TRIPLE POSITIVE GROUP

Hapb, What I really like are the ones who know best what treatment you should have or should of had. I look at them and ask.... Did/do you have cancer? Are you a medical Dr? Oh you read that on the internet,,,,, well then it must be true!

Some actually said all my past bad judgement was finally catching up to me.... Really who says that. Don't we all have at least one bad judgement when we were younger. And this person does not even know me. Just some one who randomly walked up to me in a clinic. She was unreal. I could write a book about things people tell me. Maybe I could make enough to pay off my Medical bills at Mayo Clinic. HAHA

An interesting article about the question of why some cancer metastasizes and why some doesn't:

https://www.newyorker.com/magazine/2017/09/11/cancers-invasion-equation?mbid=synd_digg

ElaineTherese, If the tumor was no longer palpable how did they know what part to remove? Because I see you had a lumpectomy. Did they mark it in some way before chemo? I also understand that chemo hits all the cells that divide at the point chemo enters the system, doesn't matter if it is ER/PR+ cells or just hair cells, if they divide quickly which Grade 3 usually do it means chemo will go on them. At least this is how they explained it to me. Cherry

Cherry,

Yes, the radiologist inserted a surgical marker in my breast so the surgeon knew what to remove. He just removed a golf-ball sized amount of tissue around the surgical marker during the lumpectomy. Hmm, there are studies which show that it is harder to get a pathological complete response with a high percentage of estrogen receptors.

Hi Cherry!

See http://www.ascopost.com/issues/october-15-2014/pathologic-complete-response-understanding-the-subtleties

It states that "estrogen receptor–positive cancers are the least responsive to neoadjuvant chemotherapy."

ER+ usually does not fully respond; it's true this is expected. And the jury is out on why studies show that pcr in luminalA and our type is not showing huge prognostic gains; I have done a ton of reading on it . One well respected study said that pcr is a good thing no matter the subtype, but that it becomes truly exceptional with Her2 and triple neg. after being very disappointed in what I was reading (as a pcr person), I decided to stop.

I didn't get a ton of stupid remarks, but a couple people told me about someone they knew who had bc and died. That's really nice. Tell someone just diagnosed this...wtf? In these cases, they just don't know what to say and are scrambling to establish a form of connection or understanding. In a few of your stories, though, no. They are simply stupid people

Hapb, you've been through so so much. You deserve a real break. As for Letrazole, as SpecialK said, everyone is different. I know two women who quit their AI because it made them depressed. But one has struggled for years with depression. But I don't have that problem. And others I know don't either. If one doesn't work, try another...but don't worry about that at all right now. Try not to let it consume you; you will find something that is ok, I'm sure

ElaineTherese, thank you very informative. The same must be valid for adjuvant treatment and in that case they cannot even verify whether the drugs are working or not since the tumor has already been removed.

I just came from the meeting with another oncologist in my clinic, I liked her very much, she was attentive and friendly, an elderly chief physician, very competent and willing to discuss everything. When she saw the list of my questions she admitted that we will not be able to go through them in an hour time and suggested we will book another meeting in three weeks. She also said that she will book an echo for me and was surprised that they did not do it so far, and she also said that if I wanted to I could get a scint scan but she said nothing in my blood indicated that they should order any scans at all. I know that no one can know for sure with this disease but it gave me a little peace of mind that will give me a short break from all my worries. I will be able to breathe a bit, which I need so much right now. I also asked if she can be my oncologist from now on, she said that she will try to arrange it. I also mentioned to her that I am worried a lot about my Ki67 and that I may be a borderline case for more aggressive treatment and she said that she did not think so but that she will bring my case for an additional multi-disciplinary conference to see whether the board will decide whether any other additional treatment can be recommended. Well, it is always something. That there can be such a difference between oncologists and how they treat you. The first oncologist I met just waved away all my concerns and I felt like this is it, if they cannot give me the answers what am I supposed to do?

I did not either got so many remarks about my bc, but we are keeping it private. At work I have five guys am working closely with, I do belong to another group that has its office in another city, but the guys and I still belong to the same department. The reason I did not tell them yet is that they earlier told me that four of them lost one parent to cancer, two lost their mothers to bc, one lost his mother to brain cancer and another lost his father when he was 13-14 years old. I cannot even imagine how they will feel and look at me when the news will finally get out. Me and my manager decided that we will tell people at some point in October because I am not comfortable with everybody knowing now. My best friend who lives in another country has recently sent a very cliche message to me on FB about how my husband and I shall not fight about this bc but stand united in front of this disease to be able to beat it. For some reason I just saw how she discusses it late at night with her husband telling to each other: at least we do not have any cancer, and feel better about their lives. I told her if she does not have anything meaningful to say to me it is better she will not say anything at all. It has been radio silence since. No, I do not want to tell people because I do not want to be disappointed. But I feel that if anyone will ever approach me telling that my bc is result of my bad choices I would need to walk away just to fight the urge to punch them. And I have to prepare a great line. Some people can be so mean.

Cherry

Radiation simulation today. I have a few questions to ask them first. Wish me luck

Best wishes Shelabela!

Remember, you are in charge not them.

Vicky

Good luck Shelabela

how did it go, Shelabela

I got through simulation! I do not think this is going to be fun. BUT I was approved for Proton Radiation. YAY! Downside to this is that the treatments are 40 minutes or longer. ugh.

Is there any difference in radiation? Now I have to read about proton radiation.

So my MO said, on Nerlyx, "No absolutely not. That is a terrible drug and I cannot believe the FDA approved it!" "You have no idea what will happen to yoi when you are 70 and the side effects are horrific. No one prescribes that here!"

So that's that....no nerlynx for me.