TRIPLE POSITIVE GROUP

camillegal

Moon this I know about--I'm sorry I had 5 yrs of that infusions , hospital stays it all sucks with no answers and u hate to leave the house--I't no fun and it 's exhausting--it's hard to explain--what meds are u taking? at least tell them u need the strongest. I still get it but not 3,4 times a week anymore so I'm grateful for that.

lago

ArleneA when my onc first diagnosed me she just told me to do exercise (no guidance). It started to get worse so I called my PS. He sent me to an LE MD who then sent me to PT. Just because someone is not LANA certified doesn't mean they aren't good. LANA certified gives you piece of mind that they have been trained properly but I know several friends that got to PT and they aren't LANA trained. Also have 2 friends going for acupuncture that say it's working well.

camillegal

lago

Ha ha let's make this a caption contest. Here's mine:

Shittin' Pretty

camillegal

Lago LOL----my cousin suggested this one to me to watch TV hhahaa

ashla

LOL!



When you're too pooped to scoot?

Camille,





Are your mds still trying to find a remedy for your pain?

camillegal

Ashla --yep-it's gotten funny tho I go to PT for my back , then that hurts my hernias, so they do something different, then that hurts my side so my PT is starting to flop hahaha--I try but I'm such a baby and I don't help them cuz I have always laughed when I'm in pain --it's just a reaction that I always had so I know they figure well it can't be that bad--my cousin and sister said stop laughing and even when they said that I said don't make me laugh it's hurting so bad and we all started laughing. My original Drs. took the time to really know me and I still remember I was into everything about 1 and 1/2 yrs and I called my Onc, and said I was in pain--she immediately gave me morphine-which I didn't want--so I was like what the hell are u giving me this for and she said cuz u never said u were in pain at all--and I was laughing but she and my BS knew I get silly and say even sentences that were kinda racy and laugh--but they knew what that meant. My newer Drs. just think oh it hurts u can live with this and I can as long as it's not cancer related it eases my mind. so I just do what I'm told. Sorry Ashla but u always getme going on some silly stuff.

ashla

Camille...



Maybe you should see a primary care physician and let him refer you to a specialist other than MO. I really don't believe you should be allowed to suffer if there is any way to alleviate your pain.

There are noninvasive things like inversion therapy that might move your organs to a pain free position. Don't settle in for needless pain,

ArleneA

Lago:  I don't care who I see but no one will take me without an order and my docs aren't calling back.  I'll just make an appointment and do it that way.  Thanks!

lago

Keep calling. No need to pay for an extra appointment. Be a squeaky wheel. When you keep calling they know the only way to get rid of you is if they call back. Or just show up at your doctors office when you know he's there and say you are supposed to pick up a script for PT… you left a message a few days ago.

ashla

"If you live with breast cancer, love someone with breast cancer or worry about your risk for breast cancer, you are part of a global community of women and men whose lives have been touched by the disease.



We want to hear from you. Over the coming weeks, The New York Times will be collecting stories from women and men around the world whose lives and experiences have been shaped by a breast cancer diagnosis."



http://well.blogs.nytimes.com/2013/08/29/share-your-breast-cancer-stories/?_r=1&

ArleneA

Lago:  Thanks.  I'm on their doorstep first thing Tuesday.  Guessing most will be closed on Monday!

ChickaD

OMG...you ladies are so funny lately...LOVE IT!

Pbrain

Cami, I needed that chair during chemo big time!!!!

Pbrain

Cami, I needed that chair during chemo big time!!!!

camillegal

Oh Ashla I've seen 2 specialists and according to them it's an invasive surgery and top to bottom type and it's hrs. but I can take anestesha (sp) so I think they'd rather me go to someone else amd I have to be put out tradition way cuz my organs have to be put out or they will stop working---I told u (I think) the County Coroner gave me the name of a good one--and I told the new Dr. either the Coronor wants me on his table with a big Y, or maybe he doesn't so This latest Dr. went over everything piece by piece--(I guess he thought I looked like I understood) and if I knew the coronor I had to be of some intelligence and showed me every angle of this whole mess and it's livable and surgery might be to risky for me---no one even wants to take my hernias out, That's why I'm in limbo--

OMG what a storm that coming now. 

lago

camillegal it just got very dark and I hear thunder in the background. You do have a severe weather warning out by you. At least I believe it's for your area. Watch out for the hail, 70mph winds and floods. Not sure if it will be as bad in Chicago but it's getting pretty scary looking out there.

moni731

Hi all! Not posting much these days, but still read and follow everyone. But now I have a question that maybe someone can help me with. My sister was dx'd last week with IDC, occult, but one enlarged node that was positive. We met with the surgeon today and were told to do a mastectomy with ALND. My sister does not want to do this (they have yet to do a MRI and Pet to even try and locate the tumor, dense breasts) and I asked the surgeon about removing only the positive node and any directly around it, if not possible to  get just the one. No other node looked suspicious on US. The surgeon was adamant that he would take at least 15 nodes. I countered that only 'positive on biopsy or suspicion' were being removed elsewhere, without decreasing outcome favorability. He said he had never heard this. I told him my surgeon had done precisely that, two years ago! He said he would like to read the studies if I can get them. Said I'd try. Anyway, the breast cancer navigator came in after and said it is "herd rational" and since they have always done it that way, that's what they do it. Kaiser. But she did say that she knew of two other surgeons that we more pro-breast conservation, and she would put through a referral. No mention of Neo-adjuvant treatment until I asked, or starting Tamoxifen (100% ER+) as the rest of the test are scheduled mid-September. I asked if she could meet with an oncologist before that time and she readily agreed to refer. I am just amazed that the lack of information that is withheld if you don't know what to ask! Also asked about genetic testing and she was referred even though our cancers are different. She said the early (I was 49, she's 51) diagnoses were enough to be out of statistical averages.

Anyway, if anyone has any info as to where I might find the lymph info, please respond. I know TonLee is really up on this, but also that she is not posting much. Thank you in advance for any and all help.

GrandmaV

Moni, From this site:

http://www.breastcancer.org/research-news/20110208 

lago

WTF is that surgeon talking about. They were talking about this back in the spring of 2010.

http://www.breastcancer.org/research-news/20130712-2

http://www.breastcancer.org/research-news/20110909

I would also check on the NCI site what the standard practice is these days. I'm not sure if it depends on tumor size. I know initally this pertained to those with smaller tumors but I haven't kept up with the research.

moni731

Thank you Lago and Grandma V for the quick responses! The problem is they have not found the tumor, yet. Hopefully the MRI or PET will. So, for now, they are going with occult. The surgeon's stand is that they can not do a SNB to identify the sentinel node. However, I did not do one either and my surgeon was okay with that, just took out the one that was positive (and the one right next to it).  It just all seems so old school to me. All info appreciated!

vballmom

Moni - second opinion needed for sure! I'm sorry she has joined the club. 

McKatherine

Heather - I had one palpable node that the oncs/surgeons said they could not feel after chemo. But it still had a measurable tumor at surgery - plus there were two more nodes with cancer cells in them that we didn't know about until then.

? We just have to trust that the chemo is doing its thing - and the up side is that we can see the results with the post-op pathology.

McKatherine

For those of you who had TEs and rads - did anyone have to have their prophylactic side emptied before rads? I had mine emptied yesterday and am dealing with a freaky bumpy side now. Hoping I can hide it with fluffy tops this weekend!

lago

McKatherine I did not but I think I would get a bra and add my own stuffing. Not sure if this would help. I used these the first several months after nipple recon before they shrunk a bit.

Click on image to go to page

lago

BTW did I mention I'm celebrating 3 years NED. 3 years ago I had my BMX. I'm celebrating by playing the lottery and posting all over facebook and pinterest to get people to donate. I'm walking and leading a team again this year.

SpecialK

moni - keep in mind that these references regarding whether or not to do ALND or rads to the axilla are in cases with easily located and palpable breast masses.  Occult BC is a different situation, with less clear cut options.  Here is a link to another thread on this site with posts on this subject:

http://community.breastcancer.org/forum/5/topic/737731

http://community.breastcancer.org/forum/137/topic/799403?page=1#idx_23

http://community.breastcancer.org/forum/67/topic/782556

http://www.ncbi.nlm.nih.gov/pubmed/12183889

Bren58

woohoo lago!!! 3 years is awesome!

Eileenohio

Lago-   Kudo's for 3 yrs NED-praying for 30 more...  Hugs  Eileen

NickyJ

Congratulations Iago! 3 years is awesome! May you have many, many more.



Nicky