Asian or Asian American Women with BC?

Teal3Pink1

LetLet: Your name should have been the giveaway that there was some Pinay action going on! With your daughter, that makes 8 of us that I know! Cancer was NEVER on my radar. I didn't know any other FiliRicans w/cancer or major diseases, so I thought was immune...!

I had the genetic counseling at another hospital before I switched to MSKCC. It is just a blood test and takes about a month for the results to come back. The appt is 2 hours b/c they go over your complete family history--if you have a lot of people in your family like I do, it may take even longer. Once your risk is assessed, it's good to talk about what having this information might mean in the future--for you and your daughter and the rest of the family. Some people don't want to know. But either way, there are lots of emotions associated with going through this process, which is why it is good to spend some time with the genetic counselor.

FORCE (facing our risk of cancer empowered) is a great organization with a great website for people who carry BRCA and other mutations. 

Love nanay, but you need more balance nutrition and variety than lugaw. 

Letlet

Teal I just had to laugh at your post. Mom is stepping out of the house as we speak and she said, don't forget your lugaw is here. Course I told hubby to pick up pancakes from McDo lol. She doesn't have to know.

In the beginning I was gung ho for genetic testing. Now that I have had time to think about it, not sure if I want to do it. I mean I'm still in the thick of treatment, exchange and rads and Herceptin. If I find out I'm positive it'll make me freak out about the other boob that remains. On top of that my daughter is just 5....I'll spend the next 20 something years wondering if she gets it because of "me".

On the other hand, might push me to get a hysterectomy which I don't want to do. But heck don't want cancer too...

Oh and mom said this time she put an egg in the lugaw

Heidihill

Another Filipina here! I'm not HER2+ but I see there are others here who aren't. I am Stage IV -NED - no evidence of disease for 3 years now. I go to the gym everyday to try to keep NED around. Wish all of you lots of luck on your treatments!

Teal3Pink1

LetLet:  I hope you enjoyed that egg!!!! Be glad it wasn't baluut.

There is no rush on the genetic testing. Get though one thing at a time and when and IF you are ready, it will still be there. If the test comes out negative, then your daughter's risk will be the same as the general population. If it is positive, then the chance your daughter is carrying the mutation is 50%. IF she decides to get tested when she is older and is positive, she doesn't have to make any decisions right away. So many emotions, so many ways to handle the information! This is why the counseling part of genetic testing is very important!

Teal3Pink1

Heidhill:  Thanks! Congratulations on NED for 3 years. And stage IV. That's HUGE! You are awesome!!!!!! What treatments did you have?

Heidihill

Yerba mala, as they say.

My doctors thought I could take the big guns and brought on taxotere and A/C with zometa for 6 rounds. That was followed by a mastectomy, axillary lymph node dissection and radiation. Now I am on femara and until last year was stll getting zometa. I'm trying to decide if/when to take it again. In the winter I don't make enough vitamin d, so they give me infusions. I think that's an issue for darker skin types.

dizzyakira

We should totally meet if we happen to be at MSKCC at the same time.  My mom is also feeding me mushy rice  -like rice congee but not as watery.  It's so yucky because all she would put there is soy sauce and MSG.  She thinks I will be cured by MSG. She's also convinced I got bc because I didn't eat enough and weaken my body to germs....aiii,,,I had an apt today at the PS to remove my drains and she drilled the nurse about possible pills to up my apetite (she wakes me up to eat at 6am, 8, 10, 12,2, 4, 6, 8, 10, 12) Honestly I'm exhausted.  They are full meals - 1-2 cups of rice or congee sometimes with meat and veggies.  And fruit/juice/cake/candy every single hour, not to mention the ensure...I know she means well but I will be glad when I can do things for myself lol.  

I hope all you ladies are doing well as we head into the weekend. 

Letlet

Dizzy, I'm sorry but your post made me chuckle. Sounds like my mom too. At one point I was eating the soft rice without anything for three weeks. She made it everyday and made sure I ate it and made enough for the weekend when she wasn't around. She tells me that I need to change my diet, pretty much implying that it was my diet that gave me BC.

Ladies, are we all definitely set for next Wednesday? It's less than a week now. I have a couple of appointments in NY but will make a dash to Jersey as soon as they are done.

DiamondGirl

Heidihill, congrats on the 3 yrs NED.  And yes, Dizzy, your post is funny but so true.  My husband is Filippino, so it makes me ChinaFino or Chinapino. LOL

Letlet

So sorry, the part that says meeting up was for the new jersey thread

Teal3Pink1

Heidhill:  How are you tolerating the femara? Is there a better time of day or night for you to take it? I got my rx for femara filled, but I'm not supposed to take it until the radiologist says I can b/c achy joints might make it uncomfortable to lie still during rads. I'm also d deficient and started taking weekly 50,000 units of oral D2 last Sunday. When I was deficient last winter, 1000 units daily was enough to bring it back up, so 50,000/once a week sounds excessive. I wonder if our  bodies are designed for the tropics and plenty of sunlight, so that's why many of us are deficient in the winters.

Teal3Pink1

DiamondGirl:  I vote for ChinaPino!

Teal3Pink1

Dizzy and everyone at MSKCC, I'll be getting rads for most of March. I'll have a schedule after my appt w/RO on 2/22. I'm hoping to get early mornings so I can go straight to work afterwards. But there's always time for French Vanilla!

dizzyakira

I guess we all have similiar moms.  Lol I went to get my drains out this past Wednesday and OMG we took the subway.  My mom yelled and swung her tote bag at people to get me a seat, she yelled at the people passing advertisements if they get too close.  And at 42 Grand Central station she walked in front of me and swung her tote back and forth so no could walk close to me.  I thought I would be too numb to be embarassed but wow lol lol  I am so glad I don't know any of these people and hope that no one got it on video to post to youtube lol lol

 We could meet if we are all at MSKCC at the same time.  I have an apt there this Monday at 345 (my pathology report :-O)  I'm going to try to convince my mom not to come with me lol  It's a slightly longer subway ride from Brooklyn and coming back we'll be in the thick of rush hour.  Hopefully by then I would have a plan of treatment.

I hope ya'll have a great weekend!   

Heidihill

Dizzy, your mom is so funny!



Diamond, chinoy is the term. Pinoy is slang for Filipino.



Teal, I don't know about the best time. People say they sleep better when they take it at night. I take it at night because I never remember to take anything until I'm about to go to bed. I was told to start taking femara a few weeks before radiation. At the time I read that it makes cancer cells more sensitive to rads. Starving from lack of estrogen, they're easier targets? I suppose they thought I needed all the help I could get.

Teal3Pink1

Dizzy: Too funny! After surgery and all the tests and exams, just when we thought there was no shame left our families can manage to come up with something... haha!

Chinoy!!!! I love it!!!! I'm going to call my sister and tell her that we are now Ricoys!!!

Heidhihill: Thanks! That makes sense. I'm going to ask my RO on Monday (my appt is 2/28, not 2/22) about taking femara before starting rads.

Letlet

Heidihill, I totally didn't read the post that you are Filipina too Congratulations of being 3 years NED!

Heidihill

Thanks, letlet!

Incidentally, I saw someone posting as americanpinay. Pinay is the female form. Teal, you are more precisely Ricays!!

I am Swinay by marriage, as I am married to a Swiss. OK I'll stop here.

Teal3Pink1

Sinay: Haha! We have a brother, so I think maybe the gender goes back to masculine? Not sure. When I told my sister, she suggested Boric-nays or -noys.

My RO wants me to wait to start femara after rads, even after I promised I could suck it up and lie still even if the joints started to ache. Simulation will be on 3/16, so I'll ask again.

dizzyakira

Hey ladies,

just want to say hi and how is everyone doing?? Today is my first day of A/C. I'm still on the soft mushy rice diet, but with sauteed asparagus.  My mom came back, so glad she did.  She even braved the subways again during rush hour and managed not to swing or yell at anyone this time.

I got lots of smiles today at MSKCC, got me wondering if any of them were you guys    Hope all is well with everyone and thank you for sharing stories.  It is just so helpful.