TRIPLE POSITIVE GROUP
Comments
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Pbrain, I am so glad that you are getting out of the hospital! I hope you are able to enjoy Thanksgiving.
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I am feeling better this morning. Not nearly as painful to breathe as it was yesterday, I guess that means it is healing. No bra today, it feels like a tight rubber band.
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Waiting - you said the last thing you want to do is call him, and I understand that because I never like to "bug" doctors either but in your case, you are having a really rough time of it and if there's anything that could help make you feel better throughout this - then it really is his job as your oncologist to tweak your meds and help you weather this with as much strength as possible. I'm just repeating what those with much more knowledge/experience are saying because it made my heart hurt when I read the words "the last thing I want to do is call him."
Big hugs from afar for today, tomorrow and beyond.
Rozem - thanks so much for your input! Last night I was looking through the old pages of this thread and took several screenshots of your earlier posts (about a year ago or so) regarding lymphatic invasion. I'm also going to take a screenshot of your latest post.
Angie - do you recall if your LVI was indicated on your biopsy report or the pathology report post-surgery? Or both? I hope things are going okay for you this week. I've been thinking about you and wondering how you're doing.
Jennt28 - yes, I knew you worked in cancer research - either from a recent post or perhaps I saw it in the archives of this thread. I'm so glad you're here, well, not glad you have to be here because of cancer but you know what I mean...
This - "ie: a good MO is like a conductor while a BS or a RO are like soloists in the orchestra" is perfect. I'm sending it to my husband right now. That's the vibe I've always gotten from reading the posts on this thread since late October and it's one reason I started getting so panicky the night before surgery when I realized I didn't even have anything in place for an oncologist going into the future (i.e. post-surgery). This thread has really helped me understand the different physicians involved in this cancer experience (borrowing your word for it) and the staging of the treatments, i.e. surgery/chemo/rads/hormonal or chemo/surgery/rads/hormonal. I truly was a cancer virgin when I was diagnosed on October 9. In many ways, I still am but with every passing day I realize that I better stay on top of this - especially while I'm still feeling good.
dechi - Happy Thanksgiving to you as well.
PBrain - I'm so glad you checked in and hoping you're feeling more like your not-so-old self!
Fluffqueen, MsTori and Omaz - my MO is gathering up all the bits and pieces and he's going to have the pathologist at his facility review everything. Apparently, the pathologist used to be at City of Hope so hopefully he/she can look at everything and help the oncologist decide on the best course of treatment.
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Bren58, so glad you're feeling so much better this morning!
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)
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LeeA - it is important to understand that not all docs put the same emphasis on LVI. LVI may be an indicator of node involvement, but not always. It is just as mysterious as why some women have a tiny tumor and positive nodes and other women have a large tumor and no nodes. Also important to note - pathology, in some instances, is subjective and discretionary depending on the pathologist. In other words, two pathologists may not see the same thing. I once had some cysts aspirated and had two pathologists in the room looking at the slides of fluid, each with a microscope. It was very interesting because it was real-time and also because they had two pathologists because they wanted consensus. The purpose of a sentinel node biopsy is to determine if there is an issue with nodes - as a way to provide more information. It is done to get this information while not disturbing the remainder of nodes. Would you still feel this way if you had discussed the LVI and taking nodes beforehand, he took more axillary nodes, they were clear, but you developed lymphedema right after surgery? Unfortunately, this is often the nature of BC treatment decisions - I think most of us have run into something like this in the course of our treatment. On the subject of delay - I had ALND 6 weeks after BMX, then skin healing issues caused 3 more surgeries so it was another 9 weeks until I started chemo - don't stress too much. You would still fall into the acceptable window for starting chemo.
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Pbrain- yay! Good to hear from you and that your getting discharged from hospital! Pray you can enjoy the Holiday.
Jenn- I agree. I have a spot under my left armpit. A bump. I had the ALND and its right below my scar. It may be scar tissue, but I am waiting till Friday to point it out to my MO. My BS likes to cut. Humph!
Waiting- I have my MO's number and have used it 3 times already. All after my first chemo. That's what they are there for. Bother him! Emmend is top of the line I believe. And the last they want to give because of cost. Humph! Ask for it! I'm grateful that my MO pulled out the big guns from the get go.0 -
Waiting,
I to had severe nausea/vomiting and was given the works..Emend/Kytril Iv and sent home on the pill form and it lasts 12hrs/scapolimine patch and decatron..they all helped was still a little quizzy but no more projecting ..ask for help that's what they are there for..0 -
Thanks, SpecialK.
I obviously need to be reined in and I just read through your post twice, just to let it all sink in.
Of course, everything would have been much simpler if both sentinel nodes had been negative but even then, it might not have meant that ALL axillary nodes were clear (I keep thinking about that 6mm sneaky pete of a macromet that you had).
And from what I understand after talking to him yesterday, when they do an ALND they don't remove all lymph nodes so then we're back to the same thing once again - what's to say there isn't cancer in the ones that are not removed.
On occasion I hear a popping in my right hip (probably related to my left hip which has always been a problem). Now, I'm thinking "oh no, it's cancer," but I've been hearing this popping on and off for over a year - but of course now, the specter of cancer is lurking everywhere. When we empty those drains I'm thinking "are there cancer cells in there?"
Again, thanks for your perspective on this. I really do appreciate it (and am happy to see you back again!).
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LeeA-- The LVI was on my path report.
And thanks for thinking of me I'm doing ok A little nervous for the holiday you may know have to bite the tongue at times to family and just get along.
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Hi. I'm dropping in because, until today, I never understood how rare my combo of breast cancer factors was.
I found out by asking my rad onc what my chances of recurrence were. And I found out they had NEVER seen somebody with ILC Triple Positive before.
Which freaked me out. There is so little info for us ILC Triple Positive ladies and I feel like I'm flying blind. Calling all ladies with ILC HER2NEU+....
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kim - suzieQ60 is a triple pos ILC gal - she posts often but if you have some specific questions you might ask her.
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And KimbytheSea, powermom is also an ILC triple positive as well. Just the other day she and suzieQ60 were talking about the rarity and percentages.
Given what your rad onc said I guess it's pretty amazing that we get to have three of you all together on this thread!
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KimbytheSea - here's a link to the page with their conversation about ILC (in case you haven't seen it):
http://community.breastcancer.org/topic_post?forum_id=80&id=764183&page=429
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Solt - I found out from a plebotomist friend of mine that they won't use ports for blood draws, etc... unless your physician specifically orders it, so maybe talk to your doc about using for the other things as well.
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Even if the doc ok's the port use, a LOT of nurses can't access it. Ditto for lab techs . My worst poke day, was 10 tries. Lab tried twice. Onc nurse then got it on second try. That's four pokes. Later that night I had to go to the ER and they poked me SIX times and I ended up with an IV! LOL ouch! An onc nurse came in the hospital the next day to hook me.up and got it on the first try. So even if they want to use it, it isn't always easy! I just remember that as one of my bad days. LOL.
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Hi Waitingforthenextstep - try some Ginger tea and if you can get some fresh ginger grate some of it into the tea for nausea. It helped me when I had AD/C
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Try the ginger capsules and take them daily. It helped me. But you have to take them all during tx, not just when feeling bad. Much love.
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Hi Waiting - I think that you always get rads if you have a lumpectomy, but with MX there are conditions before they give you rads. The studies have shown that Lump+rads is equal to MX in stopping recurrence. If you have lymph involvement or large tumors and have MX, then you may need rads too.
Also - the studies show, at least at this time, that if you do not have mets, that 1 year is the optimum for herceptin.
Since I seem to be behind on this forum, somebody has probably answered your questions.
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My biopsy and surgery pathology both said Lymphyovascular invasion.
I had two minor surgeries, as well as many blood draws - and no one wanted to use the port, first-most places don't have the connectors to hook up an IV to the port, they are afraid they will mess it up for the chemo nurses, they don't have a clue how to access it, and even at my chemo center, unless the doctor ordered it, they would not use it for draws. I guess it's better to get stuck, then to have someone without the proper supplies, knowledge and abilities to try it .
LeeA - I think that I missed something over the last few days - are you going to have to have ALND? And did I understand that they aren't sure how to treat it yet?
Happy Thanksgiving!
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Hi LindaKR, how are you tonight? I hope you have a good Thanksgiving tomorrow.
I spoke with my second opinion/breast surgeon/friend this afternoon. She's the one who was able to get me in with the medical oncologist who has a closed practice.
She says I should relax
until we get the opinion of the MO's pathologist who should have everything in hand now via Fed Ex or hand delivery (we took slides there last night). He'll be reviewing everying including all the slides/material from the tumor pathology report as well as the slides from the initial biopsy I have an appointment with her (the second opinion/breast surgeon friend) next week. In the meantime, she is contacting some of her colleagues about what they think regarding the ALND and/or rads as it relates to my particular tumor (grade/size/one micromet node, etc.).
I feel so much better after talking to her this afternoon.
Re: the lymphatic invasion - she says we should wait and see what the MO's pathologist says based on the actual tumor pathology. As it stands now, the current tumor pathology report indicates no lymphatic invasion and no lymphovascular invastion.
The plan is that this pathologist's opinion will help solidify the plan moving forward.
So, I have, indeed, settled down considerably - which is a good thing because my blood pressure seems to have become very sensitive to stress since finding out I have BC.
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)
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LeeA - thanks, it all makes sense, speed reading was not getting me the whole picture.
Happy Thanksgiving!
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Kimby - I answered you on the Aussie thread - thanks for saying hello.
I remembered the other lady - Sweetbean is also ILC +++
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Kimby - I just looked at your profile - is there a reason you are not having chemo and herceptin? It's standard treatment here and seems to be over there.
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On this Thanksgiving day..indeed everyday...I am thankful for my wise, brave, beautiful, wonderful friends in these forums! You have all made this 'annus horribilis' much easier to bear with your wise advice and friendship.
What a difference a year makes!
For those of you who follow in our steps.....this too shall pass.0 -
Good morning, ashla.
I just got to the point in the thread where you showed up for the first time (I'm in January 2012 right now). Also, rozem recently arrived. Reading the thread in its entirety is not only informative but also gives me hope as I see how far everyone has come in the process. It really is like reading a book or watching a mini-series.
Thanks to you and so many others for sticking around for those of us just entering the fray.
Happy Thanksgiving to you and everyone else, Triple Positive and beyond.
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Port, Blood draws, etc. I would go to the triage at the chemo floor to get my blood draws or port access before liver scan (needed a blood draw for that too). For my colonoscopy the nurse was allowed to use my port but not give me an IV in my foot. All other surgeries they went through my foot.
Lee this begining is really the worst part. It really does get better eventually.
Happy Thanksgiving everyone. My cooking was finally completed at 5:30 yesterday. Went out for a drink with a friend aftwards. So now to lug the marinated mushrooms, sweet potato hummas, eggplant with roasted red pepper and tomato, raw veggies, crackers for 14+ people to my BIL/SIL's house.
^ The turkey my husband made in 2010 after my 3rd TX. Stuffing tasted like shit that year because of chemo but everything else was pretty good.
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sol - I had my heart monitored with echos, never had a muga. Could you get echos instead? You just lay on a table and they press a wand to your chest for little while. Super easy.
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sol - me too - Echo's are easy!
I've wondered why some docs prefere echo's and others MUGA's?
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I had echos too - mugas were not covered by my insurance. Since it was still 60% at last herceptin, my MO said I don't need another unless I experience some shortness of breath, etc. Does that sound right?
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I wish everyone a blessed Thanksgiving. Words are not enough to express my thanks to all of you for your support and guidance. All of you are amazing, and today and everyday, I am truly thankful for each of you.
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Happy Thanksgiving to all. I believe there is a technical difference between MUGAs and Echos but MUGA is the gold standard. Maybe LeeA could tell us what page its on when she gets there. LOL. I've had both, they ordered an echo to see other things in the heart the MUGA does not show. And perhaps that is the difference right there! LOL
I am truly grateful to all on these boards for the help over the last year. A year really makes a difference. So, if you are still in the middle of this, it does get better!
Happy Thanksgiving, have a great Feast!
Much love to all,
Enjoy your roast Beast!
Much love to all. LOL0
