TRIPLE POSITIVE GROUP
Comments
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I'm not new on the boards or chat, but I don't think I have ever been on this thread--Let me just explain I' not new to cancer I was dx in May of 2007 and I chose not to ask questions or listen much--I coped very well, but now I do have some questions . I am done with evrrything and I'm on aromasin but I remember some things that I thought was good---My onc. told me I wad triple positive and of course I said Oh that's wonderful-y oce rolled her eyes and I really didn't listen to the rest--I have honed denial in my life LOL As I have been reading over the last few months being positive doesn't sound like a positive thing (which is misleading) Anyway Question-----what does it really mean? Well somehow I ended up a Stage 4 (I think cuz of where nodes were found?) I had 38 nodes out--My dgtr asked (Kids) and they were taken from different areas that's why I was Stage 4--Now I don't even know for sure--My dgtr told me cuz I was fine and happy being positive--Anyway I'm not a negstive person so that's why to me it was great. If not one wants to answer I do understand cuz I' a total chemobrain person and my friends don't notice much difference--so I'm as my Drs. put it a little crazy. I had yrs of chemo and of course herceptin and I am NED now---still in and out of hospitals for low electrlytes and some odd SE that I still have nad y Drs. are funny cuz they put me in 2% group of people all this stuff happens to. Whatever--I'm still here so they're doing their job. All of u are a wealth of information and I thought I'd ask--I' sorry this is so long and boring but I thought maybe u needed info on this in order to answer openly----Btw I'm a lousy typist --I' sure there is no need to tell u--u can see that. Thank you0
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camillegal I think if I had mets I would want to be triple positive. Why? because this gives you a bunch of different guns to fight off the cancer. Also it seems the newest drugs they come out with seem to be for us HER2+ gals. Even many of the vaccines seem to be for HER2+.
In general though being hormone + many times means you have a slow growing cancer AND it can be treated with hormone therapy. Granted being HER2+ typically means you have a fast growing cancer but in that case Herceptin (and any of those new drugs they are testing) works on the HER2 part and the chemo works best on faster growing cancers.
It's all very complicated and the oncs don't know so much. Hell if they did know then maybe we'd have a cure.
Oh and I know many HER2+ gals that get mets and don't have any nodes. HER2+ is crazy like that. But yes your risk increases if you have node invasion. Risk also goes up if you have a larger tumor especially over 5cm.
I know that's still vague but as I think I've said to you before (or maybe not) cancer seems to be having the glass 1/2 full and 1/2 empty. We are always looking at both ends of the glass.
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2 caltrate gummies have 35 cals, 800IU D3, 500mg calcium, 230mg phosphorous
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Kayb u always help me, one more thing does + mean u'r chances for it returning are easier or less than - Does that make sense???
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Oh kayb I'm glad u know me from other threads and mygoofy questions like I was just DX's LOL--U'r always so nice to me I'm so in the dark but I do share alot with my sister cuz she's kind of like me--she asks more questions but we don't understand the answers too. LOL we're 4 months apart with our Stage IV dx--e first, she got jealous of course---but toally different types--which that I didnt know till her, LOL. We used to be 2 intelligent females. Now we're defamaled and not so intelligent.
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Kayb u are easily impressed by the menutia of my everyday life. LOL it must be thst positive stage that we talk about hahaha. U r so darling, then u turn into this medical encyclepedia of information and I think I'm talking to a Dr.and u always take time for me---Thank you.
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Soltantio there is a lot of stuff we don't know for sure. The only scan I get is on my liver and that's because they saw something. I had scans done before surgery/chemo because there was a lot of time so my BS order them. We all pretty sure the something is just cysts. One actually went away. But I'm not going to worry about mets unless I have a symptom. You don't worry about a broken arm unless it hurts, right.
Kayb I think what Soltantio might be referring to is this article. At the end it states that late recurrences tended to be those that are less aggressive, lower grade. When you think about it, it does make sense. Note that this article seems to lump all biologies into one. The seem to be talking more about tumor size and grade and did not include newer treatments like Hercepin and Aromatase inhibitors.
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soltantio--u'r answer to me was hysterical I'm still laughing. OH WELL hahaha
And aas u continued with u'r conversation about this subject I was of course lost, as usual, I just don't understand this world that I was thrust into, maybe for me it's best cuz I read Blah, blah, blah--no matter what horror is being talked about. And I was really an intelligent woman, which I keep on reminding all of u, but my brain has been crumbling so I just read and try to get something out of it.
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tonlee - as omaz said above, the Caltrate gummies are 35 cals for 2, I consider them dessert. I am thinking that I may try what you are using for muscle retention - I feel like I am working out and not building as I have in the past - what are your thoughts? I feel like I am coming from such a defecit. Also, I was out driving today and saw an election sign for TomLee, for a second I thought you were coming to Florida and running for Senate, lol!
soltantio - here is a link for the Her2+ vaccine trial:
http://clinicaltrials.gov/show/NCT00524277
While fluff and I are in the same trial I believe that we are sorted to opposite arms based on our histopathology (tissue typing like for an organ transplant). She is in the AE37 arm, while I am sorted to the GP2 arm.
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Kayb I was just oing to say that plus I loved the way she explained everything and said she didn't read it. hahaha
Soltantio--funny stuff.
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SK,
I have friends in the Villages...they all went to see Ryan while he was there...that's as close to politics as I've been this election...
Yes, I think if you are trying to preserve your muscle mass gluatimine and arginine are the two things you want to buy in powder form (Juven is easier, but again can be expensive and has calories). The rest of the ingredients really are more about delivery.....
If you want to build muscle mass.....I'd throw a scoop of high quality protein powder in with juven or the glutamin and arg. post-workout (within an hour)...and while trying to re-build muscle mass...try to consume 100g (give or take) of protein a day. I recommend Fage yogurt.
I mix 1 cup Fage 0%
2 TBS PB2 (peanut butter powder that has no trans fats and is AWESOME!!!)
3 splenda (or to taste)
It's almost like eating a bowl of peanut butter. The Fage is only 130 calories with 23, that's right TWENTY-THREE grams of protein.
I eat at least two cups a day (usually for snack). Then pick up the rest of my protein at meals.
I should throw this out there....if you are on any type of blood thinners, glutamine can interfere with their efficacy.
If you decide to do this, let me know!
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Never heard of PB2, looks interesting, found it on Amazon
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TonLee I never hear of Fage Yogurt or PB2 where do u buy this in an organic store>
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soltantio do we really know if the tumor is slow growing without the HER2+ in our cases? There are women that are ER/PR+ that are grade 3.
camillegal Fage yogurt is Greek yogurt. We have it here in Chicago as well.
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I just tried the fage cherry flavor yesterday (Target) and it was delicious!
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I have made yogurt Popsicles using plain Fage. 1 container of sage blended with 2 large oranges. My husband likes pulp so I blend all but 1/2 of an orange. At the end I pulse in that last 1/2 a few times. Put in those plastic Popsicle containers and freeze.
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Reading back. Wow, great information tonight. Guess, I need to get with the program and the gummies....Yum and the Fage yogurt.
I joined a running club to force myself to get back into it and one of our coaches who does muscular/skel adjustments asked me what my biggest issue is getting back into running and I said, my breathing. After our run (walk for me since I still have my stitches from the deporting) she worked on my diaphram and WOW, I'm amazed how well I can breath.
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Thanks Lago--and the PB2--Are these 2 things in regular grocery stores? This sounds so good.
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camillegal I'm sure you can find oranges in the grocery store. Any regular Greek yogurt will work just make sure it's unflavored. I also use the low fat kind. The orange gives it flavor. I'm sure it would work with any plain yogurt but Greek yogurt is supposed to be really good for you.
soltantio for all you know your onc might keep you on hormone therapy for 10 years instead of 5. Thing is some day all our lives will end. That's part of life. There's a good chance given your diagnosis that it won't be breast cancer that ends it but it will be something. Hopefully just old age. You are still in treatment and still thinking about this. It's such a shock. I don't think about recurrence that much now because I feel great. I look pretty damn good too. Once you move on from treatment and feel better you'll see what I mean.
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What's to understand nothing---my mom had dblmast. 56 yrs ago--no stage-no size, grade + or-?? No chemo rads or meds--never came back
My sister is negative, her dgtr is negative and I;m positive---my niece is Stage 3--my sister bone mets--and me---so is there any rhyme or reason--That's why I get so confused--it is not one size fits all--it's all mish-mash---so once it attscks u never know whst's next and no one can say anything different--To me it's not like any other operation--u take a gallbladder out and it's gone--u take cancer out but no one knows where it can hide for as long as it chooses and even chemo, rads can't guarantee u. Altho I'm glad I had all of them. That's what it all means to me--statistics-I don't even consider cuz I don't how many women or when it was done Or they might have had women that were basically very healthy so they might have a better chance, ages make a big difference too, diets, excercizes lots of variables in statistics --so numbers don't impress me nor do years of NED it's wonderful with NED, but that doesn't mean much except this minute u don't have the beast showing his face.Sorry I sound so mean, but I think what it does to so many people and my whole family and I get so angry.
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Soltantio- my diagnosis was similar to yours (high er/pr grade 2) and I am in the beginning stages also. I totally understand how you are feeling. But, Lago and other ladies are right. I know it will get better with time. We will feel stronger and feel in control of our lives again...and look better than ever!
It's just hard when your knee deep in it:/
I know this has probably been covered a million times on here. But, I looked back and I could not find the topic...and I really want answers from triple positive ladies...
If given the choice between lumpectomy and mastectomy...how did you make that decision?
I have to decide this week. My dr's said it is my choice. But,I know that they lean towards lumpectomy.
It is just a huge decision to make alone.
In the beginning I was all for a madtectomy. Now I am unsure.
I know it is a personal decision. I have studied the facts and statistics...but, I need personal experience and thought process.
Thank you again,
Jennifer0 -
Jennifer I really don't know what to say it sounds like u'r DX will have a good ending for u--But to advise what u'r asking it's so personal.
Ask u'rself what decision can u live with? What do u feel would benefit u in this whole picture of cancer, not just today. It may never return no matter what decision u make. What is u'r age, r u married to talk this over with a partner. These are all factors in u'r choice. Plus more, so it's hard to decide what is best--I'm sorry I can;t be of more help. Keep us posted and there will be more to come on to make things clearer for u.
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Camillegal-thank you for replying. You did help, you gave me things to ask myself. I know it is a hard question. I feel bad even asking since it is a personal decision. But, it is such a huge decision to make alone (husband will not give input...says its my body) and I feel that the dr's just give you the basic facts and leave it all up to you. But, we all know there is so much more to this decision that they can't cover with us. Self esteem, emotion, the real story on recovery, expectations, etc. Drs lean toward lumpectomy...but, support my decision.
I am leaning towards mastectomy...now if I can just figure out how to juggle the toddlers during recovery:)
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Jennifer I felt u had young children-hmmmm--Do u have a mom or sister that can help--or cousin or good friend? Now if u do thst's a big part too. And of course u'r husband, but chances are he's working so u need more help than him. But see who can help u and don't make u'r decision based on that, just get thst organized while u'r making u'r decision. That will take some stress off of u.
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Jennifer...I made my decision immediately, and have never second guessed it. I had really dense breasts. It took three biopsies to find the tumor. When I learned I was triple positive, and read up on what that meant, I made the decision for bilateral. I know the length of time a person lives is the same, but recurrence is lower with the bilateral...a little. Also, I did not want to stress over mammograms and mri's every six months. After the mastectomy, I had a non cancerous lump (can't remember what it was called), that didn't show up at all on anything.
Sol....I was halfway through chemo, telling my oncology nurse about the raw smoothies my husband was making me every morning with spinach, apple, blueberries, celery, etc. an older nurse outside my room about had a coronary. I missed the whole raw speech, apparently. My nurse was fine, as was my onc, as they said there are several studies that show it doesn't make a big difference, and my counts were ok. They did tell me to make sure I washed everything really well, and to avoid salads from restaurants from then on.0 -
Jennifer, I should also add that my husband was the same as yours. He said he would support whatever decision I made. I am not sure what I would have done if I was young. Do you know if it was in your lymph nodes?
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Camillegal-that is a tough one. I have no family...that is why i am so thankful for this thread...I am working on a plan for my kids if I choose the mastectomy. My husband told me not to base my decision on that...we will figure it out if we need to. He is pretty awesome!
Fluff-drs did an MRI and petscan and did not see any lymph node involvement. But, I guess surgery will tell us for sure?
Thank you for your response...I have developed fibroids in my breasts and think that will effect my decision. How will I ever know what is just a fibroid and what to worry about?
Sol- I had wanted a salad soooo badly! My dr said to make sure to prepare it myself so that I know that it has been washed and it would be ok...then I ate a cantaloupe a few days ago and heard about the salmonella scare and that was it for raw fruits and veggies:/ lol.
I just try to wash everything in a mix of white vinegar and water and I think it should be fine:)0 -
I just looked up the PB2 - looks like you can order it from Amazon.
tonlee - if you would like to run for office, I would totally vote for you, lol! I have not been eating dairy on my diet - or sugar (except for gummies!) or alcohol, or high sugar fruit - I have been eating lean, organic, grass fed or pasture raised beef, chicken and eggs, organic vegetables and high-fiber fruit. I feel better than I have for a while and have lost 10 lbs. - back to pre-chemo weight. It took me a year PFC to get here. I am stronger than I was a year ago but I do need to step it up, so I think I will be trying what you suggest, and the blood thinners are not an issue for me. I did the L-Glutamine during chemo, with Acetyl L-Carnitine and B-6 for anti-neuropathy, so I will just add it back in - have still been taking the Acetyl L-Carnitine and B-6.
jennifer - I can only tell you what my decision making process was - in no way would I tell you what to do - this is a very personal decision. I was also a lumpectomy candidate, and it was what my BS initially recommended. He was planning the lumpectomy with SNB and a port installation since we already knew I was Her2+ I was having chemo regardless, and Mammosite rads. My BS was out of the country for a couple of weeks prior to my surgery and I was not sure if lumpectomy was the right choice. I had 20 years of lumps, mammograms, ultrasounds, etc. and I felt that I would never relax if I left that much breast tissue behind. I could not tell a bad lump from a benign one. I have a friend who had a lumpectomy and had her bi-annual mammo while I was in the middle of making this decision. She got a callback and had to have an MRI - she was frantic and terrified - the thought of going through that every 6 months was enough for me. When I saw my BS again I told him I wanted to do a BMX - he didn't flinch and set it up. Even though I had pre-surgery MRI it did not show the two surprise positive nodes, and the ADH and ALH in the "prophy" breast. I don't have any regrets about having a BMX, even though I had healing challenges and recon issues, I would make the same choice again. Ultimately, it comes down to what will give you the most peace of mind and allow you to sleep at night.
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Jen, I can only tell you what I did and why I did it. I chose a BMX. My mother and her two sisters died of bc. Her sisters found it in one breast, missed it in the other breast and died within s year. My mom, was diagnosed in one breast, she insisted they do a BMX, and they found invasive on the side she did prophilacticly. Never did chemo or RADS cause they thought they got it all. So, my turn comes, you take them both, wasn't any other choice for me. Guess where they found my IDC? Yep, in the prophilacticly removed breast, sound familar? But I have done chemo, and Herceptin, my mom didn't get those, so I hope I have way more than the 10 years my mom got. so, thats the what and why. May you make a decision you can live with, much love.
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Yes, lumpectomy plus radiotherapy does equal mastectomy in long term outcomes for survival as kayb said. What I feel my doctors, and many doctors, don't tell you is that there are some quite significant potential long term side effects that can be caused by rads...
My initial reaction to diagnosis last year was that I wanted a bilateral MX and my surgeon talked me out of it based on my age and the whole "lumpectomy plus rads equals mastectomy" thing. Then after chemo I started researching what to expect from rads and found all these very serious potential long term side effects. They scared me so much I quit rads 12 days in mainly because I psychologically couldn't deal with them.
My research into rads actually made me realise that a high number of chest x-rays I had in adolescence was probably what gave me BC to start with. I found research papers describing women like myself as at high risk and I discovered that I should have been screened for BC from the age of 30 (I was 46 when I found my lump last year - they don't start screening women here until they are 50!).
I'm now scheduled for a bilateral mastectomy with immediate reconstruction at the end of September. I won't be going back for rads unless I end up with metastatic BC, in which case I told my rad onc that I would be happy to see her again.
So, before you settle on either decision make sure you know up front (haha) what long term side effects you will have to accept from either option.
Jenn0
