TRIPLE POSITIVE GROUP
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jstarling, welcome. You will learn so much here. The waiting game is the worst. I hated it. Feel free to ask whatever you want.
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Welcome to the club you never wanted to be in.
Ask away. Ask anything. I would have been lost without the support of the 3+ women in this forum.
Nervous and anxious are normal. So is crying.
Get a notebook and start writing down your questions for your Medical Team. Get a clean and complete paper copy of your pathology reports and all tests. I got a large three ring binder and kept everything in one place.
Here is a great reference from this site:
Your Guide to the Breast Cancer Pathology Report
www.breastcancer.org/cms_files/47/Breastcancerorg_Pathology_Report..Read what TonLee who started this forum wrote: It is "What I Wish I Knew At the Beginning of Treatment." http://community.breastcancer.org/forum/6/topic/797454
Remember this is YOUR BODY and you will have YOUR BODY when all the medical people are finished. Get what you want.
Don't let anyone touch you unless they have washed their hands. There's a reason most exam rooms have sinks.
If you haven't had a dental cleaning and eye exam recently, get one before you start treatments.
Do some sort of physical activity and do it regularly.
I did not waste my cancer. This journey has been life changing for me and my husband. I would not wish cancer on anyone but I would not take back this journey. I know that reads really strange but it is my story. I learned a lot about myself and my husband. I learned who my real family and friends are. I learned who I was also. I have become the person I always wanted to be instead of the workaholic I was.
That is something to emotionally prepare for. Not all your friends and family will be with you on this journey. Some people will say really stupid things. Some people will say nothing. My first Oncologist would tell me "I am uncomfortable doing (giving a Rx I asked for or a different treatment I found)." I am thinking I am the one with the mastectomies, chemo, whatever and this guy is UNCOMFORTABLE?
Make sure you are a "match" with your medical team. Decide who, medically, will run your treatment. My first oncologist wanted to run my show. We put my primary care in charge. If not for my primary care watching my thyroid and insisting my levels be checked regualry, my Rx would not have been adjusted. My first oncologist wanted to deal with it after treatment was over. And always remember you are in charge of you.
I blogged for about a year at www.leaderlines.net. You are welcomed to read my story.
Finally, be loving kind to yourself.
Vicky
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Jsterling welcome to the thread. We are here to help! So please settle into a.comfy chair and ask away if you need anything. I'm sorry you are here, and glad you are here, at the same time.
Chiming in on the recent topic here, all I can share is my own experience. When I started out after diagnosis, I "threw everything I could" at my cancer. I was scared out of my mind and had a 2 yo and 8yo. In hindsight, for me, I think I overcorrected for how I wanted to live my life.
I then backed up a bit. Stopped the Lupron, but kept the tamoxifen. Added Celexa, but sought counseling. Exercise, but things i find pleasure in at a pace I like. Changed my diet, but I still eat foods I love. Because for me, an existence where sex hurts, I eat nothing i enjoy, and I feel like a slave to my workout regimine didn't work for me.
My point is that I think we all have our own "water line". The point we won't go beyond, and that water line is different for everybody. And for me, my water line shifted. What I thought I was prepared to do to prevent recurrance has shifted over time. There were things i wasnt willing to live with, even if it meant recurrance. I didn't think that way at first.
Hugs to all.
Tres
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I am only kinda sorta posting here because I'm not sure which forum I'll end up under. You'll see by my signature that I had DCIS two years ago. Just got a dx of IDC on Friday on the other side. ER+ and PR+, but HER still undetermined, I think. I see above some "HER2+(FISH)"s--that's what my report was. The doc said HER undetermined until the FISH process is done (?). So I guess I might be triple positive or not.
Anyway yes I have some more questions for my BS and RO but I am wondering if anyone with IDC did NOT have the sentinel lymph node biopsy? I felt so fortunate last time not to have to worry about lymphedema, or even hormone therapy (I was ER- and PR- last time), but this time I'm sure it'll be 5-10 years of an AI. Ugh. My RO did not *feel* anything in the lymph nodes and my BS did not *see* anything suspicious on the ultrasound, so I am *hoping* there is no lymph node involvement and if that is the case, do they really have to biopsy the sentinel? I see women at the gym with compression sleeves and I feel so sad. . .
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Ingerp, I had a sentinel node biopsy for the second time, it came back clean. They told me they had a 50/50 chance of being able to do it the second time. They injected the dye the day before surgery and they could not pick up a signal that day but by the next days surgery they were able to trace it. Ask for a second sentinel biopsy it may work for you also. They took 3.5 nodes the first time for me and 1 the second time. I was prepared for the full axillary node dissection and had signed the authorization. Best of luck!
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Hi JStarling, it’s an overwhelmingly scary time. Nobody taught me how to deal with a life changing, traumatic experience. You’re normal for how you feel. You’ll feel many crazy emotions, and you’ll work through this. Everyone here is so helpful and filled with info and support.
Hapb, are you kidding??? I’m so sorry you had the power outage. One thing after another. I think you’re smart to look at all elements that could be affecting your body. I am inspired by your assertiveness in tackling those. And I also love the reference to all of us needing to find our water line...so so true.
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Hi, HapB Don’t currently live in New England but my son still does and he spent this weekend blowing away in Portsmouth. We lived for over 25 years in the same small town in Massachusetts before my husband was transferred down here to suburban Atlanta about 10 years ago. Never thought this Yankee would say this but we learned to love the south and are still here even after retiring a few years ago. So we head north to visit the grand babies quite oftenand are happy not to shovel snow!
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Hi, all,
So, while IHC gave me a Her2 rating of +1 (negative), FISH was definitively positive. I'm over 90% positive on E and P as well. And thus here I am. I'm a history professor and academic dean by day, and I was writing by night...but obviously I'm having to cut back on both. I had a successful lumpectomy last Wednesday (will get final results on March 13) that removed a small IDC tumor (about 7 mm) plus a lot of DCIS. Lymph nodes were clear. Right now, the tentative plan is 3-5 weeks of radiation and 1 year of Herceptin. The hard part for me is the treatment center is an hour north of where I live, and my job is an hour south. While it's easy to say "to heck with the job!" I'm the main breadwinner with a kid about to start college. So, negotiating working from home and figuring out how to schedule all this stuff is a big worry right now, as is the port placement (I have terrible veins, so I do want the port--I just dread another surgery). The lumpectomy went well, but it's the only medical procedure save one in my life where I've not had extreme nausea and vomiting. I have an excellent surgical oncologist who had breast cancer herself. I think once we have a clear plan, I'll be more upbeat.
As far as what caused this and what I can do...My Myriad 28 genetic testing was negative (though I have extensive family history, including my mother). I am overweight, but I walk every day (I am postmenopausal and have hypothyroidism and spinal stenosis, so walking is the best exercise I can do since there is no pool close by). I can't worry about "why me" or "what did I do to cause this." I can control going forward, though, and plan to continue my walking and eat as healthily as I can. (I barely wear any makeup, fwiw).
Hope everyone has a good week!
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This may be off-topic, but y'all seem like a good group to pose the question. I was reading about AIs this morning (at 3:30 while I was not sleeping!) and then also about foods that have been linked to lower estrogen levels (by inhibiting the aromatase). I'm strongly considering altering my diet and not going on an AI for ten years. Thoughts? (And HapB--I was without power from noon Friday to 7 PM Sunday. And I'm rural enough that we're on well water--no power, no water. It sucks!!)
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Jstarling - sorry you have to join our group but you will find amazing support, encouragement and inspiration from everyone here. Please ask lots of questions, we're here for you anytime. Trust in your medical team is a so important and don't be afraid to get a second opinion for peace of mind.
The beginning phase of treatment is overwhelming but things do get better over time. I am in a much better place in my life since diagnosis, both physically and mentally. The women in this group have contributed to helping me "get to the other side" of this cancer journey. You will too!0 -
Hapb, so sorry you're dealing with terrible weather and all the power issues! I hope the next storm coming your way is not as bad. We have snow coming our way tonight. I am done with this winter stuff and ready for spring.
Praying for good results on your echo this week so you can continue with the rest of your treatments. You have been through enough!0 -
There is a forum on BCO for lowering estrogen naturally.
There is also a forum for Arimidex users that are doing well.
Guess what? Had my eye appointment. Improved AGAIN!
Vicky
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coach -yay for improved eye sight.
Hap...is your power back on yet? We got lucky and didn't lose ours this time. We usually do. Scrambling to rearrange my Wednesday plans and meetings in anticipation of the next storm.
Saw my OB/GYN today. Checking FSH levels to see if I am truly in menopause now that I have been off Lupron for over a year. Even if i am...will stick with tamoxifen. It's working for me. I see RO tomorrow. I have no idea why he still insists on seeing me once per year. But..he does. Does anyone else still see their RO annually?
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Tres,
I still see my RO annually. He likes to check my skin to see how it's healed. Of all my doctors, he's the best educated about lymphadema, so I'm happy to visit. (His nurse took measurements before I did radiation, and he can compare them to where I am now.) He also does a manual exam. On the other hand, I never see my breast surgeon.....
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coachvicky--what is "BCO"? I'd love to see that thread.
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ugh...my FSH is in the normal range and not high! Must call the doc...but I think this means I am still premenopausal ahhhhhh!!!!!!!!!
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Hapb - I did all 17 rounds of Herceptin and Perjeta. I feel like a science experiment too but in a good way.....it's worth it if my trial can become standard of care in the future. I think that's a ways off though. I try not to obsess whether skipping chemo was the right choice but I had the best possible response with just HP so that's a positive in my book.
Below is the press release about the trial and link to the trial data. I don't see any results yet.
http://www.marketwired.com/press-release/cancer-treatment-centers-americar-midwestern-regional-medical-center-launches-neoadapt-2162863
https://clinicaltrials.gov/ct2/show/record/NCT02689921
Shoulder recovery is very slow going, thanks for asking! My body is not bouncing back as quickly on this one but I am making progress each day.
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coach, congrats on the vision improvement - that's a bonus!
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Hi! Taxol also took me down n kept me down. I had awful leg pain and just pain all over, but my legs oh my!!! My oncologist at that time only would allow me to take tramadol and it did nothing. I honestly don't think anything could take that pain away. I had the worst cancer journey. Leslie2016, I also found it hard to find anyone that had the extreme pain from taxol as well. If I did it anyone one can!!! Treatments are absolutely brutal to some, it was for me !!! I pray for a cure, everyone effected with or by this diease, and all other illnesses. God bless you all!!!!
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Thanks for the article, HapB.
It reads in part and I inserted my comments ( ):
"It governs your menstrual cycle (none), controls functioning of the ovaries (removed) and uterus (removed) and stimulates the normal growth and division of breast cells (removed)."
Really, how much estrogen could I be "naturally" producing?
I read in another forum about a urine estrogen test. I see my Primary Care in late March and he wants to discuss this.
Vicky
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Hi all, I have been out of this thread and even from BCO, was partly busy and partly depressed, I believe that Tamoxifen is to blame. I saw my cancer rehab councelor and the psychiatrist last week and after listening to me they said it they saw it too many times, i.e. Tamoxifen causing a deeper depression, so they always recommend an anti-depressive with it. In my case I got a new one they claim will help to control my appetite since I am trying to lose weight.
Still I felt like I was out of this thread for juast a few days but I saw I had several pages to read and spent two hours doing that while waiting for my MO appointment after my rads. I am so glad I have all of you. The councelor and the psychiatrist asked me whether I had any local support group and I said, no, they suggested a couple of groups and although I thought it may be a good idea I am still reluctant, it would be nice to talk to people but on the other hand I already have people to talk to, and from the very beginning when things look so awful and morbid, all of you who show support and kindness, I am so thankful, you have no idea.
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fluffqueen, I am so sorry about your nephew, this is by far the saddest thing I heart today. I was reading your second post and suddenly realized that my jaws were hurting and even my hands because I was holding my phone so tight without noticing it. I overall hate to hear when cancer affects children in any way but children who actually get diagnosed and must undergo these brutal treatments this is just so cruel and unfair, my sympathy to all of you and especially your nephew. Hug
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Posey, thank you for complementing my wig, I have not been using it so much at all because I did not go to work and it had been winter, still is here, big time(!), so I could go in hats, but when I actually wore it I almost feel normal and had my confidence back. And it looks so much like my own hair used to, it felt surreal when I had to take it off. My own hair are growing strong, I believe I will have a pixie by May.
About high maintenance bitch)))) I thought it was very appropriate but I cannot take the credits since I picked it up from 30 Rock I have been watching lately. It was used in another context but this show is just full of memorable hillarious quotes) Cherry
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cherry be careful with what anti depressant you take. There are very few that you can take when you are on tamoxifen. Effexor, celexa, and lexapro are your only options. The others interfere with the tamoxifen
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hi all good heart loving people
Am recently diagnosed Er pr her2nu positive BC
am scared hearing her2nu positive .
Is it aggressive and recur??
How many years I can live?
Plz plz reply
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moody, your experience is awful, I had to read it twice just to follow what exactly happened, I can imagine your anger and the tech’s frustration!
But, coach, you are hillarious! You made my day, you do possess a talent to say things that light up a rum, I wonder if you can say so in English and if it menas the same thing, i.e. the most witty, clever and kind thing everybody just needs to here, especially here, for my part, especially now
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Welcome all the newbies, I am so sorry you gad to join us, but you will never regret it, these boards is my lifeline. Another advice would be to join a chemo group that starts the month you begin your treatment, you will make friends for life
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I just saw MO, a planned visit to discuss everything that she had to say to me that always turns into a meeting where she has to answer alI the questions I have for her. I usually have a list with the stains of tea and fruits on it, she understands that I have a block note next to me where I write down things that I need to ask her. She is very kind but I see how she is looking at me even though she answers patiently. I wonder if she nicknamed me something like "barracuda" for herself. Today she basically had to kick me out, she was late for her lunch.
Anyhow, since I already had these questions on my list and red the discussion just prior the appointment, I asked her about the food and drinking emphasizing that some sources claim that we should cut on carbs, meats, diary, sugar and drinking alcohol to prevent the recurrence. And she said that there is no scientific research that proves that eating all these foods can cause bc and there is certainly no such research that proves that it can prevent bc or recurrence. We should avoid fat food and sugar, not absolutely, but significantly, drinking a glass of wine a day is absolutely ok. There is research that proves that high consumption of alcohol increases risk for bc but no research that proves that it causes it. Her nurse office also recommended strongly to buy the organic products, which I switched to since my dignosis, it has increased, almost doubled our grocery spend but I will try to stick to it. I also mentioned to her that the psychiatrist from cancer rehab told me that up to 2,5 bottles of wine a week was ok for women! MO's Dolly Parton eyes just got even bigger and she asked, did X say so? It does sound too much and I said, you work together, you ask her. I am treated in the most prominent academic royal hospital in Sweden, MO is in her 60-ies, she is a rank higher than a doctor, she is a consulting specialist, and she has good relationship with our chief professor who is responsible for the national guidelines for bc treatment who consulted me regarding my further treatment back in fall. This professor, according to MO, spends most of his time attending research conferencies over the world and then analyses the results. But MO strongly recommended to stay on Tamoxifen and go on with all my treatments and that they in their turn will try to do all they can to minimize the SEs, and then according to her my prognosis will be good. My exercise sounded very good to her too. And I got a mild deuretic. I did not even dare to ask her whether one could stick to the plant food, avoid alcohol, exercise like I get paid for it, and therefore ditch anti-hormonals, I would had never done it, one thing that she considers me a PITA and another if she would looked at me like I were an idiot.
My mom had a colleague back in 90-ies, beautiful lady, a husband and three boys, she got bc when she was 46. She told my mom that she wanted to try alternative treatments, whatever it was back then I had no idea, but she did not want to feel mutilated, to lose her female features and so on. Her husband got also diagnosed with stomach cancer at the same time and she said she needed to prioritaze him. He underwent the treatments and he lived, she died after some time, I do not remember exactly how long it took, I was not living there anymore, but we are talking probably a couple of years at the longest, her youngest boy was in his early teens, it was devastating for the family. My mom visited her in the hospital and she said she regreted very much that she did not do what the doctors offered her from the beginning.
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coachvicky--sorry--duh! I've been off BCO for about a year and a half. I'm a little behind on my acronyms!
And stupid, basic question. I see many posting who have what I think (hope?) will end up as my dx (IDC, Stage 1A, 0 nodes, ER+/PR+, HER2+). I get the Herceptin but so many of you are/were on Taxol too. I admit the idea of chemo scares the bejeesus out of me. If nodes were negative, why are you on Taxol?
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