TNBC is only 15% of all BCancers'!

Yes..I knew this about tnbc and I'm also on that forum.

I would have liked the percentage of ER or Pr. My path just said it was all negative..no numbers. not good enough for me!

I am on that board also, but because I am a younger African American woman, I think I was made aware of the fact that I had a nasty cancer by my onc. 

My path report mentioned er/pr negative, the her/neu- came later, but I had already done some research about younger AA women and triple negative, and just from what my onc told me, I had a feeling.

I just did lots of research and asked lots of questions, but I think the medical professionals should be available to explain these things when it comes to what type of treatment one will be receiving and why they need to receive that particular type of treatment.

Ferne 

Hi guitarGirl.

I think my onc also mentioned this to me because he has dealt with triple neg and knows about it. He said he didn't know what kind of cancer we AA triple negs women get; he's never seen anything like it before. He told me what we were dealing with and that he wanted to use very aggressive treatment. He said I was young and my health was good enough to tolerate the treatment.

I just said OK, lets do what we have to do. At that time we thought I was at a stage II and the goal was NED and possible cure.

But triple neg doesn't effect everyone the same way. There are Triple Negs who are doing rather well, NED or in remission, and then there is me not doing well at the moment.

I also think it's the onc's experience with dealing with a certain type of cancer as well. They should be knowledgeable of the whole gamut, but if they've never dealt with it, maybe they're not. But cancer doesn't discriminate. Everyone should be told what they are dealing with (if they really want to know and can handle it) regardless of what race, what age they are and who typically gets what.

I'm just inquisitive. That's my nature and it always has been. I just don't feel right if I don't understand things to my satisfaction. That's why this brain mets really burns me. I'm confused and out of it. I'm not used to that.

One of my mottos is, "If you don't know, go find out." I believe communication is extremely important. But one thing I do know is that when I first met with my onc he was very cautious. He was extremely vague until he understood where I was on an emotional and intellectual level. Then when he saw what page I was on, he opened right up. Same with my rad onc. He know's I read and do research and knows I ask will him all kinds of whacky questions.

Hugs to you,

Ferne 

I'm not AA nor young but my surgeon told me I had a nasty, aggressive cancer. I was diagnosed Sept 2005. The first onc I went to had no inkling what tnbc was but the other two oncs I saw and the one I ended up with for treatments knew very well I needed to hit it hard.

However..my insurance company did not know that and did not agree...of course. (I got Taxol donated to me).

Susan...Do you have socialized medicine? I was unclear about what you meant at the end of your post.

I was also wondering about your comment further up..what did you mean about "real English"? Did they use too technical of terminology on your path?

I live outside of the US and so my excisional biopsy path report which was done in one hospital was in English and the lumpectomy/snb path was in our native language.The English on the report was toooo simple! It had no details on it at all. I find that if I get a report in English and I dont' understand it, I start googling big time!

We do have socialized medicine and it's helpful for most things. I was part of a study and did the BRACA testing free, but needed to be part of an hour long interview via telephone after I got my results.

The problem here is that I just learned that we only have 10 MRI machines in the whole country which is why it is so hard to get an MRI. They refused to do a breast mri even though I have dense breasts AND my onc called them! They just will not approve it for me.

ravdeb -



they gave me the same path report the doctors get - I was able to figure most of it out - at least the important things like size of tumor & triple negative-ness. It didn't say "triple negative" in so many words. As I was researching terms to understand the report, I started reading about triple negative, went back to the path report & realize that's what it was saying. I want both - an "English" summary and all the details.



no I don't have socialized medicine, but I do work for an organization that has very good medical benefits. What I mean by that statement was seeing the different levels of care women on this forum are getting. Why did one woman who had more reason than me to get the braca test done was turned down and I got it easily. Why are some women making choices that show that they aren't getting enough data when they make their decisions.



I was lucky. I had a surgeon who specialized in breast cancer and the same with onc. I feel for women who are going to a general onc - especially ones that are unfamiliar with trip neg - what are they being told. So I do feel if I ever become an activist after this (unlikely), I wouldn't spend my energy so much on finding a cure as finding equal care for everybody.



susan

Hey Pearl,

Neither my onc, nor my surgeon...nor my pcp...told me that I had a "rare" kind of cancer.

I found out about it on this website.

I thought....negative for this "yea!" negative for that "yea!" negative for that too! "yea!" And when my onc told me no treatment after chemo and I was like "yea!" he didn't say s*it.

I ripped him (onc) a new you-know-what when I saw him next. I guarantee you he won't do that to the next trip neg patient he has.

Hugs girl.

Traci

Hi Shirlann,

What kind of rib problems?  I finished rads in Sept and have recently been feeling a pinching kind of pain on the radiated side in my ribcage - similar to when you are exercising or running and get a sharp stabbing pain that then disipates quickly - except htis happens when I am sitting perfectly still...