TRIPLE POSITIVE GROUP

Bren58

Pbrain, I grew up not too far from Valley Forge and now live out towards Reading. About an hour or so from downtown Philly. My BS is at Jefferson Hosp.

Had my 2nd round of chemo today. Saw my MO before to go over blood work, etc. He felt under my arm and really had a hard time finding the lump that had been there! I guess that means the chemo is doing what it is supposed to do. Why am I surprised? That is what I (and a lot of my friends) have been praying for.  So 2 down and 4 more to go.

Hope the reason everyone is missing from the boards is because you are feeling well and are able to be out and getting ready for Christmas!

LeeA

Hi Bren!  Another great photo of you!  

Editing to add:  great news about the lump being hard to find!

Omaz

Bren - wonderful news!  

cgesq

Hi All,

Can anybody recommend an oncologist in the NYC area who specializes in triple positive breast cancers?  Is there even such a specialty?

I am thankfully approaching the end of my 18 week TCH regimen, and would like a consult with an expert in our type of cancer. 

Thanks,

ashla

Bren....



Wonderful news. That's about as good as it gets for us on this trip.Rejoice. .

Bren58

Thanks Ashla and Lee. I was really surprised that he could feel a difference after just one chemo tx. I am really hoping to avoid the ALND surgery. That scares me more than anything else!

ashla

Bren..

Did they say if you had a good response to chemo that you wouldn't need ALND?

cypher

Bren, that is great news.

camillegal

Bren---always good to hear good news.

Pbrain make sure u take the immodium as often as u can, it never worked for me but I know it works for most. And I sure hope it does the job for u.

And it is more quiet than usual, but I too hope that means everyone is busy, not sick.

I have to go and get some tests done today--so as soon as I get acces to a car, I'm going--and I don't care that I have some Diarhhea today I'm going to just get it over with. I have all my big stuff with different drs. starting January--so I just won't think about it til then.

beckstar18

Bren, glad to hear the tumor is harder to find!!!  That's great news, especially after just 1 round.  I am glad to hear it's working.

Bren58

I don't go back to the BS until mid February and get another MRI. From the beginning all I have heard is chemo, ALND and rads. I am just not sure I want to do all that, especially since I fall into a category that there really is no standard protocol for. As all the doctors have said, I am not in the text books, not even in the back pages of special notes. They still can't decide if it is a recurrance or a new cancer even after taking a second look at the slides from 2000. Being "special" is not all it's cracked up to be! I also have an appt with my PS in February to find out what the implications of ALND and rads would be on the implants I already have. I would hate to loose them after all time, since I have come to accept them and made peace with them!

shore1

Bren, so glad to read your news. I love to read good stuff like that!

PBrain, have a nice trip back to Philly. I know you have the Big D, and that sucks, but maybe it will stop & you can enjoy a cheese steak at Pat's or Gino's while you're home

TonLee, catching up on all the posts - praying all turns out well. Sorry you're having to stress about this crap right before Christmas.

Cgesq, my center is in Philly, but there is a thread on here for NY/NJ/PA - not sure if you have seen it. You might get some good recommendations from some North Jersey or NY girls there.

dechi

Bren, 

I was in the same boat as you, except you were further out than my 9 years when I had my 2nd diagnosis.  They couldn't decide what to call mine either, but finally settled on a local recurrence b/c it was the same type of cancer, in almost the same spot.  THis time I got Herceptin and rads, didn't the first time....Things change over the years, hopefully for the better!

Mirmirpanda

Hello ladies. I just found out yesterday that I am triple positive. All the oncologist said about it was its better than triple negative. Gonna have my surgery in a few weeks and discuss treatment. Nervous but hopeful! You might even say positive



It's snowing here today, I got to take my 4 month old out in the snow, she loved it!!! I hope everyone has a wonderful holiday!

Omaz

Welcome Mirmirpanda!  I like your avatar.

shore1

I had nipple reconstruction today & port out. Kinda hurts a lot more than I was expecting. Love when doctors say it won't hurt but you might feel "some discomfort" - that's when it usually does hurt! ha ha. Wondering what those who've had this reconstruction wore the first few weeks after the procedure? My PS said no bra or compression. I'm thinking cami's without the buit in bra and loose fitting clothes? Hate not wearing a bra for 2 weeks.

Omaz

shore1 - Congrats on the port out!

ArleneA

Welcome Mirmirpanda.  I'm guessing you'll end out with TCH as the treatment. 

Waitingforthenextstep

cqesq

            Do you want to try going to Sloan?  I had my surgery there, but chemo now in Staten Island.  I will definitely go back to consult about the next steps in my treatment.  I don't think the MO is chosen based on the pathology.  All MO's should be trained no matter what the pathology report.  I have a good one, but you would have to come to Staten Island.

camillegal

Welcome Mimirpanda--good avatar--but thst's not why u'r here. Well u've come to a great thread==these women are awesome with their knowledge.

Shire1 we know when they say some discomfort--get ready for pain and when they say u might have pain with this--u'r better off biting down on a bullet and let it explode in u'r mouth--that would be less painful,

Anonymous

Cami...great analogy! Made me laugh.



Shore, when they took out my port, I also had my nips done. The port area hurt worse I thought. Regarding a bra, I could wear one but had to keep the nipple protectors on.



I am not sure that nipple protectors keep them from flattening out. I think that is driven by skin, etc, as it takes a fair amount of time.

shore1

Fluff, I don't have protectors - just gauze things I'm supposed to cut holes in. And do I want them to flatten out? I would think them bumping into a protector, gauze or clotes might flatten them but what do I know.  I hope they turn out ok - I'm just trusting my PS who has done such an amazing job so far.

Anonymous

Shore, I just mean that I wondered if the shields were more to protect the stitches than to keep them from flattening. Mine stuck out like crazy for about three months and then they started to flatten out. I still have enough that I can't go bra less in a thin shirt, but can get by with a loose tshirt.



I don't think you want them to flatten...unless you have serious headlights, lol.



Mine are perfect for me. Some days I go bra less, some days I can't.

shore1

Fluff, gotcha. I don't want high headlights! Good to know they eventually flatten out.

Ella_117

Waitingforthenextstep.....

I also had my surgery at Sloan and was very happy.



Cqesq.... All oncologists should specialize in every pathology, including triple positive. If you go to the Memorial Sloan Kettering website you can view each MO and the the specific clinical trials for Her2 they have participated in.

I just saw my surgeon in NY on Friday and he said "triple positive is very good"

He even used the word "cure" for early stage and added that they are seeing very promising results for stage 4 as well!

LeeA

Welcome Mirmirpanda ~

That's a great signature line!  

Glad you got to enjoy some snow time with your little one!

Moonflwr912

Welcome, MMP! Choose an onc that takes time with you, answers questions, is available for questions or has a good system for after hours calls. Much love.

Jennt28

Had my ovarian cyst surgery this afternoon and it went great. I was called back into the op holding area at 3.15pm. Rolled into theatre at about 4pm and woke in post op at maybe 5.15? Felt good so was up and dressed and they let me leave at 6.30pm. Now at home and hubby went and got us pad thai which eased the mild nausea a bit.



3 small incisions from the laproscopic procedure, one of them they just opened a little of my abdo incision from my reconstruction a couple of months ago.



Turns out my "complex" cyst (2mm nodule in it) wasn't attached to the ovary but slightly to the fallopian tube. They were able to just remove the cyst without removing anything else! Surgeon says that there's pretty much zero chance of it being cancerous, but I'll only be happy when I see the histology report when it comes in.



Jenn

Moonflwr912

Jenny, sounds good, hoping hystology report says the same!

dancetrancer

Glad the surgery went well Jennt!