TRIPLE POSITIVE GROUP
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kathec - find out if your local Y has a Livestrong program - it gets you 12 free weeks at the Y. You can use their personal trainers (Livestrong certified for exercise for cancer patients), their pool, group classes, weights, yoga, etc. I can get the Califia brand of almond milk at my Whole Foods - I like it too and I like the big container!
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ashla, that is great news, and i am gonna start sitting closer to the tv! Special k, i have checked and there is no y that offers it, within a three hr drive, so no livestrong program for me. i got my nuclesr bone scan imaging test results back today. was a simple report, and said:" there is no definate evidence of osseous metastasis. there are scattered foci of radiotracer uptake, in a pattern that suggests degenerative changes." "comparison to 7/16/2013." only problem, the first and only other one i had was well before treatment started, and was very detailed, talked about possible arthritis or inflamation in ankles(which has never bothered me) nodes and tumour showed up, and a lung nodule or two. no mention of any of those other places, and... on 7/16/2013 i was at the beach in ventura, and i can prove it, cause i won money at a casino! the amount that you have to fill out the tax form for, so, i dont know when they think they did it. i am just not trusting them too much, for way too many reasons.
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kathtec. I d wonder about it too. But it could be the date of the final report of your last scan instead of the day of the scan. You could check that. But some docs take a week or more to put the report in writjng. At least that's been my experience. They'll tell you the results fast but the paperwork may take longer.
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hey! moon! you have a saucy new avatar pix!
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I have a masters in nutrition (even though I don't practice what I preach), and my thinking is phytoestrogens in soy aren't great for us, so approach it with caution. At the same time, I don't think they are the worst thing in the world.
I think our big issues come from hormones in animal products, since many farm animals have these in their feed. Seriously, why can a 9 year old girl give birth to a baby (not sure if you all saw that headline)? Probably because her food is moving her into way early puberty. I didn't have my period until the age of 14...grew up in rural southeastern PA where the cows were cows, not super cows...filled with exogenous hormones. We are our own worst enemies.
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So I had NO IDEA that I didn't need to be avoiding soy sauce, soybean oil, and soy lechitin as they don't actually contain phytoestrogens! Just read that on Dana Farber. Wish I had read it earlier so I wouldn't have purchased the disgusting organic canola mayo. Also, it makes the chocolate that contains soybean oil totally harmless {well, from the soy perspective}. ;~) Although, I still think it's best to look for products that don't contain soy or contain organic soy due to the GMO factor.
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Guess we all just have to do our best.
Thanks Kathec! Saucy, hmmm. LOL I was in a crazy mood though! LOL
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Moon Sassy too.
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pbrain, I'm right there with you. No hormone-pumped-up food for me either.
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Pbrain, what do you think about flax seed?
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Well here I am and no offense but now where I would like to be but glad I found this group. I am 57 years old and just diagnosed with IDC in my left breast and the final biopsy report just came back and I am triple positive. Currently it is rated as a Grade 1 as it is less than 2 cm and had a score of 5 but I haven't had lymph nodes checked yet. To add insult to injury my breast MRI came back with a suspicous area in my right breast also - have mammos every year and they have been clear - found the lump in my left breast by accident. They did an ultrasound and biopsy of the second lump yesterday and will get the results Friday but my breast surgeon is concerned with what it looked like via the ultrasound - ughh. I am also diabetic - totally diet controlled - and not sure how this is going to effect that so if any of you are diabetic - i would love to hear from you. I will tell you all that I am scared to death - scared of the cancer, scared of the treatment, scared of my shadow lol. Once I know more I will try to figure out how to put all this stuff in my profile . Big decisions coming in the next couple of days - double mastectomy? lumpectomy, if the other isn't cancer, ughhh. First of many questions I am sure I will have for you all - If you had mastectomy with the triple positive - did you still have radiation after chemo? All for now - hugs and prayers for us all
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Linda of course u'r scared and everything is mumbled jumbled right now with now complete answers or plans. So u will know more and the Dr. will have plans I how to help u and it will become much more cler and some of the fear will leave, u'll be busy getting better. Right now just take deep breaths and know u'r Drs. will be there for u all the way and so will everyone here. This is a great group of women who have unbelievable knowledge---so when everything is clar from all u'r tests u will be more relieved, right now u'r body is jumping thru hoops.And u'r mind as well--It does get better. Warm thoughts going u'r way.
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it's all over the news but on the off chance you missed it Paxil...estrogen.. Be careful. Talk to your doctor .
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Linda, so sorry you are here but you will find a wealth of information and support. I am not sure how it will affect your diabetes, however, my aunt is insulin dependent, and one of the chemos she had for a bladder tumor sent her blood sugars out of control. They had to really watch her, so make sure they track you carefully.
Also, there is a study out there now that looks at metformin as a potential drug to help prevent a recurrence. I am not diabetic, but i take Metformin in the amount that is in the study. (I was kicked out because my tumor was under two cm and not in my lymph nodes-has to be one or the other). My doc knew of the study and agreed to prescribe it.
You have lots of info to process, and decisions to make, but once you do that and your plan is in place, you will feel better. I interviewed two breast surgeons, four oncologogists and had a consult with a radiologist just to make sure I understood my options, etc. I felt very good with my decisions and part of the team with all my docs.
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linda - welcome, but sorry you have to be here. Wanted to clarify on your grade - it has nothing to do with sizing, that would be stage - which is usually determined after surgery. Your grade is specifically determined by what the pathologist sees under the microscope. Each of three criteria (tubule formation, mitotic rate, nuclear grade) are given a score of 1-3, that score is added together and a final number of 3-9 is assigned. A score of 3-5 is grade 1, 6-7 is grade 2, 8-9 is grade 3. Here is some info from BCO on both stage and grade. As you can see it is problematic to determine stage prior to surgery - some docs will make an estimate based on imaging, but it is only an estimate.
Grade is a “score” that tells you how different the cancer cells’ appearance and growth patterns are from those of normal, healthy breast cells. Your pathology report will rate the cancer on a scale from 1 to 3:
- Grade 1 or low grade (sometimes also called well differentiated): Grade 1 cancer cells look a little bit different from normal cells, and they grow in slow, well-organized patterns. Not that many cells are dividing to make new cancer cells.
- Grade 2 or intermediate/moderate grade (moderately differentiated): Grade 2 cancer cells do not look like normal cells and are growing and dividing a little faster than normal.
- Grade 3 or high grade (poorly differentiated): Grade 3 cells look very different from normal cells. They grow quickly in disorganized, irregular patterns, with many dividing to make new cancer cells.
Cancer stage is based on four characteristics:
- size of the cancer
- whether the cancer is invasive, or non-invasive
- whether there is cancer in the lymph nodes
- whether the cancer has spread to other parts of the body beyond the breast
Here is a link to the more comprehensive section on BCO regarding stage:
http://www.breastcancer.org/symptoms/diagnosis/staging
On the question of radiation, it is dependent on nodal status and proximity of the mass to either the skin or chest wall, and/or the size of the mass. Having a mastectomy does not necessarily eliminate the need for radiation.
I know a couple of people who had diabetes and breast cancer simultaneously. There are sometimes issues with the required drugs, particularly during chemo, and specifically the steroids which often increase blood sugar. This is something to talk with your oncologist about.
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"new" Linda, ditto what SpecialK said. I had left breast modified radical mastectomy, chemo ,herceptin, radiation, and aromatase inhibitor. My tumor was large, close to the skin and chest wall (upper, outer quadrant), and 5 cancerous lymph nodes, which was the reason for rads! Almost 4 years from diagnosis, and MO evidence of disease. Good luck, prayers coming your way!
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Linda505. It's normal to be scared shit-less. We all were. This is the worst part. Fear of the unknown. I have yet to meet a woman who says anything different. Don't assume you will die. Sounds like you are getting good care.
If you are HER2+, which you are you will be getting chemo with Herceptin given the estimated size of your tumor. Granted they will test everything again so your real stage and biology will be after surgery if they do that first. Sometimes things change. You will also get some kind of hormone therapy for at least 5 years. BTW it will be 4 year since I was diagnosed this June/July. I'm just fine with no cancer.
Yeah I too had one of those "we see something in the other breast on the MRI." I was told all 3 spots would have to be biopsied every year but my BS was really concerned about one area. We didn't even bother to biopsy. We both felt BMX would be best. That one spot ended up being LCIS, pre-cancerous. Given that I had IDC in the other breast standard care would have been to remove both. There are many different reasons why you might need radiation even if you have no node involvement. Depending on the locations of the tumor, size, etc. Typically tumors over 5cm get radiation. I was in a gray area and my rad onc gave me a pass. I believe since my tumor was located in the posterior region and I am small framed I'm sure they were worried about hitting my heart and lungs. Risk wasn't worth the reward.
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Thank you all for your kind replies and information. I really appreciate all the info I can get at this point. Will update you all as I get new information and I am SURE I will have plenty more questions!!
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linda505, welcome, and sorry that you are here, but i am so happy for you that you found BCO so early in the game. These women here are a wealth of information, and just plain supportive, and even extremely just plain old funny at times. You will find that they have done the most rigorous research, and know what they are talking about(except for camillegal, who doesn't do any research, but who has the biggest sweetest heart, and who is unintentionally funny, everyday, and whom i love for that!) and you can depend upon what they have to offer. the really good thing about your pathology, is that there are many good weapons against that particular type you have. these women on BCO, are truly amazing, and i thank my stars for them, every single day.
anybody giving up anything for lent? i never have, before, as i really dont attend any church, but have episcopalian friends that i love very much, because they let women be ministers, and gays ARE included, so i have tremendous respect for them for that. so i am thinking i will this time, as it might help me to break a bad habit i have....
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Linda 505
lots of great info from the other girls as always. Just want to say hello and welcome to the forum
You will get through this just as we all did....:)
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Fluffqueen,
That's very interesting about metformin -- something I actually had not heard of. So, you and your Onc felt comfortable going for it with the information presently available? After seeing your post and doing my own research bonanza, I do believe it looks quite promising.
Definitely something to go over with our oncologist. With the current clinical data, doesn't seem like it would be too difficult to get it as an additional adjuvant therapy (along with herceptin and tamox). It's too bad we wont know the full results of the clinical phase III trial until around 2016!
And Linda,
You're in a good place and know that being triple positive means you have the most treatment options and therapies available to you. Being Her2+ is not a negative prognostic indicator anymore (these days I hear doctors throwing out that it's almost preferred due to the many targeted therapies availble to us). You'll be fine!
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Hi everyone---Kath somehow what u said came out really sweet. LOL
OK big decision here I won $4.00 on the power ball----do I fully retire?, share my winnings? or put them in some type of special account? I don't want to get a lot of media reporting on this to many people would be asking for money--so please understand I'm not sending anything to anyone.
OK now Lent--hmmmm being, well, Catholic, Lent is very important, but I learned yrs. ago anything I give up lasts only about a week or I'd give up things like sardines or guns so that's not a big sacrifice--so over the yrs I have decided that adding to someone's life to make them a little happier or just giving of something is what I do--I know I make my own rules but my thought process took many years to put it together. And since I get no more beads for lifting my shirt, nobody wants to see a deboobed woman--Oh I found out,--I feel like I really gave something up too. So in my rulebook that counts too.
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Cami ~ With the winnings, I think your wisest bet would be to retire to that private island we all dream about, it's the only way you are going to escape the fame. I think your chances of keeping this from the media are slim to none at this point. People will be knocking at your door for handouts by sundown I suppose.
As far as lent. I'm not catholic, or any religion really, but I think maybe giving up googling and reading things that put my soul in a bad place would be good for me. However, is lent supposed to be about giving up something that you WANT to do? I don't want to google and worry, but I suppose I derive some perverse kind of satisfaction from it, maybe, or why would I do it? I don't know.
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Yeah! funny, twinmama! you do have to actually like it, but i have to say, i LOOOOVE Cami's answer! she is cracking me up so bad, my man is gonna have to come in the room and clean me off the floor with a broom and a dustpan!
Moonflower, also, the only other nuclear imaging bone scan i ever had, was waay before surgery, in 2012, as part of my staging. and i am wondering, how many of you have ever had a pet scan following treatments? especially any of you that are stage lll?
it's a long story that can be found on the hermits thread on page 210, it is really unbelievable. i tried to get over it, but when i just saw my breast surgeon last week as a follow-up for some "bumps" i just had them biopsied, long story short, i was ready to sue the pants off her. as it is, i fired her when i read what she wrote about me on my medical reports, and am still so angry. i mean , effin Angry! so, today, i started the grievance procedure against her. and am so relieved and happy that i will never have to see her again.
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and cami, what you gave up was extremely precious.
and maybe you should re-invest that four dollars. ;0
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linda505, welcome and so sorry you have to be here. What Fluff and Lago said.
I am a med controlled diabetic. Chemo was rough for me the steroids made my sugars jump up in the 500's. But my Primary doctor thought since it was for only 4 days a month to let it go. So NO insulin for those days for me. I am also on anti inflammatory pills and blood pressure pills. The latter only happened after my BMX. But the combination of BP, anti inflammatory, and chemo put me in acute renal failure. Now, if you are on BP meds or the anti inflammatory stuff, Talk to your primary about the interaction. You can pm me if you need to know exactly what I was taking. Hopefully you won't have a problem because they are now aware of this action. I didn't want to scare you but to help you avoid a stupid thing!
Cami, wow! You will have enough to think about a vacay! LOL
About lent. I was raised Catholic although I have parted ways for many reasons. But i was taught that it should be "loving sacrifices" so not eating candy was not really much of a sacrifice but taking the time to donate candy to the food pantry instead of buying it for myself was a much better sacrifice. So i kind of think of that as a really good thing to do. It makes sense of something that is hard to understand. After we have all our life to improve ourselves so use this time to do something extra and something good is the best use of talents time and funds. Well that's my take on it.
Much love to all.
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Camillegal
Have I told you lately how much I love you?
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kathyec
Wow... You've piqued my curiosity. What happened? What did she say? How did you see what she said?
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Why is it you only can b on hormonal for10 years?
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Welcome New Linda, and ask away. We were all bewildered at your stage and this board is truly fantastic. And to reassure you, while being triple positive definitely brings chemo, it is also a big blessing because it is almost curable. I had a nurse give me a high five in the clinic when she asked about my hormone status and I thought "wow, how weird is that?" because I'd always heard her2 brings a death sentence. Now, it is celebrated.
I work for the company that makes the targeted her2 therapies, so I can help answer questions on herceptin and the newer drugs, Perjeta and Kadcyla.
And most importantly, right now just stay still, like a little bunny. Don't think too much, do too much imagining, don't do Dr. Google. Wait for the information to come in which it will. Does your healthcare system have nurse navigators for breast cancer patients? Mine is a saint and I'd follow her anywhere she went. She is such a big help even this far out from treatment and diagnosis.
Oh, and MRI has a ton of false positives. My friend just had a lumpectomy from a finding on MRI and it was totally benign. They were sure it was cancer, didn't even biopsy. You'll learn more as you go and you have a choice in your treatment. I recommend asking your breast surgeon (or surgeons, if you want to meet with a few) what they would chose to do if they were you. Mine suggested lumpectomy, and I've never regretted it.
But definitely, we are here for any questions! None are dumb.
Ashla, my Ma told me about Paxil last night. I don't know what to do...it is the only thing that has helped me with anxiety, which has steadily grown worse since my 30's. I've tried Celexa and Lexapro before and they did nothing. I think they'll have to pry the Paxil out of my boney white hands.
And check this out...ta da...Saturday will be 1 year post final chemo and I feel almost 100% like my old self...a few too many pounds...still can sleep for 12 hours straight, but yeap, feeling good!
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