D and it's possible role

I do not believe it is  standard to get vit aD levels taken but there is a school of thought/theory that it is helpful to have them in the sufficient range, at least.  You can read the mixed reviews/data about vit D on this breastcancer.org website.   (Latest: http://www.breastcancer.org/research-news/questionable-study-finds-no-vitamin-d-link

I don't know where you go for treatment but I am surprised no one apprised you of SE. Very important to know as you really need to be in touch with them about it - I would ask MO about this (and since she was away let her know NO one spoke to you about this and you need that conversation!)

Momtoirishquads I agree and understand re  mid range results and how the recommendation for chemo or not - based on oncotype testing - is unclear.  I see your profile/remember another post - I think you are younger than average,  grade 3 , this was a second time , P-, and your case is lobular.

 Keep in mind while you crunch numbers and listen to others and read others experiences -  your distinct differences in terms of ILC/IDC, grade, age, your own personal history.

 Oncotype dx testing is another tool.  In decision making, it should not, nor is it intended to, eliminate everything else. It is to help guide and another piece of info-arguably superior info - even the testmaker's own corporate website would probably tell you that.

Also- I don't know the answer to this but maybe you want to ask your MO about the extent of validation testing that's been done re oncotype on lobular, vs ductal.  And if this is relevant.   (Also keep in mind that the reason oncotype test makers themselves say it is a tool because the test is in and of itself limited- albeit the best we have today. For example, what is the risk beyond 10 yrs particularly if you are diagnosed young?  Oncotype has not been studied that long and I think most studies are based on post menopausal median age 60 type thing...)

I would also urge you not to base important treatment decisions for yourself on things like less-than-competent nurses.  If you are unhappy with treatment at this place, by all means, go elsewhere for additional opinion or even treatment but make it a superior second opinion place (nci - ccc).  

Chemo sucks - no two ways about it.  But it ends.  And most get through it successfully. If indeed you are the mother of 4 young kids, you owe it to them to do everything best recommended for cure. Heck, even if you had no kids-of course you would owe it to yourself to do everything best recommended for a cure!  It's great you contacted your CA mo for a second opinion but you might want a third opinion and why not get one from MD Anderson if you are not too far from there. Pick someone with some YEARS of experience at a place like Anderson to counter your MO who sounds fine/good but young (and with poor nurses!)

Momtoirish   So sorry you are having a really rough go with chemo.  Chemo was pretty bad for me, also.  I am amazed that that some women can continue to work during it, but I think I must have been unlucky with the severity of the side effects.  You mentioned not having info from the oncotype that showed how much of a risk reduction you would get from chemo.  Did you get the actual paper test results from it?  You should be able to look at that and figure out what it is, and if not if you post here we may be able to help you figure it out.  Although it would be definitely best if your MO would go over that with you!! 

I also wanted to tell you that it may not be that unusual that you still feel bad at 1 week out.  For me it was a solid 7 days of feeling awful and then I got better.  But you should have a frank conversation with your MO about your side effects so hopefully they can adjust things for the second round.  We added 2 new meds for me my second round and it made chemo bearable, whereas the first round I didn't think I would be able to do 7 more.  Good luck

Kendra

95 is a GREAT number for vitamin D.

I am not a doctor, but with lobular (which is notoriously sneaky), I'd finish off the chemo, BUT for sure, I would sit in front of the door so the oncologist can't escape, and make her listen to all the things you've said here about what a frustrating experience you've had. If they have been treating you this way, then they are doing the same to their other patients too. (Go in with a list so you don't forget anything & specific recommendations on things you feel they need to change). See what kind of response you get & then decide if you want to change doctors. I would also ask about a Nuelasta shot. I WANTED to get them because then I could do chemo ever two weeks (and get it over with), plus I didn't have to worry about my white blood cells diving and getting sick from something else. NOT a fun time!

BrooksideVT wrote: "I'm pretty sure all oncs and pcp's are checking this level in their bc patients"   

I've been to three oncology practices (not because I was unhappy, we moved a couple of times and I had to find local ones). None of the three did Vitamin D testing as part of standard bloodwork either during active treatment or during follow-up. I asked about it since I've read the research linking low Vitamin D and breast cancer, specifically how it impacts Triple Negative. All were aware of the research, but testing wasn't a routine part of the panel. They were all happy to add it if I asked them to, which I did.

ETA: As for my PCPs, only one included it as a standard part of the panel; the others did not.

Brookside: Yeah, I know the research on Vitamin D as it relates to breast cancer is emerging, but has been in the works for awhile. Many studies that I've seen have interesting results (especially the ones for Triple Negative, which I seek out those articles because they apply to me). Because it's a hormone, it's nice to see it getting some recognition. Even if there's no causation established soon, I'm encouraged that correlation is being acknowledged in some circles so we can hopefully determine if there is a role, and if so, to what degree. The one PCP that I mentioned who did automatically test for it had just lost her mother the year before to breast cancer and had recently undergone a breast biopsy herself, so she was more sensitive to the Vitamin D issue. I think that's why she added it to my panel. I do wish that all MOs and PCPs tested automatically.

You SHOULD be the squeaky wheel. They are supposed to be working for US, not the other way around!