TRIPLE POSITIVE GROUP
Comments
-
On phone...sorry for typos...who can type on these tiny things?!
BREN, yes! I had a lung collapse due to port insertion. It was bad enough they kept me for 3 days...but FIRST they cut a two inch incision between my lower ribs, then fished a tube up to the top of the lung ON THE INSIDE! VERY PAINFUL! I walked around with that tube dripping blood for 3 long days. Horrible.
And I was awake for that mess.
At least your home! Hang in there.
More next week!
t
0 -
Hello all, I can't remember if I jumped in this thread yet and introduced myself or not but I have been following it for a couple weeks (mostly while medicated with narcotics which is why I can't remember lol!) LeeA and I have been communicating in the Nov surgery thread, but now that my surgeries are behind me I am starting to drift over into other threads for my next phase of treatment. I am highly triple positive on all 3 counts, also high Ki67. My chemo starts in two weeks, had my port placed today. I'm very grateful for these boards and learning from experiences of others who have gone before me in this journey. The knowledge I've gained has definitely better prepared me for what to ask and understand at all the medical appointments I've had this last month. Looking forward to continue learning about BC treatment, sharing with others and connecting with you all!
Waiting-Herceptin for 1 year has been found to be the most effective. There is no significant difference between doing it for 1 vs. 2 years. There IS a statistical difference for doing it 6 months vs. 1 year, in favor of the 1 year. This link was helpful for me understanding Herceptin treatment and also differences between AC/TH and TCH treatments. http://www.uptodate.com/contents/adjuvant-medical-therapy-for-her2-positive-breast-cancer It's a lot of technical medical jargon, but hopefully it helps.
Bren-I'm so sorry to hear about your port experience and that you had to go through that! I probably would have made the choice to come home too, I hope you are resting well and pain is under control. My port went in today too. Do you have a chemo start date yet?
0 -
In a restaurant but wanted to say how sorry I am to hear your day went the way it did, bren58.
I also wanted to say welcome to steiner!
I had my appointment but the details are not iPhone "compressible" so I'll just say that at the moment I'm eating hot and sour soup with tofu and soy sauce and saying the heck with this cancer crap - at least for the next hour!0 -
lago, first let me say thank you for posting that yummy looking recipe. I am definitely making that one! And yes the surgeon said the risk was geater for me because I am small and thin.
Ton lee - I am sorry that the lung thing happened to you too. The surgeon did say that if it got worse they would have to do the procedure they did on you. So I am praying that my breathing will stay strong.
Steiner18 - Welcome and I'm glad your port experience was better than mine. Yes I have my first tx of TCH set up for 11/29. Not sure if I will join the November chemo girls or December chemo girls on their forum.
My breathing is not as painful as it was this afternoon, but I think that is probably because of the drugs. Surgeon is on call all night and said to call his beeper if things get worse or I have questions. I am hoping to be able to sleep some tonight.
Thank you all for your support and virtual hugs!
0 -
Bren - I had a lung collapse, too. Spent two nights in the hospital on oxygen and major pain killers...it really is dang painful and scary - I feel for ya!!!! It does improve quickly though - hang in there!
0 -
Meglove - hoping you hear the right news/best news soon. There are so many benign lump varieties and I've read so many accounts right here at BCO of scares that turn out to be benign. Cysts, fat necrosis, fibroadenoma-like structures. Something like 85% of breast lumps are benign so the odds are in your favor!
And where IS PBrain?0 -
Ok, got a question. Any of you watching Parenthood and the cancer storyline? I never watched this show, and after watching a lot of other shows with the BC storyline, I didn't.have real high hopes it was actually pretty good, the time she found out she had cancer, they did the lumpectomy, and the time she then found out it was Her2 and she needed chemo. All very well done. It ended last week with her first tx. Also good.
Alas
Then there was this week. She volunteers to babysit someone's handicapped kid. Things are kinda rough, and of course she gets sick. She is throwing up. So does she think to call her onc? Of course not! No, her husband goes to his brothers house and gets (forgive me for me for showing my age and uncoolness) her a doobie. She smokes it and falls asleep. I was so hoping for better. But I had to laugh, cause I have never seen that twist on a bc story line. LOL. But I guess they couldn't show her having diarrhea or constpation, puke is so much easier. I actually did puke my first time, but you better believe I called my onc and got something to help! so, I suppose shell get caught smoking and driving or something stupid. I feel stupid for watching...... I really got drawn in. Sigh.0 -
Hi Moonflwer -
I rarely watch anything but CNN but your description intrigued me enough to see what network it's on. Maybe I'll tune in one of these days.
And ha ha...
You're right.
I don't recall many constipation/diarrhea scenes in television shows back when I watched them but maybe things have changed since The Dick Van Dyke Show (hehe).
I'm all worked up from a doctor's appointment today with even more bad news that materialized from a report I had NEVER BEEN MADE PRIVY TO AND DIDN'T EVEN KNOW EXISTED but I'm going to wash off this makeup and try to get some sleep and be like Scarlett - i.e. "I'll think about it tomorrow!"
Have a good night, you night owl, you!
Signed,
West Coast Night Owl
0 -
Hi soltantio -
I'm trying to figure out the simplest way to word this as it's rather complicated to convey.
Dx 10/9/2012, IDC, 2cm, Stage IIb, Grade 3, 1/3 nodes, ER+/PR+, HER2+Surgery 11/07/2012 Mastectomy (Left); Prophylactic Mastectomy (Right)Surgery 11/07/2012 Reconstruction: Tissue expander placement (Both)
0 -
Where was the lymphatic invasion ie: where was the biopsy taken from? If it is from your breast biopsy why would that change whether you have an ALND or not? And, you are correct that the usual "final word" would be from the final tumour/mastectomy and SNB pathology...
Jenn0 -
Hi Jenn, I'm glad you're here. I guess it's about 9:00 pm Wednesday where you are.
It's 2:10 a.m. and here I sit wide awake trying to figure out what to make of this.
To answer your questions - the biopsy was performed on October 4, 2012. It was an ultrasound assisted vacuum biopsy on the tumor/solid mass in the left breast which is where the cancer was located. The right breast, which was removed as a prophylactic measure on November 7 as well has never shown any sign of cancer.
So yes, it is shown on a report from the BS's own pathology department (the one associated with his center) based on the slides from my original biopsy.
Apparently the ALND will address any additional lymph node involvement which is now even more of a concern considering this sudden mention of lymphatic invasion (from his pathology department).
Thanks for confirming what I thought was the importance of the final pathology report on the tumor itself.
0 -
One thing I should add is that the final tumor pathology report shows staging as being IIb with "lymphatic invasion: not seen."
Editing to add a screen shot of that portion of the final tumor pathology report:
0 -
LeeA - I am so sorry that you have to deal with this new information. It's hard when we think we know what our plan of action/attack is going to be and then be thrown for a loop by more bad news. I hope you were able to get some sleep last night.
Have any of your docs suggested an axilla MRI?
0 -
Hi Bren58 -
I hope you're feeling better this morning! What a rough day you had of it yesterday.
I've only gotten about an hour's worth of sleep tonight. It's almost 5:00 am so I still might get a few hours in.
I had an MRI at the beginning of all this and I think they could see the axillae pretty well as they repeatedly said that from what they had observed on both the MRI and ultrasound - there was no lymph node involvement.
I just read an interesting post in the archives. I took a screenshot of it in fact.
A poster named NancyJill said the following to another poster:
Try to stay patient (it's hard) until the final pathology comes in after surgery, and an MO evaluates the results. I learned the hard way the surgeon was not the best person to believe about what the final path said. She was just wrong (but what a great surgeon)!
Anyway, today is a new day so I guess it's time to put on the happy face and do the cancer dance all over again...
Hope your day goes well! I'll be thinking about you...
0 -
LeeA - I might have missed something but it sounded like you were going to get another pathologist to read the slides from the surgery, is that right? I think at this point that would be a good idea.
0 -
LeeA They place more importance on node status than they do LVI. Matter a fact positive nodes is usually associated with LVI (although not always). The postive node is what is the factor that your treatment will be based on not the LVI.
and don't get so caught up in stage. I know I did at the begining but the reality is we are still early stage. /with treatment odds are really good that treatement will get all this. I'm a stage IIB and I'm 2+ years NED… and plan to stay that way.
0 -
Good Morning all! This board never sleeps. I'm trying to catch up. Going to get my labs drawn today, for my 3rd tx on Friday.
Welcome Steiner- I was going on the October chemo board, but just to much for me to handle and since I started here first and have gained so much knowledge and support on chemo and continue to do so from these ladies, I call this home and stay here. Sometimes I still pop over to Oct board occasionally to say hi. This is a great place to be and we are all at different stages.
Bren- hope your feeling better today and on the mend.
LeeA- that all seems odd. To see not involved, then to see involved. Any way to talk with the original pathologist?0 -
Hey ms tori and sol. Thanks for asking about me. I'm doing much better and am getting discharged in about an hour. My oncologist told me that moving forward I will be getting chemo lite (I have to find out what that is). Man was I sick! A few days ago I was sobbing on the shoulder of a breast cancer survivor in the hospital gift shop :-(
0 -
LeeA..I actually called the pathologist, but it was right after my first biopsy. He was stunned as no one had called him before. He had to go on What was in the biopsy which for that one didn't get to the actual tumor.
It wasnt until I switched docs that they found the idc.0 -
Pbrain - good to hear you are on the mend and dr has a plan for going forward :-)
LeeA - I don't know if you've picked up that I work in cancer research (urogenital and prostate cancers though) and I can say that MOs are generally the ones that are the most knowledgeable about potential long term outcomes for people because they are usually the most involved in research. BSs are very rarely involved in research except in technique stuff. I love my BS but I would always go with my MOs advice for treatment as they have a better overview of the treatments combined as a whole plan ie: a good MO is like a conductor while a BS or a RO are like soloists in the orchestra.
Jenn0 -
I posted earlier but it didn't print. Igh
Well in short Lee u certainly have done u'r homework--u have a clear handle of what's happening.
Sol u sound better...
Bren sorry u;r going thru thiw
Welcome all the newcomers u are in a perfect place for questions and answers too. Sorry u have to be here.
Pbrain I asked bout u, now I read u'r going home---YYYAAYYY
0 -
Jane , So sorry that you were so sick ,glad you are feeling better. Happy Thanksgiving,I hope you are able to spend the day with family & friends. Breaks my heart that you were so miserable and alone. Many hugs..
0 -
Sol, glad you are better.
LeeA, that would certainly get me upset. I would just make sure my MO got all the reports. Hang in there.
Jane, so glad you get to go home. Life in the hospital is not fun. Hope you get to go to someone's home for Thanksgiving!
Oops, sorry for not announcing spoiler alert! I was upset at the tv. Pretty silly I know. LOL
Much love to all. Gotta get some supplies for pies for baking for tomorrow at my DD.0 -
Hey all,
Six days out from last A/C treatment, and still nauseous and lost about 50% of my strength. We are going full speed getting ready for tomorrow. I want to be able to eat my dinner and maybe even enjoy it. I am so anxious about my next MO visit. He just doesnt seem to be listening when I try to tell him about the SE's, or just doesnt take it seriously. The anti-nausea meds dont seem to help me. The last thing I want is to call him. Cant wait until next week to feel a little bit better. Feel better all.
0 -
I had no nodes Involved but LVI was seen. My doc told me that is just one more reason I got chemo.
0 -
Waiting, so sorry you are having SEs. I didn't have the same kind of tx as you, buty worst days were 5-10 after tx for me. Hope you can enjoy some dinner tomorrow. For me the radiate to get down were the white things like mashed potatoes, etc. Much love hope you feel better.
0 -
Watingforthenextstep this is unacceptable. There are other nausea meds. Some oncs don't prescribe them because they are too $$… but you must demand that your onc prescribe something else. It is less common to suffer from nausea these days… granted there are some where nothing works but you haven't tried everything. I would also tell your onc that he must listen to you. Remember you are paying to see him, not the other way around.
FYI the stuffing 2 years ago tasted aweful because my taste change incuded nuts and pepper. Anything with either tasted bitter.
0 -
leeA LVI was never mentioned by any of my oncs when i started treatment until i looked at my path report that stated "suspicious" for LVI. My second opinion re-tested my sample and it came back positive for LVI. My MO from Dana Farber said that having LVI on her2 positive tumors is quite common and not to freak over it. ? not sure what that means but i think because chemo is a given with her2 that does not play into the decision. If you are her2 neg that may. LVI was a factor for radiation for me but i know that is controversial as some RO's don't take that into consideration
0 -
Happy Thanksgiving everybody!
0
